Cured of Cidp? Didn’t think it was possible..

[I]Good question.

For me, a cure would mean there are [U]no[/U] residual effects.

Remission, even long term, wouldn’t meet that criteria.

So yes, a good question.[/I]

I don’t think that i’ve yet to hear of someone who ”truely” has progressive CIDP ever to have been ”cured”. A couple of years back when i was just a lurker (non member) to these forums a registered member was bragging about taking mannetech products and being cured but he disappeared when when folks questioned him about the validity of his claims.

There have been some who stopped having symptoms. Some improved followed certain treatments; some just happened. As is often stated, the disorder is very individual. But there are a few CIDPers who stop getting worse and who never get worse — for whom the CIDP is said to have ‘burned out’.

The questions are: did he actually have CIDP? Did something actually stop the progression or did it just happen; or has he just gotten so accustomed to it that he can’t tell? How can we be sure that it’s cured — by definition that means it will never come back (if it comes back, it means that it’s not cured: if cancer is cured, it doesn’t come back). The only CIDPers who know for sure are those who have died never having relapsed again.

These questions need answers, but so do a lot of other questions.

As far as I’m concerned, I’m looking for the best I can maintain.

In need of IVIg and feeling cynical tonight 😎

Deb
London

[QUOTE=eightplusfive]There have been some who stopped having symptoms. Some improved followed certain treatments; some just happened. As is often stated, the disorder is very individual. But there are a few CIDPers who stop getting worse and who never get worse — for whom the CIDP is said to have ‘burned out’.DebLondon[/QUOTE]

[I]But that’s just it … one can stop having symptoms, but that definitely does not mean one is cured. To be cured is to have all residuals gone .. vanished … poof!

My cancer was gone … vanished … poof! … when I had my breasts cut off. It wasn’t gone when the two previous biopsies had been accomplished.

Likewise, once there are CIDP effects, it is not gone when symptoms have vanished, only when all effects have vanished … and stayed gone.[/I]

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I remember reading somewhere that there was a 5% complete remission rate. Meaning that 5% leave CIDP with no remaining symptoms or problems.

We here at this forum never hear about these cases. The ones that come here usually have a deeper affliction, or if their CIDP is not so bad, they come here, learn some about CIDP, stick around a little bit and then leave. Those of us who are here the longest are usually the one’s who have the more challenging cases and have had to learn more about it, out of necessity. And are then willing to share.

I would call totally cured, no symptoms, no residuals, totally functional.

I would call remission, a lack of “active” CIDP, where you are not in a period of decline. You may have pain, damage, and/or residual damage, but it is not getting worse at the moment.

There might be a category called “plateau” that I might use also. PLateau might refer to a person whose CIDP is inactive, and has been inactive for some time. It has been arrested and stopped. But the damage is still there.

Remission implies that it can/will come back. Plateau hopes that it will not. Maybe just a word, maybe hope.

Dick S

Everyone is getting hung up on the semantics of the word “cure” – applying their own definitions as to what “cure” means to them personaly – one going so far as to say: “cure means never having to worry about it coming back” – Good luck with that – you dont think it crosses Lance Armstrongs mind from time to time. As far as medical definitions – 5 yrs – symptom free – do you think there is something magic that happens medically when you click over 5 yrs? – some dramatic change that occurs in the bell shape curve? No – it happens becauses physicians gathered at a conference and arbiutrariy picked 5 years – just like astronomers did when they decided to call Pluto an astereoid, and not a planet as we all grew up thinking. So if the patient dies at 4.9 years – he died from his disease – but if he dies at 5.1 years he must have died of a different disease because he was supposedly “cured” when he clocked over 5 years? How much sense does that make.

Truth is – You are born with a terminal disease. Its called “Life” – and Life ends in “death” for ALL of us. You can never prove “cure” – just like you can never prove a negative.

Now – with all that said. Alice is one of the strongest persons I have ever known. When I first contacted her – she couldnt walk. Now – 2.5 months out of stem cell xplnt she is walking miles a day and swimming her buns off. All the symptoms we are all so familiar with the the shaking fingers, numbness, ataxia – gone – GONE. Prior to that she had tried Pred for over a year, IV-IG, cyclosporin etc. Nothing worked. Her turnaroud is nothing short of miraculous! I look at her and refer to her as “Exhibit A” of the success of HSCT. So you can rain on her parade all you want – if you can catch her in your wheel chair as she sails by. Will it last forever? No one knows – its impossble to know. Will she have some residuals – well – I dont think anyone can go through this disease and not emerge with a few scars – but she is already 90% back in 2.5 MONTHS !!!! (hard to get rid of a case of mono in that time) – this from a woman who at one poiint couldnt even roll over in bed. We should ALL BE CHEERING!!!

Now – some “facts” for the doubters:
1. CIDP is usually progrssive over thee long term.
2. The longer you have it the more permanent the damage
3. All standard procedures involve immune suppression and living with both the disease and the treatments in a more and more progressive manner for the rest of your life.
4. HSCT is the ONLY treatment that offers both Sustained and Meaningful recovery (I wont use ther “C-word” – but it is what it is)
5. Treatment Mortality for HSCT is under 1%
6. Success as defined by going up 2-3 or greater on the disability scale is 80%+
7. The longer you wait the more your nerves die and nothing will bring them back

I personally cannot even expresss how much admiration I have for Alice”s strength and courage. For the skeptics and dopubters – dont doubt for ever -your nerves are being desroyed every day.

[QUOTE=Jim D]Now – with all that said. Alice is one of the strongest persons I have ever known. I look at her and refer to her as “Exhibit A” of the success of HSCT. So you can rain on her parade all you want – if you can catch her in your wheel chair as she sails by. Will it last forever? No one knows – its impossble to know. Will she have some residuals – well – I dont think anyone can go through this disease and not emerge with a few scars – but she is already 90% back in 2.5 MONTHS !!!! (hard to get rid of a case of mono in that time) – this from a woman who at one poiint couldnt even roll over in bed. We should ALL BE CHEERING!!!

