Cured!!

[QUOTE=alice]so as many of you probably remember, i underwent a stem cell transplant at northwestern university in chicago this past october 2009. while i posted regularly throughout my treatment, i haven’t posted recently and probably won’t do so much, if at all, in the future.

i have been cured! it worked! i am obviously very excited about this new chance to do life absent of cidp… hence the reason why i am not spending time on the forum…

as it turns out, a guy named jim contacted me during my treatment and wanted to be in touch as he too has cidp and was interested in the treatment i was receiving… he lives in the san francisco bay area also.

well, sophie, he and i are all together here in chicago as jim has begun the exact same protocol i went through! we are here with him to support him.

the stem cell transplant involves high dose chemotherapy followed by the reinfusion of your own stem cells. you can read about it here: [url]http://clinicaltrials.gov/ct2/show/NCT00278629?term=Chronic+Inflammatory+Demyelinating+Polyneuropathy+%28CIDP%29&rank=3[/url]

and my website, which includes my blog as well as jims’ blog can be accessed here: [url]http://www.alicedicroce.com[/url]

as a result of being CURED, i am out living my life and am planning to return to work as a police officer later this year~ after my body has had more time to heal… i want to thank all of you who have encouraged and supported me throughout the process~ for further updates on me and also jim, please visit my website…

i recommend this treatment to everyone with cidp, not just those who are “severe cases.” good luck~ alice[/QUOTE]

Alice I can not begin tell you how inspirational your story has been to all of us. I am so pleased and excited by your positive out come. I also am in the beginning stages of seeking out stem cell transplant, as it appears to be th eonly option that can truly give one their life back. I am 36 years old, and have no intention of becoming crippled, or killed by this awful disease. I write this with great respect for all of you who have had the courage to take this step in paving the way for others. So thrilled to hear of your recovery, and that you have your life back. Congratulations!!! I am so happy for you!

Alice,
I have followed your courageous story with great interest and have kept you and Sophie in my prayers. Thank you for you courage and generosity in letting us share in this very intense phase of your life.

Best wishes for the future and please stay in touch.

Alice, WAY TO GO!! Just wanted to say Hi and good luck to you girl, have followed your post and was so glad to hear from you. Take care and do keep
in touch now and then.
Best of Luck to you,
Ms. Judy

Alice, it is great that you are feeling so much better and that life is renewed. This is truly wonderful and I hope that this is permanent for you and so many others that need this. For all of us, though, I would like to say just a little word of caution in using the word “cured”. By definition of the trial and of the results reported in the medical literature, one cannot say that one is cured until one has been free of the disease for five years after the treatment. This is because there can be relapse of symptoms and inflammation. This may not happen to you or others, but this is a Phase I trial because the exact number of people that can/will be cured from CIDP is not yet known–that is why they are doing the trial. Phase I is the first level of trial to assess feasibility. We all fervently hope that all of you getting this treatment will be cured, but relapses have happened in a number of other stem cell transplantation treatments with CIDP as well as cures–where the disease remains in remission for more than five years. Because stem cell transplant is also so serious–using high dose chemotherapy to wipe out the immune system and then giving back cells to rebuild it, there are serious risks with this procedure. Thank God that you did not have any of these, but there can be life-threatening infections when the immune system is so weak. I say none of this to rain on your parade–it is important for to be positive and to live positive and believe that this will work. It is important for the rest of us in thinking about this procedure, though, to realize that stem cell tranplantation has not worked for everyone (this protocol at Northwestern may be better–it is not officially proven yet for lots of people) and that there are risks with it and it is very expensive and may not be covered by insurance as you know.
We all hope and pray that you remain free of CIDP for all the time needed to officially be called “cured” and that you and others courageous enough to do this treatment let the rest of us know ASAP. A cure in any one patient is a reason to celebrate as so many of the treatments are just to maintain disease from getting more severe. How wonderful to have the disease gone and not ever return (or at least not for over 5 years–which feels like a life-time for those that struggle so much with it!).
WithHope

