I had a Stem Cell Transplant for my CIDP

wow that i soo awesome!! Looks like stemcell transplants are giving alot of people a new lease on life. I wish you all the best and thank-you for letting us know!! It gives me hope!!

Sonia

That is great news. It is wonderful to know that should we ever need other treatments there are viable options. Thanks for sharing your story.

“NEW PERSON”,
Welcome,
That is great for you and encourages others with CIDP that may need a SCT. So glad you posted please update on your follow up appointment.
Keep recovering.
Shirley

[FONT=”Microsoft Sans Serif”]how awesome!! me too!! i was there one month after you– my transplant was 10/09!!

i am so glad you posted and even more happy that you are, dare i say, “cured…” my experience was and has been the same– nothing but miraculous improvement. i’m medicine free and improving veraciously!

my last check up, about 3 weeks ago at northwestern, was a surprise to all– my nerve tests and everything else improved even more than the doctors expected in the amount of time since treatment! dr. burt actually shook my hand and congratulated me 😉

i heard about you when i was there but of course they couldn’t tell me your name– just that the person that went before me was doing exceptionally well– they were all very proud.

i’ve been hiking 1-2 hours a day lately and watch as my body returns to its previous state! i feel i owe dr. burt and the northwestern team my life–

best of luck and spread the word– i wish more folks would end their suffering and knock this disease out of the water 😮

congratulations!!

alice

p.s. a friend of mine named jim d. just completed his transplant last month– he is [B]already[/B] walking without assistance!![/FONT]

It’s been a blessing hearing about your stem cell transplant LiL Mac.
Alice has helped many by posting this breakthrough treatment on this forum, just as your post has given hope to many suffering from this rare and uncommon disorder.
I want to believe that as more and more sufferers get their life back that the insurance companies will be brought to their knees and that stem cells will be accessible and affordable to all those in need.

Alice,
Can you tell us more about your stem cell transplant? Did you have to get in a trial? If a health care doesn’t pick it up, do you have any idea what it would cost? Are these the stem cells that former Pres. BUsh would not let them use or is it another kind? If we knew it was available, it would take much of the fear that most of us endure…. But is it available? Is Northwestern the only place you can get it?

Carolyn,
If you click on Alice’s name it will take you to the members list page, there you can link on to her other sites that gives her stories. If she does not see this post in the next couple of days, contact her via pm, I am sure she would be happy to help you. BTW they are your own stem cells!! so you don’t even have to take anti rejection drugs your entire life as you would have to with donor stem cells. I will be quiet now and let Alice tell her story, that part is just so exciting to me I could not hold it in.

[FONT=”Microsoft Sans Serif”]thanks dawn! yes carolyn, dawn is correct– they are not the controversial embryonic stem cells that some have moral objection to– they are from your own bone marrow.

insurance seems to be covering it more and more– last few folks i have spoken with have gotten it covered. if you have to pay out of pocket, it now costs $125g — they raised it from when i paid 100g 6 months ago. these are the (discount) costs for the private person– they charge more to insurance companies–

there are other places doing it: ottawa, canada, sao paulo, brazil and other places too. but in the US, its only offered (for cidp) at northwestern via a clinical trial…

as dawn suggested, you can read through my posts– they cover the whole thing– also, i gave a website: [url]www.alicedicroce.com[/url]

best,
alice[/FONT]

Thanks, Alice……I was confused when you wrote the word “dot” – wasn’t sure if it was supposed to be written that way or not…..love the quote though.
The computer tech messed up my email…so I was not on the site for 6 months…..
This is the most promising news…..can’t wait to go back and read your posts……

__________________
www dot alicedicroce.com
(the root of the illness is immunologic, not neurologic)

“The microbe is nothing. The terrain is everything.” Louis Pasteur (1822-1895)

I have been diagnosed with CIDP and have been through all the normal treatments with no improvement.