[COLOR=”Navy”][I]Jim, what on earth gives you the idea we are doing anything BUT cheering for Alice? Of course we are. And also of course, many, if not most, of us simply cannot afford stem cell or bone marrow treatments.[/I][/COLOR]

Now – some “facts” for the doubters:
1. CIDP is usually progrssive over thee long term.
2. The longer you have it the more permanent the damage
3. All standard procedures involve immune suppression and living with both the disease and the treatments in a more and more progressive manner for the rest of your life.
4. HSCT is the ONLY treatment that offers both Sustained and Meaningful recovery (I wont use ther “C-word” – but it is what it is)
5. Treatment Mortality for HSCT is under 1%
6. Success as defined by going up 2-3 or greater on the disability scale is 80%+
7. The longer you wait the more your nerves die and nothing will bring them back

[COLOR=”Navy”][I]And who are you to deliver to the rest of us “facts”? And why are we considered “doubters”? Do you know something none of the rest of us are privvy to?

I must say I found your post offensive.

Rocky[/COLOR][/I]

[QUOTE=Rocky36][QUOTE=Jim D]Now – with all that said. Alice is one of the strongest persons I have ever known. I look at her and refer to her as “Exhibit A” of the success of HSCT. So you can rain on her parade all you want – if you can catch her in your wheel chair as she sails by. Will it last forever? No one knows – its impossble to know. Will she have some residuals – well – I dont think anyone can go through this disease and not emerge with a few scars – but she is already 90% back in 2.5 MONTHS !!!! (hard to get rid of a case of mono in that time) – this from a woman who at one poiint couldnt even roll over in bed. We should ALL BE CHEERING!!!

[COLOR=”Navy”][I]Jim, what on earth gives you the idea we are doing anything BUT cheering for Alice? Of course we are. And also of course, many, if not most, of us simply cannot afford stem cell or bone marrow treatments.[/I][/COLOR]

Now – some “facts” for the doubters:
1. CIDP is usually progrssive over thee long term.
2. The longer you have it the more permanent the damage
3. All standard procedures involve immune suppression and living with both the disease and the treatments in a more and more progressive manner for the rest of your life.
4. HSCT is the ONLY treatment that offers both Sustained and Meaningful recovery (I wont use ther “C-word” – but it is what it is)
5. Treatment Mortality for HSCT is under 1%
6. Success as defined by going up 2-3 or greater on the disability scale is 80%+
7. The longer you wait the more your nerves die and nothing will bring them back

[COLOR=”Navy”][I]And who are you to deliver to the rest of us “facts”? And why are we considered “doubters”? Do you know something none of the rest of us are privvy to?

I must say I found your post offensive.

Rocky[/COLOR][/I][/QUO

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I think that Alice and Jimd owe us an apoligy to catagorize us as ingnorant closed minded bumpkins who dont know right from wrong. We accuse others of that which we are. If I am like that please let me know..

yes, kelly, please do– turn off your computer for a while if this dialog is too stressful for you, take a bath or something– and “wow” back at you.

for those who feel it “irresponsible” to post the hope and success in this treatment– especially WithHope– i called the program director this morning and asked for research on the matter so that we don’t have to lamely give personal “opinions” on the matter… i explained the debate going on here and she sent me 6 publications on the protocol– available on my website: [url]www.alicedicroce.com/research.html[/url] ~they were too big to attach as links here…

the research also shows that the longer you wait, the less chance that stem cell transplants will work, period. to date, northwestern has done 306 autoimmune transplants and their mortality rate is [B]LESS THAN 1%[/B]. so– “irresponsibility” is posting [B]wrong[/B] information/opinions, gathered second hand from uninterested neurologists… what a shame.

no, no apologies here– i chose my words very carefully. “ignorance” means quite plainly having a lack of knowledge of a given subject, period. and i do believe that some, i repeat, [U]some[/U] do seem to relish sitting in their condition– maybe this stems from an attraction to the attention they receive from being categorized as sick–don’t know. i do know that i have held back for long enough and now i feel it necessary to tell it as i see it– hopefully some will benefit– and certainly some will despise. not a problem.

on the matter of support– i said this not to be insulting– it was stated as a fact. Dawn Kevies mom– you brought up my request for letter writing as an example of the forum’s support~ are you kidding? only [B]one[/B] person on this entire forum wrote a letter–ken. bad example Dawn Kevies mom– i would have thought that folks who share the same illness would have taken a few moments out of their day to copy and paste an already provided letter… not so. so better not to speak of support to me… and– the only reason i continued to post, or sophie when i was too ill, was for others, especially the new ones who read this forum. simply, i have never needed support from the outside world, that’s me, that’s just a fact. if you and others need it–good for you, i don’t fault you~

and by the way Matteyrae, if you think my words are an “attack,” then your state of fragility is sadly evident. i speak the truth as i see it, directly and without reserve. don’t like it, ignore it.

people, stop the sensitivity, if you can. did it ever occur to anyone that all of the emotions and agitation brought up by my words might be as a result of having touched upon something deep and unexplored? something that needs to be said… if the shoe doesn’t fit, move on to the next post… the dysfunctionality on this forum has hit new highs… no apologies here.

finally, get off jim’s back rocky– is your issue with him because he has not posted before? does that discredit his input? is there a requirement that you must act humble for a while before you express yourself fully? c’mon… he belongs here because he too has cidp– he isn’t holding anything “privy,” he is giving his input as he sees it, just as all the rest do.

on a softer note– if i could wave a magic wand, i would offer everyone of you a cure. i am so sorry for all of our suffering.

