Cytoxan is Amazing!!

Alice
What a great report!
I’m happy for you that the unexpected results from the chemo has made you feel so much better.
You are in my prayers and sending you more positive thoughts.
Shirley

Alice,
Things sound like they are going great! How nice of you to offer to talk to other rookies as you call them. I wounder how many people never get the opportunity to feel at ease before a proceedure. It was fate that you should bump into that lady and she helped you. now you will continue the cycle!! Thanks for the detailed info. I agree with your statement that cidp brings on so many other things. Since this ordeal started, Kevin is continually plagued by constant headaches, stomach aches, and flu like symptoms. He is too young for cytoxin being that he is just now starting puberty, but it is good to keep in the back of my mind should things ever change for the worse when he is older. Thanks for your info.
dawn Kevies mom

[FONT=”Georgia”][SIZE=”2″][COLOR=”Sienna”]Thumbs up, Alice! You have such a wonderful attitude …

Much good thoughts are sent to you and to Sophie.[/COLOR][/SIZE][/FONT]

Alice,

When we talked at length (last spring or last fall?) you asked me if my cytoxan protocol was worth it, & what I would do if I were you. Since you were in such better shape than I was when I had the massive chemo infusions, I hesitated, but then told you to go for the “cure”. When I say cure, I have believed for a long time now that chemptherapy is the cure, or will be the cure to many autoimmune illnesses. I truly believe that if I had been able to have my cytoxan infusions before I suffered so much axonal damage during those 9 months on biweekly IVIG, solumedrol once a week & 17PP treatments, that I would be well today.

But I went downhill so fast & suffered so much axonal damage so soon, that a full recovery was just not possible. But since Spetember of 2003, when I received my last chemo infusion, I have not needed any treatment of any kind. No more nursing visits for infusions, no more trips to the neuro; have not even seen him since the summer of 2004. Unfortuantely I was left with some residual damage in my feet & do need AFOs for foot drop, & also take a cane when I go out alone. But I can see you back in uniform in no time at all.

I had my cytoxan treatments here at my local hospital for a cost of $800 each. I did not have the stem cell harvest; I will always wonder if an infusion of new stem cells would have helped my damaged feet. Whenever I would post about my treatment, I was always shot down by others who believed that monthly IVIG was the only way to go; but what if IVIG does nothing for you at all? I am so happy for you, you are truly a pioneer for so many reading here on this Forum. I hope others will now be brave enough to undergo a treatment that will truly cure their illness, not just stop it temporarily. I look forward to more of your posts Alice.
Blessings, Pam

BTW Cytoxan is the same chemotherapy treatment used in breast cancer patients, but we get a higher dosage…

I am so happy for you Alice. I feel as though I am receiving stem cell therapy by osmosis when I read your reports. That positive energy knows no boundaries.
Re: Your questions about cytoxan. I just learned about it now from Pam’s post. I would not hesitate to try chemo with or without stem cells, however, I will wait and see what happens when I get weaned off this prednisone.
What a blessing this site is to learn that someday chemo without stem cell therapy is also an option. Stem cell therapy just seemed out of reach for me, although nothing is impossible.
Right now I’m just thrilled and excited for your healing.

When I had my treatment back in 2003 I was the 4th person total to go through this treatment plan through the University of MN & also the Mayo. My neuro, Dr. Gareth Parry, collaborated with Dr. Peter Dyck from Mayo (he is the neuro who actually named this illness CIDP.) I had faith in them both, as I felt & still do that they were the best in the world. Dr. Parry told me had never had a patient say yes with no hesitation before. When I asked him why more CIDP patients didn’t use this treatment, he said it was the “C” word, chemotherapy. No one wanted to think that they had something as bad as cancer? Here I was, praying that I had cancer, at least there was a chance I could beat it & live a normal life.

Back then in 2003-2007 whenever I posted about my treatment, I was rather harshly criticized on the Forum, so I usually resorted to PM or emailing. I know a number of very tough cases who were cured by CIDP, Emily being one of them. I am glad you have a stronger personality than I do, & maybe there are more people who are getting sick of regular IVIG, or enough who realize they are slowly losing ground. I give you so much credit for speaking up!