I am currently getting cytoxin treatments. So far five down one more to go next Tuesday.

I have tolerated the cytoxin pretty well but have seen no improvement and in fact am weaker than when I started.

My Doctor says I will not see improvement at least until the treatments are complete and possibly a couple of months later. I’m discouraged and beginning to think I’m at another dead end.

Questions: 1. Anyone have cytoxin treatments with delayed positive results?

2. Am interested in the possibility of stem cell transplants if the cytoxin doesn’t work. Any info will be appreciated.

Ubbietom

Keep up please! Keeping us up to date?
I’d seen the app for the trials, and I didn’t qualify due to other issues, but? I’d sure love to know IF in the future this treatment could help ME become even semi-normal in the future. After a while, I’m hoping I mite qualify as ocriteria are ‘lossened’.
I am honestly jealous in ways, yet, afraid, as all cautions must be taken, as Alice can and does elaborate on. Treatment like this? Is not for the faint of heart! Good luck and keep hope always.

Lilmac,
This is such great news!!! It is always nice (for me) to hear the positive stories. I wish you much success in the months to come.

I was accepted for an evaluation at Northwestern in 2 weeks, I am so, so excited and nervous all at the same time. I can’t wait to hear hat they have to say. 😀

Hi, folks,

I am going to Northwestern for an evaluation also. I am so excited (never thought I’d say THAT about a bunch of medical tests). I am scheduled for May 26-28. My local neuro is cautiously optimistic about stem cell transplant, reminding me that I may be left with permanent residual weakness due to probable axonal damage. Maybe yes, maybe no. But he is on board with my decision, and I am heartened by all that I hear from those who have undergone the procedure; i.e., being disease free!

Walking! Hiking! Running! Maybe wearing shoes with heels again, instead of AFO’s inside stupid-looking size 9 bicycle shoes!

Yeah!

Sharon

Hi LilMac,

So happy to hear your GREAT news……….keep up the good work!!!! Going to Chicago next week………………Can’t wait!!!! 😀

Hi LilMac,
Congrats! Keep up the healing! I am new to the forum, & have just heard about Stem Cell Transplant. Already received info from Northwestern to take to my Dr. I’m very excited!

How AWESOME!!!!!!!!!!!!!!!!!!!!!!!!!
I am new to the forum, have had my head in the sand for many years. My heart & mind are bursting with excitement & joy for my fellow CIDP family who have been cured, or are being prepared for transplant!!!!!!!! Have received info from Northweatern to take to my Dr. I pray for comfort, peace & healing for all of us!:)

Hello all:

Just got the news that my insurance is going to pay for my evaluation for stem cell therapy at Northwestern. I am sooooo happy about that and frankly surprised, as they are giving me a huge hassle about paying for my cellcept. I am paying out of pocket now (for 6 weeks) and at $10 per pill x 4 pills a day it is getting a little pricey! I am now in the second level of appeal with my insurance company. Next step: demand a face to face meeting with the review panel (they are in the next town over). This is so weird, because they had no problem whatsoever in paying for my useless IVig treatments at 11K per two day treatment per month.

Go figure.
Sharon

Can those with GBS be helped by the SCT, or is it just for those with CIDP ? I think most are willing to try anything for any improvment. I hope all will find help with these diseases.

God bless,
Drummer

Thank you for posting all this wonderful news & information! Can you tell me, do they accept medicare parts A, B, & D & Aarp Medicare Supplement? This $125 G, does it include all Dr. fees? Radiologists, pathologists, Cardiologists ect?
Thanks, smitty

That $ news makes me feel very sad indeed! Somebody please cheer me up quick!

So sorry you were not a canidate for SCT. May I ask what other issues kept you? God Bless You!

