Me too! I’m getting a stem cell transplant!

    • Anonymous
      July 13, 2011 at 11:16 pm

      I decided I can’t let all those that went before me have all the fun, so here I am in Chicago starting my stem cell transplant procedure. This week is all about pre-testing and next is for any follow up tests, then in for “stem cell mobilization” (first blast of chemo) on the 25th of this month.

      There is a blog going on facebook titled “CIDP and Stem Cell Transplant” that I will use to post my experiences. It is really catching on – think I will be #21 – met someone who is here and one week ahead me in schedule and know that another member of the forum is here and on the tail end of the process! It is amazing to see those that went before me and how amazingly well they are doing now.

      When my doctor told me he believed I would only get worse, the decision was easy.

      Hope all is well with everyone and that each and everyone finds the treatment that works for them.

    • Anonymous
      July 22, 2011 at 8:35 am

      Hi, Linda!

      My 0-day or sct day was yesterday! If you feel okay, call me in room #1593
      It will get better for you very soon! I felt pretty bad the last couple of daze, but heres to it getting better faST!

      John C

    • Anonymous
      July 23, 2011 at 9:44 pm


      It was so good talking to you. I can’t wait to meet you!!!! My daughter and I thought we might come for a visit end of this week?

      Thanks for the advice – I will be calling for more!!!!!!!!!!!!!

    • Anonymous
      July 25, 2011 at 10:00 pm

      Good Luck Linda. look forward to reading your updates. considering same for my daughter who has recently relapsed so any advise is helpful.

    • Anonymous
      July 27, 2011 at 3:06 am

      Linda !!!!!

      Way to go girl !!!

      I am so jealous. I sincerely hope that everything goes well for you. I know that it is a challenge and that there are tough times ahead. BUT, the opportunity to leave CIDP behind is such a wonderful wonderful wonderful thing.

      My heart will be there with you all the way through. I hope so much the best for you as you get to beat this thing.

      .Good luck. I am with you all the way.

      Dick S

    • July 27, 2011 at 6:51 pm

      I hope everything is going well Linda 🙂 my thoughts are with you. Lori

    • Anonymous
      July 27, 2011 at 10:48 pm

      ALL succeeds! That you will be free from this all in the future.
      Thank you brave persons for being the leaders for a new treatment and hope for all.
      From my heart- thank you!

    • Anonymous
      July 30, 2011 at 12:08 pm

      I so appreciate the well wishes. I am so excited and happy to have the hope this treatment brings.

      And I am impressed with John C’s progress. He is already out of the hospital but just got his stem cells on 7/21. Hope I get out that fast! While it is lovely in Chicago in the summer, I’m ready to be on the other side of this and headed to Boulder for a recovery time with my sister before heading home and back to work …

      And there is another person here (Bill) who is 3 days ahead of me! And another coming on Sunday and another coming on Tuesday – I think Alice started a tidal wave!!! Spoke to another young man through the facebook page and, since I’ve been here and we’ve talked, he’s sent all his information off and is waiting on an appointment. Sweet.

      I hope this becomes a standard protocol for CIDP after all else fails … and I hope each and everyone with this finds the treatment that works for them and kicks it into permanent remission!!!!!!

      Thank you,

    • Anonymous
      August 1, 2011 at 7:31 pm

      You will do great~! Its a long process, even though I managed to get out a few days before expected. I honestly do not think another 2 or 3 days would have mattered much at all in the big picture. I dont think it would have mattered much to me personally either. Once I wrapped my head around the fact that NW was home for 3 weeks or so I was good with it.

      Do not hesitate to hit your call button if you need anything~! Lots of times they have stuff prescribed you didnt even know about, but you have to ask for it.

      Stay strong! Its going to all be worth it.

    • Anonymous
      August 2, 2011 at 6:27 pm

      You have been through so much and it is your time. Go on ahead for those of us that have children with this terrible disease so that we may have hope!

