My CtrlAltDel - Status

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Re: My CtrlAltDel - Status

Postby HUD45 » Thu Sep 27, 2012 8:59 am

Hello all,

I would like to update my status as well for others to benefit. I had autologus non myeloblative BMT for my PPMS at(CTCI Tel Aviv) completed Aug 20 2011. After several months of being stable, my condition worsened gradually again until the piont last spring I had to do something else. I am still ambulatory and had to try anything I could to stop this progression.

After collaborating with CTCi further and updating my medical info, I and my siblings were HLA tested for a potential mini allo transplant. I was lucky enough to have a 100% match and proceeded with the mini allo transplant completed june 20 2012.

As far as i know I am #4 in the world to have a allogenic transplant for autoimmune disorder. I have had no sign of GVHd, but the most likely time is approaching and I hope for the best on that as well as overall treatment success, of course to be determined in the coming year or two.

I give Asher all the credit in the world for continuing the fight. I thought I would be the only one to have transplants in consecutive years that I ever knew of.

I have spoken to Prof Slavin about MSC several times. He does keep up with patients treated in the past but only the ones that choose to correspond with him. Most seem to just disappear. He obviously gives no guarantees about success and states that the technology is just too new to predict on a case by case basis. He does believe in the treatment deeply but for now and frustratingly so, can only identify animal models for proof except incidental anecdotal human evidence.

On a side note. I just caught a cold from my son and I am gonna test this new immune system out this week I guess. My hair is just returning and it is way earlier than I was hoping for a cold. At least it is not the flu.

HUD
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Re: My CtrlAltDel - Status

Postby shucks » Thu Sep 27, 2012 11:57 am

HUD,
How long had you been diagnosed prior to the initial HSCT? Did you have any active lesions whatsoever? Since you are PP, I would assume you did not, but I would like to know. Can you tell if the BMT has allieviated any of your symptoms?

Thanks
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Re: My CtrlAltDel - Status

Postby HUD45 » Thu Sep 27, 2012 12:21 pm

No problem Shucks,

I was diagnosed in 2007, so 4 years prior to initial HSCT.

I have never had much for active lesions, just slight enhancements in cervical spine

The chemo was different this time and it is taking longer to shake the effects but I can say that the fatigue and brain fog is improving the last several weeks. My heat tolerance seems also improved a notch. I am hoping for leg strength improvement but if I can stop the slide I will take it.

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Re: My CtrlAltDel - Status

Postby shucks » Thu Sep 27, 2012 2:28 pm

were you diagnosed PP or were you initially RR?
"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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Re: My CtrlAltDel - Status

Postby HUD45 » Fri Sep 28, 2012 6:41 am

I was diagnosed Primary Progressive and as you know it takes time to get that diagnosis as Neuro's do not want to be wrong even at the expense of keeping the patient in lmbo.

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Re: My CtrlAltDel - Status

Postby packo » Sat Sep 29, 2012 5:18 am

Hello to all off you,

For those who do not know (it has been a while since my last post), I am the guy that did the non-myeloablative HSCT at Hadassah, Jerusalem, in late 2006-early 2007. Back then, Prof. Slavin was still at Hadassah, and CTCI was still in construction. Before the HSCT I was SPMS with EDSS 6-6.5 (let’s say 6.25, sometimes was able to walk only few meters with crutches). My latest MRI prior to HSCT did not show signs of any new lesions, but Prof. Slavin, Prof. Dimitrios Karussis (professor in neurology at Hadassah) and neurologist in my native country concluded that the absence of lesions might be the result of Mitoxantrone treatment. So Prof. Slavin decided to go with the HSCT despite the absence of new lesions – Hadassah is not a private clinic, so the criteria for such a treatment back then were more rigorous. Here is my typical working day:

6.20 AM – I get up
6.30 – 7.30 – cycling in my room
7.30 – 8.30 – upper body exercises, including weightlifting, 20 x 60 push-ups, boxing with 3 kg in each hand
8.30 – 9.20 – lower body exercises
9.45 AM – 5 PM –working, I work at home
5.30 -6 PM- weightlifting
6 – 6.30 rest
7 – 9 PM working
9.15 – 10.15 PM walking (I walk with crutches when being outside, but my left leg is 3 cm shorter and still 35% weaker due to the nasty fracture 5 years ago, so that combined with my previous balance problems means crutches are my friends for now)

One final note – this year during holidays I managed to swim 2 kilometers without stopping, and prior to that I spent 2 hours in a gym with weights

Ever since the HSCT I am totally drug free, no signs of new lesions, thank you Prof. Slavin for giving me my life back!

p.s. HUD, Asher – everything will end up well, I am sure, never, never give up!
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Re: My CtrlAltDel - Status

Postby Asher » Sat Sep 29, 2012 6:03 am

Oh Packo, did i long to hear drom you. So glad to hear you'r doing well. I admire your resolve and positive outlook on life. Although it's no cure, is certainly is an important part of the mix.

Yeah, Slavin is a brave and innovative medical scientist and practitioner. In hindsight, I wish I did my HSCT with him and not in Heidelberg. He is exceptionally good at what he does, and Hud is an example where if one strategy fails to work, Prof. Slavin has an alternative up his sleeve.

Take care Packo, you are the reason I cycle on my home trainer 5 times a week.
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Re: My CtrlAltDel - Status

Postby packo » Sat Sep 29, 2012 9:26 am

Craig Garisson http://www.mult-sclerosis.org/craigsstory.html

one of my inspirations for the HSCT, went through the myeloablative HSCT + TBI (total body irradiation!), and apparently he is doing fine. Our current understanding of the MS does not allow us to answer the question: Why the HSCT works for somebody?

