Help-Considering Stem Cell Transplant

    • Anonymous
      January 11, 2013 at 1:36 am

      I was diagnosed with CIDP in 2007 just before turning 14. I have been receiving IViGs every 4 weeks at 20g for about 5 years now. I am 19 and after seeing how difficult it is to keep health insurance I have become increasingly worried about my future.

      I have been considering trying SCT and I have seen a few here that have had a lot of success and I was wondering if it is necessary for CIDP patients to get chemo or radiation prior to the procedure? I would love to hear a little more from someone’s personal experience and what I could expect.

      I know my mother would also appreciate if I could find someone my age, 19 early 20s, or someone who was diagnosed in their teens, to help relate with what we may be dealing with in the near future, although I understand CIDP cases tend to be different amongst different people.

      Thanks, Erika

    • GH
      January 11, 2013 at 3:07 pm

      That treatment is in clinical trials, so it is necessary to qualify for it. I haven’t had it, but here is a link to the information about the program.

    • January 11, 2013 at 11:15 pm

      I have applied for the sct and am currently waiting to see if I’ve been accepted. It said on the clinical trial page that you have to have failed two other treatments.  I don’t know how that works if you are currently doing a treatment that is working???   You can always just apply and see.

      as for others your age….. there are some younger people on here around your age—hopefully they will respond.  It has not been a very active site lately.

      There are also some cidp pages on face book, they might have some people your age.  There is a face book page cidp-sct where there is a lot of sct discussion you may find interesting.

      Best of luck to you, sorry you had to end up with this crappy disease at such a young age.  I get  upset at getting it in my 40’s, can’t imagine being younger and it taking more time from my life.   On the good note, you are very young and your nerves have greater capacity to heal.        Lori

    • Anonymous
      January 12, 2013 at 1:57 am

      Chemo is a must this is what helps start the mobilization phase of the “havest” it is 1 overnight in the hospital & about 2 weeks overall for the harvest process. The Chemo used is Cytoxin. The heavy (hi dose) chemo comes in during the final phase  that requires about 3 weeks inpatient. there are 6 days of chemo – cytoxin & rabbit atg.  then your stem cells added back to restart your immune system that was just wiped out.

      Look into & apply (that part’s non-commital & free) the rest is detail too long to write here. I did meet a 23 yr female who underwent the same protocal for MS 2 yrs ago & she looked perfectly normal to me. she told me she would do it aginn despite the gruelling process. However, she had been wheelchair bound & nearly blind in one eye. she said it gave her an (almost) normal life back.

      for me _55yr male. I have only dealt with the disease for about 18 months but it knocks me down hard despite weekly IVIG infusions. I got into the program as quickly as I could despite my local neurologist believing it was too risky.

      Depends where you are, as a parent of a 20 & 23 yr old. it would be a heart wrenching decision.

      I’m traveling down that path now & in Chicago where I will have my stem cells harvested in 3 days (monday)

      Godspeed to you that thru some miracle this disease goes into remission for you.

    • Anonymous
      January 12, 2013 at 2:06 am

      PS – as for failed treatments. I had used steroid for a very short while then about 7 mos of IVIG by the time of my evaluation. Dr. Allen – the neurologist offered me some other treatment options but did confirm my CIDP. However, your illness must be “refactory” (non or inadequete response to the treatment)

      Too much is still unknown about this rare disease & it can go into remission or possibly be induced into remission. ongoing treatments generally manage the symtoms. The idea behind the SCT process is that it will fight the root cause.

    • Anonymous
      January 12, 2013 at 2:18 am

      one more – here is a closed group on FB. many of Dr. Burt’spatients for a variety of autoimmune disorders here. some near your age. ask to join. usually takes a day.

    • Anonymous
      January 18, 2013 at 12:00 am

      harvest done – the process is vigourous.  final phase starts in 2 weeks

    • January 18, 2013 at 1:39 pm

      good luck Pat 🙂  So in two weeks will you start the chemo—and the 3 weeks inpatient?   I hope you continue to post after the sct. So many people get it done, post once or twice after then never again.     Hopefully this is because they are doing better and getting on with their life.

    • Anonymous
      January 19, 2013 at 1:43 am

      yes I start the final segment of the process on Jan 31st. with a stem cell re-infusion slotted for Feb. 6. I finishe the harvest tuesday this week, flew home wed. & have returned to work for the next 10 days. Below is a recap I posted on another site of my Mobilization & Harvest segment:
      Finished the harvest . Didn’t get quite enough day 1 & ended up with a bit over 3 million. All challenges & Bumps in the road the past 12 days have settled down very well & strength has returned. To recap my experience during this segment for the benefit of others it went like this:

      Arrived Thursday in pretty decent physical shape but could feel myself declining.