I am somewhat reluctant to put this post out but feel the need….I feel like I am in remission from my CIDP at this point but does remission mean cure? I received the cytoxan for a stage III breast cancer and the year before it was diagnosed and treated I relapsed 5 times with CIDP but partly due to the way mine was treated (I was not receiving regular IVIG treatments only bursts of IVIG when I relapsed as well as some PP so one could argue that that was the cause of the relapses.) If I were offered the cytoxan with a chance of remission I would try it but I still feel the weight of it could return just as a cancer patient watches for symptoms of a cancer return. I just happen to be in both boats! So I am not trying to diminish the success of the treatment but just be realistic about the results. I finished my treatments completely and still feel like I am recovering but I am not “back to normal” Again I have been cautioned I may never get it all back due to the axonal damage that has been done. With that said “Go get em Alice!” Attitude will take you a long way! 😀

First off? Can I say [SIZE=”7″]WOW!!!![/SIZE] about how you are feeling!
You must have had one totally raging immune system to get knocked out flat so fast!

As for trying chemo? Don’t you have to admit [even a teeny bit?] that it sounds drastic? I’ve known family and friends who’ve glided thru chemos for cancers and others who were utterly ravaged by them. Chemo [and I’ve also done the ‘cancer’ route] has a heap of negative baggage that goes with it. And, for some? Rightfully so.

IN your case Alice, that combo of chemo AND stem cell is intriguing. VERY. It, for the most part is still considered NEW tho and most insurances won’t go for it. Few enough go for the PP or IVIG. Steroids being the definitely CHEAPER option. For that I fear that is a penny-wise but pound foolish attitude, but I’m merely a patient.

ASK about calcium [w/magnesium and Vit D] supplements from your doctors…Most chemos do a number on your bones and it comes with the territory. Chomp down as many supplements as you can tolerate. Losing bone mass [as I have had w/post cancer ‘therapies’…really a chemo in pill form] can be a very dangerous issue for all of us. And, for some reason, docs don’t keep up on this aspect as they should, could or must.

I’m relieved that so far, you have had little reaction to it all. KEEP AT IT!
When/IF papers are released in the future, I’m sure I’ll know which patient YOU are!

Good hope to one and all!

Five years ago I heard about chemo for Lupus patients in an article from Johns Hopkins Medical Center. I do not have lupus which is an autoimmune disease, but I was diagnosed two years ago with Diabetes type II (autoimmune) and one year ago with CIDP (autoimmune).
Stem cell therapies have been done in Europe for years and are not new, but very successful treatments for not only type II Diabetes, but for CIDP and probably other diseases as well. Why insurance companies in this country claim stem cell therapies are experimental trials only are false claims that are being driven by money and greed. There I said it!
Insurance companies should not be making medical decisions that are in the realm of doctors and medical research.
I could be wrong, but it is my understanding that if you have one autoimmune disease, then you are more at risk for developing another autoimmune disorder. I may be proof of that concept.
Prednisone might have more of the devil in it than chemo. That’s why I take a boatload of D, Calcium, Magnesium, Omega 369 Oil and a host of other nutrients.
We all seem to have individual patterns of distress when illness strikes and side effects from various therapies will show up in some, but not others.
The only thing we know for sure is that Alice is headed for a complete cure and an existence filled with positive energy!

People probably don’t try cytoxin because of the bad side effects. as I have told you before, Ryan has been researching chemo since he got sick, almost a year ago. He has been asking about it for months but for insurance purposes I beleive, the neuros have to first try the other treatments.
We spoke to Dr Lewis about it a few weeks ago and he is going to talk to us more about it once Ryan gets weaned off the prednisone and PP to see if that treatment worked or not. He has made some gains recently but we need to see if they stay once he is weaned down. I know Ryan will eventually get cytoxin just don’t know when. But I know we trust Dr Lewis and when he says “cytoxin” we will do it. We just need to be patient. He has assured us he will not make us stay with a treatment if its not working. so if this treatment he is doing now ends up not working then we know he will not continue on with it. We should know by Nov if its worked or not.

Keep up the great attitude!

Hugs
Rhonda

Jan B,
I was told by my neuro that if the chemo arrested my CIDP, it would not come back, period. I believed him, but also knowing that it might not work at all. Then, after we decided I was in remission, he told me that whatever I got back within the next two years (often referred to as the “two year window of healing”, just as in GBS patients once their attack stops), that is all I would get back. How happy I was at each little improvement, especially beginning to walk again after 2 1/2 years, being able to use my hands again to cook, write, do dishes, wash & fold clothes, bake, etc. I thought that I would just keep on healing. Getting back my driver’s license after a 3 year medical revocation was the high point for me.