Regarding Prof. Slavin, he is indeed a remarkable individual ready to think and act beyond limits.

p.s. keep cycling :)
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Re: My CtrlAltDel - Status

Postby shucks » Sat Sep 29, 2012 5:30 pm

I'm not a cyclist, and don't care to be :). But I do think very highly of all of you guys and you are the ones who have led me to this juncture. If I can raise the money, I will be heading to Chicago. They are some great folks and have made me trust them.
"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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Re: My CtrlAltDel - Status

Postby Liberation » Sun Oct 07, 2012 2:59 am

Anyone can give advice how to raise funds for stem cell treatment? I was thinking about targeting organizations, big companies or wealthy individuals. Unfortunatelly, where I live no local funding is available.
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Re: My CtrlAltDel - Status

Postby shucks » Sun Oct 07, 2012 7:50 am

A few friends of mine started a 501c3. I'm not sure where you live, but in he us, it is much easier for large organizations to give if it is tax deductible. We have sponsored a battle of the bands, silent auction, and now a golf tournament. All of the money runs to the tax deductible organization and companies can buy things with tax deductible money. It has been a really humbling experience. The tonight about he tax deductible organization is that it can't be for the benefit of a single person and people on the board can't get money from it. Once it helps you, then you can keep trying to raise money and give it to people in the community who need it for medical problems. It would allow you to help people like you we're helped.
"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

Who is John Galt?
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Re: My CtrlAltDel - Status

Postby HUD45 » Mon Oct 08, 2012 7:31 am

packo wrote:Hello to all off you,

For those who do not know (it has been a while since my last post), I am the guy that did the non-myeloablative HSCT at Hadassah, Jerusalem, in late 2006-early 2007. Back then, Prof. Slavin was still at Hadassah, and CTCI was still in construction. Before the HSCT I was SPMS with EDSS 6-6.5 (let’s say 6.25, sometimes was able to walk only few meters with crutches). My latest MRI prior to HSCT did not show signs of any new lesions, but Prof. Slavin, Prof. Dimitrios Karussis (professor in neurology at Hadassah) and neurologist in my native country concluded that the absence of lesions might be the result of Mitoxantrone treatment. So Prof. Slavin decided to go with the HSCT despite the absence of new lesions – Hadassah is not a private clinic, so the criteria for such a treatment back then were more rigorous. Here is my typical working day:

6.20 AM – I get up
6.30 – 7.30 – cycling in my room
7.30 – 8.30 – upper body exercises, including weightlifting, 20 x 60 push-ups, boxing with 3 kg in each hand
8.30 – 9.20 – lower body exercises
9.45 AM – 5 PM –working, I work at home
5.30 -6 PM- weightlifting
6 – 6.30 rest
7 – 9 PM working
9.15 – 10.15 PM walking (I walk with crutches when being outside, but my left leg is 3 cm shorter and still 35% weaker due to the nasty fracture 5 years ago, so that combined with my previous balance problems means crutches are my friends for now)

One final note – this year during holidays I managed to swim 2 kilometers without stopping, and prior to that I spent 2 hours in a gym with weights

Ever since the HSCT I am totally drug free, no signs of new lesions, thank you Prof. Slavin for giving me my life back!

p.s. HUD, Asher – everything will end up well, I am sure, never, never give up!



Hi Packo, thanks for the motivation.

I think about your awesome regimin when I am doing my own exercise.

I think to myself when I am doing my pushups and situps "you can do another set, Packo would".

My regimin pales in comparison to yours of course and I am hoping for the stamina to return gradually to increase the intensity of my workouts.

There is no doubt that Prof. Slavin thinks about cases on an individual basis so there is no "cookie cutter" evaluations and recommendations. His experience and body of knowledge is truly second to none.

Good luck and keep on moving....HUD
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Re: My CtrlAltDel - Status

Postby packo » Tue Oct 09, 2012 1:58 pm

Come on HUD, if somebody deserves respect, than it is you! You went through something very nasty twice, big big RESPECT!

Regarding allo HSCT, first time I met Prof. Slavin (March 2006) he spoke about a person (I think boy) who went through that and apparently was fine back then. Maybe I misunderstood him, so you could ask him about that. But I am certain that Prof. Slavin focuses much of his attention to GVHd, I remember that doctors and hospital staff at Hadassah told me that back then.
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Re: My CtrlAltDel - Status

Postby Asher » Mon Oct 22, 2012 5:49 pm

Today the BMI will be performed at Prof. Slavin's CTCI: http://www.ctcicenter.com as step 1 of a Mesenchymal Stem Cell Transplantation.

This is coming 16 months after HSCT in Heidelberg, Germany. The treatment has had a positive but unfortunately temporary effect and the disease (SPMS) is progressing again.

Here is a 2010 a phase 1/2 clinical trial report, with encouraging results, in which prof. Slavin was involved: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036569/
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Re: My CtrlAltDel - Status

Postby Pesho » Tue Dec 11, 2012 11:06 am

Guys, any information on bad results from HSCT on patients with RRMS? In Bulgarian forums some people are trying to convince me that this does not help, that they know people that have done it with no results. Of course they don't mention hospitals, condition of patient, treatment or anything, only that it is with stem cells and that it didn't help.... To be honest I think that they are just trolling or don't believe anything after so many years of suffering. Does anyone have any official results from long going tests, because I'm not aware of any.
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