November 28, 2010 at 2:45 pm

Michelle, I forgot that I wanted to suggest that you contact Paula Gozdziak, even though you are experiencing improvement on IVig. I think they are loosening their restrictions on participation. For example, I know that you only have had to fail 2 treatments now (as opposed to 3). It doesn’t hurt to say that improvement on IVig is slow and by no means are you assured that you will experience full recovery on IVig. Just a thought.



November 28, 2010 at 1:17 pm

[FONT=”Microsoft Sans Serif”]well, they have done 15 cidp thus far but many, many multiple sclerosis and other autoimmune disorders from RA, scleroderma, lupus, diabetes 1, etc…

they have done well over 300 now total. the mortality rate is less than 1% and if you listen to how and why these 2 people died early on in the trial, the percentage should be even lower now– one person died because they dropped out midstream treatment and did not continue to follow up after their immune system had been weakened(!) and number two died from an infection from an already existent fungal ball in their sinus tract. since that latter death, they do a ct scan of the sinus region looking for such a condition prior to depleting the immune system.

as far as relapse is concerned– it would be more accurate to call and ask them– they will tell you– but, i can tell you this: as far as the cidp folks, no one has relapsed and the 1st one to go through the treatment was jennifer o. i have spoken to her and she is so far beyond cidp… she lives a full life with her husband and children. she is till enjoying the cure this treatment has given her– some 5 years later…? there are apparently two folks done very early on just after jennifer that had “less” improvement than all the rest of us– and the doctors believe that at least two factors are to blame for this: one person had had the disease for numerous years and the other was very up in age. i don’t know anything more specific than that. i know they were very early on and that dr. burt and his staff have better honed in on what meds and how much are used.

regarding the MS folks, the trial’s largest group, they have a success rate that is staggering! again, some of they’re choices in subjects early on have undoubtedly thrown off their overall statistics– for example, they used to accept both progressive and relapse-remitting forms of MS. eventually, it became clear to them that only one form of MS is treatable by transplant (right now i can’t recall which one). as a result, all who underwent transplant that were in the non-treatable category threw off the overall stats, not to mention what a bummer it was for them… BUT, even with those people factored in, i believe their, they call it “sustained remission,” rate is in the high 70-% range! and what is important about looking at the MS folks is the fact that they have done so many more than for cidp– simply because there are so many more of them than us…

i hope that answers some of your questions michelle. like i said, you can ask the very pointed and specific questions directly to them, they don’t mind answering them as they appreciate the fact that choosing to be treated is quite a big deal. so if my answers felt too vague, do redirect them to paula gozdziak, the nurse coordinator for cidp. she is very nice and easy to converse with.

as far as side effects goes– they are mostly pretty time-limited. all the stuff both sharon and i wrote about– dry skin, temporary loss of hair, fatigue, etc. the longterm stuff might be infertility/menopause for women, and infertility/andropause for men. your age really comes into play here. i was already in my 40’s when i had the treatment so i went straight into menopause. i am in touch with about half the folks that went through the protocol and i know that one young gal, early 20’s, told me that her periods were off for about a year post transplant but seem to have stabilized since. in my case, my ovaries immediately shutdown– i began menopause while still in the hospital!

that’s about it. lot’s of folks that have not read or properly understood what they have read, like to contribute to this topic in various ways. for example, this is an autologous stem cell transplant, not an allogenic one. big words that mean either your own stem cells or donor cells… these are YOUR OWN stem cells, taken right out of your own body before they bring down your immune system with chemo. hence, there is no issue with rejection, graft vs host disease (gvhd), anti-rejection drugs, etc….! your body is more than happy to receive these cells as they belong in your body, period. another misnomer both doctors and regular folk like to promote is the issue of mortality– i have read on this very forum people quoting statistics in the range of 20-25% mortality, or saying that “their neurologist says its very dangerous.” my believe is that just like with my neuro and many others i have seen make this mistake– they are assuming that this treatment is myeloablative and aggressive, just like they have heard about from an oncology class they took in their 2nd year of medical school– the one for blood and lymphatic cancers… there are places in the world that are doing this treatment on an out-patient basis! claims of 20-some odd % mortality just isn’t so michelle. so just be careful to get your info from those who really know what they are talking about– compel your neuro to speak directly with dr. burt on the phone– he will talk to your doctor, he’s good that way. and at the end of the day, if you still don’t have your neuro’s support, make your own decision and drop him/her like a hot potato and run, don’t walk to chicago.

many of us are here to talk with should you choose to. i am always available and i can put you in touch with 4-5 others who will also talk with you. i think there are just 3 of us actively on this forum: me, sharon (anastasia52) and rossana (imfan?).

additionally, i can put you in touch with: jim (8 mo), tannia (1.5 yr), lynn (1.75 yr), bobby (8 mo) and jennifer o. at 5 years will still field a call or two…

write me if you would like to be in touch directly michelle: [email]alicedicroce@mac.com[/email]
that goes for anyone– write me if you want to talk–