Cytoxan is Amazing!!
AnonymousSeptember 28, 2009 at 7:14 am
greetings all 😉
so… the worst news i can report is that my mac crashed the other day leaving me with access to only a pc. need i elaborate on the misery of that 😉 to make matters worse, sophie’s pc is french, like her– so language, keyboard, etc… all different. i now have a new drive replaced by mac and am feeling an unexpected euphoria usually induced only by illegal drugs… 😉 i was without my mac for about 24 hours– gosh what a grumble bag it made me 😉
moving along. i want to share something with you that continues to amaze me. last monday, a week ago, i was infused with 3,400 mg of cytoxan. 3,400 mg of cytoxan. i have never felt better since i’ve been sick. not only did i not experience any of the usual adverse side effects… i actually felt and feel significantly better! now, this is amazing me (and sophie) because — well for many reasons.
a little background. since i’ve had this cidp, since december 07, i have had numerous unpleasant symptoms, as i know many of you too feel. in my case, i’ll try to summarize them succinctly, if i can. ok, besides the obvious– neuropathy and all that goes with it– pain, numbness, tingling, imbalance, etc., i had a number of other “odd” symptoms over this past 1.5 years: i had lightheadedness followed by a swooshing sound near my ears that led to a radiating pain in my neck and shoulders. at times, the lightheadedness was intense enough that i would nearly faint. also, i had constant GI/stomach issues– constant! another strange symptom i had been living with was a cracking rash that developed at the corners of my mouth. it was painful and bled at times. numerous ointments were tried to no avail– best i could do was keep it from being worse… and there are other things too. weird stuff, like feeling like death warmed over during my menses– something that was never particularly a problem before getting sick. i could go on but i think you get the picture– besides my nerves, i simply did not feel good. i did not feel good from cidp.
since my chemo, i am shocked at how it seemed to whip my body into a better state of being. all the symptoms described above, are GONE. even my neuropathy is better– an example: i can now stand about 1.5 inches on my toes! i can walk longer, etc. my appetite has returned to normal and food has taste again. my aching tummy and inflamed, painful intestines are all at peace. my mouth thing has ended. and i no longer have the lightheadedness with the radiating pain…
this phenomena tells me that we cidp sufferers do not only suffer the measurable pain of our neuropathy– but there is also some secondary process that takes place making us often feel so crappy. and i am fascinated and encouraged by how plainly clear it is that my blast of chemo forced back the cidp process! i certainly did not expect this– i thought it would aggravate my cidp and that i would hopefully enjoy efficacy down the road, after the process was finished and my body began to heal. not the case.
funny thing– sophie and i asked dr. burt what to expect from the chemo in terms of hell. his response was along the lines, “everyone’s different, some people get very sick while others take it like water.” it would seem i’m the latter. i was telling sophie that chemo felt to me like an oasis of water in the middle of a desert… as strange as this may sound, i cannot wait to have the rest of my chemo– i now have 1st hand experience of its potential. sophie likes to describe it this way: my 1st chemo made all my cidp cells sickly and ineffective. she adds, the rest of the chemo will kill them off completely so it has no chance to reemerge– kind of like in cancer treatment when the goal is to kill every single bad cell…
as an ironic aside– the ivig i tried a year ago, a 5 day loading dose, made me miles sicker than chemo… now, i know it helps many people and i’m happy for them. so i don’t devalue ivig, i just know it will never again enter my body. after ivig, i could no longer walk, however badly i was walking to begin with– at least i could… anyway.