But after two years, my neuro was right, I found that the improvements just stopped. It took me awhile to accept that, but after realizing how far I had come, acceptance finally became the new norm. But most of you on the forum are not nearly where I was for so long, I had virtually no quality of life, & my husband had to do so much for me it was often unbearable. For me, chemo was a “No-brainer.” But for someone like Alice, who could walk & use her hands, it was I believe, a much tougher decision. She didn’t want to settle for disability & a lifetime of various treatments. I think she made the right call, & will go on to live a normal life again, free from having to think about being ill for the rest of her life.

Homeagain, it might seem an extreme protocol to some, but drastic? Why is it that so many cringe when they hear the word chemo in regards to CIDP, yet if dx with breast cancer, they would ask when treatment begins. I guess a lot depends on the severity of their CIDP or the ultimate quality of life one wants to have. Again, I am so very proud of Alice & believe we all should be…

Rhonda,
I was just wondering what gains Ryan has made on the prednisone, as well as the PE. I believe that for someone that age, a good result should be almost back to the way he was. That is what I would want for any 20 year old. When Emily had her cytoxan treatments she was fully paralyzed & had been that way for almost a year, or at least deteriorating for that long. How wonderful to hear from her now, back in college full-time & hiking 8 miles. I know you have an excellent neuro for Ryan, so he will do his best, but I want Ryan to have what Emily has, my heart breaks so much for these young ones on this forum…

I am just curious about the insurance issues, as IVIG was costly back in 2002 as was PE. My insurance was thrilled to get by on $800 a month after 3 months of paying for weekly IVIG, PE & solumedrol. I kid you not, for 12 weeks every Friday I began my day with PE, & then rushed home for IVIG & solumedrol. My treatments were costing my insurance company over $40,000 per month. I am also curious about the side effects of cytoxan, as I never had any. But I have said enough, ultimately everyone must pick their protocol based on what they believe is right for them, age might also factor in.

I hope I have offended no one, but until this subject came up, I have been silent for quite awhile. If I were one who got monthly IVIG & was essentially “normal” strengthwise & feelingwise, I might not want to rock the boat. But there are many out there who are not that lucky, & it is nice to hear there are alternatives to IVIG & PE. Good luck to all with this awful illness, & may everone find their own “magic bullet.”

Alice, thank you for sharing your personal journey, I have learned so much and you have helped me in more ways than you’ll ever realize!

I would also like to thank everyone for talking about this so openly.

My doctor has mentioned chemo on several occasions but I haven’t even given him a chance to explain…the word chemo has had my very frightened.

I have booked an apointment for Oct 19th, I will ask him to explain more about his plans and chemo for me.

I’ll keep you posted,
Rhonda from Canada

Hi Alice and all,
Is Rituxan considered a form of chemotherapy? Is it similar to Cytoxan in any way? Thanks and I wish you all good days!
Sandila:confused:

Pam

Ryans little gains would be that he was unable to walk at all and now he can walk with a walker about 200 feet as long as someone is by his side. he shakes alot and it makes me nervous. The docs said its the prednisone that makes him shake. also if he is sitting higher than his wheelchair he can go from sitting to standing by himself but again it is great deal of effort on his part to do it. its like he is relearning to do these things all over again.
so when I say little gains that is what I meant.
Its frustrating because IVIG to some people makes them normal again it did noting for Ryan, plasma pheresis makessome peole normal again. It has not done that for Ryan. It has along with the prednisone made it so that he has enough strength to relearn it all in physical therapy. nothing has made him seem normal again. Far from it. We know that dr lewis will let us go there he has already mentioned it in our first visit if this treatment doesn’t work then we would talk about this. He considers this a good treament but doesn’t like the side effects.
One side effect of cytoxin is lose of hair, sterility, problems with your stomach, problems with yoru bladder.
But Ryan is willing to do it when the time comes if it means getting his life back. and he doesn’t consider walking 200 feet with a walker and spending the rest of his time in a wheelchair as having his life back. its a start but he has a long journey ahead.
Yes cytoxin is cheaper but I think insurance companies sometimes loses sight of what some of this treatments are suppose to do. all they see is cytoxin is for cancer and if the FDA hasn’t approved it for CIDP then they are sometimes not willing to let you do it. even if its cheaper.

Hi Alice,
Oh, how I wish I could be in your shoes right now.
We have talked about about it through our private emails to each other.
I have been a huge supporter of you from day 1, when I sent those letters fighting for insurance coverage. I start my day, everyday, going to this forum, and watching to see your latest updates, with much anticipation.
I am SO glad you didn’t have any side effects from the Cytoxan.

I am hoping for the very best, that this stem cell program will work for you, and put the CIDP into remission. And I must wait, if I can live long enough, to make it to where the Stem Cell Program is out of the “experimental stage”, and it to be listed as a stated protocol of treatment for CIDP, so that insurance companies HAVE to cover the cost.