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Alice,
I’m sorry, I did not mean to anger you by my response to your post.
I felt your words were harsh, it has nothing to do with my state of fragilty. Best of luck
Shirley

When I knew I was stable with CIDP I went to a highly qualified doctor who treated GBS/CIDP for a consultation so that my neurologist would have feedback from him before I was withdrawn from treatments. This consulting doctor said that my neurologist should look into the possibility that I “burned out” he did not use the term remission. I am a realistic person, so I think in the terms that I have been in a remission for seven years, but since I have remained stable without treatments, have shown no signs of progression returning or relapsing, yes I do wonder if CIDP is gone. But then, can my CIDP be cured when I have been left with heavy residual damage. I don’t know.

Regarding the matter of support, you get what you give. If I recall, the request for the letter from others as sick, or sicker than you also had a tone of entitlement connected to it. not the letter, but the request. You sought out and enjoyed all of us coming to your personal space offering up prayers and hope. We did support you, no one ever said it was a stupid idea, some just felt that all of the possible outcomes should be considered for their own personal scenario. You are on the pillar just where I think you want to be, and I thank you for having the courage to stand on that pillar and pave the road for the trial. But this is a matter of individual choice that does not have to be judgementally shoved down our throats if we do not take your path. hurling degrading insults at sick,vulnerable, sad, trapped,hurting people who may not have the ability,desire, capability to enter the trial is nothing short of barbaric. There is much to be said for being honest as you state you are, but there is a kind tactful, compassionate way to do it. As stated numerous times before, our prayers and thoughts are with you on this medical and emotional journey. Please do not reference me any more as I do not want to be a part of this discussion any longer. You do not control my destiny nor do I control yours. Leave it at that and allow me to do what I see fit along with my doctors for Kevin’s condition. As you should do the same with your destiny.
Dawn

[QUOTE=alice]
the research also shows that the longer you wait, the less chance that stem cell transplants will work, period. to date, northwestern has done 306 autoimmune transplants and their mortality rate is [B]LESS THAN 1%[/B]. so– “irresponsibility” is posting [B]wrong[/B] information/opinions, gathered second hand from uninterested neurologists… what a shame.

[I][COLOR=”Navy”]But, Alice, not all of us have progressed much, if at all, beyond initial diagnosis. Not everyone is a candidate for that which you underwent. [/COLOR][/I]

no, no apologies here– i chose my words very carefully. “ignorance” means quite plainly having a lack of knowledge of a given subject, period. and i do believe that some, i repeat, [U]some[/U] do seem to relish sitting in their condition– maybe this stems from an attraction to the attention they receive from being categorized as sick–don’t know. i do know that i have held back for long enough and now i feel it necessary to tell it as i see it– hopefully some will benefit– and certainly some will despise. not a problem.

[COLOR=”Navy”][I]You are being unduly harsh. I doubt that anyone here is “ignorant” of the subject.[/I][/COLOR]

and by the way Matteyrae, if you think my words are an “attack,” then your state of fragility is sadly evident. i speak the truth as i see it, directly and without reserve. don’t like it, ignore it.

[I][COLOR=”Navy”]And are you a qualified psychologist, Alice? What right have you to judge anyone else whether it be the person or the “state of fragility”?[/COLOR][/I]

finally, get off jim’s back rocky– is your issue with him because he has not posted before? does that discredit his input?

[COLOR=”Navy”][I]Definitely it does not discredit his input. However, it would be seemly to make an initial appearance as something other than the complete and utter expert on the subject … a subject with which we are all quite familiar.[/I][/COLOR]

on a softer note– if i could wave a magic wand, i would offer everyone of you a cure. i am so sorry for all of our suffering.[/QUOTE]

[I][COLOR=”Navy”]Alice, I wish you every good outcome. I followed along with bated breath, hoping and praying that everyone would work well for you. I wish Jim every good outcome. Not everyone will be so fortunate. Perhaps because the protocol didn’t work. Perhaps because the funds were not there to undergo the procedure. Please do not judge others. That, too, is unseemly.[/COLOR][/I]

I think it is time for everyone to just step back and take a deep breath. The purpose of this site is to help each other. We are a family and sometimes families have arguments. In those situations feelings can get hurt when we didn’t intend it and things can begin to spiral out of control. It looks like that’s what is going on now. Why don’t we just step back end this tread.

Alice references six articles about the use of hematopoitic stem cell transplantion in autoimmune disease. The first article she references is the only case of CIDP–that is ONE case report in which one young lady had a non-myeloablative hematopoietic stem cell transplant for CIDP. The conclusion of that article is “Although follow-up is short (22 months), this promising result forms the basis of further studies of autologous HSCT for refractory CIDP.” The other articles talk about HSCT in other autoimmune diseases–some neurologic and some where the autoimmune attack is on other body systems. There is only one patient with CIDP in all the studies.

I hope that all of us try a tiny bit harder to be kind to one another and to provide support and hope and information.

WithHope for a cure of these diseases

Ok I read this thread and I feel badly for everyone who has been posting and for Alice and Jim. everyone was so excited and supportive when Alice was going through her stem cell treatment. Yes even I missed her posts after her treatment was over. I wanted to know how she was doing. so yes it was a little sad when she stopped coming. But she has to take care of herself, so if that means working on getting better and focusing on herself then go for it.
I was glad that she was also able to go be with Jim and help him through his treatment.

Now for the “cure” word Maybe it was not the best word to use because so many look at that word to mean the CIDP will never come back. But I am glad that Alice is doing so well and feels like her CIDP is gone for good. so why are you all so mad that she chose that word “cure”? so what if she used the “cure” word. Its not like she said her doctor told her she was cured, I am sure he can’t use that word so soon. But she feels cured so let her be happy. I hope her CIDP never comes back.

