Whyare people so uninterested in having SCT?

[Katje]

Are you saying no one has had adverse reactions to HSCT?
If it's all been "good" and it hasn't happened to anyone else why would you be afraid?
Have you lost your objectivity about this procedure?

I am not afraid of losing my Qol with the procedure. if I was worse off I sure wouldn't be worried about that. Unless they mean death, I can understand that but people die from MS as also.

I guess I had this disease for so long and seen so many people suffer over the years, I just want it all to end for everyone. Some of the posts I read just gut me. Seems like society in general has little concern for pwMS, I feel like we really only have each other.

[Katje]

Thank you Misslux for providing the link.

And thanks to Katje who provokes so much thinking on the stem cell issue. The trial does say that results have not been posted. Maybe nothing detrimental has happened, but we can be certain only after results are published.

Often there early signals including anecdotal reports such as patients speaking up about good personal results, and that’s great. But negatives may not see the light of day until trial results are published. Nor is it unusual after trials and FDA approval and a treatment is given to a wider-ranging patient population than those selected for the trial, additional problems show up.

Katje is on the right track believing the positives significantly outweigh the negatives, IMO. But each individual is unique and will rate positives and negatives on a personal scale. Everyone makes personal choices suited to their own life. Most will agree that treatment options are terribly difficult in MS.

Many of us would love to follow your progress through this procedure, Katje. Your logic makes a great deal of sense to me. I’m pulling for you. You can do this, I believe in you and I believe you will succeed. Be strong and of good courage!

How would I know if it worked? Unless I just feel amazingly good afterwards not realizing I been so sick all these years. This is what bothers me because I dont have problems walking, odd sensations etc.... so how wil I know if it worked on me? Maybe if the MRI shows no activity so they call it a success?

[abeautifullife]

I am with you on the stem cells, Katje, and would apply for the trial in a hot second if I qualified. But my level of disability is too low (gotta be a 2 on the edss scale at least) and my MS is completely quiet on rebif. I cannot anticipate things staying this good forever, though. I will keep an eye on the trials. Best wishes to you

[Thinkimjob]

It is indeed very interesting, Myoak. Thank you for all your encouraging words.
Only thing with Job - he was a big winner in the end, but I don't think his first wife and family got much out of the deal.

[Tawanda]

The wiping out the old immune system part...

Katie I am 49 and going to do it. I have a 6 and 7 year old, They need me to be able to do things with them. I have to do this. So 50 is not too old. I know of someone who was 56 when she did it. She is fine.

People who have cancer die from cancer not the stem cell treatment.

My brother died of cancer, but not after trying every conceivable form of treatment. The last one? A bone marrow transplant. He got nuked within an inch of his life with a huge dose of chemo. for the purpose of wiping out his immune system. Next, I donated my bone-marrow and it was transplanted into him. It failed. When they did his biopsy, "male" marrow was the result. Had it "taken", it would have been female marrow, because it would have been mine...kinda' like starter dough.

I am intrigued by the non-chemo research I saw mentioned in this thread. Otherwise, I just can't see myself going through with it.

Of course, having end-stage cancer is not the same as M.S. I am guessing we would be stronger before undergoing that "wiping out the old immune system" part (although it for sure would not be a picnic), and no doubt they have made advances since I tried to help my poor brother back in '94.

In any event, good luck to all you pioneers. I wish you well.

[Myoak]

So many great posts. The link which Misslux graciously provided has trial details. Some of the inclusion criteria are:

1. Age between18-55.
2. An EDSS of 2.0 to 6.0.

Katje asked how she would know if it worked. The primary and secondary endpoints are listed in the link. Trial success will be based on those values. Individual interpretation of success will be unique to each individual. Kristy Cruise had observable changes with HSCT. Her walking improved greatly.

How anyone else would fare depends in part on where they started. IMO, a reasonable healthy MSer would on average fare substantially better than a stage 4 cancer patient. Younger, stronger should tolerate HSCT better than older, weaker. Katje, only you can answer the question of how it worked for you.

Tawanda, I was touched by your story and I’m so sorry about your brother. You are a kind person and a wonderful sister. The non-chemo treatment by Pender in Australia is promising, I’m glad you took a look at the link. Also, you may know I'm a big fan of the Charcot Project which relates to EBV in MS, also.

Abeautifulife, Rebiff may work very well for a very, very long time. Keep doing the healthy things you know to do. Even w/o MS there are huge benefits to a healthy lifestyle but with MS, I believe diet, exercise, lowering stress will result in fewer exacerbations but at the very least will lower the probability of developing another serious problem. But you know that.

Thinkimjob, you have a delightful intellect and sense of humor. Now, you can’t be both Job and Job’s first wife. Maybe Job’s second wife? And doubtless one with whom midnight conversations would be intimate and satisfying. The pressures in your life created a diamond we all enjoy. MS is tough and miserable but you always manage to shine in spite of it.

[Thinkimjob]

My friend's dad had leukaemia. They did the take his bone marrow, wipe out his immune system, reinject it four times. I suppose it worked, but it was a really miserable last four years. He was at death's door, just not knocking.

So sorry about your brother, Tawanda.

[ewizabeth]

Great that Copaxone is working well for you! Do you supplement with Vit D, follow a special diet, or take LDN as some others on Copaxone do?

