JOURNEY OF MR. GEORGE GOSS FROM THE VERY BEGINNING:

Saturday, December 19, 2009

Christmas Market Saturday

First note. . . . Allan, thanks so much for your call. Sorry to hear your team didn't do so well. Maybe you should pick em' better! Anyway. . . nothing that a good glass of wine can't fix, huh?

So first thing Saturday morning I walked over to the hospital to get my second daily dose of Kepivance at the outpatient clinic. Sunday morning I'll have the third infusion and then they can remove the catheter from my arm so I can take a proper shower without worrying about getting the bandaging all wet. Small pleasures.

I'm also very glad the hospital is less than a ten minute walk over. I usually take a shortcut through a small park on the clinic grounds. With the thin layer of snow, it's a welcome change to the daily sunshine grind in California. . . .

o I'm not going to pull any punches here. Today has been quite a cold day. It's a cold minus -9C and feels especially cold if there is even a small breeze. Almost froze my schnutz off. Yuko. . . bring gloves. And also a scarf. If you have an extra warm jacket, that too. And a hat wouldn't be a bad idea. And toe warmers, yup. And if you want to bring a few chemical hand warmers. . . well you get the idea. Luckily it's always warm inside, regardless of where you go here in Heidelberg.

The clinic usually has normal business hours (8-5, M-F) but there are still a lot of people on a rigid schedule (like me) that require a specific treatment outside of normal business hours. Seems like cancer doesn't follow the business clock. I was told to just go directly to my treating nurse during off hours. I'm sorry to say that I have forgotten her last name. It is usually rude to immediately address people by their first names in Germany because the society values a certain level of polite formality. But this very nice nurse insisted that I call her by her first name, which is Meike. Here is a picture of Meike on the right. . . .

Basically she runs the outpatient facility and provides very nice care to all the patients here. The outpatient facility consists of five or six separate rooms that have specialty treatment chairs that line both sides of the room, like this one (I took a picture of an empty room since I thought it would be rude to take a picture in the full room of patients where I am treated). . . .

fter getting my Kepivance infusion Meike wrapped up my arm again and I headed back to the apartment. I'm just spit balling here and can't be 100% sure but I am an observant person, you know. While walking out the main hospital door I was surprised to see 'possible' evidence that someone may have smoked nearby. Yuck! I would think that a hospital would have a 100% ban in a place like this. Well, eventually, I'm sure. At least they make the smokers additionally suffer by standing in the liquid-Nitrogen temperature weather to have a fag (yes, that's British English for "cigarette!"). Hey Frank. . . you weren't visiting here recently, were you? I'm going to do a DNA test to check.

And then let the Saturday (my last Saturday for a while) begin! . . . When I came back to the apartment Judy had invited her good German friend Caroline over. Caroline lives less than an hour away toward Frankfurt and previously spent a year in the California Bay Area. After an hour of topical discussions on global warming, politics and car repair, she graciously offered to both take us to lunch and also swing by the Christmas Market.

Another important side note to all my eligible bachelor friends. . . . Caroline is available and a great catch for a decent guy willing to be a gentleman.

Like most German drivers I noticed that Caroline has superior driving skills compared with the average American. Although that Is not saying much, Caroline can parallel park in one move. I love that and she has my undying respect!

We parked on the north side of the Neckar river at the Karl-Theodor Bridge directly across from the East end of Heidelberg Old Town. This is a pedestrian & bicycle-only bridge. Very nice walk (but almost froze my ears off). . . .

. . .I find the row of riverside buildings very nice and scenic. And entering old town from the bridge is like entering a castle. Pretty cool. . . . .

Carloline first took us to a very nice restaurant that had a very delicious menu where it's not just all schnitzel and pork brains. And as we usually find, the serving staff are friendly, helpful and very nice. I hope that Judy will be able to take Yuko here while I'm tied up with other things. . .

Following lunch we went out in the central old town plaza area where the Christmas Market is located. So much nice architecture.

And in the plaza area this building is reported to be the oldest hotel in Heidelberg still in operation. It was built in 1342.

We were able to take some time to walk around the Christmas market where you can buy many Christmas-oriented trinkets. They also sell mule, a heated spiced red wine. We didn't stop for any however. It was so darned cold we decided to stop at an inside coffee shop to get warm.

Later we stopped at the restaurant at the apartment and had some snacks. I have to very sincerely thank Caroline soooooo much for taking us out today. Otherwise I'm afraid that I would have missed the best that Heidelberg has to offer. I won't get another chance to see these wonderful sights until the next time in the future I return to Heidelberg. Thank you Caroline!

I'm going to depart a little from all the good feelings I gathered from today's great activities and return to something I witnessed this morning while waiting in the hallway at the outpatient clinic for my medication to arrive from the pharmacy. As I was sitting there a German couple passed by me headed toward the end of the hallway near the windows. The couple was perhaps in their early-to-mid fifties and obviously husband and wife. The husband clearly had been through I stem cell transplant to treat some form of cancer, having no hair from the chemo. When they reached the end of the hallway they spoke at length to each other and the wife was quietly, but noticeably crying. And although I can't understand German, it was obvious to me that the husband, speaking in a very calming tone, was trying to reassure his wife. So they wouldn't notice, I very quietly snapped a picture without the camera flash. A few minutes later when I went in to receive my infusion I asked about that man's condition and was told that the stem cell transplant was unsuccessful to cure his cancer. And knowing that stem cell transplants are usually done on people that will otherwise die from their cancer, it doesn't take a rocket scientist to know that he will likely not survive his disease. (Click to enlarge):

The reason I tell this story is to keep my life in perspective. Yes this stem cell transplant and associated chemo is a very serious (and a little dangerous) treatment. But I'm not otherwise going to die of cancer and in general my overall risk of complications is not terribly high. Overall, my life is good. I have a beautiful wife and son, great friends (many of whom are reading this blog!) and get to work together with great professionals that I enjoy being around (go PlasmaSi !!). I'm a lucky man to be able to receive this potentially curative treatment for my MS and I also hope that (especially during the holiday and New Year season) that you will also appreciate what you have. Not everyone else in the world has it as good as the rest of us.

So it was nice to go back to the apartment and see "our" Christmas tree. Reminds me that sometimes small things are all that I need.

Sunday, December 20, 2009

Getting ready for hospital check-in

Not much happened today. Calm before the storm. Primarily resting up for the hospital check-in tomorrow (Monday) morning.

A short video clip. . .

Monday, December 21, 2009

Day -8 (Hospital check-in & catheter insertion)

Today the hospital called me at about 10:30am. I then walked over to the hospital together with Judy and checked in around 11:30am. We met up with the nurse and she gave us a tour and explanation of the Ackermann ward. We quickly saw the hospital room where I will be staying and met my new hospital roommate. His name is Jergen and is closer to the end of his stem cell transplant recovery, as opposed to me where I’m still at the start. I’ll send pictures of the room on a future post. The main thing regarding the hospital stay is that it’s a little like 6th grade camp. The admitted patients are expected to follow a specific schedule (daily weight check, blood tests, medication timing, eating times, etc) and also expected to bus your own food trays and change the bed linens twice-a-week. So patients here are not babied. Everyone has to pull their own weight. No exceptions (unless I might have a problem walking at some point. Then they’ll step in and help.)

So first thing after getting the tour and lay-of-the land, I sat down with Dr. McClanahan to review the treatment plan and schedule. I spoke with her regarding my receiving this stem cell transplant for MS. This will be her first time treating someone for an autoimmune disease (even though it’s exactly the same protocol as cancer), and she agreed with the basic science of the treatment (same as Dr. Raab, Dr. Thalheimer and Dr. Hundemer). It seems that the only people that disagree with the treatment for an autoimmune disease are the very people that SHOULD be supporting it. . . clinical neurologists.

It became very clear very quickly that Dr. McClanahan is an excellent and capable practitioner. Her extensive experience is the key to keeping my treatment and prognosis of recovery to plan. In the afternoon we went to a special room with ultrasound to perform the procedure to insert the jugular catheter (it's actually called a Peripherally Inserted Central Catheter, oR PICC) that snakes down close to the heart so that the chemo drugs are dispersed equally throughout the body at the same time. Dr. McClanahan, who performed the insertion procedure, is also a good surgeon. Following the catheter insertion I went down to have an x-ray to make sure it went down the superior vena cava vein near the heart, stopping about 2cm short of the pulmonary valve. I also saw the x-ray and it is exactly on-target! Dr. McClanahan made the whole procedure much easier on me than I was expecting. I now have an insertion and sample port connected to my neck. Very convenient for chemo, saline drips and blood draws. They plan to remove it following chemo so a potential source of infections is eliminated following the ablation of my immune system. And although it looks uncomfortable, it doesn’t bother me. In fact, it’s surprisingly able to move with my head & body.

