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Clementine

Stem Cell Transplants

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Today I learned a lot about stem cell transplants. One thing I learned is one must have skin involvement and have scleroderma 5 years or less.

 

First question is why must one have skin involvement? Dr. Furst said that SCT doesn't improve the disease but at it's best will stabilize it.

 

Second question is how on earth do you know how long you have had Sclero? For all I know I've had it for 15 years but was only diagnosed 2.5 years ago.

 

He said that stem cell has greatly improved and that the outcome is MUCH better now that they have learned to cover the kidneys and lungs during radiation, which is part of the procedure.

 

I don't feel bad enough at all to even think I need stem cell transplantation but always thought I'd have that to fall back on, but I guess not. Sad.

Thanks,

Jennifer

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Hey Tangie,

Stem cell transplants for scleroderma patients are still under the clinical trial state and therefore must meet certain requirements, i.e. skin. Also having one less variable to consider will make processing the results easier. Dr. Furst represents the qualifications of the SCOT trial. There is also the ASSIST trial and a few other doctors who perform transplants who may/may not be a part of a clinical trial. But, for the most part it is still "experimental". I think part of the problem is that there are too few people that have scleroderma and even fewer who at the point of needing a stem cell transplant. Getting a trial out of the "experimental" phase requires a certain quantity of people and achieving that quantity might present a challenge.

 

There are also different types of stem cell transplants. SCOT and ASSIST are analogous, or a transplant using your own stem cells, may cause remission but usually will lessen symptoms or stabilize the disease. An Allogeneic Hematopoietic Stem Cell Transplant or Allo uses a sibling's stem cells, or stem cells from the bank. I was told by a leading research doctor that this may be closer to a cure.

 

Let us hope that you stabilize and you never need a transplant.

 

hearts, peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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So does anyone know why to qualify you have to have skin involvement and have sclero for 5 years or less and yea, how does anyone know exactly how long one has had sclero when you could have had it for years and years before a diagnosis?

 

Good questions Tangie!

 

B


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Barefut,

My hubby said he understood it to be that stem cell transplant mainly helps with skin involvement, and that is why it is a requirement. He also understood it that after a certain period of time (five years, per se) your body becomes too used to the disease and stem cell does not help as much. That is ONLY his understanding...it could be different.

xo,

Jen

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Good post ,

 

I was part of the SCT clinical trial at Duke, and I have never been told I have had Scleroderma for 5 years or greater. My symptoms for the most part started in January of 2006 and I was diagnosed in July of 2006. I am curious where you learned that there was a 5 year requirement? My understanding, in fact, is that inclusion criteria requires that the scleroderma must have been in existence less than 4 years from the onset of Raynauds. I am providing you a link seperatedly, in a private message, which details the exclusion and inclusion criteria. Your point regarding the covering of the kidneys and lungs during radiation is well taken. They have come a long way regarding this issue, though there still is some risk. Please understand while the SCOT trial uses radiation, the ASSIST trial at Northwestern does not. I must admit, going through the total body irradiation part of SCOT was the most difficult part of the treatment for me. I have been told that the results of the trial so far, do mainly help with skin involvement. To be included one must have a Rodnan skin score of greater than or equal to 16 verified on 2 occasions at least 28 days apart. I wish I could tell you why this is a requirement, but it is a question I have never asked, so I don't know. All I know is that when I was screened the first time I was told it was a 27 and by the time I had my transplant it was in the 40's, so it was pretty clear I was rapidly progressing. In fact, they look for people who are in the early stages of the disease. whose disease process is rapidly progressing. Thank you for looking into the clinical trials available. I have always believed people with this disease need to be proactive and look into the treatments available. For sure, SCT's are not for everyone. But I truly believe many can be helped by them. I know I have been. My Rodnan skin score last month at my visit to Duke was back in the 20's and I believe it continues to go down. My PFT was actually better, which I don't think they expect to see. There hope is that it at least continues to remain stable. In any event, I am so glad that you don't feel bad enough to have to consider a SCT. I wish only improvement of this dreaded disease for everyone.

 

Dave in FL

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Hi Barefut,

 

The Rodnan skin score is a test to measure the tightness of the skin. What they do is pinch your skin on the hands, fringers, arms, trunk, face, feet and legs and based on their ability to pinch the skin, they score each pinch from 0-3, 0 being no tightness and 3 being the most tight(can't pinch at all). I think the worst total score you can get is in the 50's. It is a very subjective test based upon the rheumatologist giving it. I am sure 2 rheumatologists giving the same test could come up with 2 different numbers. That is why it is important that the same dr. give the test at different times, to measure improvement. I hope that adequately explains it.

 

Dave in FL

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Hi Friends

 

I'm being evaluated for a stem cell transplant in Chicago. We haven't decided on which kind of stem cell transplant fits my condition. My exam in December will further determine this. My friend brought up a good question: The stem cells - is anything special done once they are removed from the donor? Is there be any thing different or better between my own stem cells, my siblings or cord blood?

 

This is the answer I got. I found it to be very interesting... thought I'd share it.

 

Peanut.

 

 

Answer:

 

While the stem cells are being collected, they are are centrifuged to

enrich the proportion of stem cells and reduce contaminated lymphocytes.

Additionally, they need to be cultured x 2 weeks to make sure there are

no contaminating organisms according to FDA standards.

 

A stem cell transplant with your own cells is referred to as a

autologous stem call transplant. Taking your own cells is best in that

you will not deal with any rejection issues. (Meaning your stem cells

will be given back to you in a way to "re-boot" your immune system.)

