My CtrlAltDel - Status

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Re: My CtrlAltDel - Status

Postby shucks » Wed Dec 14, 2011 6:56 pm

Merlin,

I understand your pain. It is frustrating, but I think of it this way in my Randian mind : If not for the folks who take the risks and pay the huge amounts, those of us who need help with their issues would never get it , as the market wouldn't come up with these solutions without some payment commiserate with the service provided. We should thank the Dr's who perform for money and the patients who pay the money for paving the way for th rest of us. The issue I have is with the crony capitalism that allows a drug like copaxone, which I take every day, to be approved due to millions of dolars in FDA bribery in a relatively few years, while a truly helpful agent takes 25 yrs to get to us since it's been around for 50 yrs and the only group it helps is the patient. I have had a pretty tough go of it the last year myself, and while I thought It would strengthen My faith in govt and change my mind on the power of the free market, it has done the opposite. I wish you the best, and will add you to my prayers. The world is an unfair place.
Last edited by shucks on Wed Dec 14, 2011 7:19 pm, edited 2 times in total.
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Re: My CtrlAltDel - Status

Postby CVfactor » Wed Dec 14, 2011 6:59 pm

merlin26,

Yes it is a shame that this treatment is at arms reach yet out of touch for so many. The only suggestion would be to try to get into a trial with Dr. Burt at Northwestern.
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Re: My CtrlAltDel - Status

Postby georgegoss » Wed Dec 14, 2011 8:12 pm

merlin26 wrote:Wow that sucks for me then. I dont have 50,000 euros and I dont think ill ever be in the financial position to be able to pay the 50k euros. Once again people with money win out over those of us that dont as of yet have any. If I sound bitter its because I am. I was diagnosed at 25 the youngest patient my neuro says he'd ever seen and now im 33 and on SSDI. So in summary I can wait until im 43 and have this procedure done and covered by Medicare or come up with 50k euros. Either way ive lost out on my youth, fantastic.


Agreed that the #1 hurdle for most people is the cost of the procedure. In that it "might" help some people, the same HSCT procedure that Asher and I had in Heidelberg can be had in India for a flat $40K price. As listed on the following page (Dr. Amit Rauthan at Manipal Hospital, Bangalore, India). One MS'er has already been treated there (three months ago) and it looks like so far she has come through OK:

http://themscure.blogspot.com/2011/06/g ... -have.html

Still expensive, but less than the rest. Maybe time to start a charitable fundraising program?

And thanks to Shucks for the comments. I wish this site had a "thumbs up" button.

And CVfactor. . . . your point wasn't lost. You correctly pointed out that any facility that can perform an allogeneic HSCT procedure can surely perform an autologous HSCT procedure for MS.
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Re: My CtrlAltDel - Status

Postby HUD45 » Thu Dec 15, 2011 8:31 am

No doubt we live in a frustrating time. The technology is there and this HSCT can be performed in every state in the USA safely including acceptable risks. The almost identical protocols are performed for cancer specific conditions all the time. I said the same probably fifty times when I was feeling sick from my own transplant, lying in bed in Tel Aviv wondering why I had to travel so far to see if I could stop my MS. The procedure itself is stressful. Throw travel and mostly foreign language in on top of the high cost of the procedure and the difficulty mounts.

I also was pondering why it takes so much money to change hands for these treatments to even be an option for most MSers. While all the dirty tricks and hand wringing goes on, time passes and so many autoimmune sufferers disease status worsens. I really feel for you Merlin as well as everyone else affected by MS. We are all usually fairly young when diagnosed. I hope this becomes a recognized, fully accepted treatment sooner than 10 years from now...HUD
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Re: My CtrlAltDel - Status

Postby packo » Sat Dec 17, 2011 7:04 am

merlin26 wrote:Wow that sucks for me then. I dont have 50,000 euros and I dont think ill ever be in the financial position to be able to pay the 50k euros. Once again people with money win out over those of us that dont as of yet have any. If I sound bitter its because I am. I was diagnosed at 25 the youngest patient my neuro says he'd ever seen and now im 33 and on SSDI. So in summary I can wait until im 43 and have this procedure done and covered by Medicare or come up with 50k euros. Either way ive lost out on my youth, fantastic.