I went to my neuro Dr. today, he has heard about SCT, he is supportive! Says I look like a canidate from his point of view! I’m so excited! Love you all, smitty

Hi, All:

I just returned from my evaluation at Northwestern. It all looks good for my being a candidate for SCT. Dr. Driss, the neuro there, concurred with the original dx…I am lucky in that all my tests all along have pointed to CIDP; i.e., no doubts or head scratching as has been the case with many of you. Dr. Burt, Paula, Dr. Driss and the guys who administer the tests are terrific.

I hope to get my official invitation very soon.

I am so excited.

Yippee!!!!

Sharon

PS: I asked Dr. Burt how many CIDP patients had gone through this. He thought about 14 or so. I hate this disease but am grateful that I didn’t have it 10-15 years ago when there simply wasn’t a cure.

I’m so excited for you too! Agree yipeeeeeeeeeeeeeeeee!!!!!!!!!!!!!!!!!!!!! Praise the Lord! Hope you get your invitation to NWU soon too! Suprised about the number of those who have been cured at NWU only 14.

I’m very excited for you too! Agree yippee!!! Praise the Lord! Hope you get your official invitation to NWU soon too! Suprised about the number of those who have been cured 14 or so.

I learned today that I have been accepted into the SCT study at Northwestern! Paula, the nurse coordinator, has already submitted paperwork to my insurance company. It will be a long struggle, I am sure, but I am hopeful that they will approve it.

I am still working, but realize that I can’t continue full time. Too fatigued and “squirrely” to effectively lead an organization at this time. This is a big blow to my self-esteem, and I had a melt-down when I had to face the facts. I go to my advisory committee on Monday with the news and a proposal for a leadership team to help me now and an acting exec. dir to take over when I am in Chicago. I don’t know if I will return to this job after the SCT and recuperative period. Right now I feel that after 6 months of being not around, the organization will have moved on.

Not a bad thing, necessarily. I have been thinking that it may be time to move closer to family and maybe go back to contract work teaching ESL. There’s a lot to be said for leaving your job when you leave your workplace.

Sharon

Sharon , Im so happy for you that you got accepted into SCT. Im here having the process done now.

It was a long battle for me with the insurance I got denied twice ,because is still research and because under my policy any transplant had to be done at the mayo clinic, but I kept fighting and went through a lot ,and at the end I WON. They granted me an exception to come to NWH and have it done. Ms. Paula,Dr. Burt and Mr. Dean are great helping you with that.

If you need any help or suggestions,please let me know. you can call me anytime. I’ll be more than happy to help you.

Rossana

😉 Such great news!!!!! I hope your insurance WILL step up to the plate….Wishing you all the best with your SCT. Please continue to post. Best of Luck!!!!!!

Wow that’s wonderful news & so fast! I do hope your ins. approves just as quickly! We are all very happy for you!
Love & gentle hugs, smitty

Thank you all. I am very, very lucky. Imfan, can you tell me how long it took for your insurance to agree? I was told it could take 2 months for insurance to make their final decision.

Jacque, keep me posted on your final dx. Wondering if you ‘ve been seen yet at the Mayo.

sharonb

Smitty, sorry I missed your call…let me know by pm (best way to get a hold of me) about the outcome of your contact with Northwestern.

Sharon

Hi Sharon,
I haven’t been to Mayo yet. My appointment isn’t until mid July. It seems to take a very long time to get an appointment. All in good time I guess.

I hope all is going well with you. 😉

Take Care!!!!

Anastasia52,
for my insurance it took 5 months. It depends on the kind of policy you have. They denied me twice, but i kept fighting and the 3rd time they granted me the exception.

I hope your insurance doesnt take too long. Let me know if I can help you with anything.

Rossana

Jaque, which mayo clinic are you going to ?

I went to the jacksonville, florida one, but they told me that the specialist on cidp is at the mayo clinic in Rochester,minessotta. Since I wasnt going there,she contacted him for his opinion.

If there s anything I can help you with, let me know.

