I am going to Northwestern for chemo/stem cell…

    • Anonymous
      August 17, 2009 at 11:08 am

      dawn, cheryl– thanks for your well wishes, i appreciate it.

      dear dawn, i don’t agree that this treatment is a last ditch effort kind of thing…
      i think that’s where we and some others may differ in our approaches and ideologies.

      although northwestern has only done 7 or 8, and i’ve spoken with 3– and 2 of the participants didn’t gain remission– they did, however, improve in neurologic function. but many with similar illness’ provide much better statistics — like with MS, etc. additionally, this treatment has been done for years in other countries and although i don’t have a global statistic for remissions, the odds were highly favorable… my opinion: it works more than it doesn’t, by far.

      i don’t want to live my life on immune-suppression drugs to keep this disease at bay. i feel this is accepting a low quality of life… especially for someone as young-ish as i– i’m now 43.

      you see, the truth is, i have improved significantly over these last 6 months. i can walk unassisted, feeling has returned, i have a few reflexes now– and i simply am healthier. BUT, every time i try to get off the steroids, i relapse… this treatment is a no-brainer for me even though i know i could live my life on low dose steroids and simply “sustain.” i want more than to sustain.

      hence, i’ll put myself through hell in hopes to live, thrive, jump and play again…

      please know that i mean you, or anyone else, no disrespect at all– i only am expressing friendly disagreement and believe the dialog is useful for all to read–agree? i hope so 😉

      warm hugs,

    • August 17, 2009 at 11:36 am

      Of course I agree w/you that all dialogue is helpful and I don’t want to disscourage you!!! I was just saying that at the symposium it was said that stem cell was an option if all other options have been exhausted with no result. It was made to seem as though canidacy was based on the exploration of all other options being exhausted. I have NO experience in this matter and was just relaying what was said. They also mentioned that immunosuppres. drugs would have to be taken to fight off rejection of the stemcells/ I know that this is a worry I have for my older son should he need cornea transplants. Are steroids the only treatment you have tried? Would ivig be a consideration for you?

      On a happier note, I am so glad your parents can help you financially!! Wishing you the best. Please keep us posted!!! Maybe we could visit you, as we are only a 1/2 hour away.
      Dawn Kevies mom

    • August 17, 2009 at 1:36 pm

      Hi Alice,
      My Prayers and Best Wishes! Each and every stem cell transplant will lead the way for the rest of us.
      God Bless you for your brave campaign which worked!

    • Anonymous
      August 17, 2009 at 2:25 pm

      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 😉


    • Anonymous
      August 17, 2009 at 3:48 pm

      Yea Alice!
      Finally… you’ve been in our prayers. Keep up the good fight and stay strong.
      I ‘m probably right behind you so we’ll be checking your blog. Hopefully Health Insurance will change for the better one day in the mean time please “Take Care of you.”



    • Anonymous
      August 17, 2009 at 4:00 pm

      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.

    • Anonymous
      August 17, 2009 at 6:55 pm

      Hi Alice – I have a question, if you don’t mind. Hopefully you’ll know the answer.

      I was reading that with autologous stem cell transplants you have a higher risk of relapse, it was talking about cancer but I’m assuming it applies to autoimmune diseases as well. The information said to prevent this often times the blood retrieved from you is treated before putting it back in, it’s called purging. I’m wondering what your blood will be treated with, if anything, before the transplant?

      Apparently there are studies going on to see if purging is really helpful or not.

      I find the subject very interesting.

      Good luck & best wishes!

    • Anonymous
      August 17, 2009 at 8:38 pm

      good luck I will be keeping track of your progress, as my 20 year old son Ryan has taken an interest in the stem cell transplant treatment. He has a very aggressive form of CIDP and has spent the last 9 months going through hell. finally, steroids and plasma pheresis are providing him with some improvement but the test will be when its time to go to a lower dose or go off it.
      He too feels too young to have to deal with all of this for the rest of his life. He of course will but we are praying for a cure someday. we are praying for remission.
      I need to do more reading on the subject but it is very interesting. I agree the insurance compainies need to realize there are some treatments that need to be approved if there is a illness that warrrants the treatment. If they were sick or someone they loved were sick more would be done. But the truth is they (govt or ins people) will never understand unless they live it.
      Good luck
      Rhonda & Ryan

    • Anonymous
      August 17, 2009 at 11:17 pm

      [SIZE=”4″]Good Luck Alice. For all our sakes, I hope it works![/SIZE]

    • Anonymous
      August 18, 2009 at 12:38 am

      I agree with you 100% Alice, well said! Why should we have to “settle” for a lesser quality of life if there is another option available? When I underwent my cytoxan protocol back in 2003, only 4 others between the Mayo Clinic & the U of MN had previously undergone this procedure. Essentially, chemo was given in extremely high doses to me for 5 days at the U of MN, & then once a month for 8 more months; or until my immune system was basically wiped out. Looking back, it is a miracle that I didn’t get sick at all during this time. My son, who works at our local clinic, was living with us at the time…

      But IVIG did not work for me, nor did PE or immunosuppressants. Solumedrol only kept me out of the nursing home, but still unable to walk or use my hands. At least now I can walk & lead a fairly normal life. But I hope you make a complete recovery. I guess I had too much axonal damage for that, but I am still happy with my results. The best part is not having needed any treatments at all for 5 years now. Best of luck to you!