      Admitted Friday for Mobilization. Other than a tough time getting a “hit” with the IV line things were good. Walked 3-5 laps around the floor every 3 or 4 hours. My wife spent the night in the room with me

      Discharged Saturday- Monday- not feeling bad just some nausea (not sick)

      Tuesday – CIDP flared into full force rendering me almost immobil then add some nausea on top . SOS to Paula & Amy. Multiple IVIG’s arranged ( recovered well)

      Wed – Neutropen started – No problems with injections, mild ( tylenol)bonepain Friday, hard (Norco) bonepain Saturday mild bone paint on last day.

      Saturday – Tounge had a whitish coating. SOS Amy again mouth rinse prescribed for “Thrush”. Mostly gone by Monday

      Monday – VasCath placed – less intrusive than I had anticipated. Harvest started only got 1.7 million & need 2.0 as a minimum. Get to sleep the the thing in my neck tonight. not painfull just uncomfortable.

      Tuesday _ I am plenty strong again and walked without aid all thru the hospital but we took a cab or shuttle to & from. The weather is clear but cold. Long day with Blood drawn for analysis @ 7:30 am, Harvest started around 9:30, followed by another round of IVIG to help maintain strength. VasCath Pulled.Done at 4:00pm.

      Wed – We are flying back home for about 12 days before returning for the final phase

      Thurs – Back to work for a week or so before I return. Ironic, from as bad as things were a week ago to be back functional again today.

      Overall, this segment was probably not near as bad as I may have feared. If my illness had not flared up. I likely could have enjoyed a bit of Chicago while we were here. The care, concern, and attentiveness, was incredible. It’s a scary journey, but lots of outstanding support along the way.

    • January 21, 2013 at 12:33 am

      How long did it take for Northwestern to get back to you after you submitted your information Pat?  I got all of mine out on Dec 26th, am waiting to see if Im accepted.   Hoping to hear soon—i am doctorless at the moment and have not recieved any treatment for 7 months.

      I can feel my self getting weaker, the numbness that was only in my feet has crept up close to my knees, my thighs and around my knees are feeling shaky and weak.  The ivig did keep me from getting worse, but because i didnt get an increase in strength from it, the dr i had doesnt  want to continue it.  Im getting in with a new dr soon that hopefully has more knowledge about cidp.

      hoping to get in for the sct, and hoping my insurance company doesnt ruin it for me if i do get accepted.

    • Anonymous
      January 21, 2013 at 11:11 pm

      it only took a couple weeks but everybody was in town.  I believe that Dr. Burt was traveling alot at the end of Dec & beginning of Jan. Thus perhaps reason for some delay . Due to that even my harvest schedule had to me manipulated somewhat.  I was on weekly treatments & still declining & have had 2 manifestations since my initial eval. If you do get there for an eval. you will likely see Dr. Allen a neurologist who because of this study & all of the folks they have evaluated is quite expert in CIDP and will likely give you addional opinion on treatment options. He collaborates with Dr. Burt primarily for the confirmation of this very difficult to properly diagnose disorder.

    • January 22, 2013 at 3:52 am

      that is good to know Pat–thank you—so even if I dont get accepted, at least going out there for three days wouldnt be a waste if Dr Allen was able to recommend a treatment plan.

      I’m really hoping to get accepted though.  My symptoms are not quite as “typical” as some with cidp, but my main symptoms are weakness, i have a slightly elevated LP, nerve biopsy shows inflammatory process, and an identified abnormal anti-body—all of these point toward immune disorder.  So my thoughts are whatever the
      “disorder” a whole new immune system from a sct should fix it???

      I figured it may take a little while with all the holidays, etc since i have sent in my info.

      I did have a message from Paula on thurs that Dr Burt had reviewed my info and had a few questions—–must mean he’s considering me at least, if he has ?s 🙂   I didn’t get the message until after they closed thurs—time difference.  then of course the weekend, and Paula’s off on monday–so it’s been killing me waiting until tomorrow–tues when hopefully i can talk to Paula and see what the questions were.

      I was surprised that you are feeling well enough to go back to work for a while during the process.  that is going to be my biggest hurdle, trying to maintain my small business while getting it done.  It is the main reason i have waited this long to apply, i kept hoping i could get treatment without having to be so far away.  In the end all i ended up doing was wasting 3 years on very conservative treatment that has done nothing for me.

      I see in your post that you got ivig while at northwestern to keep you from getting worse—that is good that they care enough to keep you from getting worse.