The chemo will begin tomorrow (Tuesday) so that the drug delivery from the pharmacy can be properly timed for the remainder of the week. The timing of the chemo drugs is as critical as the administered dosage. So the schedule is to administer the BEAM drugs per the following:

B Carmustine (BiCNU®) - Tuesday only - onceE Etoposide - Wednesday, Thursday, Friday, Saturday - twice per dayA Cytarabine (Arabinoside) - Wednesday, Thursday, Friday, Saturday - twice per dayM Melphalan - Sunday only - once

Then Monday will be the pause day (-1) without any chemo followed by the stem cell infusion (day 0) on Tuesday of next week.

There are a lot of other details of what is going on here that I’m sure might be interesting to some of you. I’ll post some more of these details when I fall into the routine around here and really figure out everything.

Big news for me. . . Yuko will arrive tomorrow (Tuesday) evening. I haven’t seen her since I left for Germany three weeks ago. I can’t wait to see her.

And very important. . . . . continued huge “thanks” to Judy for sticking around to help me (and soon, Yuko)! This would be soooo much harder without her around. Thanks a million Judy! (Although, I bet she might be happy to have my lazy butt out of her hair!).

Last thing. . . a short video of someone I’d like to introduce to you. . . . .

Tuesday, December 22, 2009

Day -7 (First day of chemo)

First note: Johannes. . . .Thank you so much for your call today. I really appreciate hearing from you. I'm glad Tahara-san could hook us up. (BTW. . . are you sure MTSN is a great stock buy right now? Can I really make 350% on my money in two years? I'll go out and buy up 500,000 shares right away. Even though everyone else is telling me the stock is a dog. All because I trust you so much!)

Also, Yuko arrived today from Japan. We spent some time together before she had to leave to go eat something. I have implored her to go see the Heidelberg Christmas market tomorrow because it's last day open and if she doesn't see it with Judy tomorrow, then she'll miss it completely. I would be disappointed if that were to happen.

Onto the hospital adventure. . . I'm rapidly understanding and getting used-to the routine around here in the Ackermann ward. Another few days for Yuko and I and we'll have this things down pat! I explored the Ackermann ward little kitchen station a little more. They make available a few snacks and the German equivalent of "Ensure" nutrition drink. That'll come in handy when I get mucositis. They also have a lot of sparkling water for the patients to take and drink at their own convenience (just like the other items). The medical staff told me that sparkling water primarily provided because it is likely to have fewer included pathogens as opposed to ordinary bottled water. But yuck! I hate sparkling water. I have to make it go flat before I drink it which is a time-consuming process. So I have to plan ahead if I want water. However, today I discovered the "other" refrigerator and they also have coke. It's not my favorite, but I like it more than that sparkling water crap. But to make things easier, today Judy brought for me several bottles of carbonated juice drinks. And a couple packages of cookies, too. I just discovered that she brought wafer cookies. My favorite! I love wafer cookies! Thanks a million, Judy!

Last night I went to sleep around ten thirty, or eleven. Slept well until seven this morning. My roommate, Jergen and I have similar sound emanations. So sleeping is no problem, we don't disturb each other during the night time. However, looks like every night at 11:00pm and then 4:00am the nurse comes in to take Jergen's blood sample. Probably they will do the same to me sometime after day 0. The nurses are quite considerate and I barely notice when they enter the room to take blood or give IV medication. They always turn out the lights when they quietly leave the room so we can continue sleeping.

Today my roommate Jergen is at day +19. Still within the outer range of the statistical norm for engraftment recovery, but still it's significantly longer than most on average. Somewhat unusual I believe. I hope that I will have indications of successful engraftment (rising neutrofils) by/before day +12 or +13. [Post transplant note: Signs of my successful engraftment manifested at day +9. Excellent recovery!] If Jergen goes much longer without signs of engraftment, I'm not really sure what steps the medical staff will take next. I wish he and his wife (who has faithfully been here every day, most of the day) the best possible outcome.

Because Jergen was here first, and much longer, I consider that he has squatter's rights. So he got the window position that automatically comes with a nice big shelf where he can put many of his things. He even put an X-box game console there! (He said his son kept the Wii for himself.) He's such a good roommate that I almost hate to see him get better and leave. Who knows what the next guy I get as a roomie is like. Maybe he snores the roof off! I think I'll clamp off Jergen's IV lines tonight after he falls asleep. :-)

And as a side note regarding visitors. . . ALL people must use the liquid alcohol hand sanitizing lotion (dispenser mounted at each room door entrance) prior to entering. This applies to both the patient rooms and the small ward kitchen area. Although not specifically prohibited, I am going to opt for no hand-shaking or touching of other people (Yuko accepted, I can't hold myself back).

And of course I have the nearer bed. Perfectly fine for me. It's closer to the bathroom (which I'll explain in a second why this is important), and beats the US Navy submariner's situation where they have to "hot bunk." That's where the space is so limited on a sub that there are fewer beds than sailors. So some guys have to sleep in a bunk while others are on-duty. At the shift change some guys jump into a bunk that is still warm from the previous sleeper that was there just a few minutes earlier. Darn! That would seem to me like sitting down on a warm toilet seat. Kinda creepy!

The bathroom is perfectly adequate for two people living in the same room space. I have additionally been instructed to clean the toilet seat with the available large alcohol wipes provided next to the toilet prior to each and every sitting use. I think that's pretty understandable. I should probably get a bucket of these for our home.

I wake up at 7:00am when in Germany it's still pitch black outside. Then I go for my shower while Jergen is still sleeping. Works great, although I try to be careful to keep my neck bandage dry.

So after I got up and showered at 7:30am I went out and weighed myself and reported back to the nurse while she recorded my BP, pulse and temp. She then gave me my five morning medicines (which I assume I'll take every day so long as I get them down), as follows:

Emend / Aprepitant – Anti emetic (nausea) Kytril (Kevatril) – Anti emetic (nausea) Fortecotin (German name) - Dexamethasone (US name)- Anti-emetic (nausea), anti-edema Pantazol – Proton pump inhibitor used to prevent ulceration of the esophagus from chemo Alna Ocas (German name) – Tamsulosin (US name) – For BPH

And as Dr. Raab had previously alerted me, the head of Heidelberg's entire bone marrow / stem cell transplant program (Professor Anthony Ho) came by with an entourage of about six or seven other doctors. I was immediately able to make a connection with Prof. Ho because he previously headed up the entire bone marrow transplant program at the University of California, San Diego (UCSD), my alma mater and hometown. He was gracious enough to pose for a picture together with me upon request.

In addition, Prof. Ho, same as all the other Heidelberg doctors (except the neurologist) also agreed with the foundation of valid science behind utilizing a stem cell transplant for a curative effect of an autoimmune disorder such as MS. As far as he knows, I am the first person to be treated for MS under his department leadership, validating the still-uncommon nature of the treatment outside of a trial. Prof. Ho is aware of the phase II trials in the US, and even personally knows several of the key researchers in the field such as Dr. Richard Burt at NWU. He also agreed with the basic concept of my hypothesis that a totally & fully myeloablative therapy (of which I am receiving here) may be better than the lymphoablative therapy that Dr. Burt has been developing. The main development is that Prof. Ho said that they are getting Heidelberg's mortality rate consistently toward 1% ! So in the end it may turn out that all the work that Dr. Burt did on the lymphoablative protocol may be of little added benefit. Time will tell, though.

Then around 11:00am I started my first single dose of carmustine (brand name BiCNU) of the BEAM protocol. So I already mentioned about melphalan being the nastiest of the chemo drugs. Well this drug, carmustine, is the second nastiest of the baddies. Like melphalan, it too is an alkylating agent derived from earlier mustard gas weapon technology and it still beats me as to how they figured out in the 1960's to adapt a weapon of war as a viable medical treatment chemical. It has a slower myelo toxic reaction with bone marrow compared with Melphalan, but when it kicks in it really annihilates the bone marrow stem cells. Exactly why I'm here. So it's OK.

The machine that utilizes a monitored drip IV infusion looks like this. . . .

Now I gotta tell you. This machine is great. It can simultaneously administer two measured-dose chemicals, and also a regular drip saline solution on top of it. But here's the best part about this apparatus. . . It plugs into the wall to run on AC power. But with all the combined chemo drugs and extra ample saline solution going into my body that over several hours of chemo infusion I often have to pee every 10 minutes (that isn't a joke!). So I can simply unplug the unit from the wall and it automatically switches to internal backup batteries to operate. I'm not sure how long the batteries will last, but I think it's quite a while. Perhaps a couple hours. The important thing is that I can wheel the IV pole cart (which is on casters) to the bathroom with me and take care of business! I also can take it outside and walk around the ward if I want. Nice unit made by Braun. Guess they make more than just nice shavers.

So the nurses handle all the basic (but still critically important) stuff like IV's. But the chemo drug is administered by a slightly higher level person. (Perhaps they like to follow a more formal protocol for such dangerous chemicals going into someone's body?) The ward intern is Herr Sun. He grew up in Germany, but his parents are from Taiwan. So he speaks perfect mandarin. I think we got some connection when I told him I used to live in Taiwan. His next step in a couple of years is to begin his residency here at Heidelberg University Hospital (he told me this is the place that is widely regarded as the number one medical facility in all of Germany, perhaps even in all of Europe. So long as you don't ask any French people). He will be a full fledge doctor in just a few more years (I almost wrote "tears." But I think its the same thing). BTW. . . like all doctors here, his English is perfect. The nurses generally don't have "perfect" English, but is instead completely adequate for efficiently interacting with, and managing the patients.