I am dieing from the complications of CIDP. I have been told this by 4 of the main doctors on my team of 7 doctors, (my primary care doctor, my rheumatologist who is in charge of my chemotherapy, and my neuro, and my Pulmonologist). There are the few 5% of CIDP sufferers where the protocol of treatments DO NOT work. Each year, we lose a couple of people here on the forum, and they pass on. I have been fighting this for the past years with going through ALL the listed protocol of treatments, to no avail. And my health keeps declining.
We MUST keep this in mind, that CIDP is an ugly sister disease to MS and ALS. I have had long talks with my main 4 doctors, about what to expect as time goes on, and I will eventually pass on. I have accepted this–not that I want to, but there is nothing left I can do, EXCEPT FOR THE POSSIBILITY OF THIS STEM CELL PROGRAM. But, it has to come out of the experimental stage, as I have to rely on my own insurance to cover it. I was told a few years ago, that I could be accepted into the program, but would have to pay for it on my own. I do not have the $10,000.00+ needed to cover the costs.
So, I think Alice will be Dr. Burt’s last patient, since his research program states that it ends in 2010. And he can then do his write-up of how the program worked, and report it to the Neurology Community. This is where it then needs to be accepted as a true protocol of treatment for CIDP. Once the neuros start using it, then the insurance companies will HAVE TO cover it.
Until then…I wait…IF I CAN MAKE IT TO THEN…

But, since this thread is talking about Cytoxan, I have to step in and make some comments.
I have been on Cytoxan for over 2 1/2 years now. It is the last possible protocol of treatment I can try. I went through ALL the other treatments, each one for at least a year each, to no avail.
BUT, prior to going on the Cytoxan, I was declining RAPIDLY.
The Cytoxan slowed the progression of the CIDP greatly, though it is still progressing.

The Rheumatologist, who is in charge of administering the chemotherapy, in conjunction with my neuro, has told me the pharmacist at the hospital is very worried that I have been on Cytoxan for so long. BUT THERE IS NOTHING LEFT FOR ME TO TRY. At least it slowed down the progression.
Three summers ago, I was told I only had about 2 years left to live. My neuro feels that by using the Cytoxan, it extended my life another 2 years.
So, by what the pharmacist said that he never had a patient on Cytoxan for this long, is that I may expect severe side effects from being on the Cytoxan for so long, and what it is doing to my bone marrow. But what choice do I have?

I have good months and bad months, on the Cytoxan–you just never know. Though the hot summer months, from July to October, (I am in southern California, and summer goes from June to October, with August/September/October being the hottest months), are usually my worst months, as the heat exacerbates the side effects. That would be nausea, (but I have 3 different pills to control that), and a total wipeout of energy for the first week after the initial dose. I was lucky–I only lost about half of my hair instead of all of it. Though, every day when I comb my hair, at the end, my comb is filled with a bunch of hair. Usually the day of the infusion, and the day after, I feel okay. But it is the days after, sometimes for up to two weeks, I feel crappy. I am on Ritalin 20mg, twice each morning, to fight the great fatigue.

You have to remember, this is a toxic chemical they are putting into your veins. The neuros only like to use this as a last resort. There are more side effects involved with Cytoxan, especially what it is doing to my bone marrow.

I DO suggest the Cytoxan to others where the others have tried the normal protocol of treatment. AS ALL OF US KNOW, EVERYBODY IS DIFFERENT IN TRYING THE DIFFERENT TREATMENTS, AND HOW THEY WORK ON US.
The Cytoxan worked for Pam, as well as others. You just don’t know what is going to work for each person.

But, I will now wait for the Stem Cell Program to come out of the experimental stage, if I can last that long. Out of 11 patients in the program, only with 2 it didn’t work. I call that VERY good odds of trying the program as a normal protocol. Nine people no longer have to deal with this ugly disease.

Keep at it, Alice–I think of you daily! You are the “darling” of this forum right now, and all eyes are on you, with everyone sending their best wishes.
KEDASO
(Ken)

This has been a good discussion. Thanks for the honesty and openness in which it was done.

Alice,

I just wanted you to know that I look for your posts every day. You are in my thoughts and prayers. So happy to hear that it is going well.