    • Anonymous
      August 3, 2011 at 10:42 am

      Selahsmom – this is also my hope. This is a tough disease and I cannot imagine having my child go through it – I’m so sorry. But I truly hope Dr. Burt’s research gets accepted sooner than later. On my “mobilization” day, 3 others were also there – 2 with MS, 1 with CIDP/Sjogren’s (me) and 1 with Lupus. The word is getting out and a lot of people with a wide range of autoimune conditions are here in Chicago at various stages of this process. It is so exciting! CIDP is in clinical trial phase I/II, so everyone here for this gets the same protocol. Another woman just got here that has CIDP and RA, John C just left, Tom got here yesterday for evaluation, Kevin’s coming next month … and the list goes on!!!

      However MS is in clinical trial phase III and so there is “randomized” trials. One of the ladies here went through all the chemo last year, but did not get back her stem cells … she is now worse, they’ve moved her out of the “control group” and she is going through it all again. This time she will get her stem cells back.

      This is one of the reasons I wanted to go through sooner than later as, at some point, CIDP will have to move to phase III/randomized trials before it can get to the public. I feel so very fortunate to be here in Chicago and a part of all this …

    • Anonymous
      August 3, 2011 at 8:48 pm

      I agree 100% with you. When they move onto blind studies etc. the best thing is the govt. will have to pay either way. How are you feeling so far?

      All the best from my family and I! Oh yeah, do you find it odd every nurse is beautiful there and like a size 3 or so? The females I mean lol.

    • August 3, 2011 at 9:16 pm

      sounds like things are going well for you there Linda : ) my thoughts are with you—glad you are doing good. Lori

    • Anonymous
      August 13, 2011 at 7:07 pm

      I’m here in Chicago – have gone through the first round of chemo, did neupogin injections, had my stem cells harvested (got > 8m, need 2), lost my hair and am ready to go into the hospital on Tues for 6 days of chemo, and then get my stem cells back on Aug 23rd.

      My sister tells me she’s never met anyone so happy to get chemo! I tell her that should be a clear indication of exactly how bad this is – but this stem cell program is my only hope for long term remission. So, yeah, I’m EXCITED!!! Woo Hoo!

      My daughter is with me right now and we had a head buzzing ceremony when my hair started falling out … she shaved half off, then did a long mohawk, then a short mohawk, the Tibitian monk look, then bald. She has a fan club here where everyone wants her to do their head shaving ceremony because she made it such fun.

      Bill L and I go into the hospital on Tuesday – we both have CIDP. Then there are three others – Melanie, Patricia and Al, that go in on Wed – 2 have MS and 1 has Lupus. There is another lady with us, Jennifer, that is a few weeks behind in the process. We are all staying at the Seneca, so we’ve formed a close knit group and try to meet on the roof top to see the sun go down and share our experiences. We call oursevles the “roof toppers”.

      There is such an optimistic attitude of all that are here for this – each and everyone of us feels so fortunate to be here and to have hope. It’s hard to explain, but this is really a good time in Chicago. We’re making the best of it and being tourists whenerver possible and laughing a lot. And Chicago in the summer beats Houston in the summer any day!!!!

      It took me almost 2 years to be able to do this, but hey, those years go by anyway – might as well use than for planning! So here I am!!!!!!!

      Optimisn is almost running amuck … it feels good. Thank you Alice!!!!!!!!!!!!

      With hope that all find what works for them,

    • August 13, 2011 at 10:37 pm

      glad to hear from you Linda 🙂 I was wondering how you were doing—sounds like things are going good—best wishes Lori

    • Anonymous
      August 14, 2011 at 11:25 am

      Linda, I am very curious to know whether the sct you are getting is supposed to cure your sjorgren’s as well. And what about the woman with CIDP and RA? Inasmuch as Sjorgren’s and RA and also autoimmune diseases, I should think you who have 2 or more will kill two or more birds with one stone. But of course, the drugs used for other than CIDP might be different enough so that they won’t work for the non-CIDP illnesses…?


    • Anonymous
      August 14, 2011 at 6:52 pm


      Yes that is another reason the stem cell transplant program is so exciting – it works on all autoimmune conditions. I was told there are slight variations in the protocol, but for the most part, everything is the same!