I am sure Alice of all people knows that it could come back but my goodness we should all try to think positive. Speaking positive words brings about a positive outcome. I am also thinking that she was upset because she is being attacked over one word.

I know when I read her post on teh facebook CIDP site my first thoughts were gosh I hope new CIDPers don’t get the wrong idea and I thought gosh I don’t think I would say cured so soon. but you know its not for me to say she is wrong, who knows she could be cured. why are we so afraid of that word?

I think if my son got a treatment and all of his symptoms were gone in 2.5 months I would probably be screaming from the roof tops that the treatment he was getting and God had healed him or cured him. does it make me wrong, I don’t think so. Now if it were to come back then we would deal with it then. But we would relish in the fact that he was better, now

But for the sake of this site and not to hurt each other any further we all need to stop trying to be RIGHT. everyone’s CIDP affects them differently and all teh treatments used to treat this terrible disease affects each patient differently.

So I hope everyone gets better and I hope that stem cell transplant for CIDP gets approved by the FDA and Alice and JIm I am so happy that Life is Good. I will contine to check out your website to see how your doing. There is such promise in this treatment. there are several people at the facebook site who have already had the same treatment done or are going through it right now so I wish them the same success that you have had.

It will be great when you go back to work. I am just so grateful that you took the time to keep us updated on your progress because you didn’t have too. It let us all see that there was another treatment being tested for this CIDP and yes I beleive that it is going to be the closes thing to a cure. But you know I guess I shouldn’t say that because there are some people not all people, who get IVIG, plasma pheresis, and other treatments who respond to those treatments in such a way that its like they aren’t even sick as long as they are getting the treatment on a regular basis. so there are people out there who have mild CIDP, moderate and severe. we just need to be considerate to others feelings and not always be so serious and think its our duty to set someone straight just because they say something that you don’t agree with. also remember typing has no emotions you can’t see or feel someones emotion through typing.

well I hope people don’t get mad that I defended Alice because I like the support we get from this forum because everyone here knows what its like to have CIDP but we need to keep in mind that just because we dont always share the same views or agree don’t make the one we disagree with wrong.

Best of luck to everyone and yes there are lots of treatments out there and we all just need to find the one that works the best for you.

[I]I would agree … to each his/her own. However, mean-spirited and vindictive holier-than-thou prounouncements are uncalled for and in horrific bad taste.[/I]

thank you dean

(this is sophie)

that’s precisely where we’re at – the most important is exchange of information – that’s what we initially came to get – and that’s why we make a point of posting updates on this stem cell treatment

at one point alice was discouraged by this lack of perspective here and felt she didn’t want to post anymore – i encouraged her reminding her of how important it is to post this info even if it helps ONE person

and that’s what happened – that’s how jim got this info to now do this treatment

alice shares the info first hand – she’s acutely aware of what is happening in her body and feels the cidp has been cleared out of her body and if there’s anything important to share in this forum, this is it.

she’s coming up on 4 months post transplant, is off all meds, and has only improved exponentially (as dr burt told her she would). prior, if alice stopped taking prednisone more than a week or two, she deteriorated quickly and severely. so subsequently, we’re pretty convinced, as you can well imagine

mostly i just wanted to piggyback your sentiment of the importance of discussion, however heated it may sometimes become, so thank you for posting that perspective

as an aside, both alice an i have always enjoyed all you have had to contribute
since reading the forum

be well dean,
sophie

As I read back over the posts and look at dates and times, seems like everything went south when some folks disputed Alice’s use of the word “cured”. I posted on the success forum and won’t repeat everything here, but I am close to Alice and Sophie, and now Jim D. And I cannot find any reason why there are so many objections to Alice using the term “cured” in her success story.

[B]But what is so amazing is that the success Alice is experiencing is getting lost with so much skepticism! Let me repeat that – this IS a success and it IS real and it IS happening right now.[/B]

Here’s what I know:
• I saw Alice before and I saw Alice after – day and night difference!
• Because of her courage and those before her, insurance is starting to pay some of the costs this year
• Last year my insurance included nothing regarding stem cell transplants – this year there is a long list of conditions the insurance will cover
• It might be expensive but it also might be that it is, or soon will be, covered. However, if you don’t ask, you won’t receive
• I’ve done my research, my neurologist is now doing some research and I’ve requested all the paperwork over this procedure to start the process of applying and seeing what my insurance may be willing to cover

I came to the forum to learn. I’ve learned more from Alice than anyone else. [B][U]I have not heard or learned of another treatment, procedure or process that yields the same result as the stem cell transplant. [/U][/B]And I think it is up to each and every reader to sift through whatever is posted here, do further research and have discussions with doctors to reach their own conclusion.

WithHope – I searched through the forum and I see no place listing you as the medical editor, however please feel free to correct me if I’m wrong and show or point me to the place listing your official status. Otherwise, please know that I am intelligent, well read, hold several degrees and have one of the most awesome neurologists around and really believe I can learn what I need to learn through thoughtful research. I do not need you or anyone else to caution or advise or correct anything I read or write on this forum. If/when I ask input, I then hope everyone will be extremely candid with me and provide it. But I don’t remember anyone asking, in the success thread, for “a little word of caution” or for “perspective/information that advises thoughtfulness and a bit of caution with a new approach”.

Rocky36 – And that just makes it even more ironic that you question Jim D by asking “And who are you to deliver to the rest of us facts” while accepting everything WithHope says without question. Jim D is currently undergoing the stem cell transplant procedure – today was harvest day – and so he and Alice both can speak very factually about their process! The facts he stated are correct. And he stated them in relation to his procedure. And after seeing the success Dr Burt’s program is having right now today, I am amused when I see threads like “maybe not in time to help us but …”

Deanop – kudos, you handled this the way I would expect in an open forum, by questioning. You didn’t “caution” and you didn’t rain on a success story by treating the rest of us as if we would blindly jump into this without thought or learning or input from doctors or consideration of costs or whatever … and felt it necessary to provide a lecture of caution because I’m too ignorant to know better! Thank you for asking a question for open comment in the CIDP forum and not the success forum. I appreciate that many responded with words along the lines of “for me it would mean …”. This is the good stuff of the forum.