[QUOTE=WithHope]Alice, it is great that you are feeling so much better and that life is renewed. This is truly wonderful and I hope that this is permanent for you and so many others that need this. For all of us, though, I would like to say just a little word of caution in using the word “cured”. By definition of the trial and of the results reported in the medical literature, one cannot say that one is cured until one has been free of the disease for five years after the treatment. This is because there can be relapse of symptoms and inflammation. This may not happen to you or others, but this is a Phase I trial because the exact number of people that can/will be cured from CIDP is not yet known–that is why they are doing the trial. Phase I is the first level of trial to assess feasibility. We all fervently hope that all of you getting this treatment will be cured, but relapses have happened in a number of other stem cell transplantation treatments with CIDP as well as cures–where the disease remains in remission for more than five years. Because stem cell transplant is also so serious–using high dose chemotherapy to wipe out the immune system and then giving back cells to rebuild it, there are serious risks with this procedure. Thank God that you did not have any of these, but there can be life-threatening infections when the immune system is so weak. I say none of this to rain on your parade–it is important for to be positive and to live positive and believe that this will work. It is important for the rest of us in thinking about this procedure, though, to realize that stem cell tranplantation has not worked for everyone (this protocol at Northwestern may be better–it is not officially proven yet for lots of people) and that there are risks with it and it is very expensive and may not be covered by insurance as you know.
We all hope and pray that you remain free of CIDP for all the time needed to officially be called “cured” and that you and others courageous enough to do this treatment let the rest of us know ASAP. A cure in any one patient is a reason to celebrate as so many of the treatments are just to maintain disease from getting more severe. How wonderful to have the disease gone and not ever return (or at least not for over 5 years–which feels like a life-time for those that struggle so much with it!).
WithHope[/QUOTE]

Wow, I am suprised at the amount of critisism, negativity, and harsh responses to Alice using the term “cured.” Not sure why people are so eager to rain on Alice’s parade. In many instances it can be the postive outlook of a patient that gives one the strength to pull through a major medical illness. I have only an enormous amount of respect for Alice, and the path that she has walked down. I am very grateful to each person who has blindly, yet courageously gone before us and created a path resulting in us being able to have choices and more knowledge, on our own path. It is because of these patients, that today we are able to recieve and benefit from the treatments that do work for us. Yes, everyone’s body responds differently, yes, stem cell transplants are risky,costly, and may not be covered by insurance…..these are all facts that we are wll aware of. Why state the obvious? How does this help any of us move forward? Why take joy from some one who has suffered so much? Personally I have found great joy and hope just knowing a patient with CIDP has healed enough (from any form of treatment) to feel that that they can function as they did prior to their on-set of CIDP symptoms…. that would be considered a miracle in my book, and you won’t see me knocking any one for having hope in a “cure.” Fear does awful things to people, an open mind never hurt anyone. Alice, thank you for sharing your story, for looking fear in the face and making the decision to change history and the impact this monsterous disease had on your life. Wishing you peace and continued healing.

[QUOTE=J.Dennison]Wow, I am suprised at the amount of critisism, negativity, and harsh responses to Alice using the term “cured.” Not sure why people are so eager to rain on Alice’s parade. In many instances it can be the postive outlook of a patient that gives one the strength to pull through a major medical illness. I have only an enormous amount of respect for Alice, and the path that she has walked down. I am very grateful to each person who has blindly, yet courageously gone before us and created a path resulting in us being able to have choices and more knowledge, on our own path. It is because of these patients, that today we are able to recieve and benefit from the treatments that do work for us. Yes, everyone’s body responds differently, yes, stem cell transplants are risky,costly, and may not be covered by insurance…..these are all facts that we are wll aware of. Why state the obvious? How does this help any of us move forward? Why take joy from some one who has suffered so much? Personally I have found great joy and hope just knowing a patient with CIDP has healed enough (from any form of treatment) to feel that that they can function as they did prior to their on-set of CIDP symptoms…. that would be considered a miracle in my book, and you won’t see me knocking any one for having hope in a “cure.” Fear does awful things to people, an open mind never hurt anyone. Alice, thank you for sharing your story, for looking fear in the face and making the decision to change history and the impact this monsterous disease had on your life. Wishing you peace and continued healing.[/QUOTE]

You miss the point. Show me the money. I watched my mother die for 10 years. She would be on her death bed and come racing out and she would be fine for a short time and end up in a cycle. Alice may be cured, she certainly thinks she is. Time will be the judge. That my friend is common sence. Right or wrong.

Deleted by author

Hi Sweet Alice, (and Sophie, too),

It is WONDERFUL that you can FINALLY post
under, “SUCCESS STORIES” !!!
It is fantastic that you can use the “C-U-R-E-D” word !!!
I have been following you all through this, and am SO pleased
that it worked. Of course, you are still a little weak after this,
as Dr. Burt said it would take about 6 months to completely recuperate.
But you sound so wonderful, walking and swimming now–FANTASTIC !!!