Merlin, if you think this will help you, fight for it!!!!!! You live in the USA, there's got to be money somewhere. For example, write a letter to Oprah Winfrey and explain everything, tell her this is your only chance...write thousand of those letters to rich, famous and powerful people asking a donation, if it does not work, call the TV station and tell them what you are doing....if nothing works, for Christ's Sake, get out on the street and attach a paper on your body saying - I need money to live.

There is only one life and you owe it to yourself, you simply owe that to yourself. Maybe in the end it will not work, but statistically, chances that it will work are much higher if you try and do your best.

"When you want something, all the universe conspires in helping you to achieve it. "
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Re: My CtrlAltDel - Status

Postby CVfactor » Sat Dec 17, 2011 9:32 am

There is definetely money out there. The National MS Society is giving nearly 3 million dollars to fund CCSVI investigations. This is why I no longer give to this organization. But I would gladly donate to a legitimate organization who's purpose is to cure people of MS using HSCT with the Northwestern or Heidleberg protocol. If people understood this procedure I think many would give also.
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Re: My CtrlAltDel - Status

Postby Asher » Mon Dec 19, 2011 12:30 pm

Merlin, Packo took the words right out of my mouth. Bill Gates might want to help you, provided you strike the right note! Want support? I'm willing to help you write the letter, people say I am pretty good at it. Just don't give up on yourself. Asher
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Re: My CtrlAltDel - Status

Postby georgegoss » Mon Dec 19, 2011 1:39 pm

I'm kind of surprised that my HSCT blog has taken on a life of its own with so many people around the world reading it. I would have never predicted this when I first decided to pursure HSCT for myself (and had wished I had a blog similar to my own to read, but nothing like this existed at that time in 2008).

But I'm also glad to know that there are so many people all around the world that are seeking to seriously take control and beat their disease. So far I've had an opportunity to help share what I've learned with nearly a dozen other people that have gone on to receive transplants to stop their own MS at various locations around the world (US, Europe, India, Middle East). And I am now communicating with approximately another dozen people that are planning to complete HSCT, three of which will land in Heidelberg early in the new year.

Relative to Asher's and my own HSCT in Heidelberg, one of the people that I recently connected with just sent me this e-mail that I wanted to share (makes me feel good that Dr. Burt approves of Heidelberg's BEAM protocol):



Hi George,

I received a confirmation email from Dr. Snarski that Dr. Platen is reviewing my case again and they will let me know. Thanks again for your great support!

Yesterday I was in Chicago to meet with Dr. Burt. While it was not official, I give it 95% chance they would accept me into the MIST trial. However, the 50% risk of being assigned to the control arm is not a risk I'm willing to take. There's a question whether my MS meets McDonald critieria and if it doesn't he will do it under compassionate needs. I will only do it in Chicago if my insurance covers it (doubtful).

I mentioned to him I was considering Heidelberg for HSCT and it turns out he knows Dr. Ho and he spoke in Heidelberg regarding his research at the invitation of Dr. Ho. Burt believes that while BEAM protocol delivers unnecessary toxicity to the body it's a good second choice to his lymphoablative protocol because it's not as aggressive as other high dose chemo treatments he has worked with. This was good to hear from the leading researcher working with HSCT for autoimmune diseases.

Keep you posted when I hear from Heidelberg. I'm hopeful to hear good news soon.

Best,

[redacted]
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Re: My CtrlAltDel - Status

Postby shaight » Thu Feb 23, 2012 9:22 am

has anyone heard an update from Asher? i hope all is going well on his rode to recovery!
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Re: My CtrlAltDel - Status

Postby Asher » Thu Feb 23, 2012 1:11 pm

Hi shaight, George, who is at hospital with his wife, welcoming their new baby, drew my attention to your question. I'm alive and kicking. March 8 will be 9 months since my transplantation and was planning to post a progress report. Take care, Asher
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Re: My CtrlAltDel - Status

Postby shaight » Fri Feb 24, 2012 11:46 am

alright Asher! i'm glad you're "alive and kicking!"
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Re: My CtrlAltDel - Status

Postby Asher » Sun Mar 11, 2012 1:29 am

A 9 month report; how time flies...