So he brought in the carmustine drip bag (with a UV light shield protector bag on the outside). Just a little over one liter and adjusted the pump to infuse 450ml per hour together with Saline solution at 50ml per hour. Exactly a 9:1 ratio. Interesting.

So I could sit on my bed and get the chemo. Go to the toilet every ten minutes. Repeat. About an hour and a half in I a had a sudden onset of headache, what felt like pressure in my eyeballs and a completely new effect experience where my gums (and only my gums) started burning. Dr. McClanihan infused me with some antihystamine and had me take an acetiminophen hypothesizing it was a possible allergic reaction to the chemo. We then finished the bag of carmustine. She must have guessed right because I felt completely OK after about an hour and a half, to two hours later.

While Judy was in the hospital room visiting with me judy got to meet one of the two very nice ladies that maintains the sanitary conditions of the ward (a VERY critical job), Her name is Mercedes, born in the Phillippines. (Does that mean if she were born in Germany she would have the name Daimler?) Anyway, Mercedes is extremely nice and invited Judy over to her home for a nice meal sometime over the next couple of weeks. How wonderfully nice! She will definitely be getting a box of Yoku Moku cookies.

And then at the end of the day the nurse came in and changed all the adhesive bandages that keep my jugular catheter in place.. She did a very nice job. It now looks like I have decorative tassels hanging from my neck.

More tomorrow when I will be receiving four doses (more than 4 hours total) of both Etoposide and Cytarabine.

So this is an important last note regarding numerology. And I didn't tell Yuko about this before she left Japan but the number of the room is "4." In Japanese the sound of the number four (Shi) also is the same sound of the word "Death." This is why you never see buildings in Japan with a 4th floor, nor will you ever see a hospital room in Japan numbered 4. Hope she's not freaked out by that. Anyway, actually my favorite number is the number four. When I was in cub scouts I won 4th place with my pine-wood derby car that I also numbered 4. So there's gotta be some luck somewhere with the number! I think it will pull through to the end.

More next time.

- George

Wednesday, December 23, 2009Day -6 (with updated schedule)

Current (and more complete) schedule (click to enlarge). . . .

Posted by George Goss at 12:10 PM 0 comments

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Thursday, December 24, 2009

Day -5 (Christmas Eve)

Quick message including mention of my good friends at Mattson . . . .

So I'm able to follow a pretty regular hospital schedule now. . . . Wake up around 7:00am (still dark outside), shower (thanks to Yuko and Judy for the liquid body soap from the store, it's great!), dress and then go weigh myself and then get the usual morning tests from the nursing staff. They always ask if I feel any nausea from the chemo. Nothing yet. Can still eat well (the hospital food is far better than I expected. And better than any airplane food I've had). Maybe next week things will change with the nausea. Who knows. Everyone responds differently from chemo. I'll keep my fingers crossed.

Then I get my two infusions of chemo (Etoposide and Cytarabine) starting at 8:00am. Together with the saline flush that follows it about a three hour process. I repeat the same thing at 8:00pm. I usually make it to sleep about midnight. Yuko will stop by again later today and we can go out into the quiet hallway of the main hospital and talk junk behind people's backs. (No! We would never do that. Well, Yuko would never do that.)

A few things are becoming apparent . . . the first thing is that I am currently gaining weight. I've gone up 5kg and now total 70kg (154 lbs now but started at 143 lbs). I think this is a direct consequence of the anti-emetic steroids I'm taking to stave off the nausea that causes fluid retention. I'd rather take the weight gain over the nausea any day. I hope it lasts through the treatment, but that may be wishful thinking. But even if it doesn't last there are many more options of various anti-emetic drugs remaining in the arsenal. May have to try a few others next week.

The next thing is that my systolic blood pressure for the past couple of days has been hovering around 140, quite high. My BP has never been more than 120. Again, this is most likely a direct consequence of the steroids I'm taking. After the treatments are over and I get off the steroids the doctors assure me that my BP will return to normal.

Also not (yet) a big deal, but I’m starting to feel some tissue roughness on the roof of my mouth. I suspect this is an early indication that mucositis is on the way. I’m super grateful that Dr. Raab authorized the Kepivance (Palifermin) prior to the chemo. If I do get mucositis then it is likely to be far less serious that it might otherwise be. Somehow Yuko and I will have to find a way to repay him for helping me tackle this early on.

Yuko and I spent time together today and she got to meet my new Japanese roommate, Tateishi-san, along with his wife, brother and father. (Cooincidentally Tateishi-san and I are the same age, separated by just a few months.) Tateishi-san has multiple myeloma (he gave me permission to mention this) that was first treated with straight-up chemo. That turned out to be a failed treatment, hence then moving onto the more aggressive stem cell transplant. I’m sorry he has to go through two rounds of aggressive chemo. Kawaiiso desne! But he has an amazingly positive attitude for having to face such hardship. Today Yuko and I met his wife and we saw pictures of his two children, ages 8 and 1. Unfortunately (or fortunately) they don’t let children in the ward due to the high risk of infection. Same reason Riki is in Japan with the in-laws.

I think Obaachan (grandmother in Japan) is doing a great job to take care of Riki. I have no idea yet how we will repay her and the family for their kindness and endurance to do the critically important task of caring for Riki while we are here in Germany. I suspect fine California wine will somehow be involved.

A picture of Robert taking Yuko and Judy to old town. Thanks again Robert, you sweetheart!!

BTW. . . all my Japanese friends will like this one. This is the sign in the restaurant (obviously) indicating the restroom location. The server told Yuko that the left sign (in Japanese) was initially mounted upside down for a long time because the Germans there can't read Japanese and didn't know any better. Apparently after a long time some Japanese person mentioned it to them and they finally righted it. I wonder if any Japanese people were forced to pee while standing on their head?

Last note to Bernahard. . . thank you so much for lugging that wheelchair box (that included my filter masks) all the way to Munchen. And thanks for shipping to our apartment here in Heidelberg. Got everything yesterday, including the brown-sugar cinamon pop-tarts that will keep me alive after I'm discharged from the hospital It was a VERY nice surprise and gift of kindness! We'll celebrate more when you come to Heidelberg. At least Yuko will be able to Qaplah! with you on my behalf.

Merry Christmas eve to everyone! - George & Yuko & Judy

Friday, December 25, 2009

Day -4 (Christmas Day)

So Merry Christmas to everyone!

Sorry. This is the only "official" Yuko & George family Christmas portrait for this year. It'll have to do cause it's all you get beyond our sincere thanks & appreciation to everyone. But just in case it's not obvious, I am extremely happy that Yuko is here with me during this whole process. I hope that I'll be able to make it up to her in the future.

And most of all, Happy Birthday to my Mom !! (Yes, she's born on Christmas day. That's why her nickname is Christmas Carol.) I still can't imagine how many b-day & Christmas presents she was yipped-out of over the years for the intersection of those two simultaneous events in her life. I'm hoping to come back healthy and have her as the special guest of our party in 2010.

Also. . . Dr. Raab stopped by today to wish me a Merry Christmas. I was so happy to have seen him today. What a great guy.

Just a quick video recap of the day's medical activity for me. . . .

Also, today my roommate, Tateishi-san, whom we now consider each other brothers because of having to endure essentially the same stem cell transplant procedure, was visited by his wife, beautiful two daughters, younger brother and father. He invited me along to meet them, which was very nice. The young girls are not allowed in the Ackermann ward to reduce the chance of spreading infections, so we all met up in the hallway outside the front door. We put on masks to reduce the chance of picking up any infectious agents, especially considering that Tateishi-san is currently neutropenic and has zero immune system. I'm not quite there yet (will happen next week for me) but since I am his roommate I want to be sure he is not exposed to anything potentially dangerous.

So I said I would mention a little more regarding the hospital food. Gotta find some time to be a critic to keep me busy. . . . . The hospital offers a meal preference selection menu that I completed and turned in. It basically allows a choice between a red meat selection and a non-red meat selection (which might be chicken fish or vegetable). I thought I had checked the non-red meat selection for every day.

The meals here follow the same daily pattern. Morning meal is very light, usually consisting of some bread, cheese and a light vegetable broth soup. They also provide coffee or tea. Neither of which I drink. I just opt for the orange soda or apple juice that Yuko brought for me. Perfectly fine for me since I usually never eat breakfast anyway. But I have to take my morning medicine doses with some food, so this turns out to be perfectly sufficient. It all tastes fine.

The lunch is always the largest meal. For my Christmas lunch today I had a very nice tasting vegetable lasagna in a cheese-pesto sauce. Quite tasty and I ate the whole thing along with a small salad, fruit cup and a few cookies thrown in for this special day.

