Stem Cell Transplant Bound!!

Hi, Alice:

I followed your link to Jon’s facebook page. However, there was no means of posting a comment. I am a facebook neophyte, so maybe that’s part of the problem. in any event, I would very much like to communicate with him, just to be another resource for SCT. Is there a way to email him?

thanks, and happy holidays.

Sharon

Thanks, Alice. I went back to the site and figured it out on my own! Jon and I are officially in communication.

Sharon

Glad you guys are having a great time, you make everything sound like fun, LOL! Freezing? You should have come to MN like I suggested, as it is supposed to be -40 here tonight, we are under an extreme Cold Weather Advisory tonight, ever heard of that one? With the wind chill factor it will bemore like -60. Our high for tomorrow is 0!

Alice, that’s great that you are meeting some of the “newbies.” I am sure that it is helpful, at least from a psycho/emotional perspective, for them to have someone there to answer the multitude of questions they must have about what to expect. I am having my f/u with Team Burt March 9-11 and hope to see Jon then…also Linda M from our forum if she is still there. I didn’t know that she had been accepted. Good for her! I’m glad that they have each other for company.

I almost hate to admit it but I am enjoying balmy weather in the Yucatan. I lucked out and avoided all the nasty snow and ice storms that have recently hit the east coast.

Sharon

Will Medicare pay for this treatment? What is a ballpark figure for the treatment?

Well … I went to Northwestern for an evaluation and was told no at this time. I understand as I was a little concerned that I had not been on the Immuran long enough to say I failed two protocols (requirement for the program). Anyway, my neurologist still thinks I will make a good candidate and he is working with the doctors at Northwestern to take their suggestions and see what happens. I’ll be slowly going off the IVIG as the Immuran is increased. Everyone pretty much agrees I would be a good candidate – just need to try another thing first.

I did get to meet Jon and Robert (and Alice met us there) and so my personal connection to CIDP and the stem cell clinical trials just gets stronger – I truly believe I will get in this year and that it will work. I’ve seen, up close and personal, its success and I want the same!

So it’s all good and I can wait my time.

Linda

[QUOTE=Linda M]Well … I went to Northwestern for an evaluation and was told no at this time. I understand as I was a little concerned that I had not been on the Immuran long enough to say I failed two protocols (requirement for the program). Anyway, my neurologist still thinks I will make a good candidate and he is working with the doctors at Northwestern to take their suggestions and see what happens. I’ll be slowly going off the IVIG as the Immuran is increased. Everyone pretty much agrees I would be a good candidate – just need to try another thing first.

I did get to meet Jon and Robert (and Alice met us there) and so my personal connection to CIDP and the stem cell clinical trials just gets stronger – I truly believe I will get in this year and that it will work. I’ve seen, up close and personal, its success and I want the same!

So it’s all good and I can wait my time.

Linda[/QUOTE]

Linda were you ever given any pricing information?

grawplyr – no one talked cost with me as it is all different depending on what insurance you have and if the insurance will pay for the sct. I just received my insurance statements and for the three evaluation appointments (including blood work) I had in Chicago, my co-pay was $60 total.

Once accepted into the trials, then they contact your insurance company to see if this trial will be covered. Jon is from New Zealand and so has no coverage in this country – I think his cost is around $150k. When Alice went through this, her insurance wouldn’t pay, so she had to come up with the cash. I admire her greatly (and she is a now a close personal friend – bff!!!) and I always tell her she is trail blazer since almost everyone after her has received some insurance help. Her courage, determination and recovery shows how much this works and helps all of us that come after her with our insurance as she is another success we can point to …. so I always thank her!

Bottom line – you just have to go through the process to see what will happen and, if accepted, how much your insurance will cover.

Good luck!

I am very thankful for all the people who have attempted and had the sct : ) The success stories coming from all of you will hopefully make it easier for the rest of us if and when we come to that decision. that is after we’ve jumped through the hoops and tried the other treatment plans first—ugg!! Lori

Linda–can I ask you: how long do you have to be on IVIG and/or Imuran to consider them a “failed protocol”? I’m glad you were able to be evaluated by Northwestern. Why are you being weaned off IVIG? and how is the decision made by a doctor as to which immunosuppressant to prescribe? There are many immunosuppressants out there.

