SCT questions
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January 9, 2011 at 8:34 pm
I have been thinking a lot about the sct procedure. It seems everyone on here who has done it has been pleased with the results. Has everyone who has had it done recovered from cidp? I realiize everyone has different levels of nerve healing due to many different factors–but it does always kill all the bad antibodies in everyone–right?? Can they come back? Would you recommend a sct before trying chemo or should that be attempted first? How much time did you all give the IVIG before deciding it was time to try something more aggressive? should I consider sct even though the ivig is keeping me from getting worse ? I know I ask a lot of questions–but Im really trying to think this through thoroughly–my neurologist tells me im not very patient and that healing takes a long time. I just really dont want to waste all of my 40’s on this crappy disease!! I dont want to wait until it advances to the point that I cant walk or my arms become affected before finding a treatment that will work. Thanks : ) to all who share their sct experiences—really helps when contemplating it. Lori
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January 10, 2011 at 6:11 pm
Lori,
I don’t have the answers to your questions, but I decided to go for SCT after talking to several individuals (with CIDP) that had the Dr. Burt procedure and each and every one says they would do it all over again because they feel it stopped the progress of the CIDP and also they gained back a lot of their lost functionality.
I’ve been on IVIG for over 2 years and was doing great, then suddenly everything went wrong and I was worse (nerve conduction) than when I was diagnosed. We increased the amount and the frequency of the IVIG – I now go every Friday – but it feels as if the CIDP is still winning. I am also on Imuran since I need to fail 2 protocols to be considered for the SCT, but it’s not helping. The only protocols left for me to try are plasmapheresis and/or chemo. Since chemo is part of the SCT protocol and to harvest the stem cells is similar to what is done through plasmapheresis, I decided why not just “git ‘er done” and get cured! (OK – for those that have trouble with the “c” word, get the CIDP into long, long, long term remission).
Again – everyone I’ve talked to says, unequivocally, they would do it again in a heartbeat – that they now have hope and a future. I want that! My evaluation at Northwestern is next week – I will know by 1/21 if I’m accepted!
I’m tired of being sick, so I guess I am impatient also! So be it!!!! SCT, here I come (fingers crossed!!!)!
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January 10, 2011 at 6:48 pm
To Linda:
I looked into to SCT protocol–it looks very grueling. I was dx 1 year ago w/ CIDP. I’ve been getting IVIG for 1 year; this is my 2nd year–25 gms every 10 days. I became weak with the every 2 week frequency. So you say, one has to fail 2 protocols before being accepted into the SCT program? Does age have anything to do w/ acceptance? I am 57 years. How much does the whole procedure cost? And how much does insurance pay (if you get approval)? So far IVIG has been working for me. But I can’t be on this for the rest of my life? I read on someone’s thread that ” IVIG does not induce remission”. I don’t know if this is true. How does a doctor decide on chemotherapy and what kind of drug to use? I refuse steroids due to side effects. I am very confused about this disease. I am seeing 2 neurologists and one is a specialist in neuromuscular disease. The specialist has never spoken to me about any treatment other than the IVIG. -
January 10, 2011 at 9:57 pm
Sounds like we have a lot of the same ?s on the sct. My neuro hs never suggested anything else other than the ivig either. I did try prednisone (at my own request) it made my cidp worse. I was thinking the same thing–about the sct–if you get chemo with it anyway why bother with the chemo first? Why not just go big and get it done!!! I’d like to think of it as “curing ” the cidp though—if I do not have to continue with IVIG , it kills the bad antibodies, and the nerves heal–then it sounds cured to me. Do most people with cidp know what the antibody is? I would think if they have a measurable antibody and they know the starting % or amount that chemo could be done to the point of that bad antibody being eliminated and not have to knock out the whole immune system? After my next neuro appt in Feb. I think I will call on the sct procedure too….the most they can do is say Im not a candidate for it—but at least i will know. Lori
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January 10, 2011 at 10:09 pm
I hope you get in for the SCT. was it a long process to even be considered? How obvious was it for you when the ivig stopped working? The ivig has kept me from getting worse–I dont really feel ive ever had enough to actually “get better” on it though. i have an upcoming appt and am going over the podcast info with my neuro to see if she will follow those recommendations with me. If I dont see a change with that–then id really like to start the sct process. It does sound like a grueling process but if it will end the cidp then would be worth it. Keep me posted—I will be waiting to hear if you get in—best wishes Lori
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January 11, 2011 at 6:35 pm
Lori and exosurf,
My neuro did not tell me about these SCT clincial trials – I found out from this forum/Alice about the procedure and brought it to him. There is lots of stuff already written on the forum, so I won’t repeat it. You can do a search to find all that’s already been posted.
The current age limit is 65 (I think), so you have time, exosurf. I am 60 and still eligible. Not sure on the cost – if insurance doesn’t pay, I believe it’s up to $150,000. If you do have insurance, depends on what kind as to what will be paid.
The application process is simple and POCs are listed in some of the earlier SCT posts (if you need me to send, IM me and I will be happy to respond). After reviewing my application, I was contacted and an appointment made for my evaluation. This consists of going to Chicago for a few days, meeting the doctors involved and having some tests done. I contacted my insurance and told them I wanted to go to Northwestern for a second opinion and they approved it. That said, still not sure what they will pay (I know they won’t pay my airline ticket or hotel!!). I’m told, for me and my insurance, that Northwestern is “in plan”, so hopefully I won’t suffer sticker shock once I get there!