    • Anonymous
      August 15, 2011 at 12:15 am

      Linda, Glad to hear you are in the program. Hope and pray everything goes well with you. It sounds like you have a very upbeat attitude about it and that will help you get through this. I was wondering how do you get picked to be in the program? Does your doctor have to recommend you and does insurance cover it? How long does it take to get into the program? God Bless. Clare in Michigan

    • Anonymous
      August 15, 2011 at 9:12 am

      Wow, Linda. So you ARE killing two nasty birds with one stone. That’s fantastic. I don’t know much about Sjorgren’s, except it is a disease of the tear duct, I think. We are so lucky to have been born at a time when this treatment is just becoming available. And lucky that we got into the study before it became randomized, thus possibly chosen for the control group.


    • Anonymous
      August 15, 2011 at 12:29 pm

      Sharon – Yes, I am so happy this will knock out both the Sjogren’s and the CIDP. Sjogren’s is where the immune system attacks the body’s ability to produce lubrication. For most, it means chronic fatigue and dry eyes and mouth. For me, it is mostly in my joints causing osterarthritis. I can’t get any of my rings on anymore – my knuckles are huge! And while it will stop the progression, I will have some permanent damage from that … but as you know, my nerves have a great chance of repair!!! So all is good for me. Jennifer, who has the CIDP and RA, went in today for her mobilization … she is doing well also.

      Clare – I requested the application and information from Paula, Dr. Burt’s nurse. I didn’t need my doctor’s approval, but he thinks this is a great program and so he contacted Dr. Burt directly and helped me. After my application/medical records were received and reviewed, I was invited up for an evaluation. It took two different trips for evaluation before I was accepted into the program. The neurologist associated with the sct program felt I had not quite met all the FDA requirements for the clinical trials so I had to go back home and try another approach. But when that also failed, I was accepted. I have a federal bc/bs plan and Northwestern took care of coordinating all the insurance issues for me. I am getting all the medical paid but not my living expenses while here in Chicago. I was offered a free room, but it is small and not nearly as nice as the Seneca, so I declined and am paying $89/night to stay in a 1 bedroom small apt. It has 2 queen beds in the bedroom, a living/dining room, 1.5 baths and a small kitchen. But, again, there is free housing available. I came for my first evaluation this past Jan, then back again in May – got accepted, then came in July to start the outpatient stuff. Tomorrow I go into the hospital for 17 – 21 days. Hope this helps you!

    • Anonymous
      August 16, 2011 at 10:20 am

      Clare — My bc/bs did pay a portion of travel and living expenses. They did not advertise that (as you can imagine); I had to do a little digging. Of course, all plans are different, but you (and Linda) might just check with the transplant/bariatric surgery people at bc/bs. It’s a separate division with its own case workers, etc.

      I had my plane fare reimbursed (up to one year post sct); $50/night for my hotel and grounds transportation to/from the hotel. No in-town travel reimbursement nor food. But every little bit helps!!


    • Anonymous
      August 17, 2011 at 12:25 pm

      [QUOTE=Anastasia52]Clare — My bc/bs did pay a portion of travel and living expenses. They did not advertise that (as you can imagine); I had to do a little digging. Of course, all plans are different, but you (and Linda) might just check with the transplant/bariatric surgery people at bc/bs. It’s a separate division with its own case workers, etc.

      I had my plane fare reimbursed (up to one year post sct); $50/night for my hotel and grounds transportation to/from the hotel. No in-town travel reimbursement nor food. But every little bit helps!!


      In another thread, or two, commenting on Medicare, I commented that it “…is a big deal…” to determine who is your primary Insurance in those case where an insured has both Medicare and Private Insurance (not a supplemental plan).

      Here is why. When Medicare is Primary, BCBS will not reimburse Transplant travel and lodging costs. Why? If BCBS were your Primary, then they require you to have the “transplant” done at a BCBS Center of Excellence. Thus, they consider the travel and lodging (over 50 miles from home) to be at their request.

      This is not the case when Medicare is Primary.

      At any rate, Sharon’s advice is good. Ditto for her caution that every BCBS Plan is different.

      Find out what coverage you are eligible for.