As you can see the dinner is also a very small meal, which is typical. I'm not sure if I or the hospital messed up on the menu selection. It looks like they provided me with roast beef. That's disappointing. I just ate the cheese, bread and butter. I have been saving some wafer cookies I can snack on later if I need to fill up a little more. Hopefully all my future meals will omit the red meat.

BREAKING NEW FLASH **** It's now 7:45pm here and Yuko said she and Judy can bring over some smoked salmon for me. Yum! I love smoked salmon. I just cleared with the nurse and I know I'm going to enjoy that. They'll start my first chemo bag in a a few minutes and then I can meet up with them and get a quick bite of that salmon I'm dreaming about right now.

Looking forward to the last day of chemo this coming Sunday! Then my new "birthday" with the stem cell infusion on Tuesday following a one-day break to clear the chemicals out of my body. Of course then the biggest downside will come soon after. . . . the dreaded neutropenia. But when it happens, that is the confirmation of totally resetting my immune system to cure my MS. I can endure it! I'm sure. And I'm looking forward to a better future quality of life myself, and more importantly, my family!

Saturday, December 26, 2009

Day -3

Just a brief video today from George & his angels. . . . .

Day -2 (Sunday - Last day of chemo)

In the evening Yuko & Judy brought me some cheeze pizza (my favorite, and yummy). . .

And some pictures of Yuko & Judy's Heidelberg outing day. I think the images should be self explanatory, I think. At least I think they had some fun. . .

Monday, December 28, 2009

Day -1 (chemo rest day)

Just posting the updated info on the current schedule first, followed by today's message (click on schedule to enlarge). . . .

Just one more day waiting until I get my life back in the form of a cryogenically frozen bag of my own stem cells. . . . So today is a simple day of getting some saline solution and drinking plenty of fluids to purge any remaining chemo drugs from my body in preparation for the stem cell infusion tomorrow so that the stem cells have the best possible survival and engraftment opportunity. Following the stem cell infusion (either the same day as the infusion, or at sometime after that, depending upon Dr. McClanahan's judgment) I will receive a single dose of Neulasta G-CSF. This is really a fantastic drug that promotes stem cell replication, mononuclear cell mobilization and immune recovery to get my immune system back up and healthy at the earliest possible time. Neulasta is a relatively newer G-CSF drug (also an Amgen product just like Neupogen) that has a self-limiting negative reaction co efficiency in which it works constantly and as hard as possible to restore the immune cell function in the bone marrow. As the immune system recovers toward a normal level the Neulasta drug (administered as a single SC injection) becomes consumed and tapers-off it's active pharmacologic effect. So basically, it works as long as required and then extinguishes it's own activity when no longer needed. Probably why it's also an expensive drug. I'm expecting it to be well worth every penny of the cost. Especially since I should be able to expect the most rapid recovery possible with it's use. I'm going to have to check into buying some Amgen stock.

Different subject. . . . sometimes small things perk me up (other than Yuko & Judy's fantastic help and support here). The first of which is that I measured in my reduced water retention weight at 67.1kg this morning accompanied by my totally normal & usual BP level of 120/70. I'll keep my fingers crossed that it will not rise again. At least not to the level seen before.

And then I just wanted to make one more comment about the hospital food. Honestly, I think the kitchen that prepares the food here at Heidelberg University Hospital does a very good job. No joke. Today I had a very delicious chicken in a sauce and potatoes together with some salad and a nice minestrone soup. That hit the spot!

In anticipation that my stomach will likely eventually become weaker to take more solid forms of food, I went by the hospital cafeteria and picked up some extra packs of chocolate pudding and fruit pudding that I can eat when I don't feel like solid stuff later. I just store it in the ward refrigerator until I need it. Yuko suggested that I might also try some jars of baby food that they also store and provide to patients that might need it. What? I suspect she's trying to tell me a different message. Yuko! . . I'm not whining THAT much, am I?!

My new "Birthday" tomorrow with a simple stem cell infusion. I will get my life back, and just as important (the whole reason I'm here!) this will mark the major milestone for curing my Multiple Sclerosis! I do believe that based on the overall published scientific data, it should be just a matter of perhaps a year, or less and I will come to realize that I will be cured (halting of disease progression) of MS. And then I'll also have better-then-even odds that I will also be able to experience a reversal of actual disease progression. Although not guaranteed, my EDSS score of 3.5 bodes particularly well for the distinct possibility that I will be able to actually run again and be physically active with my son, Riki. I'm looking forward to the one-year stem cell transplant party we will plan for December, 2010 (where the Heidelberg medical staff will be invited as special "hero" guests) so that I can personally demonstrate my recovery and improvement.

See you tomorrow for the simple, but important day!

Tuesday, December 29, 2009

Day 0 - Stem cell transplant / infusion Birthday

It's now Tuesday morning here in Heidelberg. Yuko and Judy have arrived for the big day and snapped these pictures to memorialize the event of the day. And today IS the day! And it could almost go unnoticed because my stem cell transplant infusion procedure only takes a matter of minutes to complete. Perhaps about fifteen-to-twenty minutes, or so. It could easily be described as anticlimactic.

But that description beguiles the real significance of today’s event. This isn’t just about me getting life handed back to me in terms of surviving the destructive chemotherapy (although I have to admit this is an important part of the event). No, the real issue in my being here going through this marks the turning point for curing my MS. This doesn’t mean that I won’t have some temporary worsening of existing MS events & symptoms in the near term. I expect temporary transient worsening of my existing symptoms for perhaps several more months due to the general chemo stress on my body. [Post transplant note: actually the only MS-related symptomatic worsening I experienced was slight, but noticeable leg spasticity. However, as expected, this was only temporary and it completely resolved in a matter of a few months. Other than this, I had no added MS symptoms of any kind.]

Instead, what today significantly marks is that the underlying etiology and root cause of my Multiple Sclerosis is going to be immutably changed for the better. I completely believe with all my heart (and foundation science) that today is the seminal day of fundamental and positive change by means of what most people would probably consider this aggressive therapy. But I have confidence that in the long run and end, this will pay off in spades for me and my family. I think that within the next year it will likely become clear to me that my MS disease activity will be stopped in its tracks. And then on top of this, there is a good likelihood (>60% chance) that I will see actual reversal of existing deficit caused by the MS. [Post transplant note: This was too conservative of a time prediction. By +6 months it became clear that my disease was both stopped, and reversing. As good as I could have imagined it would be.]

So bottom line. . . this day marks the transition to my "completely new & improved" immune system that will likely be MS-free going forward. At this point I think there is little more to say beyond this comment since in a scientific and clinical perspective it will take some more time to show & prove the actual result.

George's stem cells during re-infusion. At first glance it doesn't look like that much. Hard to believe that's my future life & health in that bag. . . . . .

ALL DONE

Just a side note to anyone considering this treatment for MS. . . prior to the cryopreservation of the stem cells a chemical preservative with the acronym of DMSO is added to the stem cell plasma solution to help reduce the destructive effect of the liquid nitrogen temperature on the stem cell walls. Basically it helps to somewhat protect the stem cells and make more available for the beneficial engraftment effect once they are back in my body. However, DMSO has a tendency to cause a sudden, but common acute side effect that feels like chest tightness. As if someone sat on my chest and a little bit restricted my breathing. Dr. McClanahan administered an antihistamine prior to the procedure in anticipation of this effect. It must have had some benefit because it only lasted about fifteen minutes, and then resolved.

Last note. . . I can't detect it myself but DMSO gives off a strong garlic/onion odor from my body for about 24 hours. This evening Yuko and Judy said I really stink of garlic!

Time for me to hit the sack. Hope everyone is getting ready for a great New Year celebration this week!

Wednesday, December 30, 2009

Day +1

Today I have compiled my relevant blood test result numbers in the following image (click to enlarge). My leukocytes (all combined five white blood cell types in the human body) are dropping fast. The normal range is usually above 4000 / nL. This morning's blood draw tested out at 1350 / nl. So everything is going per expectation and I should be neutropenic (zero immune system) definitely within the next 4-7 days, for sure. One consituent of the leukocyte family, called a neutrofil (a type of white blood cell that specifically attacks bacteria and fungi) is also an important number to measure. The neutrofil count is also quite low at 1000 / nL. Eventually that will also hit zero.

Just in case you want to understand more about the various leukocyte cell types circulating in the bloodstream and their specific functions:

http://en.wikipedia.org/wiki/Leukocyte

So basically everything is going as expected. I have been warned that the worst side effects are yet to come. But they should last about a week, maximum. I still haven't had any nausea yet, nor any overt indication of mucositis. But my stomach is definitely unsettled. For the past three mornings I've had some strong discomfort with what feels like eosophageal acid reflux [post transplant note: this is the one mucositis lesion in my esophageal passageway I got from the chemo]. The nurses gave me some antacid liquid I can take when this occurs. It does not have an instantaneous effect and takes a while to kick in. But eventually it seems to do the trick.

For food, more often I'm turning towards the pudding and pasteurized yogurt with a little fruit in it. Jergen suggested the pear & apple baby food for when it get's really bad. I think I probably will do that.

