I am going to Northwestern for chemo/stem cell…

i hear you dawn…
but its not quite like that–
for instance, these are autologous stem cells, meaning my own– hence, no rejection worries. secondly, in order to qualify for the protocol, you only need to have tried and failed two regular therapies. in my case, ivig made me worse and cyclosporine nearly killed me… steroids work, but you know the cost of that exchange– like a deal with the devil 😉

many egos, i mean neurologists, tend to feel this course of therapy to be too aggressive– since they consider cidp a “treatable disease.” i wonder if they would feel that way if they had the disease. also, medical conservatism in general plays a part– fear of risks, liability, and of course, once again, ego.

check out some of the links i have posted on my website under ‘links” page. it will give you, or anyone interested, a better idea of the treatment this particular hospital is doing. [url]www.alicedicroce.com[/url]

enjoying the dialog 😉

best,
alice

yes… my blog will be the best place to keep up with things– when i’m too sick to write, my partner sophie will fill in… for the sake of those interested in the future, i will try to document, both with words and photos, as much as i can along the way.

in fact, and i guess this is obvious– always feel free to post and pass along my website for others that come along and may be interested in the protocol.

i wish it was beginning tomorrow.
alice

to: kelly– i am not sure about this. i know they do “something” with my stem cells before they are re-infused back into me… but i honestly don’t know more than that…

to: rhonda and ryan– wow, he’s way too young, i am so sorry. hell, we are all too young for this crap 😉 i will be happy to share all i go through– i hope for me and for others, that this thing works. it has worked for many, some at northwestern, and many more around the world. it seems a big key to success/remission is to do it sooner rather than later… i’ve had CIDP for 1.5 years now and the only drug that has worked for me is prednisone– which is both wonderful and insidiously evil, as we all know. problem is– whenever i carefully ween off of it, my CIDP comes back, simply. i say, NO! i’m done… this is no life, not for me anyway. and also– i have noticed how the pain and immobility was threatening to peel away my inner strength and resolve– almost like the disease gets comfortable, normal– like an old shoe. that realization frightened me as i do not want to be my illness. if ryan would like to talk with me, i would be happy to share with him what i am doing and what i understand about it… let me know.

to: pam– i remember talking with you before. in essence, you did the same thing i will do, minus the stem cell portion. and your story is an inspiration– i’m only sorry it wasn’t done sooner– as then you would have less impairment now. something i hope to avoid. the truth is– dealing with the progression of CIDP is time sensitive… apparently for more that one reason– firstly, to prevent permanent damage and also because when the disease is with us longer, it seems to take hold and is more resistant to remission, etc. i think your story is an important one and that you continue to share it…

to: jersey mike– thank you mike, i appreciate it. frankly, i think its the best shot on the planet at this moment in time. and yes, i looked into many other countries– be well.

thanks to limekat, kaza and tim– many warm hugs.

i’m very sorry your husband (and you) are suffering from cidp, or whatever the final diagnosis will be… it is a very challenging illness, to say the least. i find it threatens your core fabric of strength and stamina. something that, as i mentioned before, frightened me because i never wanted to get too comfortable with it– like an annoying friend that never leaves… or simply an old shoe, that over time, has broken in, warn down and fits perfectly… too perfectly.

i feel so resolute in my decision about seeking this aggressive treatment in chicago. oh, it will be hard, undoubtedly– i feel my courage building as the date grows near… i try to think of the many things about it that scare me– so many things– trying to get more comfortable with what i’ll face from the line in my neck to the results of high dose chemo, etc. strangely, i’m both terrified and excited… the excitement comes from knowing that i am doing the absolute most to rid myself of this old shoe. i feel violently aligned with the chemo– that it will KILL the cidp and i will endure its journey, and so on… i’ll survive it– and nothing would make me happier than to be able to post my remission, for me and for everyone who suffers from this **** sandwich.

