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…
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!
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.
BTW Cytoxan is the same chemotherapy treatment used in breast cancer patients, but we get a higher dosage…
As I stated before, I was given cytoxan for 9 months, once a month after the first 5 loading doses. But it was 3-4 months before I felt that it had arrested my CIDP. Be patient & I hope it will stope the progression of your CIDP permanently. Sorry the Packers game sucked last Sunday, I am a Vikings fan (note that we are neighbor states), & I look forward to Oct 5th Monday night football. Must be nice to be able to get tickets to a footbal game!
About a year ago, you had sent me a reply, what you went through, and the results after going through after the Cytoxin regimen. I actually printed it out, and showed it to my neuro.
Yes–I went throught the exact same things you went through…the solumedrol, 6 months of the IVIG, a year of the plasmaphereses, all to no avail.
Now I am on 2000mg of Cytoxan, (the highest possible dose) monthly. This has been going on now 9 months. They watch my bloodwork constantly, as you know how it can get out of whack on the Cytoxin.
Since the CIDP hit my autonomic system, the doctors watch to see what organ it hits next.
They still can’t tell yet, if the Cytoxin is working. Since the summer is the worst time of the year for me, when the heat dramtically induces flares, and usually every year I end up in the the hospital, they plan on at least the next 6 months to continue on this Cytoxin regemen. One of the areas hit was the phrenal nerves, of which control my diaphram, thus I can only breathe in shallow breaths. My lung capacity is down to 45% because of this. They tell me that this is what is going to do me in–I will get a flu or pneumonia, and not be able breathe. They tell me I am not far off from going on a respirator. (To keep my sanity–yes, I still smoke. I told my doctor that what’s the point in quitting now, since smoking is not what caused this and at least I get satisfaction from it–naughty me…)
But back to the discussion of this thread…my neuro. had mentioned that as an absolute last resort might be a bone marrow transplant. I read Julie’s topic, and found it very interesting, since MS and CIDP is so closely related.
My Rheumatologist, (the doctor who is actually in charge of the Cytoxin administrations), is starting to get nervous about me being on the high doses of the Cytoxin for so long, but yet understands the next 6 months are the worst time of the year for me, with September and October being the hottest months of the year, (I live in Southern California and those two months are when we get the Santa Ana winds in the most).
Thanks for your reply,
I was just wondering what kind of chemo treatment you are currently getting? I came down with a severe case of CIDP in March/April of 2002, & after over 40 IVIG infusions, 17 PP, & weekly solumedrol infusions, it was determined that nothing was working for me to arrest my CIDP, even temporarily. So in Jan of 2003 I was put on 5 cytoxan infusions in 10 days, & then once a month for 8 more months. This did arrest my CIDP, & I saw significant improvement during the following two years. Is this what your doctor is hoping for?
Linda I am not on chemo at this time I meant that when I was on chemo in 2006 for breast cancer losing some of my hair reminded me of that. I have only lost some right now cause of the shingles with chemo I was a bald ball. My sores are getting better and the pain is not as bad. My face looks like a monster still so I do not go out much good thing is Halloween is around the corner and I can save some money on a costume.
I had monthly infusions of cytoxan for 9 months to wipe out my immune system back in 2003. I was premedicated with Zofran so I was never nauseated, but I did lose my hair for about a year & a half total. It did arrest my CIDP; for that I am very grateful. I guess I can’t really answer your question as to if I felt sick, as I had been so sick with my CIDP for most of 2002-2004 that I wouldn’t have noticed. I was a quad in a power chair who slept most of the time anyways. It is almost like I cannot even remember those 3 years; actually I wish I could totally erase them.
But I think you are talking about the chemo drugs that are taken orally, that would be a totally different type of experience.
jethro. i was on cytoxan too. i was given i.v.i.g. for one year and both chemo. and i.v.i.g the next year. i have a VERY POSITIVE attitude. although my body is asleep from the nose down for the rest of my life, i try my damndest to live life to the fullest. we’ll see how parasailing goes next week. if you don’t hear from me after the 18th, you’ll know it didn’t go well. (just kidding) can’t wait to do it. it’s a much needed vacation.
luv to all,