J.Dennison – I’m with you – this completely derailed the success story as you stated it so eloquently.

Rhomcc – right on!

Hopefully the forum will learn and grow from the dialog this created!

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Alice, and all others who have posted on her behalf,

Thank you for keeping us updated throughout your procedure. I had applied and was turned down because I had not gone through alll of the other available treatments. The folks there were nice, they just wanted me to have experienced failure at other protocols. As a risk/reward mt neuro was hesitant to put me on high dose chemo because I still had some function, so I sat in the middle.

I do believe that the stem cell treatment may be the one that is the winner for us and folks like you are the one’s paving the way for the rest of us. I only wish I could have been sitting there right beside you every day.

A very good friend (a forum friend) died just prior to the same program you went through. I don’t know if people remember her and associated her death with the stem cell program, which it was not. I am glad to hear that the mortality rate is as low as it is. When the Dr. who initially talked to me about the program explained it, she led me to believe that there was a distinct possibility. I am glad it is as low as it is. Hopeful signs.

I am very glad that you have shared your journey with us. I have learned more and have been helped by your process.

Thank you.
Keep up your recovery, I have been hoping

This discussion is rather painful and probably pointless based on the fact that many people are attacking rather than debating, but I have one last entry to make on the subject. I am one of the few people, if not the only one, who works each day in the medical field and is currently participating on this forum. As such I sometimes feel the importance to try to make sure that both sides of a subject are presented. As I stated repeatedly, I did not intend to rain on anyone’s parade and I certainly would not have taken the cautious way to state what I did if I thought people here were to “ignorant” to be able to gather and assemilate the facts. I work with children and teens and scared parents and often will restate important pluses and minuses of treatment just to make sure that they are understood and to allow people the dignity of not having to say that complex options are not clear. This is never meant to insult people–it is meant to educate. I apologize to anyone taking offense at the fact that I wanted people to understand that there are very real postives and real negatives with stem cell transplantation because it is important to understand. Also that this process is very young and not a lot of people have undergone it nor has much time passed for most yet. Being a Phase I trial means that it is not “proven” in medicine; it is experimental and will be treated so at least until the trial is completed and results are reported.

For people that work in the medical field–especially oncology care and research as I do, cure is a well defined term and it is extremely important for it to be so. As was pointed out, 5 years may seem arbitary, but because it is used the same in each study, one can compare treatments and outcomes. One has to have defined words and defined goals to show if something works. One of the biggest problems with CIDP research is that there are not great definitions of “improvement” that can be applied to all individuals in a study–because the manifestations of the disease are often different in different people and because some damage, once done is irreversible. It is much easier to understand a person being cured of a bad infection in the bloodstream, for example, in which one looks for when the blood cultures stop becoming positive with the infectious organism. With a complex illness like those in neurology, it is harder to define improvement because some people will walk much better, some people hurt less, some people have more endurance–just think of all the ways that people are affected with CIDP. It is important to have a stable definition of cure and what one is looking at in a study in order to be able to say if the treatment working and if it is better than what was done before. Sure, people on the forum do not need to use every word as is used in medicine, but if people do not understand how it is used in medicine, it is hard to really understand the risks and benefits of options. Having no evidence of disease return for five years may have been “arbitrary”, but it the standard and it is long enough to estimate “forever” without meaning that people have no conclusions for decades. Having disease go away for a few months is great, but, as stated before, what we want is that the disease never come back in new treatments for patients. We want cure. Five years is the best standard approximating that.

Linda, you ask if I am a medical editor. I sometimes have that role in life, but most of the time I spend my time taking care of patients and helping them to understand and better fight their illnesses (and in doing clinical research). I do not do it from an attitude that I know more or that they are “ignorant”, I and others that work with me do it with the attitude that information is power. I fully acknowledge because I work with people undergoing stem cell transplant, I am sensitive to making sure people know what this is and that it is a hard procedure. Because it is, it is even more important to be educated about it. I wish all of you the best on this forum and that you find knowledge. Even more, that you find support given with kindness.

I hope that people return to trying to support and help each other. It is so hard to go through illness without this.

WithHope for a cure of these diseases and for peace

This is a good thread, and I’d like to add a few things.

I contacted Northwestern University, and from all of their advisements, I qualify medically to enter the treatment. I was also advised that my insurance should cover 80% of the costs, leaving me about $20K+ and the extensive travel/lodging to cover myself. (I am 47, on full disability, covered by Medicare) I decided to pass on the opportunity for now, as the out-of-pocket and most importantly, the several weeks that would need to be spent 1,000s of miles away from home/family just were not right for me right now.

However, if I could instead obtain this treatment at UCLA, City of Hope or some other center in Los Angeles where I live, I would enter it right now, in an instant – that would be a great situation that I would go for right now. My belief is that will be a reality in the not too distant future.

Since my CIDP is mainly slowly progressive, and I have extensive long-lasting nerve damage from the years of disease activity, my expectations for the protocol would be to to halt the disease progression (cure the disease itself, if you will) thus affording the luxury of going off all current treatments and purely focus on long-term healing, like Pam H. is after her Cytoxan treatments. Even still, after the stem cell transplant, I’m sure I would have strong residuals the rest of my many years to come in this life, but I guess I’d consider myself “cured” of the disease itself. This reality gives me some assurance fr my thought to sit tight and wait a bit until the treatment is more widespread for autoimmune applications. Unlike Alice, I’m not in an acute, rapidly declining state that really demands rapid, aggressive intervention. She did the right thing aggressively moving to receive the treatment.