      I started getting worse in Oct—4 months after rituxin. Called and asked my dr if i should get a second rituxin treatment or at least some ivig, since we knew the ivig kept me stabile.  She told me that I should continue to let myself get weaker and decline so that when i go see the new Dr, he will see me in that condition!!!! is this not the most stupid thing anyone with cidp and knows anythng about it has ever heard???  keep in mind. i wont be seeing the new Dr until later this month, so this was 3 months ago. What is the point of getting worse when there is treatment to prevent it, or the point of declining, now theres that much more work my body will have to do to heal these damaged nerves when i do find a treatment that works.

      did Paula/northwestern take care of applying to your ins co for  the sct or did you have to do that yourself?


    • Anonymous
      January 23, 2013 at 1:53 am

      yes they did all of the insurance and appeals although i did a bit of background work on the appeals. i was turned down, failed 2 appeals & got it approved on the 3rd appeal with Dr Burt talking directly to the outside medical reviewer. I have had a roller coaster of a ride even with weekly ivig. usually after a loading dose good & mobil for about 3 months then crash at the end of the 4th & need reloaded. I was able to break my process down to what will be 4 different trips to Chicago – Eval – sept, testing Dec, Harvest early Jan, Last phase end of Jan-Mid Feb. for the most part i have been able to work all but about 10 days this past year but my job is not physically demanding. by breaking it down this way my longest stint out will be the final one vs the 8-10 weeks in chicago if i tried to do it in one trip like many do.


    • January 23, 2013 at 3:21 am

      that sounds like a pretty good schedule—-do you live close to chicago, or is it a long trip for you?

      My job is not physically demanding either, its a small business that i own and operate.  It involves care for people, so i cant just shut it down to go away, plus without my job, i wouldnt have my insurance.    Such a mess…..getting this disease can really throw a wrench in life.

      But—i will make it work, if it will stop this cidp then it will be worth it.  I have anthem blue cross for insurance–a ppo, not sure how they will be about this whole thing.

      yes i have been on a roller coaster ride with the ivig too, it has never really helped me regain any strength–only slowed down the progression.   called back today hoping to reach Paula to see what Dr Burts questions were, but only got the answering machine—-will try again tomorrow.  must be a busy place.

    • January 23, 2013 at 5:54 pm

      I am sorry for your diagnosis as such a young age- one thing you do not mention is how you are doing on monthly ivig infusion-  If you are doing well then you are on the safest although definitely not cheapest or most convenient therapy-  also as a young woman with your whole life ahead including possible family in your future, you need to consider effect of stem cell on fertility – the chemo may risk infertility – also sometimes cidp goes in to remission on its own – It really all stems on the risk / benefit ratio-  I was dx at 41 and my specialist at the Mayo clinic has informed me that I am doing too well to undertake stem cell despite my reliance on ivig every 10 days and Imuran daily.  I am caught between not being severely disabled ( I am not complaining about that trust me) but not normal either –  Hang in there and I wish you well.

    • Anonymous
      January 26, 2013 at 8:51 pm

      I went through the procedure 3 years ago.  I had a horrible progressive case of CIDP – where I went from running a marathon to complete wheel chair bound in 4 months.   I got into the Northwestern program – from initial consult to start of the program was 3 weeks – but that is because I put the money upfront so I didn’t have to wait for the insurance approval (which they eventually did pay for – thanks to Burts direct involvement).   I was the 12th case of CIDP that they did.   Mine was exceptionally aggressive – at the end – NW was giving me IV-IG once a week to keep me strong enough for the SCT.   My breathing was beginning to be impacted – had difficulty swallowing – in short a wreck.

      After SCT – I rapidly improved.   Over the next 2-3 months I regained nearly all of my function.  Today I live almost a completely normal life.  The only thing that holds me back is pain in my feet – I think it is a lingering side effect of the chemo that is exasperated in those who have sensory predominant CIDP like I did.   I can walk a couple of miles – but then need to put my feet up for a while.  I also fatigue a little bit more than I used to.  Working out is doable – but it puts pressure on my feet and is thus uncomfortable.  But all of these are work around issues.  3 years ago I could not stand. Near complete immobility.   The SCT was nothing short of a miracle for me – one that I am forever thankful for.   Doc Burt saved my life.

    • Anonymous
      January 29, 2013 at 8:04 pm

      Thanks so much everyone for helping me, quite honestly I respond fairly well to my IVIGs and I consider myself very lucky for having a treatment that can give me somewhat of a “normal” life. I am at an age where I have to start thinking about how my future job/career will tie in with insurance. Keeping insurance while going to a hospital every month for IVIG is pretty tricky, and that’s my main worry. I just figured if I could eliminate the problem I wouldn’t have to worry but it’s probably best for me to continue down my path of IVIG and maybe look into Imuran, a lot of people seem to have success and it wouldn’t be the first time I’ve brought up immuno suppressants to my doctor, might as well try!

      To those of you who shared your sct experience with me, thank you and I wish the best for all of you and I will continue to follow your stories 🙂