Rossana

Dear Friends:

I received a call yesterday from the Anthem BC/BS transplant nurse coordinator that they will cover the cost of my SCT at Northwestern. I can hardly believe my good luck. I was sure that, like most of you who have undergone this procedure, I would have to go through a lengthy denial/appeals process and then might still be denied in the end. Then I’d have to figure out how to pay for it on my own…

I don’t have a date to be in Chicago yet…waiting to hear from Paula, the nurse coordinator at Northwestern. But wanted to share my good news.

Sharon

[FONT=”Microsoft Sans Serif”]great news sharon– congrats!
is your blue **** insurance a ppo or an hmo?

alice[/FONT]

Wow! That’s wonderful news! I’m very excited for you! Just now logged on to check on everyone’s progress. a prayer is answered. Can’t wait for the next one!
God speed you.
Love & gentle hugs, smitty

Jacque,
It’s almost mid-July, what’s happening with your process? Prayers are being answered, yours are due.
Love & gentle hugs, smitty

Alice and Smitty: Thanks so much for your good wishes and prayers.

Smitty, have you heard anything about your own eval?

Alice, it’s an HMO. I asked how they came to approve it (as they REFUSED to pay for my cellcept, so am paying out of pocket) and the nurse coordinator with BC/BS stated that they (I guess a team of insurance co-paid MDs) reviewed carefully the material that Northwestern supplied, had a peer review consultation (presumably with Dr. Burt but maybe my local neuro — haven’t asked yet) and decided that it was worth paying for. There was NO initial denial. It took about a month from initial filing of paperwork to decision. I think this is a good omen for for those of who follow in this clinical trial. Even though it is still experimental, there is apparently enough good results for insurance companies to begin covering the procedure.

Alice, I hope you are continuing to do well and that you can look forward to returning to active duty soon. Keep us posted.

With great, great, joy,

Sharon

WOW !! Sharon Congratulations ! Im so happy for you .
Im glad it was an easy process for you, it took me 6 months and several denials.
I just got home Monday from Chicago. Im so excited for you!!!

If you have any questions, let me know.

Rossana

Interestingly, when I’d first gotten this CIDP stuff, BC/BS had readily accessable policies about IVIG? And they were the leader for that protocol! That they’re doing this? I’d do a handstand [IF I could ever have done one?]!
Know that you will be in my heart and mind and prayers etc to succeed!
Keep faith in YOURSELF! Keep hope and be stronger than you ever thought you could be ever!
From Alice’s reports? IT is impressive and who couldn’t wish for or want that?
You aren’t playing with nature? You are simply going thru a process to correct a deformity of nature. But, it’s a big process. With heaps of rewards! Hope and hugs always

I’m leaving for Mayo tomorrow. Hopefully by the end of the week I will have some answers.

You take care!!!!

This is wonderful news!! I have a question: I harvested the stem cells when my children were born. Does anyone know if that makes it easier/cheaper/no chemo/etc to get a SCT????

Guskno,
Are those your children s or yours?
The SCT treatment that Northwestern is working on is with your own cells, not donor’s. I just had it done, and it s the best thing i could have done. You are your own donor.
You can read more about it on their new website
[url]http://www.stemcell-immunotherapy.com/[/url]

If you have any questions,dont hesitate to ask.

Rossana

I will pray for you. Please read all that Imfan, & Alice, & LilMac, & all the others who have had Stem Cell Transplants have posted. Read every post, thread & story. Yes! It’s for you too I hope!
Love, smitty

I am so happy for you. I work for a company that performs stem cells treatments for patients with varying diseases. What types of cells did you receive do you know? Were they umbilical cord cells? How many were you given and how were they administered? IV or LP? Were you given growth factors and markers in addition to the cells? Were you given a combination of Apheresis (your own cells) with donor or Apheresis on it’s own?

I have seen truly amazing things happen to patients who have nothing else left to turn to. One of our patients with aggressive leukemia came to us with only 4 months left to live, we were able to extend his life by an additional 4 good years.