I am a bit excited myself–this is just in the “talking stage” at the moment,
but there MIGHT be a possibility to have a HSCT done here at USCD !
I am putting it to them this way–I am dieing from the complications
of CIDP anyways, so why not give it a stab?
I went to the top neurologist in our county, (San Diego), to a neuro
who only deals with rare diseases, (you submit your records, and he decides if he wants to see you or not…that type of doctor…), back a few years ago, when I got my final diagnosis. (I was sent to him by my current neuro as a second oppinion–he was actually my current neuro’s teacher back in med school.)
So, I had his email address, and wrote a long letter to him, including the work that Dr. Burt was doing at Northwestern. It was basically a “begging” letter, as I told him I had been told by 4 doctors on the team, that I was dieing from the complcations of CIDP, and had failed at all the other normal protocol of treatments.
I know that this doctor is a very progressive doctor, and that UCSD has a large facility just for stem cell transplants. I thought I would give it a try, since it won’t work out financially with Northwestern.
TO MY SURPRISE, last week he responded !
He said there may be a problem with insurance, but he may be up for it–he had to talk to my current neuro. I figured that I have Healthnet as my main insurance, but I also have Medi-Cal here, which might back it up, since it is for California-only procedures. At least this is worth a try !

So, for the past two weeks, I have had doctor’s appointments for every weekday except for two days, so, I haven’t been on the site for 2 weeks.
And I came back today, starting with the post, “Cured of CIDP? Didn’t think it was possible”, not knowing what was posted prior, ans saw all hell had broken loose.
Please come back to the site to let us know how you’re doing, as well as Jim is doing. I know you are cured, but it will help me to tell my neuros how it;s going for the both of you. There are MANY people on this site that did support you through every step you took. And as you said it for yourself, that to teach newcomers to the disease, that there are other possibilities to trat CIDP. I wish Dr. Burt would hurry up and publish his paper on his research that he just did for the past few years. Once it gets out into the neuro community, the quicker it might become a normal protocl treatment, and then the insurance companies will HAVE to cover the procedure.

I have not been doing well the past few weeks. By being on Cytoxan for almost 3 years, that as well as being immobile, has caused Osteoporosis, and I have fractures. So, my Rheum. sent me to a Pain Dr. on Friday, who told me he will be putting needles with a steroid into my spine in my mid-back, 4 shots, one every 2 weeks, doone in Interventional Radiology, so they get the needle in the right place where the fracture is. It is quite painful right now, but I am taking plenty of hydrocodone.

And my weight is in a nosedive-having lost over 50lbs. I am still having the side-effects from the Cytoxan, and even though I take the Marinol–sometimes it works sometimes not, to get me to eat. The doc said I am close to getting a feeding tube–Frank is even talking about it, since I look so poorly. I am real skinny, my bones protrude, and I am pale white. Ah well, whatever.

So, if this goes through at UCSD, OF COURSE I will have a ton of questions for you, even though I followed you day-by-day as to everything happening to you. I am just afraid that being on the Cytoxan for so long, did some damage to my bone marrow, like my Rheum. told me it might have. I hope that won’t be the case.

Keep in touch, darlin, and give a kiss to that Sophie girl too.
HUGS,
Ken
(KEDASO)

I too am considering stem cell transplant and have gotten encouragement from the nurse coordinator at Northwestern to return the patient intake form (thanks Alicea!). Howevever, I need to have failed one more treatment in order to be considered for the treatment– a course of immunosuppressants like cyclosporine, methotrexate, etc. They give you a whole list. I have already failed 6 months of IVig and have 2 more weeks on prednisone at 60 mgs a day before I taper off. I have had no improvement on either of these treatments. I seem to have the progressive form of CIDP — slow to be sure, but a steady decline nevertheless. (Although I think the rate of decline has increased in the last 6 months or so.)

The good news is that nearly 2 years after the initial presentation of symtoms, I am still working full time. But I wonder whether on the heavy duty immunosuppressants I will be able to continue to do so. These seem to be chemotherapy agents, or at least have similar side effects — nausea, hair loss, etc. I can’t imagine holding down a full time (well more than full time) job and going through all that. So I wonder if I should be preparing my board of directors for a request to go on short term disability. I would love to hear from anyone who has undergone this form of treatment and what your experience has been in terms of being able to function. The eligibility requirements state that I have to be on one of these protocols for at least 3 months.

BTW, my neurologist has never indicated that immunosuppresants are an option, and I see from many posts that neuros don’t want to prescribe these or don’t seem to know about them. That seems strange….in refractory cases like mine, why wouldn’t they?