And, I find courage to keep at it, keep up on research and keep a respectable level of HOPE!
As for what you said about the ‘C’ word? I meant it in relation to that nasty word called Cancer, which PamH knows all to well as well.
Ironically in two quarters, from discussions w/my docs [both had done research at NIH -Ocon/Hematologist and BC specialty surgeon]TWO issues emerged, and please don’t panic here folks: One, given I’ve a very strong family history of cancers, likely I should have been tested for certain markers from the get go-I was not. Seems that cancers in it’s pre-‘found’ stages can set off the immune system in reactions to it…AND be detected in many ways. Now, that aspect is moot.
Luckily, I was able to keep mobile enough to maintain regular appointments for medical ‘general maintenance’ when my own BC was detected at a very early stage. And, while many cannot tolerate IVIG? There was one very small study from Israel that indicated that cancer tumors while on IVIG tend to be smaller and well contained. I’d been on IG therapy for over 18months when the tumor was detected. I did not have to go thru the ‘regular types of chemos’ that are mostly feared? But for a while the only site I could get my infusions was in the cancer ward of an area hospital – I learned a LOT from the folks there and at cancer bulletin boards and I cannot stress enough how those people have as much courage as we do! No matter what their treatments or cancer stages. A point to also keep in mind is that ‘cancers’ per se, are now more and more referred to in the medical research communities as either ‘Immune’ or ‘Autoimmune’ diseases. How different are we really? Not much, in my estimation.
Alice, I am more and more amazed that your current excursion into medical research is a by-product of likely cancer researces AND a doctor or three who THOUGHT OUTSIDE THE BOX! If you have one of these folks? PLEASE give them either a big hug, fat kiss or sloppy handshake + a BIG grin from me!
Nearly ALL of the medications and therapies we with CIDP have come from creative medical professionals who can and DO think out of that ‘been trained’ box! I laud and applaud them wholeheartedly and without reservation.
I keep looking at clinical trials accessable to me? And it seems some of my other med issues exclude me-each and every time. I am in a trial for something else tho and it surprised me, as I’d read the protocols and can’t imagine how I qualified! Stumps me…not to mention the 50+ pages you have to sign and initial to be in on–all fine print too! Technoprint I call it. As, IT is NOT in the normal English Language as I know of it to be.
Finally, ALICE? I am so, soo relieved that you are spared some of the worster s/e’s of chemo so far. As your doc said? Some react worse than others. Strange how it all affects us differently? IN turn? That’s what makes us and our symptoms harder to diagnose and treat. Do keep in mind all tho? That the meds we mite be put on can mask a lot of issues as well as help us feel better. Nothing comes without some sort of pay-back – I am sure there will be few for you.
I DO know that more likely options are out there – last year I was knocked out for a biopsy on another med issue. The next day? Yeah I hurt from that invasion, but…something was missing? No neuo pain nor tinnitus! I could wiggle my toes, and stretch my legs, back, arms and hands and NOTHING HURT! What to do? Go out and have a walk? I decided no, not in ‘shape’ enough for that, but, just keep stretching, wiggling and FEELING and remembering what it’s like to BE normal! After six years, for 8 hours I was deliciously FREE! But, like life always is? The stuff wore off – durn! [And, some other choice words, not repeatable here]
Soo, I am sending good thoughts that THIS WILL WORK FOR YOU! Enjoy any minutes hours or more of freedom to the fullest! And please, share with us every single yummy moment!

I dont know how I havent read this thread sooner.

Alice…what do I say ? I had to wipe the tears before I started to type. To think there really might be hope ???? After finding out about my insurance this morning, I’ve been contemplating in my head what I’m gonna do. I could find a way to pay for my ivig…but, dammit, I dont want to. I DONT see that it’s helping me. MAYBE it’s making me stay the same but all I really want is to be BETTER.

Your CIDP case is so similiar to mine. The only reason I’m working is b/c I have a desk job. The fatigue is creeping in like a thief in the night and making it super….super hard to get up in the morning.

I’m not a “bad” case…but, like you…the old ladies on the street walk way faster than I do.

I could go to my nuero next week and tell him your story…he’ll tell me not to mess with what we know is working. Well, we dont KNOW…do we ? I know there is no way I can convince him to do anything more than he is. None.
The last time I went for a second opinion was a disaster. I’m thinking that I have a fantastic pain mngt dr that will do anything to help me…I’ve got to talk to him. Maybe he can send me to an immunologist. That makes alot of sense.

I’m not having a good day…but, I’ve just got to say…I am SO PROUD OF YOU !