Since CIDP responds to immuno-suppression, it totally makes sense that immuno-ablation would likely produce lasting remission, or cure.

As I understand, the [COLOR=”black”][COLOR=”Black”]non-donor[/COLOR][/COLOR] autologous stem-cell protocol is very safe, and proven as a main-line treatment for many blood malignancies, like non-hodgkins lymphomas, etc, when the disease recurs after chemo. It is not considered experimental for those applications and it is done frequently, it is considered experimental as applied to CIDP (as well as other autoimmune applications)

It is Allogenic, or donor transplants of peripheral blood or bone marrow-derived stem celss that carry the greater risk of things like donor v. graft rejection, the rigors of more extensive pr-transplant conditioning, life-long immunosuppression, etc.

Frankly, I fully expected and am not in the least bit surprised by Alice’s response to the protocol. I would have been shocked if she would not have had this level of response.

but know this– you wrote, “Unlike Alice, I’m not in an acute, rapidly declining state that really demands rapid, aggressive intervention.” actually, i was [B]not[/B] in such a state… i just didn’t want to live with [U]any[/U] disability, if i could help it, nor did i want to take immune damaging drugs for life– by definition these drugs are counter-productive to good health…

i would do this treatment again in a heart beat! i have my life back, literally!

should you ever want to discuss the treatment further, i am always available 😉

in the meantime, best of luck and [I]thanks for some good perspective~[/I]

alice

Alice:

Thanks for correcting me on your actual condition pre-treatment. Here’s what I meant to convey regarding my condition – If I were to have the HSCT treatment and it fully eradicated the autoimmunity causing active CIDP in my body, the chances are extremely likely that I would continue to have heavy residuals long-term, possibly forever. Things like 0/5 scale strength foot drop, 1 or 2/5 weakness in right quadriceps and hip flexor, 0/5 waekness in the left hand as these are areas shown on multiple NCV/EMG to be areas of severe axonal loss.

I would expect other areas of disability to reverse quite quickly, where the damage is limited to myelin.

However, knowing I could halt progression and disease spikes, and be completely free of treatments will be awesome – then, maybe there will be a medical breakthrough on axon regeneration……..Then, I’ll be back on the snow skis baby……

Alice,
You are Cured, and you have every right to proclaim this fact to the world.
Our very being and our own bodies know when a cure happens.

You have inspired me with the strength in your heart and soul that has enabled you to blast out the negativity and rancor posted on this forum.
I deeply appreciate your supporters who expressed so well on your behalf their intolerance and vehemence regarding some of these hostile posts.

You posted your stem cell therapy procedure to educate us and to help make us aware that this therapy is possible for many others as well. I truly believe that because of your bravery and concern for others that more than one person will benefit from your shared information and the stem cell therapy. You have not only generated hope in others, but have also opened a pathway to the future in medicine. Thank you Alice!

BTW I sent out every E-mail address you listed using your suggested letters.
Perhaps more people wrote than you realized. I hope so.

Billt– i too had some pretty significant axonal damage according to my emg/ncv’s… i had total foot drop– they hung like dead fish and when i hobbled, i tripped over them in a very drunkard and disabled fashion :rolleyes:

for what it’s worth though, i got pretty much everything back– including the axonal loss which is supposedly irreversible. you just never know… of course i’m still healing and there remains some minor weakness when i push off with my toes– but it is nearly unrecognizable…

while i can’t speak to the expenditure of money– i will say that when i went through the program, sophie and i flew home twice. breaking it up into segments made it seem much shorter in duration and hence more tolerable. the bulk of the program is the 17 day hospitalization at the end. when you are discharged, assuming your counts are cool, you are free to return home… you are asked to do frequent labs at home for a while to make sure your numbers are rising appropriately… i had no problems and have been in normal ranges for some time.

my biggest complication was an early menopause– no matter, at 44 it was due to come in a few years anyway 😉

KatyK– thank you so very much for your supportive post. i fear that such a positive thing got so lost with the chatter– and my only goal was to get the information out so that anyone interested, especially new folks, knew this treatment existed as an excellent option. it’s a personal choice, of course– an elective procedure, no doubt– but no matter what anyone’s opinion of it is, it’s exposure is important. further, since it has been so successful for me and hundreds of others (various autoimmune disorders), i was exceedingly excited to actually get to post under the success story category– oh how i had dreamed of someday being able to do that… when first diagnosed, i painstakingly searched in vain under that category, desperate for hope and found none.

i am not sure why so many buttons got pushed by my use of the word “cure”– and while some of my word choices subsequent to my initial post may have seemed harsh– i still feel the same way and wonder too why those comments and their content angered some… as an aside– all this talk of “complications” seems odd considering that cidp itself is a lifetime of complications, not to mention the effects of the meds needed to [I]keep it at bay[/I]. well, to each their own right? i just want the lurkers and new folks to know that there is another option available that offers a potential cure or, if some prefer, a long term, sustained remission~

also, thank you so much for sending off those letters back then 🙂 i didn’t know and thank you much!

what a shame we can’t all stick together, rally, shout, publicize, etc… support is a wonderful and necessary thing– but i think knowledge, action and education are even more important. support requires an accompaniment. i felt like screaming from a rooftop but found so few who shared this disease to scream along side me. i realize i am probably going to stir anger again by saying this, but i felt and feel that acceptance and support alone, closely resembles resignation and defeat.

i know i will most likely get pounced on again for what i’ve written. i really don’t mean to offend and truly harbor no ill feelings toward anyone here– not even my strongest critics. i do, however, wish the anger could be directed and channeled into a vigorous fight against the real culprit here[B]: CIDP[/B]

