My CtrlAltDel - Status

Discuss stem cells, adult and embryonic, and their therapeutic potential for MS here.

Postby Vikingquest » Wed Aug 31, 2011 10:53 am

Wow. Thanks once again George & Asher for your awesome responses! You always give a reasoned and detailed analysis, and it always makes me feel better reading your comments.

I'm so glad that you keep monitoring these forums, as I fear a lot of people who have undergone HSCT are "cured" and go about their lives once again and we never hear from them again! (which is totally understandable) but there are many of us who would be so confused and totally in the dark about this amazing treatment were it not for you guys who carry the torch! Well done! [/u]
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Postby georgegoss » Wed Aug 31, 2011 11:21 am

Vikingquest wrote:Hi guys, I was wondering if someone could answer my query regarding the death-rate of HSCT. Perhaps George, if you would be so kind!?

I have read that it's a little under 1% of people, so what accounts for this? Is that one percent comprised of those who were unusually weak when undertaking the procedure, too old or too young, had a negative allergic reaction to the treatment? Or is it just random? Could a relatively strong man just die as easily as someone who was much weaker? I guess I'm trying to understand that 1% and the "truth" behind the statistic.

Thank you

V


Sorry I missed answering your original query. For an otherwise-healthy person receiving HSCT, the most likely cause of a rare death would be an infection that developed during the time a person is neutropenic with no functional immune defense. That time period lasts about 10 days so it is critical to be vigilant to gaurd against infectious exposure and immediately treat people with anti-infectives if there is even a suspicion of infection. Being proactive during this time period is critical since wasting time to diagnose a problem could be fatal.

For the population as a whole (50,000 cancer patients treated every year with HSCT), infection still tops the list but there are a bunch of other potential issues that run a whole list of things that you mentioned. Some people are just too weak to tolerate the chemo stress on the body, allergic reactions, reactivation of dormant virus, etc. Generally speaking stronger people have a better survival rate compared to those that are weaker. (Often when it comes to cancer a weak patients has no choice but to undergo the procedure, lest they would surely die no matter what without it).
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Postby HUD45 » Fri Sep 02, 2011 1:42 am

Just an update from Tel Aviv guys. Yesterday I felt poorly and realized quickly that I was getting a fever on day +8. Up to the clinic I went and they did all the vitals plus blood and started IV antibiotics right now. Then Prof Slavin and the whole team collaborated and decided to admit me to the transplant ward of the hospital where I am obviously receiving constant monitering and IV meds. I would rather not have had to be admitted but it is so common for neutropenic fever to occur. But the whole take no chances of the team quickly made me feel at ease. I have never been admitted to the hospital before but I am glad to be here now until my transplant engrafts. The fever and chills are gone now and I have to kick back and be patient some more. Oh, also one of the team Dr.'s stopped by on his day off to give me a pep talk and to discuss the long term effect of the treatment...Great guy
So, here is hopig for Transplant Take Off soon...HUD45
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Postby Asher » Fri Sep 02, 2011 3:31 am

Hello Hud, good to hear the docs take no unnecessary risks and that you are in good hands. Reminds me so much of my own experience just 3 moths ago. I guess this is the entry ticket we all need to pay on our jurny to a better future (i'm in a poetic mood). Keep use informed of ho you are doing, take care, Asher
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Postby Vikingquest » Fri Sep 02, 2011 2:56 pm

If HSCT is a "sledgehammer" approach to curing MS, then how long will it be until they isolate the specific T-cells and develop a protocol which only isolates those cells? (without destroying the entire immune system).

I have a theory that this will be discovered and be in testing before Burt finishes his phase III trials (around 2010)... perhaps this is just wishful thinking, but it could be that by the time Burt's phase III study is complete it is already obsolete.

What do you reckon are the chances of this?
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Postby georgegoss » Fri Sep 02, 2011 10:21 pm

Vikingquest wrote:If HSCT is a "sledgehammer" approach to curing MS, then how long will it be until they isolate the specific T-cells and develop a protocol which only isolates those cells? (without destroying the entire immune system).