This is still a relatively new area of medicine, nor is it an exact science; the long term effects are not yet known, please be cautiously optimistic with your recovery as sometimes the effects of the cells tend to drop off a bit. Also, as the body is made up of many, many millions of cells the cost to replace all of the damaged neural cells would be astronomical.

Keep up the good work on your recovery and often times diet and vitamin replacements play an important role in helping that along. Our patients are not allowed red meat or dairy products (due to the hormones and antibiotics), no alcohol or cigarettes incorporated into a low fat diet plan will also help maintain the health of the new cells.

~~CathyK

As a matter of fact, harvesting stem cells from the umbilical cord blood of your children is excellent as 1/2 of those cells have come from you. You would tend to lose less cells, through some rejection and not need the immuno suppresive toxic poison to kill your cells, both good and bad.

It’s a wonderful thing you did that for your children as in the future they will be able to take out cells and grow themselves a heart or kidney if needed.

[QUOTE=guskno]This is wonderful news!! I have a question: I harvested the stem cells when my children were born. Does anyone know if that makes it easier/cheaper/no chemo/etc to get a SCT????[/QUOTE]

It’s past the end of the week, do you have news that’s too hot to keep? Can’t wait to hear!

Love, smitty

Hey Everybody, what’s happening with your SCT preparations!? Tests? Trials? Lab tests, heart caths? I can’t wait to hear!

Dear All:

I am in Chicago at Northwestern Memorial and had my first round of treatment last night…an overnight chemo in preparation for stem cell harvest scheduled for late next week. I’d never had chemo before and have been so far pleasantly surprised…they premedicate you very well, both to avoid nausea and toxic effects on the lining of the bladder. So far it’s been more than tolerable. And they take excellent care of you…nursing staff, Dr. Burt’s staff, phleb techs (you see them A LOT) and so many others.

I will endeavor to keep you posted on my progress on this thread if any of you are interested.

Blessings,

sharon

PS: If you are thinking of doing this I really advise that you have a care giver/advocate at all times if you possibly can. They can be enormously helpful just as a second pair of ears (sometimes its hard for one person to take in so much new information) also for the little things…like getting your laundry done while you are an inpatient and doing other errands that your IV hook up prevents you from doing for yourself.

I’m so happy for you sharon!! YAY..they are the best. Today is 2 months since i had it done and I feel great! I’m so glad I was able to do it.
Keep us posted. you’ll be in my prayers!

Rossana

Alice had encouraged me to at least call? And, your good responses are pushing me very hard to at least do that! From the basic outlines, I don’t qualify on at least 2 criteria, so I’ll let you all know.
Until later!

Wow! That’s wonderful! I feel a HEALING coming on, & it’s coming your way! So happy for you! I found out today I don’t meet the criteria either, but it has not dampened my spirit. Can’t begin to tell all the blessings & miracles God has poured out around me in the last week. What an awesome & generous God we have! I’m praying for you girl.

Love, smitty

I agree with Alice, at least give them a call and let them decide if you meet their criteria to qualify for treatment. They have basic outlines but they also look at each case inDividually. You don’t lose anything with calling them or email them and you could win a lot.
I wish everybody could have it done!

Is there a website to see what the criteria is? I would be very interested in seeing if I could get it done

jasonscamera, check this out:

[url]http://stemcell-immunotherapy.org/index.html[/url]

Hi Sharon!
We are sharing with you in prayer and positive thoughts. How wonderful of you to help and educate us with the latest medical treatment you are now receiving.
God Bless You!

Thanks all of you for your good thoughts and prayers. I am doing very well. I started my self-injections today…neupogen to stimulate stem cell growth. i am such a chicken that I had to have my daughter do it for me….but it was so easy that I am confident of being able to do this on my own going forward. i am just one of those people that can’t stand to look!