Alice how long is the stemcell transplant treatment in Northwestern? Like how long start to finish when you get to go home?
Ryan has had one cytoxan treatment now so I dont even know if he would be able to do it now but he was just wondering.

the fact that ryan has already done cytoxan and will be doing more does not make him ineligible for the program– as a matter of fact, jim d., who is currently going through the treatment, had cytoxan treatments prior… we are here with him in chicago for support– his blog is a part of my website if you’d like to follow how he’s doing…

regarding the length of the protocol– start to finish– it’s approximately 2 months– but there are a couple of sizable breaks where you can go home and take a break…

i’ll send you my number in a private message so you can call if you want to discuss it further…

hmm I have a question. stem cells? gene splicing or silencing? what gene?which chromosome? hehe I just thought my anticts belonged here somewhere. man each forum has its own personality. I do have to say that this is a more serious humored group. I hang out with the MSers although I am just a singular sclerosis type of gal lol. and they are always up for a good theory as to how such a complex string of system failures could lead up to scars in the central nervous system. this group has always been OK with accepting that it just is and thats ok too. you have to weigh it all out and moving on and living with the illnes or delving into obsessive madness to figure it out or chancing new procedures, we all have our way of dealing with things. I am critical of no one. Myself reguardless of where the damage left behind has catorgorized me, I am content to get to the bottom of this at any cost. I am actually having fun trying.

[QUOTE=alice]Billt– i too had some pretty significant axonal damage according to my emg/ncv’s… i had total foot drop– they hung like dead fish and when i hobbled, i tripped over them in a very drunkard and disabled fashion :rolleyes:

for what it’s worth though, i got pretty much everything back– including the axonal loss which is supposedly irreversible. you just never know… of course i’m still healing and there remains some minor weakness when i push off with my toes– but it is nearly unrecognizable…

while i can’t speak to the expenditure of money– i will say that when i went through the program, sophie and i flew home twice. breaking it up into segments made it seem much shorter in duration and hence more tolerable. the bulk of the program is the 17 day hospitalization at the end. when you are discharged, assuming your counts are cool, you are free to return home… you are asked to do frequent labs at home for a while to make sure your numbers are rising appropriately… i had no problems and have been in normal ranges for some time.

my biggest complication was an early menopause– no matter, at 44 it was due to come in a few years anyway 😉

KatyK– thank you so very much for your supportive post. i fear that such a positive thing got so lost with the chatter– and my only goal was to get the information out so that anyone interested, especially new folks, knew this treatment existed as an excellent option. it’s a personal choice, of course– an elective procedure, no doubt– but no matter what anyone’s opinion of it is, it’s exposure is important. further, since it has been so successful for me and hundreds of others (various autoimmune disorders), i was exceedingly excited to actually get to post under the success story category– oh how i had dreamed of someday being able to do that… when first diagnosed, i painstakingly searched in vain under that category, desperate for hope and found none.

i am not sure why so many buttons got pushed by my use of the word “cure”– and while some of my word choices subsequent to my initial post may have seemed harsh– i still feel the same way and wonder too why those comments and their content angered some… as an aside– all this talk of “complications” seems odd considering that cidp itself is a lifetime of complications, not to mention the effects of the meds needed to [I]keep it at bay[/I]. well, to each their own right? i just want the lurkers and new folks to know that there is another option available that offers a potential cure or, if some prefer, a long term, sustained remission~

also, thank you so much for sending off those letters back then 🙂 i didn’t know and thank you much!

what a shame we can’t all stick together, rally, shout, publicize, etc… support is a wonderful and necessary thing– but i think knowledge, action and education are even more important. support requires an accompaniment. i felt like screaming from a rooftop but found so few who shared this disease to scream along side me. i realize i am probably going to stir anger again by saying this, but i felt and feel that acceptance and support alone, closely resembles resignation and defeat.

i know i will most likely get pounced on again for what i’ve written. i really don’t mean to offend and truly harbor no ill feelings toward anyone here– not even my strongest critics. i do, however, wish the anger could be directed and channeled into a vigorous fight against the real culprit here[B]: CIDP[/B][/QUOTE]
I keep checking your personal site for updates but haven’t found anything since December. Please don’t bail on the forum. You have not said one offensive word in my opinion. I am thrilled to have scanned through all the threads and read that you are doing well. I will tell the horses as they haven’t had a recent update, and my boss mare, Coppie, will be pleased beyond end . She loves doing healing energy circles. Take care and love to you and Sophie.
Laurel

Laurel,
Your post has been like a breath of fresh air. God Bless you and your horses!
Rhomcc and others have perceived the truth and expressed good ideas and the right perspective on the crazy hullabaloo taking place.
I don’t understand why I should have to defend Alice since she has done nothing wrong but be her strong altruistic self.
I hope Alice comes back. None of us is perfect. Maybe we should all just agree to disagree and start over.

Why should Alice come back? I mean that in a nice way; now that she is feeling almost normal again, getting in shape to go back to being a peace officer soon, & she & Sophie like to travel, she probably needs/wants to get on with her life. When I was much worse off physically I spent much more time on the Forum, saw so many come & go, especially on the GBS forum. Came on posting how they had been completely paralyzed, now are in the process of recovery, & then when they were well again, they were gone. That is as it should be.

I remember back on the old forum when Gene (take care, be well), Jethro, Jerimy, Marc Muirhead, Cathy B, Brandy & many others posted daily. Now we rarely hear from any of them. I have stayed for almost 8 years, as we are retired, I still have residuals (although I rarely ask for help with them,) so I check this sight every few nights to see if there is anyone that is really bad off that I can relate to. When I see a post like that, I usually PM them, ask if they want to exchange phone numbers, or else email in more depth.