I have a theory that this will be discovered and be in testing before Burt finishes his phase III trials (around 2010)... perhaps this is just wishful thinking, but it could be that by the time Burt's phase III study is complete it is already obsolete.

What do you reckon are the chances of this?


I hope you're right. It is a distinct possibility since there are several (many?) labs currently working on this specific issue and is the right target:

Researchers publish results settling multiple sclerosis debate

http://media.wayne.edu/2011/02/22/wayne ... s-settling

"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"

"Targeting such disease-causing T-cells in MS is definitely a valid therapeutic approach that should be pursued," Tse added.
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Postby Asher » Sat Sep 03, 2011 3:13 am

On a slightly different note, funny how when you have MS, everything gets attributed to MS. I wrote a while ago about an exacerbation of pre transplantation MS symptoms. In a site describing post chemo side effects for cancer patients I came across the following:

- numbness or 'pins and needles' in your hands and feet

In another site I learned that other neurological side effects are also not uncommon. The good news was these are almost always temporary.

Conclusion: lots of strange stuff will happen in the fist 6 months - don't panic, it is transitory.
Last edited by Asher on Sat Sep 03, 2011 7:26 am, edited 1 time in total.
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Postby HUD45 » Sat Sep 03, 2011 5:43 am

Excellent points Asher. In addition, I think it is very important to live one's life after HSTC and not simply wait for things to happen.Weather good or bad in the first few months and even if just good things happen,simply waiting may be a deterrent to the recovery phase. Iknow it is easier said than done but I am going to assume I have at least stopped the MS progress in it's tracks and hopefully now that the science and study backed medicine is done, a lot of faith in that leap we took will pay off. I know you have it and me too!

Keep the updates coming...your thoughts are wise and appreciated

HUD45
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Postby Asher » Sat Sep 03, 2011 7:42 am

Couldn't agree with you more HUD. And hanging around waiting for life to happen is a poor strategy, MS or no MS. BTW, speaking of recovery, I expect yours will be swifter as the chemo you received was gentler than mine (more like carpet bombing!?).
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Re: My CtrlAltDel - Status

Postby georgegoss » Tue Sep 06, 2011 12:47 pm

Since we're on the subject of living your life following HSCT to cure the underlying MS disease progression (which I have good confidence that both Asher and Hud have accomplished), I share my life's happiness today. . . .

The Next Miracle

http://themscure.blogspot.com/2011/09/next-miracle.html
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Re: My CtrlAltDel - Status

Postby HUD45 » Wed Sep 07, 2011 7:23 am

Most sincere congrats George to you both. What a joyous announcement! I wish you and yours all the best in the future.

As for my status I just was released from the hospital after my wbc count exploded the last 2 days. I had to wait until day 13 for things to go but it happened and now I can travel home soon. I spent 6 nights in the hospital with a lot of I V antibiotics pumped through me. Boy is it nice being rid of the picc line I had for 3 weeks in my arm. I talked to the infectious disease Dr. and they were assuming the fever I had was due to infection from the picc line but they never did isolate a bug so it could have been from anywhere I think. My back is still sore from the neupogen I had to start again. It did not bother me in mobilization phase at all. I started to get a couple of "holes" in my hair, so I waited a day and scrubbed almost all of it away in the shower down the drain. Oh well I did not have much on top anyway.

That is it from Tel Aviv...HUD45
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Re: My CtrlAltDel - Status

Postby georgegoss » Wed Sep 07, 2011 2:56 pm

Thanks for the congrats, Hud. Very sincerely appreciate it.

But most of all, I'm glad you are now successfully wrapping up things in Tel Aviv and will be able to come home soon.

Even though it will take some time to determine (either way), the coming months should most likely indicate to you that your underlying MS disase activity is stopped. I'll also be sincerely wishing that it is accompanied by some existig-symptomatic improvement. Is unpredicable in magnitude, but it is entirely possible. And mainly, once the disease has been verified to be stopped (and no longer causing any more nerve damage), you will have one acheived one of the most important things that I personally put at the top of my lst. . . . you wil get your future back!