Also. . . This morning the nurse removed my neck catheter. The upside is that it will be much better for me to take a shower without having to worry about keeping it dry. On the other hand, I'm going to now have to get stuck daily with needles for the blood tests and/or medication they might need to administer.

And thing to last note. . . . . daily tablet medication. . . they dropped my three steroid anti-nausea steroid medications and have added twice-daily Trimethoprim (Bactrim) wide-spectrum prophylaxis antibiotic as an added measure of infection defense.

Yuko and Judy bought some non-alcohol champagne for me to share with some of the fellow patients in the Ackermann ward during New Year. I hope your New Year will be a step-up compared with my scenario.

See you tomorrow!

- George

Posted by George Goss at 6:22 AM 0 comments

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Thursday, December 31, 2009

Day +2 (New Year Eve)

First note. . . Tahara-san & Yasuko-san. . . . Thank you! You are very kind (we all already knew that) and Yuko and I are looking forward to returning the kindness in the new year! Can't wait.

And another issue of great importance. . . . Judy left today to spend the night at Frankfurt airport before leaving tomorrow for a flight back to SFO. Judy, you have so greatly helped us more than my words can express. Thank you times a thousand times! We're looking forward to showing a true appreciation of your (and Tif, too!) sacrifice in the New Year. Here's to wishing you a great flight!

Current blood count numbers (click to enlarge). . . . .

My white blood cells are dropping precipitously, along with the platelet count. Just as expected. So no surprise here. I was told that once the neutrofils drop below 1000, they don't bother measuring them. So I'm below that threshold now. However, I also got to know my past three days of platelet counts, also an indication of the stem cell activity in my bone marrow (or in this case, the lack of activity).

Based on the current blood count numbers the nurse gave me specific instructions for my behavior going forward (until my blood counts come back to life), including the following:

· Be careful what I eat! - absolutely no salad or anything raw! And no probiotic yogurt, unpeeled fruits or vegetables. Most things that are commercially processed and packaged are probably OK, so long as I check with the nurses first. Chocolate pudding is fine, of which I will probably be eating a lot of that over the next ten days. My stomach is still unsettled. It may worsen. A lot. Where's my lucky rabbit's foot when I need it?

· I have been instructed to inspect my skin every day for bruises due to low platelet count and report if I find anything.

· I now have to observe strict sanitation rules; can't be around any sick people and need to wear a filter mask when I walk outside the room.

· I'm told that the vast majority of people experience idiopathic fever that may last the full ten days. I'll report on that as it develops. [Post transplant note: Yes, indeed I did have an extended fever. Just like the majority of people undergoing the same treatment. It's normal & usual.]

· I can now sense change in the epithelial tissue of my mouth. Anyone know any witch-doctor spells to cast away the evil mucositis spirits?

And then the small pleasures. . . . It was nice to take a shower this morning without the catheter sticking out of my neck. I think I did an improved job of getting clean.

I expect to be mostly tired and/or sick over the coming ten days, always looking forward to when the leukocyte counts start to improve. I hope Yuko will be able to somewhat enjoy her time around town. I will have to get my entertainment vicariously through Yuko.

Today Frank drove down all the way from Dresden to be here for New Year. Thanks, Frank! (BTW. . . you can take Yuko, but you can't have Riki!) I'm glad that Yuko and Frank will be able to ring in the New Year together. . . .

Comments:

From: AllenSubject: re: CCSVIDate: Friday, June 25, 2010

Hi George,

Thanks for your post on CCSVI. It's always good to hear from both sides. I just stumbled upon your blog and look forward to reading more about your stem cell procedure. I've read some vague accounts in the news so it will be good to get more in depth info.

I'm curious what your thoughts are on the only scientific study on CCSVI (at least that I'm aware of):

"CCSVI prevalence was 56.4 percent in MS subjects and 22.4 percent in healthy controls.

In this large MS cohort, the presence of CCSVI did suggest an association with disease progression"

http://www.buffalo.edu/news/10937

I feel like there's a lack of evidence to disprove or prove CCSVI, and given this study it is probably something worth more research.

Thanks, Allen

From: George GossSubject: re: CCSVIDate: Friday, June 25, 2010From:

Hi Allen,

Thanks for your e-mail and insightful comments. I appreciate hearing from someone that can look at both sides of the issue without getting hostile.

And thanks for reading the blog. If you would like to read the beginning, it gives a fairly good summary of what the stem cell transplant cure is all about and overview of what I did. This is the first post (at that time I didn't know for certain that it would cure me. But it has worked out wonderfully for me and cured me, as it does for more than 80% of those undergoing the procedure.). . . . .

http://themscure.blogspot.com/2009/11/introduction-to-voyage.html

Also, your comments regarding CCSVI are very astute. I'm glad to see someone that looks at the information objectively instead of a visceral emotional and irrational reaction that many people in the MS community have. It's troubling to see people treat CCSVI as if it were curative dogma since nothing as such yet exists. (Not even a stem cell transplant.)

Regarding the subject of some correlation between CCSVI and MS. I think you are correct that there may indeed be some relationship between the two. However, the way I look at it it's a matter of "the dog wagging the tail," or "the tail wagging the dog." I believe that it is conceivably possible that there may be some factor of blood flow that is the result of an autoimmune disease, but unlikely to be a causative factor. Looking at the fundamental etiology, it is quite difficult for me to reconcile the already-established causality of autoimmunity for MS and the features of what CCVSI is purported to be by it's advocates.

It would be fantastic if I were wrong. But the already-existing data on autoimmunity as a cause of MS is so very much overwhelming, it's difficult to imagine that all those man-years and clinical trials already expended (and ongoing) to be proven wrong. If that did happen, it certainly would turn science on it's head.

Regardless, you have brought up great questions and it has made me think about this since so many people desire more detail (and actually "answers" that don't yet exist). I will enjoy to look into the specific details of the UB study to dig further. In fact, after I look at it more I think I will even give Dr. Robert Zivadinov at UB a call to ask him some questions myself.

I'll definitely let you know if/when I find out some more info that might be relevant.

Best regards, George

Follow up comments by George Goss on June 26, 2010:No need for me to dig into this any deeper. I read the study design, protocol and results. There is no doubt it was a properly conducted study. But by design the study does nothing to associate "causality" of MS via CCSVI. So all the study indicates is that more study is required. It provides no additional hope of a CCSVI cure beyond the unsubstantiated claims already made by Dr. Zamboni.

Bottom line of the study result summary. . . . . people with clinically definite MS are roughly twice as likely to have narrowed (or slightly restricted) jugular veins compared with people without MS. But the study did nothing to address the understanding or underlying reason of why this occurs (which is the additional study required). And also, why do 22% (a very large and significant number) of people in the study that have redistricted veins not also have MS? I go back to my consistent previous contention that it is more likely that CCSVI has a non-causative association with MS, and is not itself the cause.

So even if CCSVI as a cause of MS were proved correct, based on the results of this trial only about half of all people with clinically definite MS could be cured. That is far lower than the 80%-85% of MS patients that have already been shown to be cured with a stem cell transplant. So which one is the cure?

Food for thought. . . . . there is a substantially stronger correlation between T-cell loading and MS disability progression than there is with CCSVI and disability progression (which is why immunomodulator drugs have a significantly positive impact at reducing MS progression). So if weighing these CCSVI study results in the most favorable light versus the pharmacological studies of immunomodulators, the preponderance of evidence still stacks up overwhelmingly in favor of MS being an immunological (autoimmune) disease.

Just so I'm not beating-around-the-bush. . . MS cannot be cured by CCSVI treatment, and the latest clinical trial does nothing to dissuade my thinking in this respect.

By the way. . . I'm all for more research on CCSVI. There is clearly some relationsip between MS and restricted jugulat vein(s). I'd really like to know why. More knowlege, not less is always better. It's just troubling to see so many people understandably looking for a remendy for thier MS and and then irrationally jumping on the CCSVI "cure" bandwagon with absolutely NO scientific evidence that it has any positive impact on MS, as is the case today.

from: RoseSubject: Why say hoax?Date: Monday, June 28, 2010, 2:19 PM

Greetings,I came across your blog in my endless search for Internet knowledge and was drawn to your post because of your choice of words. Now, that may be why you used that word but I find it interesting that there are a few people (or perhaps more-I know I don't have all the info) out there that keep arguing against CCSVI calling it a hoax, more specifically to the treatment and its effectiveness. I think CCSVI is not a hoax but an expansion of previous ideas and research by many other people. Some of the research has not been connected to each other and I am unsure how much of it all that Zamboni et al have even reviewed. I do know that it is known in the vascular world that stenosis in the vasculature, anywhere in the body, is not good and needs to be corrected.

I have come across a lot of research and case studies done that points to a link between vascular stenosis and neurological damage. I do not argue for the MS-CCSVI causal link, I have a feeling it is more complex than a simple stenosis issue; but I do see a certain validity to the underlying vascular issues. Especially since so many interventional radiologists are now pulling blood clots from MSers veins.

