I want to try the stem cell transplant.

[inmoni5]

I have been researching ALL the treatments for ms. I am not happy with all the CRAB and Tysabri drug choices. It seems that they all have the potential to cause cancer as a small percentage rate. However small, I refuse to use any type of drug that could cause something that is worse than what I already have.

Since my diagnoses I have been on a steady decline in my health and stamina and muscle strength.

My main concern regarding the stem cell transplant is the chemotherepy part. That does scare me a bit. Mainly because I know a person gets very sick and I do have 3 young children in school. Which they do bring home illnesses...common cold, strep throat, flu, etc.

I am making contact with the Universities, clinics that do this procedure...hoping that I can be put on a waiting list or something of that sort.

Can anyone give me some advice on the chemotherepy part regarding this treatment?

[Scooter24]

The chemo and the possible results from it are what would keep me away from the stem cell treatments, I have had cancer and only rcvd 4 of 6 chemo treatments they had planned for me as I had very bad response to it, I ended up in the hospital 3 times for dehydration and other problems and still am recoping from it almost 3 yrs later, I can't imagine what it would be like to go thru the massive amounts that are required to do this treatment. I have told my wife that if my cancer should show back up it will kill me me as I will not go thru that again. just my opinion. I am on TY and am pos for JCV virus but feel much more comfortable with that.

[Frederick1]

I believe the Chemo comes with a small chance of death. Obviously that would be worse than living with MS.

[ViLee]

Wait

Please see my posts-today- in Panama and in Only Cure for MS in this forum.
I believe EVENTUALLY this will be a good option but not NOW.
Meantime, do the impossible: Keep moving, practicing moving, patterning moving. Better to work in rehab establishments with experienced neuro physical therapists (stroke, cp, whatever) than to rely on MS neurologists.

[Minty]

Stem cell tranlsplant

Dr. Burt at Northwestern University in Chicago has had great success treating MS with stem cell therapy. He uses the bodies own stem cells(autologous).
The chemo meds are only directed at specific organs unlike cancer med that permeate the entire bodily system because cancer metastisizes.
The evaluation is done very thoroughly and carefully to make sure the patient can be accepted as a candidate.
You can call Northwestern Stem Cell Therapy Dept. and they will help you and answer you questions or you could write to them and be sure to ask as many questions as you can.

[Cate Power]

Assuming this lasts the screening process, the following blog was from a woman who was part of HALT-MS trial:
**personal blog/website removed by Moderator in compliance with MSWorld guidelines. this may be put in your profile for all registered, logged-in members to see**
Seems rather high risk, but w/ time could hold nuch promise. Think-wiping out and reconstituting entire immunosuppressive system. I can't imagine what that would do, e.g., to vaccines received over a lifetime.

[Thinkimjob]

How can they direct chemotherapy meds only at certain organs? Once it's in your system, surely it's flowing through your whole system? I could, of course, be wrong.
Sounds like paracemetol for headache, paracemetol for period pain, paracetemol for backache etc.
It's exactly the same paracemetol, same dose, different thing on the label and more expensive.

[georgegoss]

How can they direct chemotherapy meds only at certain organs? Once it's in your system, surely it's flowing through your whole system? I could, of course, be wrong.
Sounds like paracemetol for headache, paracemetol for period pain, paracetemol for backache etc.
It's exactly the same paracemetol, same dose, different thing on the label and more expensive.

Very good point.

In actuality, chemo drugs are completely indescriminate because they circulate systemically in the body during treatment. However, not all chemo is the same and not all chemo protocols can be directly compared to each other (doing so shows a profound ignorance as to how this therapy works).

The current two HSCT therapies incorpoarte chemicals that "preferentially" ablate lymphocytes (the intended target of the therapy) to halt the underlying MS disease activity and progression in the body. However, the chemicals do have an unintended effect on some other cells in the body (such as hair folicles that will cease operating for a few months in which people temporarily lose their hair). But overall, chemo drugs are designed to target "types" of cells, as opposed to all cells of the body.