I hope you will have the opportunity to keep us all updated on your recovery progress. Especially because the HSCT curative status for your PPMS will have a direct bearing on so many other people that might benefit from the treatment.

Have a wonderful return fligh! Try not to have too big a smile on your face as ou board the plane. Otherwise the Tel Aviv airport security people might suspect something other than just a monumental improvement to your life.

- George
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Re: My CtrlAltDel - Status

Postby Asher » Thu Sep 08, 2011 10:55 am

3-month report

How time flies. Heidelberg University Hospital, chemotherapy and stem cell transplantation, fever, dry skin, intense fatigue, nurses, needles and infusions, all distant and suppressed memories. I am back to my normal weight, the spark in my eyes is back and my hair is slowly but surely reemerging. And most importantly, I’m out of the most critical and vulnerable period for contracting infections. My blood counts are completely restored and well within norm, indicating my immunity is providing me, albeit partially, some protection from infection.

Although I knew better, deep down I admit I was hoping for a miracle; to step off my hospital bed and have the clock turned back 15 years. No fatigue, no spasms, no weak limbs, no drop foot. And darn, my good old trusted companions are still there!? I should note though that some of those symptoms are common post high-dose-chemo side effects. Combine this with an already damaged nervous system and you get a few miserable weeks/months.

Yep, welcome to reality. This is real life, not a ‘miracle healing’ show. I cannot expect a nervous system that has been battered for 15 year to heal overnight. At this stage, even though it may seem that way, I cannot yet say for sure that my MS progression has stopped. What’s left is to trust the science and the reports of people who have been there.

So what is there to report? As I wrote, I am back to my normal weight, the spark in my eyes is back and my hair is slowly but surely reemerging. I am gaining strength. Not as fast as I would have liked to, but people around me say that I am making good progress. I can walk 200 meters (650 feed) and walk (limp) unaided. Brain fog and the so-called MS hug are gone. The experience of life is no longer opaque.

And now, the painstaking process of slowly healing. In 3 months from now I will be able to say with some confidence that the MS has indeed been stopped in its tracks. Through exercise, a healthy diet, sufficient rest and, not least, positivity, i hope to restore some of the damage to my nervous system and recover at least some of the lost function.

As I once wrote, expecting tomorrow will be worse than today has given way to hope that tomorrow will be better than today.
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Re: My CtrlAltDel - Status

Postby Asher » Tue Oct 11, 2011 3:40 am

A 4 Month Report

Before starting to speak of myself, I want to wish Stella a speedy recovery from her unfortunate ordeal. Her story is a reminder that however rare these cases may be, HSTC remains a serious procedure that does not come without risk. Not a reason to write it off as an option, but a good reason to make sure it is being carried out by a facility that can competently deal with any contingency.

Healing from HSTC is one more thing that should not be taken lightly. It has been 4 months since the transplant and I‘m still coping with chemo related fatigue and weakness. This combined with weak legs resulted in me slipping in the bathroom and breaking a rib. As such not that bad, it will heal, but the pain means I cannot exercise, and this is slowing down what already feels like an endless recovery process.

Having said the above, I am still happy and grateful that I had the treatment. Despite the bathroom accident, my blood values are 100% normal; the spasms in my legs are all but gone and I don’t detect any signs of disease progression versus the pre HSTC period. Some things are even getting better. With some difficulty, but I can hold a pen and write again. My muscles seem to be strengthening and there is still no trace of the pre HSCT optic neuritis.

But as I wrote in earlier posts, it will not be before a couple of moths that I will be able or not to report that the MS has been definitely brought to a halt and perhaps report of some signs of partial recovery of motor function. Will keep you posted.
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Re: My CtrlAltDel - Status

Postby shucks » Tue Oct 11, 2011 5:27 am

Please keep us posted Asher. What is going on with Stella is horrible, and severe, but she is the only case I run across that is that way. Her ordeal is a reminder that this stuff is serious, but as several folks here can attest, the benefits may be worth that risk.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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