IVIG is the only treatment my neuro MD has me on and said I will be on this for 2-3 years. After that, I don’t know. My neuro also referred me to a “specialized neuromuscular” MD & this doctor isn’t doing anything different than my 1st MD in regards to treatments. Although I am getting better with IVIG, but still I don’t feel completely normal (fatigue, endurance, not completely strong as I was before).
What kind of side effects did you experience from Imuran?
Sorry for all these questions. I’m one year into CIDP and there are so many unknown aspects of this condition.
Thanks.

Dear Alice,

I am a new member, but have had CIDP for 5 years and most recently diagnosed with RA six months ago. I went to the link and read all of the info. Who does my neuro contact to start the process? How do you qualify? I am going to go to Jon’s Facebook page when I have time this weekend. I am really excited and have always been very proactive in my treatment, so any leg work I can start, I am on it!

Thanks so much for your positive attitude! Can’t sympathize with the cold as it was 20 below today and my second graders had to have indoor recess again today because it was too cold to go out. UGH! I love them dearly…they get me out of bed each morning no matter how bad I hurt. I know they are depending on me to be these and I am not one to disappoint them.

That is why this is so important to me. My family, my grandbabies, my students. I want to rid my body of these miserable diseases so I can motor around pain free…..what a novel idea…pain free…what is that!!?

Good luck to you all in Chicago. May I be able to follow in your path soon!

Dearest Alice,

Thank you so much for your quick and vastly informative response! I will go to your website after this post and continue my education. Being a teacher this comes naturally. I am home today with a horrid cold so I will sit here on the couch with my ipad and search away.

I will keep my neuro informed and he has always been supportive of my decisions in what I want my treatment plan to look like. We’ll see what he has say about my latest plan!

I will be in touch. My husband is so supportive and excited…it’s contagious…what you have started for me. You have given me hope. Even if I am turned away, I will know that I tried every avenue offered to me to heal my body. Thank you. You are a special spirit. I will keep in touch.

exosurf – For me, the doctors agree that I am failing IVIG since we keep having to increase the amount and frequency for me to reasonably be able to function. My neurologist is behind me in my desire to receive this protocol and so he is in contact with the doctors in the program. They want me to go off the IVIG so that the Immuran can be evaluated on its own. As to which immunosuppressant he chose? Never thought to ask! And for me, that is almost a first (LoL). As for how I feel on the Immuran, I haven’t noticed much difference – but I do think I have a head cold coming on – which is sort of new. Since being on the IVIG, I haven’t had a cold/flu/anything! I haven’t noticed any improvements in my condition … which does not surprise me.

Alice’s website really is the best place to learn more about sct. She’s helped mentor many different people through this program and continues to bring hope and encouragement (and posts!).

I wish you the best in your journey with this,

I spent the day reading EVERYTHING on Alice’s website. To say that I was a bit overwhelmed would be an understatement. To say that I am in amazement of what she and everyone have and are going through, inspire me.

I have contacted the nurse coordinator in Chicago and am anxiously awaiting her reply. I am a little nervous because I have CIDP AND RA, not just CIDP. But my husband said that that should make me extra special. He’s a good man. (Brought me flowers again this week to my classroom for no reason…just because he loves me AND likes to disrupt my students! lol)

So, that is where I am at. I guess we will see how it goes. I was so excited last night I had a hard time sleeping. Hope is a fun thing.

Thank you all..Thank you Alice for putting together a fantastic website!
Jennifer

Just received a call from the nurse coordinator in Chicago! I have to get all of my medical records, etc. together all that good stuff, but it looks like I will make my first trip to Chicago around the end of March. I will see the dr.s for CODP, but she is also hooking me up with the RA dr. She is pretty sure they will take care of both.

I am keeping my fingers crossed!

Taking care of both CIDP and RA is the best news I’ve heard in a long time!
I’m hoping against hope for you and your husband is right, you really are special. Please keep us posted. We’re just as excited as you are.

That is wonderful news! And another one of us finds hope!!!!!! You go girl!!!