Stacey

Alice – I am wishing you a great day tomorrow … one that harvests ALL the stem cells you need in one day! Ken is correct – you are the darling of this forum and a trail blazer for us all!!!!!!! I admire and respect you (and Sophie) more each day. I also want to thank you for open, honest dialog on this forum. Your posts/threads are exactly the reason I joined. I needed a place to go to learn and grow in knowledge of CIDP and you (and many others) have helped me immeasurably. After all, ultimately, I am responsible for my medical decisions and I need to be informed and educated to make them. As an example, because of this post, I now have a clearer picture of chemo as an option. Thank you.

Ken – you are also in my prayers. Hang in there and keep fighting – it just feels as if many diseases are close to having cures and this forum NEEDS you (I learn so much from you!).

Way to go Alice..keep your head up..

Stacey: I say go for it..check it out and see what they say. It sounds like this may be a good option for CIDP patients.

Good luck

Otherwise she wouldn’t be going thru what she’s going thru!

She’s been educated well ahead of going into this…tho what side effects SHE might feel are TBD.

CIDP acts on each of us in so many different ways, and treatments work? Or, not. Does anyone have some ‘dice’ to roll? It is just that peculiar odds-wise.

But we aren’t inbred, like some vegetation that feeds the world. Thus, we are each truly INDIVIDUAL. Part of the reason docs don’t ever say: You will get better! It’s more like: We’ll see if [I]this or that works[/I] for you? To be blunt? We are not for the most part? LAB RATS! Nor should we be!

We each are exposed to and live many varied [as well as inherited?]environments with so very many variables that even diagnosis can take years for many. Or worse? Misdiagnoses for more. That latter part scares me truly! WHAT has gone on in the last two to three generations that is causing an increase in this nastiness? I for one, truly wish from all my being that no one suffer what we have to!

Alice I have faith that anything this process throws your way will be LOTS easier than your onset and constant pain…as I’d written earlier? Even a few hours of ‘freedom’ are precious. Memorize them, and learn from them, as we tend to forget with the constant ‘constants’.

What I call ‘bone aches’ are likely what you are experiencing…. I got them from post-cancer therapies…Arimidex, Femara and others….and NOT FUN at all! Well documented when one plays with the immune systems. OR the possible autonomic and vascular systems not working their best. Caused either by your current treatments or by your immune system essentially ‘protesting’ this interference. Put it to others as “It’s like my Mac Crashing. Program isn’t doing things right!” To me? That is what happens with a CIDP immune system. Simply not working right.
I hope you can prove to be successful with this all with ALL of my heart! But, knowing you? I truly appreciate that you aren’t ‘sugar coating’ the whole thing either. I for one, truly appreciate your honesty and candor about it ALL!
Hugs and keep on keeping on! – homeagain!

Well I had stage 3 breast cancer and the chemo including cxyton 7 yrs ago and I have to say that was a piece of cake compare to this (I believe cidp) I worked most days was able to keep a somewhat normal type of life(I did have horrible sores in my mouth which last about a week and 1/2 and was very tired). Now I can’t walk without a walker need to have people take me to appts. do grocery shopping for me and almost anything else that needs to be done out of the house. I just hate having to ask everyone for help all the time. I would do the chemo in a heart beat if I could just walk again (even with a cane) & drive and be independent again.
Since I started my response in this tread I rec’d a call from the nurse who completed my 5 IVIG treatments on Tues she called to tell me my neuro wants the central pic-line which was just place last Wed pulled. So now I don’t know what is going on I have a call to his office I sure hope he calls today. I have not had any consistant treatment since this all started in April. Had the 5 IVIG treatments in the hospital in May, the beginning of June the steroids 40 mg for a wk 20mg for a wk and off needed to be put back on 40 mg for a wk reduce 2nd wk ect. On steroids was able to take steps without walker or cane but walking like a baby taking 1st steps. Had appt schedule with Dr Lewis 10-28-09 but with my luck I just cancelled it because I thought this new neuro I’m seeing new what he was doing and I could talk to him. My big concern is this pic-line because my veins our shot because my first several chemo treatments were done by iv lines. Sorry for venting just had to get this off my chest.

Alice –

I think I know the answer as to why the school teacher doesn’t want to do the protocol.

FEAR.

I understand it.

Being the mom of a sick kid I have to make the choice to keep her on IVIG (where she is improving & living life normally) or put her through a treatment which could possibly kill her. It was suggested to put Emily on chemo at 4 years old – I declined because on IVIG she can live a normal life & with chemo she’d have to miss school & miss her childhood.

And well…I’ll take having her alive before risking her life. She could decide differently when she’s older though & I would support her decision.

I think the school teacher has decided that she can live her life with CIDP. She’s accepted it. She doesn’t want to risk her life to get better when she can survive with just being ok.