so what’s next. as you may remember, i started taking neupogen shots on saturday. 2 shots in my big prednisone belly each morning at 7am sharp (no pun intended). i also began an antibiotic and an antifungal at the same time for precautionary reasons. all in all– no biggie. the last two days i was a bit lower energy, but no pain of any real kind. today, i feel stronger again, perhaps my body has adjusted to the 3 new drugs in my body… wednesday, i go into the hospital to 1st have a central line put in my neck, then direct to the harvest. hopefully it will take only a few hours to get the needed 2 billion stem cells– if i need to come back the next day for more harvesting, that means i have to sleep with the line in my neck— yuck! so we are hoping for a fast harvest 😉 last week, i met with a woman being harvested with the whole apheresis contraption… she was smiling, reading a book and told me it feels like nothing. when i asked her how the line in her neck felt, whether it hurt, etc., she replied, “not at all, they numb you up and it doesn’t hurt at all…” i thanked her for the peace of mind her words and experience gave me. i also told the staff that i too would be willing to let rookie harvesters come in to talk to me…
dats all for now folks 😉
i’d just like to add this: i cannot express enough, the gratitude i feel, for the out pouring of support and encouragement so many of you give me. again, i believe so strongly in the power of positive thought and energy and you all feel like a collective of measurable energy coming my way… thank you.
hugs to all,
p.s. i know i am behind in returning some private messages. please forgive me and know that i took your words in like a good warm soup. sometimes, i just don’t have it in me to reply in kind. but i LOVE receiving your notes and letters, i really do.
September 28, 2009 at 10:59 am
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
AnonymousSeptember 28, 2009 at 4:10 pm
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…
September 28, 2009 at 6:00 pm
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.
AnonymousSeptember 28, 2009 at 6:55 pm
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!
AnonymousSeptember 28, 2009 at 7:53 pm
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! 😀
AnonymousSeptember 28, 2009 at 8:35 pm
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!
September 28, 2009 at 10:53 pm
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!
AnonymousSeptember 28, 2009 at 10:58 pm
hey there all,
firstly, i want to say that i think this current discussion has much value; having open dialogue, about sometimes sensitive matters, conducted with with respect, is immeasurable in terms of growth and knowledge. even when, or especially when, some of us may differ in our ideologies… i can still love and respect another when their ideas differ from mine. and let’s face it– all we are talking about here is that: ideas, ideology… what makes the topic interesting is the banter we can have, where it leads us, to which open doors, etc., not because i, or hopefully anyone else, holds an agenda, however consciously, to change the minds of others.
so, having said my disclaimer– let us continue, shall we?
certainly i haven’t even made it half way through this protocol yet and have no legitimacy to stand up on a podium and dictate how it was or even whether it “worked..” mostly i have wanted to share it along the way and enjoy your support throughout.
but i have to admit something i have felt for a longtime regarding the forum, our special place. as i explain, please know this– i do feel a fraternal kind of bond with you all as a collective– and some of you have even become special to me. so i say this not to antagonize, but to be honest about what i have felt.
resignation and complacency come to mind. now i am no fan of how neurology contends with cidp, this is clear. i rather like that i am getting treated by an immunologist instead… the concept alone, of approaching this illness from an immunological vantage seems so plainly logical to me. neurology has a bag of tricks for us– all designed to keep the disease at bay. that concept has never sat well with me. never. and any chance at medical creativity is thwarted by medical conservatism for a variety of self-serving reasons (another topic perhaps). but i will go forward with this as one of my premises. there is an impression among neurologists that, based on what they’ve learned, various courses of treatment are to commence with the hopes of getting the patient ‘the best they can be.’ so this person does ivig and x, and that person does prednisone and y, etc. NONE of the x, y and z’s are good for us, nor do they, in most cases, make us feel well. cidp reality check– remission is nearly non existent. everybody makes their own decisions and choices and that’s their prerogative, by all means–
but consider the case of pam h. she has been in a sustained remission for 7 odd years, no meds, no docs. had she had her chemo earlier on in her illness, perhaps she would no longer have any sign of the disease; instead she has lifelong disability from permanent axonal damage–shame. i say perhaps, but i really mean: likely. and then there is emily– also in remission from chemo. jan b got a double whammy when she had to deal with breast cancer along with her cidp. strange thing happened– the chemo took care of both problems. scientific evidence? no, not from these few wonderful examples. but if you delve into the statistics both here and abroad, chemotherapy, in high dosages, is curing cidp. some countries even use the word “cure.”