Of course this raises the question, what was their diagnosis status? Mine is solidified by only 2 of the 3 requirements, I have no lesions. Does that make my diagnosis questionable? Unsure. But many MSers have been diagnosed based on less than what I have been. How many MSers truly have MS? Without perfectly strict rules, it is impossible to say. The McDonald Criteria for diagnosis have been changed over the years and are, well, a bit on the flexible side for diagnosing patients.

Getting back to the hoax issue, what about the diabetic and cancer patients that experience neurological damage symptoms when it is discovered they have developed clots or stenoses in their veins because of long term catheters used for their treatments. Once those veins were cleared, their neurological symptoms were alleviated. These issues are not hoaxes but then they are not linked to MS. (I have that research somewhere, just have to dig it up...if you are interested.)

There is a 2007 paper "The Differential Diagnosis of Multiple Sclerosis" (Rolak & Fleming) that lists as an option for partial diagnosis "Table 2. #11. Cerebrovascular disease" and in "Table 4. #2. Arteriovenous malformation." So here we have another potential for a vascular issue with neurological symptoms and an issue with diagnosis.

There is also the argument for or against the autoimmune part of MS. A 2004 paper "Multiple Sclerosis is not an autoimmune disease" (Chaudhuri & Behan) puts up a convincing argument against. But I am still on the fence as far as which it is or isn't but as new discoveries are made the more we will know.

This 1999 neurosurgery paper "Endovascular Recanalization with Balloon Angioplasty and Stenting of an Occluded Occipital Sinus for Treatment of Intreacranial Venous Hypertension: Technical Case Report" (Neurosurgery, April 1999, Vol. 44, Is. 4, ppg. 896-901) is an extreme case, but shows that such stenoses do cause neurological problems. Would it not be safe to say if such a stenosis were gradual, say over a period of years even decades they could also create such damage and symptoms?

Basically, why say hoax when it really is an issue of disease relationship. Perhaps Italy is right in separating CCSVI from MS? There is still so much to learn and discover in all of this.

I enjoyed reading your post, I hope my terribly longwinded response did not bore you too much.

Cheers,Rosie

From: George GossDate: June 29, 2010

Greetings Rosie,

Thank you for you message. All of your comments are lucid, relevant and make complete sense to me.

And first off. . . . thank you for highlighting my use of the word hoax. Now that I have thought about it the word got close to my intent, but was not precise enough. I have changed the blog title to reflect a more precise nomenclature. I use the word mythology because there is absolutely no curative data for CCSVI treatment of MS, but there seems to be so much irrational belief in it in it anyway. It really makes me wonder why would so many people put their faith into a procedure that has absolutely no demonstrated curative benefit when stem cell transplantation shows such good curative results?

And regarding your note of vascular causes of neorologic problems. I agree, I'm certain there are a great number a syndroms associated with vascular stenosis (such as diabetes). I just feel confident that MS is not one of them. And for one reason. . . . there is so much immunological clinical trial data developed so far that squarely puts autoimmunity in the spotlight as a cause (or "action," if you will) for MS. Combined with the dearth (non-existence, actually) of CCSVI causal data, this makes me defer to what has already been shown with "real" curative stem cell end-point data. CCSVI does not fall into that category whereas stem cell transplantation does. It appears to be a serious uphill battle if CCSVI is to displace the immunological model as the etiology for MS. And that means beating an 80%-85% cure rate that stem cell transplantation has already demonstrated in multiple scientifically clinical environments around the world.

Best regards, George

From: RoseSubject: CCSVITo: "George Goss" Date: Wednesday, June 30, 2010, 8:53 PMGeorge,

You make a good point on the etiology issue. I am pretty convinced that there is just not enough data to put CCSVI at the top of the causal list for MS. Or even in the top ten; but that remains to be proven definitively.

I think stem cell therapy is a great option; it just has a long way to go and a huge conservative religious right to overcome here in the US. Mind you, I am not one of those people. I have found that no matter how much you argue that stem cells can come from other sources that are not embryonic, many of these individuals will not allow such things to sway their opposition. They believe that any stem cell research can create a path to embryonic...and well, the argument has no end and I usually just find a reason to get out of the conversation. :)

I must also say I have an issue with the term "junk science" for Zamboni's work; but perhaps that is how all different opinions and out-of-the-box research is described until there can be a significant amount of verifiable corroborating evidence. What about the Australian pair that discovered a bacterium as the source of peptic ulcers?

http://www.nndb.com/people/899/000136491/

"His work was not received enthusiastically. In Marshall's words, "When I was criticized by gastroenterologists, I knew that they were mostly making their living doing endoscopies on ulcer patients. So I'm going to show you guys. A few years from now you'll be saying, 'Hey! Where did all those endoscopies go to?' And it will be because I was treating ulcers with antibiotics."

Should be an interesting next few years of research for and against CCSVI.

I wonder, how do you feel about the entire hubbub in regards to MSers who have had the angioplasty and are experiencing significant changes to their MS symptoms? Do you also feel that the personal experiences are a result of the placebo effect? If so, what does that say about our MS symptoms that they can be fixed with a placebo and not the drugs that we take daily? Or is it all just smoke and mirrors?

I have to admit, I am quite amused by the next stage in BNAC's study involving the 'fake' angioplasties they are reporting they will include in their study. How exactly do you fake a catheter going through someone's body and inflating a balloon in their neck? We have heard, and see, so many accounts of the angioplasty procedure that we are completely prepared in what to expect. I think a medical procedure such as this one cannot possibly be faked. We shall see what happens next.

On another note, my father is from Chile and he tells me they are doing great things down there with stem cell research and treatments. This he learns from his sister who still lives there.

How exactly did you receive stem cell therapy? And please forgive me if you have posted details in your blog, feel free to let me know and I will dig deeper into your posts.

Best,Rosie

From: George GossSubject: CCSVITo: RoseDate: Thursday, July 1, 2010, 11:04 AM

Hi Rosie,

Having a discussion with you is nice because you have so many great points. I hope you won’t mind terribly much if I bounce some of my observations and opinions off you based upon your comments. . . . . . .- Stem cell transplant therapy, just like all medical therapies, does have a way to go before it is finally accepted as Curative. However, it's just now in the final stages of FDA phase II trials with phase III trials planned. Based on an extrapolation of this schedule, I believe it's entirely possible that a stem cell transplant will become standard curative therapy for MS within ten years. At that point insurance should cover the cost of the (cure) procedure. For now, it has to be paid out-of-pocket. And unfortunately it's not an inexpensive procedure.

- Interesting that you mention embryonic stem cells and the tumultuous controversy surrounding them. Other people also brought up this subject when I told them I was getting a stem cell transplant. But actually, with an autologous stem cell transplant the patient is only getting their own stem cells back. The stem cells do not come from another donor or any embryos. So there's not a lot of controversy here. Interesting that to my knowledge, there is not a single disease currently curable by embryonic stem cells.

- I believe that I appropriately use the term "junk science" to describe Zamboni's original study. The "study" was designed and executed by Zamboni so that it was impossible to fail (meaning that the results are meaningless). That is not science. And in the words of the European science establishment I also believe it was completely "unethical."

- And I'm also familiar with the discovery of Helicobacter pylori as a cause of gastric ulcers. Remarkable work done by the original investigators and my hat's off to them for their perseverance in the face of then-dogma. But even though they were going against the putative beliefs of the time, I'm not aware of anyone calling their discovery junk science. In fact, it is their following of sound scientific principles that eventually led to the acceptance of bacteria-as-a-cause of gastric ulcers. But I think Zamboni's theory and the theory resulting in the H. pylori cure is not comparable. Making Zamboni a martyr does not make CCSVI more real as a cause (or cure) of MS.

- I am also looking forward to CCSVI study results over time. Even though I think it will never result in a cure, I am interested in knowing more about CCSVI's association with co morbidity factors.

- If people with MS seek and receive CCSVI treatment, that's OK with me since it's an individual decision. However, I think any improvement is more likely a placebo effect, than otherwise. And yes, the placebo effect is real, but it's not a cure because it's not lasting. Most people with MS will continue to degrade over time, with or without CCSVI treatment. For those that do get CCSVI treatment, that is setting a lot of people up for some serious disappointment (and waste of their money).

- So far today only a stem cell transplant (also sometimes called a bone marrow transplant) has consistently shown greater than an 80% cure rate for MS (and for several other autoimmune diseases, as well). Any placebo effect has been excluded from those studies. All the study info is public for review. You can see some of the data on my stem cell references page:

http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html

- There are two major types of stem cell therapies that are vastly different from each other. The only one that will cure MS is by first harvesting stem cells from your own body and then destroying the bone marrow with high dose chemotherapy. Following this your own stem cells are then re-infused back into your body and then this result in re-growing the bone marrow and having a "reset" immune system that no longer attacks your body. This is what I did and for me it worked fantastically well. I'm definitely cured. However, the other form of stem cell therapy takes stem cells from your own body, and then without destroying the bone marrow the stem cells are re-infused back into your body. This type of "stem cell therapy" is worthless and has no demonstrated clinical benefit at all. There are many companies all over the world offering this treatment to patients just to get money. Sad, but many desperate people go for this treatment looking for a cure, just the same reason I believe people get CCSVI treatment. They hope it will cure them even though there is zero evidence it has any long term benefit.