And I can respect that.

You couldn’t live your life with being just ok. And I respect that too.

Happy Harvesting. LOL 🙂

Kelly

I think many posting here are missing a very important point: the level of severity of various people’s CIDP. Also, the fact that some CIDP patients respond very well to IVIG & do lead pretty much normal lives, but then there are those who are refractory to IVIG, PE & even solumedrol (which I found out the hard way that being on steroids for any length of time has to be much worse than chemo for a short time.)

Emily’s mom… I agree with you wholeheartedly, if Emily is doing well on IVIG & living a normal life, then why change things? And ultimately, somewhere down the road she can make that call if she gets to the end of her rope getting monthly IVIG. I raised a son who was born with spina bifida & is now 28. He walked minimally with AFOs & lofstrand crutches when he was young, but has mostly gone to a wheelchair full-time now. If there had been a treatment, any treatment, IVIG, chemo, that would have made his life more manageable, I would have gone for it. But there was nothing.

SurvivorX2… First off, your treatments have been too sporadic for you to judge what to choose at this point. If you have CIDP you should be on regular infusions, did the IVIG bring you back to your old self? Why was the treatment changed to steroids, & why did the doctor reduce the dosage so fast? Did the steroids at full strength bring you back to normal? I can understand why you would say you would want to try chemo, but first I think you need a new doctor!!

I can understand the teacher’s decision & respect it. If she is has CIDP & is able to work teaching (which I found to be a very physically demanding profession myself), then the IVIG must be working well for her. People can get used to a once a month infusion if the rest of their lives is normal. Or some are willing to put up with some residuals for the “known” rather than trying that which is unproven. I can understand that, not sure what I would have done if on IVIG I were still playing tennis, skiing, taking long walks, etc.

This has been an excellent discussion with posts contributed by so many. Not criticizing one another, no one being judgemental, etc. truly some excellent dialogue going on here. I can only hope that within a short period of time we will know much more about this protocol…

There are two ways to use Cytoxan, on its own (as Pam H did) or in preparation for other procedures (as Alice is doing). What Pam H did is similar to the Revimmune procedure that Johns-Hopkins is investigating (and has already applied for patents) for several autoimmune diseases. I found, but have now misplaced, a reference that the risk of dying from the Revimmune procedure is 1 in 200.

As a partial answer to why doctors are reluctant to use Cytoxan, consider that when I told my neurologist the risk of death with Revimmune, he was frankly appalled. Since my risk of dying from CIDP is considerably less than this (my CIDP is well controlled and my abilities suit my life), he refused to consider Revimmune further. I know, though, from other discussions with him, that should I lose control of the disease, anything that might work will be tried, in order of riskiness. Pam H is right, the question is really about how severe the CIDP is and what you need out of life.

MarkEns

I had my husband read this thread last night. I went to bed so I dont know what his thoughts were.

I cried when I read this the other day and more has been added. I cried for many reasons…number one being HOPE.

I dont know if I’ll be a candidate for chemo and or stem cell. Another issue I face is that I cannot miss work. Tho I AM able to work at my desk job…I face the fatigue of the school teacher but I’m not able to nap till dinner. I go home and prepare for the next day. I get up at 5 or 6 am…work till
3, get Connor from school and get all the daily chores done, including dinner. Some nights I cant do dinner but I figure something out. I will sit down on the couch at about 7p and go to sleep around 930.

The last few weeks it’s all catching up to me. I’m late for work almost every day b/c I cant get up. My legs wont move and my body wont get up.
I hit the snooze button for literally an hour and half just so that I can prepare myself and convince myself to get up.

Maybe the job burnout plays into that…but, on the weekends, I can sleep fourteen hours or more and still feel the need to sleep.

I dont want to sleep my life away and I am not one to sit down b/c I’m tired. I have things to do. I still havent learned to give in…and I wont…I know what can happen if I over do….but give in ? No way.

Alice saying that about percentage leftover…hits it right on the money for me.

Thank you for this thread…the depth is incredible.

Stacey

😀 By the way, Alice…
I’ve shared your story and two people have asked me today how it went and if it’s helping. They dont really understand it all…but, more strangers are praying for you than you can possibley know.

This has been a very interesting post and I will be following Alice to see what happens with you. I haven’t posted in a long while and have tried a couple of different treatments with no long term success. Good luck Alice and do keep us posted! Gabrielle

i know i’m just the sister, but we are all in this together, right?
Sandy was diagnosed with CIDP in Aug at 29 and has since turned 30. Since August she has RAPIDLY declined and is completely paralyzed, on a gtube and trach. We have done everything. Ivig, Plasmapheresis, Rituxin + prednisone all the while.