However, if the doctor feels your condition is too advanced to use your

own stem cells, we'd ideally go with a sibling that has an HLA match

(meaning the sibling's cells are close to yours). Lastly, a cord blood

transplant is referred to as a "MUD" transplant- meaning matched,

unrelated donor. The ideal situation is to use stem cells that resemble

YOU as much as possible.


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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How do you get evaluated for a stem cell transplant. Is it somethinf that you ask for or the doctor has to refer you. Also, does anyone knows the side effects?

My doctor never wanted to do the skin test because he doesn't think it's important. Well, that was back in 2004. I'm going to have to ask my doctor herer in South Korea and see what he telld me.

Another question, how long does it get to get evaluated and does insurance cover the work done?

 

Sorry for all the questions,

 

Ani

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After the treatment I did for 6 months basically failed, my rheumyy gave me stem cell tx as one of three options to look into. I've done a lot of research and asked around for information. As a result, the doctor I'm going to Chicago called me personally. :D

 

My evaluation exam will take 3 days with 3 doctors, 3 major tests and labs - but every hospital and system is different. Currently in the US stem cell tx for scleroderma patients are for the most part considered "experimental" and are still in the clinical trial phase as a result insurance may or may not cover it.

 

I haven't gotten to the insurance part yet... so those who are going thru the procedure will have better knowledge than I. I was told if it's an FDA approved clinical trial the likelihood of insurance covering the procedure is high, however many times they won't cover it then after the procedure they'll cover part. Many people have to do fund raising.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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For insurance coverage for the stem cell transplant, my informal tally is that United Healthcare is covering the procedure assuming it is a medical necessity; Blue Cross Blue Shield is not covering the procedure as it is deemed "experimental". However, Blue Cross Blue Shield of Florida did agree to cover the procedure on appeal. It is my understanding that the BCBS are different companies -- so even though BCBS of Florida agreed to cover the procedure in doesn't mean that the other BCBS companies will cover the procedure. Also, if you are on Medicare; Medicare is covering the SCT.

 

As the SCT is very expensive, whomever agrees to do the procedure will contact your insurance company to get pre-approval. If you have United Healthcare, then it looks like you are a go. BCBS looks to be a no-go. I'm not sure about any other insurance companies.

 

For those of you that agree to pay for the SCT "out of pocket" and with fund raisers, the important thing to remember is that any complications arising from the SCT will not be covered by your insurance as it will be deemed as having related to the SCT. So, is your SCT a $100K cost or a $150K cost based on some unforeseen complication. Also, even if you get through the gate and pay for your SCT, if your file is "flagged", your insurance company will try to not cover you for anything saying it related to the SCT. So if a year later, you get an infection, your insurance company could possibly not cover the antibiodics.

 

Also, for those choosing the "out of pocket" route, make sure your negotiate the cost with the hospital. At this point you are a consumer. You should get the same discount that say BCBS gets. And since you are paying out of pocket -- do you really want to be part of a clinical trial or do you just want to get the procedure done and not deal with the clinical aspect? As part of the clinical trial, you still have the minimum $100K price tag when not covered by insurance, as the clinical trial does not cover your hospitalization and other costs. As a consumer, you can certainly look around. For example, you can have the SCT at Northwestern or you can have one done in Maine. Big Hospital vs. Smaller Hospital. Both doctors have similar experiences with SCT.

 

Have fun. Gidget

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Great info. Gidget,

 

I think somebody asked about cost awhile back. I had many complications with my SCT and at last tally UHC(United Healthcare) has paid nearly $500,000 to Duke. Duke is a network hospital so the $500,000 is at a reduced rate. I am sure what was billed was significantly higher. The SCOT study does pay a percentage of travel and lodging, for both the patient and a caregiver. UHC will also pay a percentage of travel and lodging. Be prepared however, the travel and lodging is a significant cost out of pocket. SCOT cuts off payments for travel and lodging after your 7 month follow up, I believe. You still have to go back every month for a year following transplant and then every three months for the next 4 years. After you are discharged from the hospital, you need to stay in a hotel or apartment for outpatient treatment. Outpatient treatment can take a long time. It adds up, especially when you are still paying your mortgage at home. While the $500,000 probably sounds like sticker shock to many, I was discharged and readmitted to the hospital on 4 or 5 different occasions, all of which were significantly long stays. Alot of it is fuzzy in my head, especially the number of hospital stays. My wife tells me it was 6 times, but I am not sure about that. The point is, even if your ins. co. pays, be prepared to shell out alot of money. One thing to remember though. Health is far more important than money. I can now say the transplant was well worth it. I hope this info. was helpful for those thinking about a SCT.

 

Dave in FL

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Dave,

That is the reason, I haven't gone the out of pocket route -- I mean, there is a big difference between $100K and $500K. In the end, we need better insurance laws so that insurance companies cannot hide behind "experimental" without looking at the "medical necessity" argument. Unfortunately, none of us have the time to wait for experimental treatments to become standard treatments. Have fun. Gidget

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Hey Dave & Gidget,

I found a program that provides complimentary rooms for families when transplant patients must travel to receive care. The program coordinator told me the program covers hotel stay related to exams for transplants. Woo hoo. They are paying for my mom-n-law and I to stay at a really nice hotel across from Northwestern in Chicago. I chose that hotel because its location eliminates the need for a taxi.

 

I have united health care and BCBS of AZ. I've heard from multiple sources that United will cover the stem cell transplant. Did they cover all of it or just a portion?

 

I've heard the procedure takes 4-6 weeks min in the hospital. How long did you stay?

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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