@homeagain, my friend… you are one of those special ones and i have enjoyed your continued support. thank you. you wrote, “As for trying chemo? Don’t you have to admit [even a teeny bit?] that it sounds drastic?” i do understand your question, and i’m glad you asked– since that is the 1st thing that comes out of neurologist’s mouths, which subsequently influences patients, as few professions can. “the doctor’s always right” concept along with “listen to your doctor,” is alive and well, despite patient advocacy efforts. having said that, keep in mind that every time a big new treatment comes along, it’s considered “drastic.” from heart transplants to bone marrow transplants for cancer, each time medicine introduces something new and seemingly “drastic,” there exists resistance in all parties. what concerns me the most, and is why i have used the word complacency and resignation, is that it’s usually NOT the patients themselves that make resistance– they, like me, scream from the roof tops for it. a classic example of this was during the beginning years of the AIDS crisis. pharmaceuticals, insurers and the FDA made new treatments unavailable to people who had very little time left. and they fought, they fought like hell– and they won!
which reminds me of a disappointment i felt during the many months of my campaigning for health care coverage. i was able to get the attention of the media, etc. this sore spot has healed, but i did feel let down that this forum, the one consolidated group of people that share my illness and had everything to gain from the publicity, independent of me, but did pretty much nothing to help– i refer to letter writing in particular. just one did. my feelings weren’t hurt– i was more in disbelief… and i place what happened in the complacency category described above.
@pam– you’re my hero. you are the real pioneer here. and in regards to being harshly shot down because the topic caused some an itch– no one should be shooting anyone down here. it’s just not the point. you have an excellent and worthwhile story to share and new comers, of which there are sadly many lately, can benefit from knowing that IVIG isn’t the miracle drug it’s made out to be, that there are other options, and that you have been cured 😉
pardon such a long post, but like i mentioned, chemo makes me feel good 😉
p.s. as always, i appreciate your support, thoughts and positive energy!
AnonymousSeptember 28, 2009 at 11:11 pm
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!
AnonymousSeptember 28, 2009 at 11:17 pm
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…
AnonymousSeptember 28, 2009 at 11:31 pm
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.”
AnonymousSeptember 29, 2009 at 1:39 am
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
AnonymousSeptember 29, 2009 at 7:29 am
thanks rhonda for your kind words… i’d hug you if i could. good luck and i might suggest that you make personal contact with some of our members who have done a high dose protocol of chemo without stem cells– like pam h, emily and perhaps a few others. it might be helpful to have some idea of what their exact treatments were– i know in the case of pam, she has written on her course of treatment, with dosages, etc. more than once. part of patient advocacy– try to know as much as possible about what you will discuss before you get to your probably very short appointment. medical talk is often greek to us 😉 so the more you can converse about, the better. plus, i think it shows the doctor your determination and seriousness. my 1st neuro blew me off every time i tried talking about it… i did this stem cell thing on my own, or i should say– directly with other doctors, those at northwestern. i bypassed my conservative, naysayer neuro, and eventually left him. we were ideologically too polorarized. i actually had a frank and respectful discussion with him– told him the direction i planned to take, hoped for his support but was heading there anyway… you see, he thought i was doing great… i did not! very old ladies walking down the street made better time than me… i used to always point them out to soph– i’d say, “hey look at her, she’s doing better than me.” 😉
Sandila– i don’t know the answer to your question. i think it is not chemo and that it is something used in conjunction with chemo in some cases– but that’s from a 5 second search i did before answering you. however, we have a wonderful member by the name of allaug. she lives in scandinavia and has an excellent success story using rituxan. she is in a sustained remission and in her case, it was the only thing that worked. i don’t think she ever went the chemo route. if you have an interest in rituxan, i would review her posts, look specifically for one she posted when she first signed on where she tells of her long journey with cidp and eventual remission with rituxan. also, she’s a lovely person and am sure would be open to talking with you about it. her english is better than most of ours :rolleyes:
moving along. i have 2 days left of neupogen shots– today and tomorrow. and thursday is a big day for me. at 7am i give myself my shots and then head over to the hospital for pic line placement and harvesting… i’m 99% sure i can have my mac with me– if so, i’ll post– or sophie will…
i have to say, while i have found neupogen pretty easy to tolerate, i did begin experiencing some of the predicted bone pain. nothing special, it feels like my back needs a chiropractic adjustment 😉 it will be nice to pass this part of the process– then i can focus the final bang 😉
yesterday i had routine labs– then sophie and i took a taxi to a highly reviewed italian restaurant where we had a wonderful lunch. i even had one small glass of wine 😎 then we walked about 30 minutes, returned to the hotel and i did my daily stair walk– i start at the 17th floor and walked down to the 6th floor where we reside. each floor has 2 sets of stairs so they are doubles… going down stairs works the top of the thigh muscles in amazing ways… i call it, “physical therapy alice style.” 😉
warmth and well wishes to all,
AnonymousSeptember 29, 2009 at 10:59 am
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.
AnonymousSeptember 29, 2009 at 11:14 am
you wrote, “One side effect of cytoxin is lose of hair, sterility, problems with your stomach, problems with yoru bladder. .”
-hair loss is temporary
-sterility is a possible side effect
-stomach problems are temporary, if at all– and they have meds for it
-they use Mesna to protect the bladder
ryan, i’m afraid to say, sounds very ill to me. i was as you describe him, and worse. only prednisone improved things… to a point, and at a cost.
in my 1.5 years of cidp, i have axonal damage– in fact, i had it quite a while back… ryan is likely to have it too if they can’t back the disease process off.
call me if you want to talk– i have a sense that ryan and i present our cidp similarly… 415-279-0237
or contact me through skype if you have it: ad0237
AnonymousSeptember 29, 2009 at 12:07 pm
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.
AnonymousSeptember 30, 2009 at 1:34 am
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!
AnonymousSeptember 30, 2009 at 8:56 am
my dear friend and member of this forum, linda martin, happens to be one of the lucky ones who has an excellent neuro and a mild case of cidp that is being controlled pretty well with ivig. but, her doctor is aware and interested in the protocol i am in– and has told linda that should it be necessary, he would support her going that route. her doctor, i think his name is dr. blum, describes my protocol as a caveman procedure. but he also doesn’t devalue it… no doubt it’s harsh, but if they are successful in their goal, they will have destroyed my immune system totally, including those nasty little cidp cells, and then reinfuse me with my own, cleansed stem cells to help rebuild it– this time “tolerant to self,” to quote dr. burt. in essence, you must be willing to walk to the brink of death along side the death of your immune system– and then begin the process, with the help of stem cells, to regenerate. strangely, i can hardly wait for my big chemo regimen– it feels like the fluid that will give me a chance at life without disability, pain and medicines…
moving right along 😉
so i am on day 5 of neupogen shots. yeah, ok, it kind of hurts. it’s bearable but annoying. to me, if feels like a strange throbbing/radiating all over back pain… with the help of a little extra vicodin, i’m managing. besides, tomorrow is the last day–hurray! i get harvested tomorrow… and my sense is that i will begin to feel better afterwards, as the neupogen works its way out of my system.
i’ve been lying low… the neupogen, antibiotics and anti fungal meds have drained me a bit. nothing major… just not feeling like doing much. my mood is positive and encouraged–
thanks everyone, for staying connected to me through this journey–
AnonymousSeptember 30, 2009 at 1:55 pm
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 !
AnonymousSeptember 30, 2009 at 11:14 pm
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!).
AnonymousOctober 1, 2009 at 12:24 am
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!