If someone comes in asking for help & all they are told is to get IVIG infusions, some need to realize that not all of us have had success with IVIG. If I had children still at home, when I think back to all of that cooking, cleaning, washing clothes, attending their sports & school functions, where would I have had the time to come here? We need to realize that people do come & go, it is a process, a good one. They get the help they need, hopefully get better & then leave. People threatening to quit the forum, what is the purpose of that? Does one feel that this forum will stop just because they leave? Turnover is good, new ideas & treatments should always be welcome. This is supposed to be an exchange, not someone’s recreation…

In the early ’70’s my dad went thru ‘experimental’ cancer treatments -radiation and chemo that saved his life for many years. HE was a guinea pig? But he went into treatment knowing the possible ‘knowns and unknowns’. That he lived as long as he did after is still a miracle to me.
That BC therapies were ‘experimental’ even 20-15 years ago? Things are now treated as ‘routine’ procedures. That 30-40 years ago? IVIG was experimental for immune diseases and is NOW only ‘approved’ therapy is beyond me.
That all said How is this any different? Yes, it’s outside the currently considered ‘box’. But until early last year? IVIG actually was too -after decades!
I WANT TO KNOW! How you do and how well you do from here on out! IF you care to post or not? WHY? Because some new doc is thinking outside that dratted BOX and actually doing something that helps. Like cancer treatments, the issue and concern is cured? No, but for how long! The sceptre hangs over one for ever.
I have had relief, total relief-from the pain? Accidentally after an outpatient surgery…it was HEAVEN. But only lasted about 14 hours. Sigh?
Thing is, we ALL have to accept others’ opinions, be respectful and also challenge politely. Don’t ever accept what you’ve learned ‘to date’ as the end all or be all. BE OPEN TO NEW IDEAS! New stuff is emerging every day! The only ones who can help US are US! On the local, medical and municipal levels, up to the Federal levels. It’s only going to take another 20 years for good protocols to become standard? Think on that a bit.
Alice I applaud you that you too went outside the ‘box’! I know you thought long and hard about what might be best for you and WENT FOR IT!
I admire everyone here? But please, let’s put our own emotions aside now and then and THINK before we write?.
Yes, it IS an emotional issue, as WE are personally affected and at times disastrously! But, we have to be as kind and honest as we can to others. Maybe some comments would have been best PM’ed rather than posted? HUMM? Hope to all! Always!

Laurel probably said it best when she pointed out that miscommunications via e-mail occur easily. I would guess that 50% of our intended meanings and ideas can be lost in an e-mail. It’s hard sometimes to interpret the written word.
Now that I look back I don’t see where anyone deliberately set out to insult, attack or hurt anybody. If we had all been face to face the fight more than likely would not have escalated as it did. The Keyboard can really heat things up.
Others have a right to their opinion as I do mine. No one needs to justify themselves to anyone else. Trusting in the good inentions of all concerned I hope we can come together again.

[FONT=”Book Antiqua”]laurel, you cracked sophie and i up ;), had the horses been abreast all along, perhaps all of this dissension wouldn’t have happened… well, they know now– so bring on the horses! 🙂

thank you also laurel, for your, might i call it a “defense” of that which i’ve recently written. glad you didn’t feel offended by any of it.

same to you katyk– thanks so much for your support, and for understanding the true essence of my words and attempting to translate that understanding.

pam h– you are a wise woman. i don’t think you would defend or argue anything unless you truly believed it. that makes you solid in my book, a person with whom you can trust for the truth and heavenly directness, even if bruised feelings are caused. you and i haven’t always agreed politically:o , but i have always respected you! i never told you this, but i want you to know that actually [U][B]you[/B][/U] were my inspiration in all of this– essentially, it’s cytoxan that kills this beast called CIDP, there isn’t anything magical about stem cells, other than being able to do higher doses of the cytoxan, crashing the immune system, harder and faster because stem cells repair the damage by grafting to the marrow, etc. but essentially, it’s the chemo– and you were able to tell me that you were cured after your 8 months of chemo… even if you used the word “arrested…” and i asked you, would you do it, to which you replied, “yes, i’d go for it.” thank you pam, very much.

when i went to post on success stories, and used that evil word: “cured,” i was happy and excited to do so on many levels. obviously i was happy for me first, frankly. but i was also so happy to be able to post a positive outcome because i felt it important for folks to know that [B][I]anything is possible![/I][/B] northwestern has put 306 people through stem cell transplants for autoimmune disorders with enormously good success rates and less than a 1% mortality rate. the procedure is done differently than the way it is done for folks with cancer– and the protocol is tailored to each autoimmune disease being treated. similar protocols are being done in other countries with equally good results.

i have spoken to a number of people that went before me– 4, 5 and 6 years out from the treatment– because they are so conditioned to not use the word “cured,” they say things like, “well, i’ve been in remission and treatment free for 5 years…,” and “hey, if i relapse in 10 years, it was worth the 10 healthy years…,” and “i was in a wheelchair before the treatment…” etc, etc… i believe it criminal how downtrodden neurologists have been about the treatment– speaking against it while [I]often[/I] not thoroughly understanding how it works in the most basic of ways… blind conservatism contradicts the essence of good productive medicine– without some guts, nothing gets done– no one faces litigation, malpractice– and equally, no one practices medicine and few are helped… it is cowardly and in violation of the essence of the hippocratic oath– [I]but hey, that’s my opinion…[/I]

take care people– i won’t be around very much for obvious reasons put best by pam h. but i will pop in from time to time and will continue to be available via my website should anyone want to discuss the treatment i went through. i’m not hurt, angry or wounded– i’m just moving along, healing and hoping that i prove the conservatives wrong and never relapse with this horrid disease that stole the life i knew and loved.

the very best to you all–
alice

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