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

John,

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!!!!!!!!!!!!!

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,

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 …

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,

Sharon,

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!

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!