Finally, I am unclear as to whether stem cell transplant therapy is a clinical trial or a treatment. If the former, then shouldn’t it be free? If the latter, why wouldn’t insurance cover it? There seems to be enough evidence to indicate that it is successful in at least some cases of refractory CIDP.

Thanks for any advice/insights you may have.

Sharon

This is great news. Alice, I haven’t had a chance to read all of your story yet but will definitely do that. You’re here is San Francisco, right? I live in Marin. I just had my first 5 day course of IVIG, now in the wait and see mode. I go to Kaiser in San Rafael, I can’t say I’ve been too happy with them but I can’t get any other sort of coverage now. I still don’t have a definite DX of CIDP so any stem cell considerations are off somewhere in the future if at all. I have normal CSF protein, normal autoimmune markers, just elevated sed rate, CK, fluctuating CRP have not yet had a biopsy so my dx is a bit up in the air. I wish you the absolute best and know you’ll be so happy to get back to work!

Ive stayed away from this forum for a long time. Mainly because it has been too painful to re-visit what this horrible disease did to me. I had a severe case of CIDP that hit like a hurricane on June 28th 2009. Within 4 months I could not walk, and within 6 months I was complete bed bound and beginning to have difficulties breathing. I had the dreaded “straight downhill” type – which the Doctor called “Malignant CIDP”

I had a SCT in March 2010 – around the 8th month point of the disease. I was inspired by Alice who I became close friends with and who, along with Sophie, came to Chicago and stayed with me through the process. By the time I got my stem cells I was in pretty bad shape. Within 2 months I was walking around again.

Iam now 18 months post transplant. Like Alice – I consider myself cured. The only function I do not have is that I can’t quite spread my toes as far as I used to be able to. I do have one major disability – that is a painful neuropathy in my feet that limits me. But it is slowly getting better. No one knows why the pain has happened. Doc Burt says that about 50% have some pain – but in all cases (except mine) it has cleared by the 6month point. I think my case was a little different because my sensory nerves were effected more than my motor nerves – perhaps damaged sensory nerves and cytosine do not mix that well. Never the less – I have my life back. I deal with the pain, and remain positive that it will eventually clear.

I underline every word Alice has said. I would do SCT a thousand times over. CIDP is a wicked horrible disease. For me it was a nightmarish descent into hell. And now it is COMPLETELY GONE – And all my function has returned.

Thank God for Doctor Burt.

Jim D
Happy for you that you have your life back by getting the SCT.
Hope that you will visit the forum often and encourage others.

Shirley

Now that I am coming up on 1 year post-SCT, I thought I would chime in. My SCT one-year anniversary is 9/16, which is coincidentally Mexican independence day. How appropriate, as I am independent of CIDP and now living in Mexico where I will be restarting my career as an English teacher.

I have been completely off CIDP meds since the conclusion of my prednisone taper at the end of October. My walking has improved to the point where I am out of AFO’s and able to wear flats and flip flops (I had given up the latter because of my steppage gait which caused me to slide out of the shoe). I still have a way to go — my left drop foot is not completely corrected, I still have some balance issues and sensory deficits in my lower legs and feet. Mybloodwork is still not normal… red and white cells are still a little off, and my globulins are low, which I believe is the cause of some residual fatigue. However, I am tons better than I was this time last year; more importantly, I believe I can only improve. Without the SCT, I would perhaps be checking out wheelchair models, if not actually sitting in one. I suspect I would by now have sustained organ damage because of the high doses of prednisone which I was forced to take. And I would have little hope of ever living a normal life.

The reason we call this a cure is for the simple reason that the procedure kills off all of the bad immune cells and reintroduces ones own stem cells, which are uncorrupted, into a pristine environment. Yes, I suppose that these new cells could also become corrupted, but the likelihood of that happening is pretty nil, as presumably you would have to be exposed to the same complex of environmental factors which caused the CIDP in the first place.

Sharon

I received my sct this past summer (got my stemmies back on 8/23/11). I can feel the difference in my body – it’s hard to explain, but my body is no longer under attack!!!!! And that is “cured” to me. The pain when I walked was so bad, I ended up in wheelchair if I had to shop or walk more than a very short distance. Now I can walk without pain! And I’m back at work full time. So much of my former life is already restored, it is amazing to me!

I still have the neuropathy, but was told it would take a year for noticable improvement as the myelin sheaths and then the nerves repair (and can continue healing for several years). No problem!!!! At least I’m going in the right direction – the direction of healing – because I am cured of the CIDP (primary) and the Sjogren’s (secondary).

Woo Hoo!!!!