I had my first round of chemo (not the “big guns”…that comes later), and it all went smoothly. In fact, I believe I feel better now than I have in a long time. The cytoxan seems to have given me a bit of a boost.

Meanwhile, I am enjoying Chicago and checking the gbs-cidp forum regularly. I would be glad to PM anyone who would like more detailed information about the sct protocol.

Sharon

Hi Sharon:

Good luck with all of this. Be careful with the drugs and once your infusions begin picture them healing your whole body. Send positive messages in your mind’s eye to your cells and I know you will do great!!

I am glad that you have a lot of support around you as it helps you heal faster as well.

My thoughts are with you.
~Cathy

My dear sweet friend Pam, died Feb 3d after complications with CIDP. We’ll miss her, we know that she’s in a better place.
smitty

[FONT=”Microsoft Sans Serif”]i’m very sorry to hear.[/FONT]

I’m two weeks out to be admitted in hospital for SCT and still pushing to cover some uncovered expenses. I think this disease breaks us all but extra funds if any will go back into play for others.

Kindly,
Robert 🙂

I apolgize beforehand for busting in on a thread like this. I have searched everywhere and even tried to contact my BC/BS provider (as I have had insurance with them for 30 years…and could not get one iiota of simply ‘what if’ detail from them) for help. The ‘story’ is as follows: I have a dear friend from Eastern Europe who moved to America a couple of years ago. Due to difficult work circumstances he has been unable to afford insurance (he now understands the necessity of such despite his limited income). As fate would have it he had to check into the local emergency room (and was ultimately admitted to the local hospital) on Christmas Day 2010 and was eventually diagnosed with ITP (Idiomatic thrombocytopenic purpura – which is basically an unknown condition wherein one’s immune system attacks/destroys one’s platelets). Normal platelet levels (I believe) run about 120,000 to 150,000. His were 1000 upon entrance into the hospital (he was bleeding from eyes, through skin, in mouth, in urine, etc)…and subsequently he was administered a 140units (infusion/bag) of Privigen (10/gm per 100ml)…which when the dust settled cost $44,000.00. He also had a number of xrays/test and spent 4 days in the hospital at a charge of $1185/day.

I was able to help him with information about usual and customary (like BC/BS – Blue Cross/Blue Shield) insurance allowances for the hospital room. For instance, when my wife was in the hospital some time ago…they charged about $1100/day for her hospital stay per day…but BC/BS only allowed about $300/day and the bill was considered paid in full. I am hoping that someone might be willing to share with me some kind of similar feedback with regard to how thier insurance (hopefully something like BC/BS) handled the charges from the hospital for Privigen infusion. I don’t think anyone is privy to how these behind the scenes ‘allowances’ are derived. But for instance, when I had achilles tendon surgery last year…the doctor charged over $10,000.00 for the actual surgery and again BC/BS only allowed him payment of about $2600.00. Again the bill was considered “Paid in Full”. I’ve got to believe that there are similar situations or ‘allowances’ with regard to the payment for Privigen through powerhouse insurance providers like BC/BS.

I am requesting this information so that my friend can have at least some sense of usual and customary insurance related/established allowances with which to barter with the hospital. If anyone has information wherein they were administered a similar transfusion of Privigen…and were charged a similar amount (HCPCS billing code for Privigen is J1459 ($275 per unit…140 units = $38500.00)…and then their insurance provider paid fractions of this cost (say 20-35%) and the bill was considerd “Paid in Full” and would share this detail with me…it would be GREATLY appreciated.

My friend’s life was saved with this Privigen protocol and he wants to honor payment. However, he is simply a waitor in a restaurant…and even sends portions of what little money he makes home to his parents in Romania…and will never be able the pay his hospital bill of $62,000.00+. He would like (to offer/negotiate) to pay whatever is usual and customary (like possibly BC/BS would do) if at all possible. Again, any detail and/or helpful information that anyone can share will be very GREATLY appreciated.

Sincerely,

Bobby Griffith