    • Anonymous
      August 18, 2009 at 2:26 am

      I wish you the best. I live my life on the 6 monthly IVIG infusion schedule afraid to travel cause of relapse. My disease was advanced, extreme fatigue and the nerve pain off the charts.My only option at this point is the IVIG. I’d love to be free from the infusions.
      Let us know how it goes.

    • Anonymous
      August 18, 2009 at 3:37 am

      Wishing you all the best Alice – I’ll be sending positive thoughts across the ocean 🙂

    • Anonymous
      August 18, 2009 at 6:34 am

      Good Luck Alice!

      You are on the forefront of treatment that may be more common for those
      of us where treatments don’t work. you are a brave woman.
      All the best.


    • Anonymous
      August 18, 2009 at 10:16 am

      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.

    • Anonymous
      August 19, 2009 at 5:54 am

      I am a new poster (this is my first one). We think that my husband has CIDP. I will post separately about all that at some point. The cool thing is…in an odd coincidence, on September 8th, we will go see a neurologist in Braintree, MA, (my husband’s 7th specialist) to see if he actually DOES have CIDP. I will be sure to send some prayers your way, Alice, as I am also going to praying that day–oddly enough–that Rob DOES have this scary (to me) disease. It’s been 2 years of decline and pain and searching for him. You are brave, and an example to all of us. God bless and try to have a good Labor Day (slight joke).

    • Anonymous
      August 19, 2009 at 9:07 am

      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.

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

    • Anonymous
      August 20, 2009 at 7:02 am

      Alice, you sound…fierce…to me. I mean that as a compliment. You will need this resolve to get you through the rough spots. Will there be any way for us to get our good wishes to you while you are hospitalized? Perhaps somewhere where we may send cards?

      And thank you so much for your good wishes.
      I will share your ‘shoe’ analogy with Rob–he was up all night and when he wandered back to bed at 4 am, we talked for a while and he told me, “I’m bored with this disease. I like to learn new things, but the numbness and pain and tingling and poor balance and all the other crap are all too familiar now–I want a new disease.”
      Funny outlook, but I think I might understand in light of your remarks.

      Best, Natalie

    • Anonymous
      August 20, 2009 at 9:35 am

      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.

    • Anonymous
      August 20, 2009 at 11:31 am

      Sending you best wishes and prayers that your stem cell transplant is a success.
      God bless you and good luck, may your rough times ease up soon.


    • Anonymous
      August 21, 2009 at 3:43 am

      Best wishes for a speedy recovery!
      Please keep us updated 🙂

    • Anonymous
      August 21, 2009 at 9:50 am

      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.

    • Anonymous
      August 21, 2009 at 10:58 pm

      Hi Alice,

      You will be in my thoughts and prayers over the next few months! I am excited and nervous for you at the same time. I was dx with GBS and later CIDP in the fall of 2003. With every tx I tried and failed (IVIG, PP, oral and IV steroids) , it pushed me closer and closer to the stem cell transplant idea. After becoming a full quadrapalegic dependent upon a feeding tube and ventilator to survive I was put on a 6 month regimen of Cytoxan and oral immunosupressants. I am happy to say it worked! I can walk, run, and am very fortunate that I can participate in a normal life for a girl in her twenties.

      Good Luck to You!

    • Anonymous
      August 23, 2009 at 8:38 am


      You go, girl! I love trail blazers and you and your partner are in my prayers. I am following your brave adventure into new medical procedures and can’t wait to hear about the great improvement you will get from this!

      Please tell your parents I am also praying for them for giving you this opportunity!!!!! My daughter is almost 35 (yikes – when did that happen????) and her and her partner live abroad … and I tell you I would find a way to help either one if needed as I love them both so much. They will be passing through here this week on their way back to the orient after traveling South/Central America this summer and I can’t wait to get my arms around them. Hearing your story makes me appreciate their health that much more!

      Emily – I am so happy to hear that you are much improved. I can’t imagine what you went through mentally to get where you are now. Keep it up!

    • Anonymous
      August 23, 2009 at 9:58 am

      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,

    • August 24, 2009 at 10:41 am

      Alice, you for got about the courdoroy pants!!! Why do they always wear them!!!!!

    • Anonymous
      August 24, 2009 at 10:43 am

      so true… nerds :rolleyes:

    • Anonymous
      August 24, 2009 at 4:25 pm

      And I agree that neuros and other docs should have an ‘appetizer’ of what is endured by folks here!
      You will be near my heart and on my mind as you explore a new ‘inner space’ so to speak.

      Big bunches of hope realized and soon.

    • Anonymous
      August 25, 2009 at 3:30 pm

      I replied on facebook and it didnt show up so…

      I just wanted to say that is an awesome analogy.

      Over the weekend I saw some friends at a wedding that I hadnt seen in quite a while. They were shocked to see me with a cane. In fact, they didnt even know what I have b/c before the cane, it wasnt “obvious”.

      I told them about you and what you are doing. I realized I’d be right there with you if I had a phyical job such as yours.

      I’m sure your fellow officers are excited to get you back and if anyone can do this, it’s you.

      God bless you Alice !

      oh, and well said about the nerdy neuros…let’s not forget the stiff suit and tie and shiny shoes, eh ? It would be awesome to trade places for even a day with them.

    • Anonymous
      August 26, 2009 at 7:24 am


      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?

    • Anonymous
      January 3, 2010 at 10:43 pm

      bump to top