Of the two current HSCT stem cell transplantation therapies, they both have a 'relatively' low mortality risk with a death rate of under 1%. So in actuality it is up to each individual to decide for themselves (and not for others) if this is an acceptable risk.

Here is an unbiased description of the two different protocols, along with facilities that I am aware of that will administer them (although I'm sure there must be more facilities than what I have listed here):

http://themscure.blogspot.com/2011/0...-you-have.html

[Therapy Queen]

Like stated previously, I think that Stem Cell Therapy may be the answer in the future- but right now it's not a good option. I also think that chemo going to be very hard on anybody and you need to weigh the risks based on your personal history and what your doctor recommends. Best Wishes!

[georgegoss]

Like stated previously, I think that Stem Cell Therapy may be the answer in the future- but right now it's not a good option. I also think that chemo going to be very hard on anybody and you need to weigh the risks based on your personal history and what your doctor recommends. Best Wishes!

Thanks for your opinion on this, twice. However, it is not up to you or I to decide for other people. Each individual should make their own decisions on how to manage their own health. Preferably an educated and informed decision because for some people this is a good treatment option, just as it has been for me and many other people that have experienced fantastic benefit from the same (HSCT) treatment.

[jbell2435]

covered by insurance, cost?

I was just wondering if it is covered by insurance? Also, what exactly is involved?

My dh and I were discussing this yesterday and I will ask my Mayo neuro next visit in May...

Just wanted to get a few details. Thanks.

[GIZZY]

Had Stem cell therapy

Went to Costa Rica 2 yrs ago for therapy. NO RESULTS........ It may help newly dxd. My dr, warned me to save my $30,000. It wont work. Wish I listened to him. Had MS 20 yrs. Too much damage already done to my system.

Save your $$$$$$$$$$$$$$$$$44

[kkitten]

stem cell therapy in Australia

Hi, There is a clinic in Sydney Australia doing stem cell work using your own fat cells- no chemo & they actually gaurantee no rejection.
They have had great success with treating some types of osteoarthritis & are now doing quite a few MS patients. I'm keeping a close eye on what's happening - they are a private clinic & charge $10,000 for the treatment. It's a lot of money but its not as bad as having to go to Panama etc & cheaper & safer than what is happening there.
I won't post addresses etc as I'm sure if you google it you will find it.

Karen

[izziebean]

I do not regret the chemo.

For me, I was having attack after attack. Every three months I was back at the mayo clinic in Florida from a new attack. I was tanking fast when I found Dr. Burt.

My first MRI at Northwestern showed 5 new enhanced lesions and a black hole. Because of the number of attacks in the prior year and my failure to get better with any of the DMDs, I was added to his study. That was two years ago.

Since then, no new attacks.

Chemo. Not for the feint of heart. I went into battle mode. This was my way of fighting back.

I am not 'cured'. Past damage and symptoms still haunt me. My vision still waxes and wanes. Some days I walk better than other days, but almost every day I can walk without assistance. Fatigue is still a problem. Spasticity.. the stupid cramping drives me nuts. The pain comes on fast and severe (and never when I'm doing something that should warrant a muscle cramp). AND heat??? My body begins to shut down with any temperature over 72 degrees after about 3 to 5 minutes. I have migraines a lot... a whole lot, but I'm learning triggers and beginning to see an improvement.

BUT! even with the long list above... the difference now after chemo is that I am no longer adding on new symptoms. I am learning how to live again in spite of my disease. Last week I had almost 5 days in a row of feeling like a 'normal'. (But then heartbroken when severe fatigue and migraines hit and I had to spend 2 days in bed).

Currently, no DMDs. No new attacks or symptoms. No regrets.

[SugarLand]

If you want a large dose (600 million) of your own stem cells, extracted from fat tissue, contact the stem cell bank in Houston TX