Myoak,

I am almost 56 years old and I have had mild MS for many years. I have a very healthy diet with lots of healthy fats and lots of fresh veggies most days. I work out regularly but not as much as I should. I also take 2000 iu of vitamin D. MS is an inflammatory condition in many people. If you research how to reduce inflammation in the body you will find many ways to calm the disease. I also get a lot of sleep and take regular vacations, at least two weeks a year. I feel as though I will live until 90 and be pretty healthy at that.

I'm very fortunate but I know that many others are following similar habits and also doing pretty well with MS and other inflammatory diseases. It won't work for everyone but I am proof that it can be done. My doctors are very happy with my health at my age considering all of the health issues I juggle to keep at bay.

[Tawanda]

I should say this. My Brother in law is a transplant surgeon at Beth Israel and a professor at Harvard med. Doctors do this for each other as a professional courtesy.

Katje, WHY should you sat this?! Apparently I missed something...was he the person who convinced you to do this?

[Tawanda]

SCT for your kids??

How I see it. If you don't have your health, you have nothing. My kids want me to be healthy, they don't want to see me go downhill and I don't want them telling stories when they are older about their mother who had MS.

Right now I walk 6 miles a day walking my kids back and forth to school. each way is a mile and I walk that 3 times a day. They need me to do this for many years. They love having me take them out shopping, lunches, mani pedi's etc.. I have friends who like going out. Whats 2 months out of my life??

As for cost it costs nothing except the hotel or apartment for 2 months and food. Time away form home is not an issue, my husband already told his work and they said he can work from Chicago. He said he would quit if he had to so I could have this done.

I do not want to get worse. I am already starting to feel fatigue and other symptoms. They come and go. But I get up at 5am and go to bed at 12. I am non stop, I dont have time to have MS.

I dont see how age is a factor for anyone. My friend is in her 60's and having it done, she had MS over 30 years, still RRMS but has difficulty walking and she said she could live with that but her MS is active again. I just don't understand why anyone would choose to live with this if they didnt have to. Money is no object when if comes to your health. I don't see how a worse qol would happen. Hasn't happened to anyone else, it's all been good.

I tried to read this thread in its entirety this morning, despite how foggy I am, so forgive me if I am totally off base...

If I am doing the math right, you and I are the same age and both of us became mothers later in life. Even without MS, being a mom to young kids, especially when you are older, is hard! You sound amazing to me!

I think we MS Mom's push ourselves even harder when it comes to our kids than we would if we didn't have MS. it's bad enough for MS to bring us down, but God forbid it takes our kids down, too! Kids are smart and don't think they don't pick up on that "guilt" vibe and use it to their advantage...pushing us all that much harder if we let them. I, too, walked my daughter to school, a mile each way, every year until 6th grade. Surely she was embarrassed !

It also sounds like we are both fortunate in having spouses who are there to take up the slack (if there even is any) if MS starts cutting into their lives.

What is hard for me to process is who really is the ideal candidate for stellcem? You seem too healthy to risk it while others with MS have this disease in such a severe form it would seem crazy for them NOT to do it except for the fact that they would be denied at this point. I guess finding that ideal patient somewhere in the middle is easier said than done, though.

In other diseases, such extreme and experimental treatment is ONLY performed on those who have nothing to lose ("Dallas Buyers Club" anyone?). Personally, my biggest fear of this treatment are those massive doses of chemo leading to another horrific disease...cancer!

Agreeing with Marco, this treatment is not yet on-line IMHO. In fact, if I did it, it would be for me. Not my DD. I have always said that I would wait until she goes to college before trying the riskier stuff. Between my husband, myself, friends and family, she has it pretty good. Because of my MS, I no longer work. She gets to come home to a stay at home mom, a clean house, and milk and cookies on the table!

[Special Kay]

I just don't understand why anyone would choose to live with this if they didnt have to. Money is no object when if comes to your health.

You've received quite a lot of support and encouragement for your decision on this board, I don't see why you can't respect others' opinions when they differ from yours. Almost seems like you are still trying to convince yourself.

Also, your statement about money is insensitive to those (many) of us for whom money in that amount is certainly an issue.

[Katje]

Katje, WHY should you sat this?! Apparently I missed something...was he the person who convinced you to do this?

No what I was saying is it would cost nothing and I dont have to go through the trial.

Nobody convinced me, but most people say they would do it. I usually have no symptoms but this morning for example I was walking through the store and my left leg started to feel weak and funny, to the point I thought I might collapse. MS is a serious disease and this symptom will probably never go away, whats next? I need to do something.

[Katje]

You've received quite a lot of support and encouragement for your decision on this board, I don't see why you can't respect others' opinions when they differ from yours. Almost seems like you are still trying to convince yourself.

Also, your statement about money is insensitive to those (many) of us for whom money in that amount is certainly an issue.

Insensitive? Insurance and medicare pay 100% on the trials. Have you even applied? Dr. Burt's trial is much easier to get in than when he started. It's in phase III and then we will all know the results. Could be an easier option for all soon. Would you opt out of SCT then? That was my question. Many people still wouldn't want to go through the treatment, I wanted to know why.

Where have I not respected anyone's opinion?

[Special Kay]

Sorry! I thought someone said earlier in the thread that the cost was something like $250,000.

I misunderstood and/or probably was reading too fast.

[Katje]

Sorry! I thought someone said earlier in the thread that the cost was something like $250,000.

I misunderstood and/or probably was reading too fast.

it does cost $250,000. Insurance covers it, but not the hotel and food. Some people who couldn't get on the trial can pay. I was told they would do it for 150,000. I know of one man that his church collected money so he could get a SCT in Chicago.