I am taking this one step at a time. First, got my neuro to really look into this (he even called Dr. Burt at NW) and he agreed it is worth the effort. Next, got my application in and based on the preliminary review, was accepted for the consultation/evaluation. If I’m told next week that I am a viable candidate, then my next step will be to get my insurance involved. I have not figured everything out logistically yet … again, one step at a time! It’s all my weary mind can handle!!!!
As a note – I was getting better on the IVIG as shown with nerve conduction studies – then it went the wrong way late last May and I’m tired of it all – so my application went in before Christmas and, well, we’ll see!
Good luck to you both,
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January 11, 2011 at 10:39 pm
helpful info–thank you. Yes the one day at a time–I hear you, that’s what im doing with this whole thing too, trying not to rush into anything. I have high hopes that the IVIG will work for me–But, Its good to know whats available if it doesn’t. In the event the ivig isnt going to work I want to have this process started or at least do lots of research on it so im not without treatment for a lengthy period of time giving the nerves more time to degenerate. I am excited to see what you find out in a few weeks–the anticipation must be horrible for you!! How were the accommodations in the area? were there reasonably priced hotels nearby? My insurance is anthem blue cross, the ppo plan. They have paid all my costs so far to receive treatment in Mass even though I live in Maine, so far they have been great through this whole cidp journey I’m on. Lori
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August 22, 2011 at 5:54 pm
Why do they make you wait until you are at the last step and down with damaged nerves and unreversible problems. Why not treat us with the SCT in the early stages of the disease so we can go on with a normal life and not suffere any irreversible damage. I would think it would cost the insurance company more to maintain a person on IVIG for years and years instead of biting the bullet and paying for a SCT up front. I look at my bills each three weeks for my IVIG and each one is at least $15,000 for each treatment. That is very expensive and it is going to continue for many years. I am getting good results with IVIG but it is intruding on my life and making me feel like I have some horrible disease that I have to sit in an infusion center plugged to this awful machine. I would endur the SCT and just get it over with if it was an option for the healthy CIDPers.
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August 23, 2011 at 4:11 pm
Chirpy birdy– the SCT is not approved as a standard treatment for CIDP, and that is why it is not being routinely offered. It is still in the clinical trial phase. Secondly, they want to choose pts. who have clearly failed at other therapies, and therefore continue to get worse (or at least no better). The rationale would be something like, the worse off you are, the more dramatic the recovery and therefore the more efficacious the treatment. Also, the study would want to avoid accepting pts. who might go into spontaneous remission as I guess sometimes happens. Those of us who received SCT were clearly never going to improve without radical intervention.
Sharon
SCT #15 -
August 23, 2011 at 5:05 pm
I understand that it is only in trial for now but I hope some day it brings about a treatment that could put an end to all of our suffering with CIDP. Yes, I am not the worst of the worst. I function quite normal except for some pain in my hands and legs. With my IVIg every 21 to 28 days I do get along ok. But it is really hard to fit the IVIg treatments into my life. I feel like CIDP is dictating my schedule. I want to be normal again and not have to sit in an infusion center every 3 weeks for 5 hours. I guess it is only a dream right now and hopefully as more and more people with CIDP get the SCT and react well maybe they will open it up to the less sick and try and stop the disease in its early stage before we have irreversible damage to our hands and feet. I know the SCT is very grueling and there are also many risks with the SCT right now…but I still will dream of a future without CIDP some day. 😀
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August 27, 2011 at 12:23 am
I know I haven’t posted in awhile, but there is a facebook page, “CIDP and Stem Cell Transplant” where most of my posts are going …
That said, I was initially turned away last Jan. Dr. Burt adjusted my treatment and brought me back in May and then I was accepted into the program. I’ve been here in Chicago since July 11th going through the procedure. I received my stem cells back on Aug 23rd (referred to as your “new” birthday).
Has it been hard? At times. Did it take 7 months of planning to pull it off? Yes! Is it worth it? YES and a thousand times, yes!
This has been the most amazing experience of my entire life – almost worth having the CIDP to be here. Nine patients received their stem cells back (from Dr. Burt’s program) this week. I feel so honored to be part of this group. 4 have MS, 3 have CIDP, 1 has Lupus and 1 has Crohn’s. It works on ALL autoimmune conditions.
This is the best thing I’ve ever done for myself.
Good luck to all – you don’t know what will happen until you try!!!!!
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August 27, 2011 at 10:43 am
Congratulations. I am so happy for you. Given the one-time cost of the SCT versus the ongoing cost of treatments such as IVIG and plasmapheresis, I wouldn’t be surprised if at some point in the future health insurers encourage — if not require — patients to undergo SCT, should that procedure be approved as a standard treatment for CIDP and perhaps other auto-immune disorders as well. I hope someday that all of us with CIDP can be cured.
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August 27, 2011 at 1:32 pm
[FONT=”Microsoft Sans Serif”]I am thrilled to watch you go through this amazing treatment!
Life begins anew!
Congrats!
Love,
Alice[/FONT]
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