as with anyone, always feel free to contact me. and i send you and your husband my best thoughts.
alice

p.s. thanks for the good labor day wishes 😉

hey natalie,

i understand rob. its the worlds slowest disease– nothing about it is quick. i use to say to my neuro– i wish it were just a tumor that we can remove or obliterate– but this condition isn’t like that, obviously… it just goes on and on… it can insidiously occupy our whole being– this is where i think it important to bark back…

i think the best way to keep in touch with me, and at times, my partner– would be either by commenting on my blog entries or directly emailing me at [email]alicedicroce@mac.com[/email]. my website has my email information also. the medical staff doesn’t want anything in the room, like cards and flowers because they “attract dust” and flowers and plants have organisms which could be dangerous to me once my immune system is down… so i thank you– but would encourage electronic communication, rather than paper…

fierce, yes. but also frightened. it reminds my of my job as a police officer– having to contend with situations that are scary and dangerous, doing it professionally and strongly, and then, when it’s over, allowing my body to process the fear that i back-burnered in order to accomplish my task. i have no idea how i’ll have the strength to face this– but know that i will, simply.

my very best to you and rob… i hope you do stay in touch.
alice

thank you shirley and jdunk–
my partner and i will do our best to document as much as possible so that people after me will benefit… we’ll see how it goes as i’m sure at times i’ll feel too sick to…X

we are planning to do some videos and still photos– but the editing and uploading, etc., will most likely be done afterwards… certainly we will be writing and keeping folks updated along the way.

again, thanks for your well wishes.
alice

what a sweet post– thank you.

funny thing, i don’t feel like a big ‘ol trailblazer– 🙁
so many others with cidp and other autoimmune diseases have been doing this around the world, and even right here in the US. true, northwestern’s trial for cidp makes it kind of a first in the US– but if we assume that most autoimmune diseases share commonality in terms of how they function (e.g. immune system wrongly attacks some part of the body), then i think we can look at this procedure as relatively commonplace these days. it frustrates me how overly cautious our health system works in terms of approving treatments– the idea that this illness is “treatable,” urks me beyond words… the drugs available to us are miserable… and for many of us, terribly inadequate. in my case, ivig made me worse, cyclosporine made me feel on death’s door, and prednisone helps… but wow, at a big cost…

i’d like to gather these neuros, with their egos and plaid wool blazers– like mice in a laboratory, and allow them to live with what we live with for 6 months… then i’d like to ask them if they will nonchalantly tell their cidp patients, “it’s treatable.” it’s a big poop sandwich, as we all know well.

my opinion– it’s not treatable. i don’t accept what medicine has to offer in terms of treatment… so… i’m a police officer, and will use a police analogy to treatment for cidp– allow me to describe our “use of force” policy or hierarchy… essentially we have an escalating/de-escalating use of force structure that is listed as follows:
1) verbal commands
2) physical control
3) pepper spray
4) carotid restraint
5) baton
6) firearm

it is designed as a guide– with the idea being, one should always use the least force necessary and reasonable to enforce the law. but wait, it gets tricky when we are confronted with dangers that require us to skip steps and choose which level of force is both the least and will be effective… for example– you hear shots fired in front of a bank and then see a man exiting the bank with a gun in his hand… it’s not hard to imagine that a lot of steps or levels of force will and should be skipped in this scenario.

the analogy with the frontline cidp treatments and when you choose to skip ahead in terms of force against cidp, is similar. now, as an officer, if you choose too low and say, try to wrangle with a suspect (level #2) when he is armed, you likely will be harmed– just as we are harmed by immune-suppression drugs, etc. my body has certainly been weakened by the meds i have taken… i’ve got my firearm out now:cool: and i’m taking aim… i’m choosing deadly force against the suspect: cidp.

pardon my rant–
prednisone is like a motor that runs inside of me 24/7…
i can’t wait for chicago.

hugs to all,
alice

so true… nerds :rolleyes:

hahahaha…

yes, it would be a challenge to trade places with the nerdy neuros (nn’s) 😉

but even more than the neuros… i would like to add the private insurance “death panels” to the 6 month laboratory experiment– they would have to live with cidp for 6 months before they deny coverage… we could set up the neuros in one barracks and the insurers in another– they can dine together in the common area where bingo will commence following their salisbury steak and mashed potatoes. on the wall in the dining area will be a placard that reads, “CIDP IS TREATABLE.”

my guess is the insurers will be dressed better than the neuros, what do you think?
😮