After reading these posts I have to wonder if the previous treatments made her worse? Yet, i know the Drs did what they thought would work and what had worked in other cases that they knew of.

She moved her jaw for the first time since thanksgiving a few days ago. They started her with Cytoxan on Monday. We are hopeful that this will do the trick.

She is a music teacher, piano player and singer. Newlywed ready to start a family.

Loss of hair – it will grow back.
Sterility – they’ll adopt
Stomach – she already feels like crap

We’ve “talked” about all of these things. (we “talk” by speaking through the alphabet and she blinks when we get to the correct letter)

She just wants to join the world again.

I’m so glad I’ve found all of you. I can’t wait for her to be able to sit up and read.

Jenny

Jenny

We are all in this together. I am so glad you found this site. It’s very informational. I am the mom of Ryan. Ryan is now 21 and a college student. He has a very aggressive form of CIDP however, with that said it sounds like your sister’s CIDP is much more aggressive. There was a young lady name Emily who’s story is very similar to your sisters. nothing worked for her either and then she did the cytoxan and she is in remission.
My son Ryan has done IVIG, Plasma Pheresis and high doses of prednisone. he got no benefit from IVIG but plasma pheresis and high doses of prednisone has worked some. But now that he is getting weaned off the prednisone everything he has improved on is going away again. so my thought is it was the prednisone that worked and you can’t stay on that steroid for long. so he will do cytoxan soon.
We are prayng that this puts him into remission. I will be keeping your sister in my prayers also that cytoxan will work for her, plz keep us posted on her recovery and if it works or not. I would really like to know since my son will be doing the same treatment soon. as these treatmetns don’t work for every patient as youhave seen from her past treatments.
But as long as we pray and be positive it will work then I am beleiveing it will work for both of them.
take care and send me a private message if you want.
Rhonda

That Sandy too keeps faith! Mostly in Herself and that she’s not going crazy [tho at times in a hospital it seems like it?] That she is sick and can get better as long as she FIGHTS for it! It’s a long and hard fight, each of us has gone and is going thru it daily, but we have spirit and ‘gumption’! LOTS of IT!
Golly tho? You aren’t ‘just the sister’! I’ve got a ‘sister’ such as you and she’s been my anchor for ages now. We share and cry thru the good things and those not so good. It’s brought us together in a very unique and special way.
Keep telling us Sandy’s story, and update us, please! Also tell Sandy that we are hoping, no expecting that SHE will be able to post her story herself and soon! It’s hard to be alone in your ‘mind’ when you can’t do much at the worst parts of this stuff’s onset. I’m sending you a bit of what strength I can spare to help you all thru this!
Don’t be afraid to ask questions, ever. People here understand and are good at explaining things. Do keep in touch tho?

Thank you, all, for your words of encouragement for Sandy. She was in a lot of pain last night. Didn’t get much sleep. When I went to visit today, she was very tired so I left and let her sleep. I did leave all of the info I received from this org though. I was up very late last night reading 😉

She “said” that she moved her tongue a little. That’s good. But she was SO tired. If she could just speak life would be so less frustrating for her.

My uncle found a computer program that is based on electrodes. I think you connect them to any muscle that is functional. In her case, her jaw is now moving voluntarily. He tried it on himself last night and sent an email!

He’s there right now trying to get it to work. If it does it will be the small (very small) light we’ve been searching for. At least she’ll be able to tell us what she needs and is thinking.

I’ll let you all know how the cytoxan progresses. Tomorrow we have a family meeting with all the Drs to talk about her progress and where we go from here. :confused: I guess we’ll see!
Jen

Hi Alice,
I am so happy for you! I have read so much about you on the forum.
To be honest, I am fascinated by your health history and have read as
many of the older blogs on you that I could find. I felt I could learn
a lot that way.

Alice, how did you know you were ready for Cytoxan? Like you, I
have had no success with IVIG. My Doctor is pushing Rituxan and now
Remicade both with IVIG on me as a treatment plan. I have put things
on hold because something inside tells me these are not good ideas.
I realize that I am continuing to loose ground and need to make a
decision on something.

You are such an inspiration. I posted earlier tonight. How do you
make a decision on what path to go down, especially if your doctors
disagree? Is confusion the norm?

You went down a road and it’s paying off. I am so delighted for
you! Let us know how it goes. Thanks so much for sharing yourself
with all of us!

Sandila