- A stem cell transplant (the type I received) is a hard procedure (makes you quite sick for a week). But it's not an impossible procedure to endure. Also, it's quite expensive. So how much is a cure for MS worth? That's a personal decision for each individual.

- You can find out about my stem cell transplant procedure by reading my overview page here:

http://themscure.blogspot.com/2009/11/introduction-to-voyage.html

I'm not pushing this stem cell transplant on anyone even though it is the only cure available today. If you have any questions or comments, I'm always glad to receive your e-mail.

Thanks & regards,

- George

The CCSVI mythology

Thank you for visiting my blog. If after reading this page, I hope you will have an opportunity to scroll back up here to the top and follow this link to another page that I think has valuable information:

http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html

"I worry that, especially as the Millennium edges nearer, pseudo-science and superstition will seem year by year more tempting, the siren song of more sonorous and attractive."

- Carl Sagan

How fitting I found this quote of Carl Sagan's to be especially relevant to the subject in this posting. And on this subject I know this posting is going to upset many people in the MS community that are looking for an easy solution to cure MS. But sometimes the truth (or in this case, the facts) hurts. This page reflects my opinion along with some rational scientific interpretation about CCSVI since this is currently all the rage in the MS community. If you have a sensitive disposition and are unable to listen to other points of view, please stop reading now. I don't mind if others have a different opinion. I'm not going to try to force my opinion on anyone else that does not agree with me. If you have MS, are only looking for the cheap & easy cure solution (a stem cell transplant is neither), please don't read my blog. You'd be better off going somewhere else to get your info because I like to use science as my tool for finding a cure. And as a scientist, chasing the latest "fad" cure is not something that I do.

So for those that don't know about CCSVI, it stands for "Chronic CerebroSpinal Venous Insufficiency." A term and theory invented by Dr. Paolo Zamboni (not the same guy that invented the ice scraper). Zamboni is an Italian vascular surgeon, and as the story goes he was looking for a way to cure his wife of MS. So he decided to fall back on his area of expertise (which has nothing to do with immunology) and look for a "vascular" cure for MS. He purportedly theorized that MS is caused by a lack of blood drainage from the cranium resulting in an excess of Iron contamination of the nervous tissue which thereby causes cellular damage. So his easy (and less expensive) solution to the problem has been to do outpatient angioplasty (or alternatively a stent insertion) of the jugular return vein from the cranial cavity and thereby lessening the Iron exposure to the nerve tissues.

Here's a description. . . . http://www.ccsvi.co.uk/

This treatment is also euphemistically called "the Liberation Procedure." But it won't liberate anyone from multiple sclerosis. The only thing it will liberate is money from your wallet for an ineffective and possibly dangerous procedure (people have died in the course of receiving this treatment).

But don't take my word for it. . . . . The top Germany NGO on MS has already issued a statement on the subject of CCSVI; "In our case, the lack of scientific Zamboni et al. study results did not present a sound scientific methodology and are therefore worthless and even ethically questionable." Ouch! Additionally, the Multiple Sclerosis Society of Canada (MSS) was quoted to say “. . . . . at the present time there is insufficient evidence to suggest that this phenomenon is the cause of MS.” According to Dr. Paul O'Connor, a neurologist at Toronto's St. Michael's Hospital "There is not a shred of real evidence anywhere that messing around with these veins does anything to help MS patients." The United States National Multiple Sclerosis Society (NMSS) has not yet issued a definitive statement on CCSVI because, I believe, they don't want to risk interrupting any funds from disaffected donors. Probably a wise business move for thier own benefit.

This first report succinctly lays out the facts of the fallacy. . . .

Massive study disputes Zamboni theory of multiple sclerosis

http://www.theglobeandmail.com/life/health/new-health/health-news/massive-study-disputes-zamboni-theory-of-multiple-sclerosis/article2125784/

"David Hafler, professor and chair of the neurology department at the Yale School of Medicine, said it’s “shameful” so much attention and investment is being placed on an idea that is simply not true in light of findings about the immunological roots of the disease."

Concerns about controversial MS [CCSVI] treatment (BBC)

http://www.bbc.co.uk/news/health-12637191

". . . . . seven published studies by independent researchers have failed to back up Zamboni's findings.

Some of those research teams have suggested that what he interpreted as abnormalities were in fact normal and harmless anatomical variations found in everyone."

No Link Between MS, Narrow Blood Vessels, Study Says

http://www.foxnews.com/health/2011/08/09/no-link-between-ms-narrow-blood-vessels-study-says/

"A new study provides more evidence that multiple sclerosis (MS) is not caused by a blood vessel condition [CCSVI], as some research has suggested."

"Based on those findings, Marder's group said MS patients should not undergo surgery to open up those blood vessels."

And a recent informational article based on info from the well respected Annals of Neurology. . . .

New Studies Question 'Venous Congestion' as a Trigger for Multiple Sclerosis

http://www.docguide.com/news/content.nsf/news/852576140048867C852577730065E668?OpenDocument&c=&count=10&id=48DDE4A73E09A969852568880078C249

BOSTON -- August 2, 2010 -- Two new studies challenge the controversial hypothesis that venous congestion -- chronic cerebrospinal venous insufficiency (CCSVI) -- contributes to the development of multiple sclerosis (MS). This theory has resulted in many patients with MS receiving experimental endovascular angioplasty, an MS treatment unproven by clinical trials. The studies refuting the CCSVI theory with the first negative medical evidence on the subject are available today in the August issue of Annals of Neurology. . . . .

. . . . . These 2 papers should add a note of caution for MS patients and physicians who are contemplating interventions for possible venous abnormalities based on the findings of Zamboni. . . . . . .

. . . . . "Our results call into question the existence of CCSVI in a large proportion of patients with MS," said Dr. Doepp. "We did not find supporting evidence that cerebral venous congestion plays a significant role in the development of MS. . . . .

. . . . . A second study by researchers at Umeå University in Sweden also concluded that CCSVI does not contribute to the development of MS. . . . . "Our study found no support for using endovascular procedures such as angioplasty or stenting to treat MS patients," Dr. Sundström affirmed. . . . . .

MS genetic discovery casts doubt on [CCSVI] vein theory

http://www.ctv.ca/CTVNews/Health/20110811/ms-gene-study-immune-system-110811/

"It is now clear that multiple sclerosis is primarily an immunological disease. This has important implications for future treatment strategies.". . . The findings also cast doubt on the recent theory proposed by Italian vascular surgeon Dr. Paolo Zamboni that MS is related to blocked neck veins.

One study published this week in the Archives of Neurology found no significant difference in venous abnormalities between MS patients and healthy controls.

And also the following news articles summary as reported in the health sections of both the Wall Street Journal and the BBC. . . . .

Studies Cast Doubt on New MS [CCSVI] theory (WSJ)

http://online.wsj.com/article/SB10001424052748703787904575403160155710380.html#articleTabs%3Darticle

Here is a great article from NPR that quotes one of the biggest medical profession's participants in the whole world of study of CCSVI (having earlier collaborated closely with Dr. Zamboni). And if Dr. Robert Zivadinov of the Buffalo Neuroimaging Analysis Center in New York says it, then this must have important meaning . . .

Doctor Challenges Cause Of MS And Treatment

http://www.npr.org/2011/01/31/133247319/doctor-challenges-cause-of-ms-and-treatment

"Meanwhile in Buffalo, Zivadinov says his research on CCSVI already shows a clear picture emerging. "CCSVI is not the cause of MS but might be a consequence or a contributing factor to progression, and I think that has to be studied," Zivadinov says."

And from a very important scientific standpoint I think this investigational result from Wayne State University clearly indicates that it is the immune system's T-cells (and their corresponding wayward epitope repertiore) that cause the underlying MS disease progression and relapses. These medical researchers could not have possibly produced this defiinitive concrete data result if the cause of MS were CCSVI:

Researchers publish results settling multiple sclerosis debate

"This work is significant because for the first time we are able to definitively establish a cause-and-effect relationship linking the marked T cells to the development of relapses and show unambiguously that it was the same T cells that mediated relapsing cycles."

http://www.physorg.com/news/2011-02-publish-results-multiple-sclerosis-debate.html

And. . . .

Discovery of new genetic risk factors for multiple sclerosis confirms that the disease is of immunological origin [not vascular]

http://www.webmd.boots.com/news/20110812/new-genetic-clues-multiple-sclerosis

And here is a CBC news segment on the subject of CCSVI treatment people are getting that clearly indicates the procedure is nowhere near risk-free (an abysmal risk/benefit ratio since there is no reproducible demonstrated benefit to be seen here, just the chance of injury or death). . . . . .

http://www.cbc.ca/news/health/story/2010/11/18/multiple-sclerosis-vein-death-costa-rica-mostic.html

Here is a brief lecture on CCSVI from Dr. Klaus Schmierer, a consultant neurologist at Barts and The London Hospital and Queen Mary's University of London. I especially like his talk because he aptly brings in the issue of The Scientific Method in evaluating CCSVI as a (lack of) cause of MS.