Boy, did I underestimate the aftermath of Myeloablative Chemotherapy. The first 7 months were a bumpy ride; ups and downs, old MS symptoms fading away only to come back 2 weeks later and then go away again. It felt like my body was playing tricks on me. It was sometimes impossible to tell MS symptoms from the residual chemo effects, giving rise to an ongoing anxiety that I am on the wrong side of the probability curve and that maybe, for me and my MS, HSCT did not work. For the sake of clarity, I feel it will not be until 12 or even 15 months post HSCT before I can unequivocally declare victory over MS. With this disclaimer in mind and 9 months post HSCT, I am now over the bulk of the residual chemo effects and I am starting to get a clearer helicopter view of my post-HSCT status - a pattern is emerging of ‘two steps ahead and one step back'. But the most obvious sign for me that something is going on is the complements I get from people who know me well. Without exception, all remark that I look better than I have in years.

To cut a long story short, from a Mental and Cognitive point of view both my Stamina and Agility are unmistakably and unquestionably right back to where they were 10 years ago; an overall sense of well-being and transparency that I haven’t experienced in years. Hardly any mood swings anymore, short-term memory entirely restored and my cognitive acuity & speed are fully back on track. Surprisingly for me, my mental and cognitive capacities no longer diminish coincident with physical fatigue.

From a Physical point of view I am still somewhat weak and MS symptomatic improvement progress is lagging the improvement I have seen in my mental and cognitive progress. Never-the-less, there are a few good things going on that are worth reporting:

- Heat intolerance (or tolerance if you like) is entirely 100% resolved
- Vertigo 90% resolved
- Bowel movement issues entirely resolved
- Urgency 70% resolved
- Optic-neuritis 80% resolved
- Spasms in right leg 90% resolved
- Purple foot 80% resolved
- I sleep well and wake up fresher as compared to pre-HSCT
- 16 hour days with no need for a nap
- Walking range back to pre HSCT (700 meters) without walking aids that were needed before
- Speech and swallowing entirely restored
- I can write a whole sentence again and I find it easier to button my shirt
- Finally, I regularly sport on my home exercise trainer and I am making impressive progress.

Now that I read what I have just written I realize that I have made greater progress than I previously dared to grant myself. And bear in mind that I went into the procedure with SPMS even though HSCT appears to be most efficacious for RRMS. Going into this adventure, all I hoped for was to stop the beast, to stop the slide down the slippery slope called worsening MS progression. I ask you to grant me a few more months to make this bold statement with absolute confidence, which I guess is my cautious nature. I also realize that many people are reading HSCT treatment veteran accounts and with this comes responsibility to report cautiously and responsibly, which I endeavor to do. In asking myself the overall question. . . . knowing what I know now and turning the clock back, would I do HSCT for my MS all over again? The answer is a definite yes!!

The following months will be interesting: will the remission of MS symptoms continue (primarily foot-drop and staying power)? Will MS progression continue to stay at bay? Will the MRI I took last week show no new lesions? Curious for the answers? Read the next episode of my soap, June 8.
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Re: My CtrlAltDel - Status

Postby shaight » Thu Mar 15, 2012 10:52 am

Asher - this is good news! the fact that you would do again is great news! i'm sure you will continue to improve over time and thank you for the update. we are all pulling for you!

i've been following the "stem cell warriors" the george mentioned on facebook. it is quite the page with many HSCT patients posting.

keep moving forward!
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Re: My CtrlAltDel - Status

Postby Asher » Fri Mar 16, 2012 2:02 am

Thank you shaight for your encouragement, I truly appreciate it. Asher
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Re: My CtrlAltDel - Status

Postby shucks » Fri Mar 16, 2012 3:46 am

Its really enlightening to hear a frank but optimistic perspective. I hope you reach your every goal with the treatment. I am still fghting insurance to get into Dr Burts study. You packo and George are real assets. I have been corresponding with someone who had the non myleabltive about the same time you dd but is not as well versed on the treatments. He is doing better as well. I wish we had a list of folks we could find wo had it, and their frst hand beliefsof their experience.
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