AnonymousOctober 1, 2009 at 5:23 am
gosh, i wish i could find a sugar coated pill that would make it all better…
i have told sophie for months now that i am prepared for this treatment, that i had good training… what i mean by that is, as i’m sure this is true for so many of you, i have already been through so much pain that i ask rhetorically, “how bad can this be?” i do believe that stored in my body’s cells, is a memory or blue print of the worst pain i’ve ever felt– and so far, all the medical things i’ve gone through since beginning this protocol are child’s play compared to the agony i was in before prednisone could back some of the cidp off. simply, i’ve been pain trained.
thanks to a cavalier and ultra conservative neurologist, i got to watch, in horror, just where this disease would take me… unbearable pain, near paralysis, incontinence, etc… now probably, this extreme state could have been avoided, if i had been treated sooner– but there is part of me that is glad i got to experience the depths of hell– it has served to only deepened my resolve to do all that is humanly possible to rid myself of this insidious disease.
i had a long talk with one of the neurologists at northwestern back in march when i came out here for evaluation to determine eligibility. great guy. he spoke highly of the program run by dr. burt, chief of immunotherapy at NW. he spoke highly of the success rates this protocol is having on not just cidp, but numerous autoimmune illnesses. he explained, in terms that made sense, why the few that didn’t sustain remissions occurred. he also spoke of a female patient of his, a school teacher– he said she is on a combination of regular treatments for cidp but is only doing just, “ok.” he expressed wonderment as to why she chooses not to enter the protocol… apparently she is eligible but simply chooses to “manage” or “subsist” with the conservative approach…
i don’t judge her. i just don’t understand it. hence, i’m curious.
now about today! yikes… today is the big stem cell harvest day. i’ll take my last neupogen shots this morning, proceed to the lab for blood work, then to have my picc line placed in my neck, and finally to the harvesting center. reports from others all say its a piece of cake. nothing is supposed to hurt… feel weird–yes, but not hurt 😉 sometimes i’m not sure which is worse, pain or weirdness… so i do have some jitters but am pretty essentially calm.
warmth to all,
AnonymousOctober 1, 2009 at 2:33 pm
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.
AnonymousOctober 1, 2009 at 9:06 pm
I think I know the answer as to why the school teacher doesn’t want to do the protocol.
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 🙂
AnonymousOctober 1, 2009 at 11:29 pm
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…
AnonymousOctober 2, 2009 at 1:34 am
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.
AnonymousOctober 2, 2009 at 4:42 am
i think this discussion has been extremely valuable. without out a doubt, we all get to make our own hard decisions about our own healthcare decisions. it boils down to choice and risk.
the fact of the matter, and i’ve mentioned this before, is that i am not a cidp lost cause– meaning, something does work for me, somewhat. i am sure that if i stayed on my prednisone course, very low dose, i would eventually be able to hold an office job… it was bigger than that for me– i want(ed) a cure, if possible. i don’t want the meds and the reasonable percentage of alice leftover. that, was my choice and i do it with zeal. others, including the school teacher that makes it to work, is exhausted afterwards, naps till dinner only to sleep fitfully because of the effects of her illness and meds… they have the right to choose semi-functional, rather than risk an extreme procedure. i do get it.
and yes, level of severity plays a big role. no question.
i just appreciate the openness and willingness to express views that are all important. all of the new folks joining us deserve to hear it all with respect. i feel we did that really well this time around. thanks to everyone for making this a meaningful dialogue.
…i’m sure this conversation will be revisiting us with more frequency– and i look forward to it.
AnonymousOctober 2, 2009 at 9:57 am
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.
AnonymousJanuary 14, 2010 at 12:27 am
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.
AnonymousJanuary 14, 2010 at 11:28 am
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.
AnonymousJanuary 14, 2010 at 9:12 pm
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?
AnonymousJanuary 14, 2010 at 9:25 pm
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!
AnonymousJanuary 17, 2010 at 12:20 am
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!
You must be logged in to reply to this topic.