CCSVI - Big Idea Little Evidence [actually, NO direct supporting evidence]

http://www.youtube.com/watch?v=2DJvn2Oi04g

New Genes Confirm Immune System 'Intimately' Involved in MS

Vascular Theory Takes a Hit - On the basis of this new research, it is clear that MS is "primarily an immunological disease. This is the way to nail this disease and get on top of it," Dr. Compston said. There is also evidence of "an interplay between genes and the environment," he noted.

http://www.medscape.com/viewarticle/747957

And I found a blog website written by a highly experienced vascular surgeon (Dr. Colin Rose) that goes into far more detail regarding the myth of CCSVI:

The Zamboni Myth: Why “CCSVI” is Surreal

http://medicalmyths.wordpress.com/2009/11/24/the-zamboni-myth-ccsvi-surreal/

One of my favorite passages from this site. . . . . .

There are a number of cardiac conditions, such as tricuspid insufficiency and constrictive pericarditis, in which central venous pressure and jugular pressure are markedly elevated over long periods. Never has MS been described as a complication of these diseases.

But the MS Society of Canada has now been intimidated by desperate patients into funding a trial of the Zamboni procedure. I will be surprised if any of these grant applications are approved by a scientific review committee. . . . . If “CCSVI” is causing brain pathology, it must do so via some mysterious, unmeasurable, un-disprovable “reflux”, not amenable to the scientific method.

Zamboni’s myth is not science; it’s a surreal artistic creation in that this process can never be reproduced by other investigators. But all this is really irrelevant anyway because such flow patterns can never damage the brain without causing an increase in cerebral capillary pressure. Any MS patient with a large enough increase in venous pressure to cause red cells to leak out of small veins would have a head that looked like a leg with severe varicose veins; his eyes and tongue would protrude and his face would be very swollen and blue. So, there is no point in even funding a trial of the “liberation treatment” because it is impossible to know what Zamboni actually did and the basic science says that there no point in even trying to figure out what he did. When one doesn’t even know how to reproduce a test, how can one do a clinical trial of it? No more money should be wasted on the Zamboni myth.

We will keep our readers updated on the expansion of the Zamboni myth and it’s inevitable implosion. When it does implode, I would hope Dr. Zamboni will indemnify all patients and insurance plans who wasted money on imaging for “CCSVI” or “liberation.”

CCSVI treatment as a cure for MS is really just junk science that has yet to withstand any valid scientific scrutiny. What started me really thinking about this is the question "for people with hemotomachrosis (a genetic abnormaility that results in EXTREMELY high Iron in the blood), why do they not experience MS at rates greater than the normal population?" Additionally, if MS is a vascular disease then why do immunomodulators (interferon, glatiramer acetate and tysabri) have been proven to slow down the disease for several hundreds of thousands of people taking these drugs around the world who are afflicted with MS? These drugs should otherwise have no positive effect at all if the cause of MS is "vascular" in nature. The answer is because MS is not a vascular disease and is not caused by high Iron exposure to nerve tissue (as CCSVI purports). The putative mechanism of cure for CCVSI treatment and that of hematopoietic stem cell transplantation (for now the only scientifically demonstrated cure for the majority of people that choose to receive the procedure) is completely different. And these very dissimilar treatments can't both be correct. Another particularly interesting supportive piece of evidence that MS is not vascular, but is instead an autoimmune disease is that pregnant women that also have MS that are in the third trimester of pregnancy do not experience MS relapses. This is because the human female body suppresses her own immune system so as not to reject the growing baby from her body. The side effect being that the MS disease activity is suppressed during that same time, as well.

And in addition to all the scientific results already established in the stem cell transplant clinical trials, I now know that a stem cell transplant cured me because of my lack of clinical progression (and clinical symptomatic reversal, as well). I've taken the time to ensure it's definitive, not just a placebo effect.

A friend of mine (fellow MS'er that also has a scientific mindset) astutely made the following rational comments that add a plausible explanation for the existing CCSVI bood flow study results out of New York. . . .

The University of Buffalo published the first U.S. study ofthe link between CCSVI and MS earlier this year. Thepatients in the study were volunteers, so it's not the idealof a truly random sample from the general population, butit's better than Zamboni's sample. All were examinedconcurrently and the examiners were blinded with respect tothe patient's MS status. The result: Among the MSers, 56.4%had CCSVI, 10.2% were borderline CCSVI, and 33.4% did nothave CCSVI; Among the healthy controls, 22.4% had CCSVI.Now, this is a strong correlation, but it is far, far frombeing cause and effect. And, the results have not beenexamined for other contributing factors such as lifestyle.

Let me suggest a hypothesis I find a lot more plausible than"CCSVI causes MS"; that is, the sedentary nature of many MSerscauses CCSVI. Think about those bulging veins you see onbody builders; I bet those people don't have CCSVI. The ratioof 2 to 1 CCSVI in MSers vs. healthy controls might just bethe ratio of sedentary people in the two populations.

This supports the "correlation is not cusation" concept.

There are years of work ahead in examining CCSVI and it'srelation to MS. Right now, I wouldn't give a plugged nickelfor the chances of CCSVI being even so much as a minorcontributing factor in MS.

To continue. . . . . there has been no 'valid' clinical study of any type showing any form of lasting patient clinical benefit (other than a temporary placebo effect) for the CCSVI procedure as has been shown in several scientifically-valid clinical trials for stem cell transplantation (which has finished all FDA stage II trial patient treatments and the stage III trial is now in full swing here in the US). Zamboni's initial biased "study" (I hate to even call it that) was performed on a small group of MS patients that had the relapsing form of MS. And because he only included people that were in the middle of a relapse episode, even if no action were taken the MS patients would have improved, regardless. In other words, by design there is no way Zamboni's flawed "study" could have failed. Zamboni erroneously attributed the improvement to his agioplasty "treatment." But it is no mystery that the patients improved because they would have improved no matter what, even if they went untreated! I'm reasonably sure that truly scientific testing results will eventually bear out the flasehood of CCSVI treatment efficacy and disprove the purported merits of CCSVI as a cause of MS.

What this really comes down to is not Dr. Zamboni, or even CCSVI itself. This really is all about the whining constituents of the MS community that are looking for an easy, cheap, fast & painless cure for thier MS. However, such a cure does not exist. MS is not a vascular disease, it's a hematologically-rooted autoimmune disease (just like Rheumatoid Arthritis or Scleroderma). So there is only one clinically-lasting beneficial treatment for MS; it is a procedure that halts the body's underlying autoreactivity that effectively stops the immune system from attacking one's own body and restoring immune self-tolerance. And as of today only a hematopoietic stem cell transplant can do this.

And by the way. . . . for all you paranoid conspiracy theorists out there that think I'm against CCSVI because I'm somehow in cahoots with the drug companies. . . . WRONG!. . . like everyone else receiving a hematopoietic stem cell transplant I have been completely and 100% freed from ever having to again take any immunomodulatory drugs to treat my MS. After 15 years of use I'm now off all MS drug treatment since my stem cell transplant cure. In fact, if the conspiracy theorists were actually correct in their irrational assertion that somehow big pharma is trying to supress a cure for MS, then the pharmaceutical companies would be dead against a stem cell transplant as a cure (which I have seen absolutely no evidence of this) becuase it frees people from continued use of expensive immunomodulator drugs. Making a logical extension of this concept, it's not a conspiracy that is holding CCSVI treatment back as a cure. It's more fundamental. . . CCSVI treatment physically does not work as a cure. Bottom line. . . Even if some people with MS do have veins with ristricted flow patters, that does not mean that it causes MS. Correlation is not causation.

Now don't get me wrong. . . . . I wish that the medical community and researchers could find a quick & easy solution to cure MS. Unfortunately such an easy solution is not here yet (and perhaps never will be). I thank god that I had the opportunity to choose to be cured of MS with a stem cell transplant, hard & expensive as it was. At least I feel I worked for my cure. And that makes it all the more valuable to me.

From George GossJulu 4, 2010

Hi digginya,

Interesting that you simultaneously have two very concerning autoimmune maladies that are not just serious, but also both have a hematological origin in their pathology. Although I have never been afflicted with either disease, I can imagine that it may be quite serious for you. You have my empathy and compassion for what you are likely going through (and faced with) as a result of of these disorders.

However, because both of these autoimmune conditions are rooted in hematological causes (just like multiple sclerosis), both of these conditions have a greater chance-than-not of being cured (stopping of progression) by means of an autologous hemotopoietic stem cell transplant (AHSCT, same as I outline here in my blog). And although I don't know the status of your disease progression, there is a good chance that some of the damage (or physical deficit) can actually be reversed following treatment with an AHSCT. I refer you specifically to the European retrospective study from Switzerland which shows good early treatment outcomes for a range of autoimmune disord