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My uncle needs a stem cell transplant for aggressive cancer, need info.

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liberalhistorian Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 07:35 PM
Original message
My uncle needs a stem cell transplant for aggressive cancer, need info.
As I believe I've posted before, one of my uncles has had a recurrence of the cancer he fought seven years ago and this time it's much worse and much more aggressive, (he and my aunt are the ones I"ve been helping fend off the goddamn vulture inhuman bloodsucking medical debt collectrolls, as I've also previously posted) and the prognosis isn't all that good.

So the docs have discovered that it's spread and now they want to do a stem cell transplant, which they say is probably a last-ditch measure. My stepdad will be the likely donor.

Does anyone have any info on this, what it involves, what the general prognosis is, etc.? I'd appreciate any info you may have, thanks! We're all very concerned and worried. :scared: :scared: :scared: :scared: :cry: :cry: :cry: :cry:
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NC_Nurse Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 07:36 PM
Response to Original message
1. Are you meaning
a bone marrow transplant? I haven't heard of a stem cell transplant yet.
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liberalhistorian Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 07:40 PM
Response to Reply #1
2. No, my aunt told us on the phone
tonight that it's a stem cell transplant. I've heard of it before, but I don't know much about it.
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Maestro Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 07:42 PM
Response to Original message
3. Please see...
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liberalhistorian Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 07:46 PM
Response to Reply #3
5. Thanks for the link,
I'll check it out!
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NC_Nurse Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 07:45 PM
Response to Original message
4. I thought it was still experimental.
We don't do them yet here. I hope it works for him. I'll be thinking of y'all.:hug:
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liberalhistorian Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 07:48 PM
Response to Reply #4
6. Where do you live? I'm in
Ohio (we're in Cleveland and they're in Toledo) and I know it's been done both here and in Michigan.
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Spinzonner Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 07:48 PM
Response to Original message
7. Is this for Leukemia ?

If so, you might check out:

http://www.marrow.org

and similar/related sites.

and look for the Stem Cell transplant references.

It might also have material on use for other diseases.
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liberalhistorian Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 07:52 PM
Response to Reply #7
8. No, it's for lymphoma,
Edited on Tue May-18-04 07:53 PM by liberalhistorian
and a very aggressive case of it. I just thank God they have insurance, or he'd probably have been dead by now and they sure as hell wouldn't be bothering with this transplant since it's so expensive.

That doesn't mean, of course, that they don't have a ton of medical debt from the bills insurance isn't covering and the co-pays, which have all added up very quickly.
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Spinzonner Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 07:58 PM
Response to Reply #8
11. Still should check out the Marrow resources

since they tend to be coordinated and handled by the same organizations - at least donor-wise - and used for some other diseases - such as aplastic anemia also.

There is definitely material at the www.marrow.org site on Stem Cell transplants.
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liberalhistorian Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 08:07 PM
Response to Reply #11
12. Thanks,
I'll take a look at it!
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Maestro Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 07:55 PM
Response to Original message
9. See also
Edited on Tue May-18-04 07:56 PM by Maestro
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liberalhistorian Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 07:57 PM
Response to Reply #9
10. Thanks,
I appreciate it! Are you a doctor or medical professional?
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NightTrain Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 08:37 PM
Response to Original message
13. Aww, honey....
Like you're not going through enough B.S. already!

As always, my thoughts are with you. And if you need a sympathetic ear, you know how to reach me. :hug::*
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welshTerrier2 Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 08:55 PM
Response to Original message
14. two strong recommendations
Edited on Tue May-18-04 08:56 PM by welshTerrier2
please contact the National Cancer Institute ... they are there to help you ...

website: http://cancer.gov/cancerinformation (incredible free publications for doctors and for patients)

phone: 1-800-4-Cancer (i spent over an hour with them on the phone when my mom had lung cancer ... she was given a choice of two different surgical procedures and we were having trouble making a decision ... they did all kinds of research for us and were incredibly helpful ... i really hope you call them for guidance ...)

my sister-in-law has been through 2 rounds of lymphoma ... the second time she had to have stem cell transplants ... it's tough on the patient ... they have to hit you with very heavy chemo to almost kill you before they can do the transplant ... at that point, you lose all your immunities to just about everything ... it's a delicate business but she's doing fairly well now ... fwiw, she had hers done at the Brigham and Women's Hospital in Boston which is affiliated with the Dana Farber Cancer Center ... the medical care there was absolutely the best ...

one other tip ... after doing extensive reading on numerous bulletin boards about cancer treatments, one drug was recommended above all the others for dealing with nausea, a common side effect of chemo ... it's called Zofran ... it's very expensive so some place try to peddle cheaper alternatives ... i understand there are some newer drugs out now that are also very effective ...

i wish you and yours the best of luck ... be a warrior (we nick-named ourselves "chemo-sabies") ... cancer patients need all the advocacy they can find ... you might try to enroll your uncle in a cancer support group ... it REALLY makes people feel better ... even the ones who at first resist the idea ...
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liberalhistorian Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 09:10 PM
Response to Reply #14
15. Thanks for the info and the suggestions,
I really appreciate it! One of the main things they're worried about is what this will do to them financially, they're already in tight straits and buried in medical bills, and he's been too sick to work for the past several months and it'll be a long time before he can work again, if he ever will be able to again. He's worked hard all his life, and it bothers him that he may not be able to work for a long time.

That puts the burden on my aunt, both working and taking care of and worrying about him. Her boss won't let her take too much time off to deal with this, even when he has the transplant, which just infuriates me since she's been a loyal, hardworking employee there for many years.
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welshTerrier2 Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 09:28 PM
Response to Reply #15
17. no problem, my friend
my sister-in-law was able to get disability for 6 months after her treatment ... that really helped with the bills ...

i'm no expert on the issue but it seems to me your aunt's boss shouldn't have a choice about giving her time off ... you might want to do some research on the Family Medical Leave Act ... i would expect something like a spouse with cancer to be covered ...

btw, my sister-in-law thinks the chemo impaired her memory and thought processes ... she's had a very hard time going back to work (she's a lawyer) ... the doctor said this can be a side effect and is sometimes temporary and sometimes not ...

not sure if you indicated what kind of lymphoma your uncle has but check out these two links:

http://cancer.gov/cancerinfo/wyntk/non-hodgkins-lymphoma
http://cis.nci.nih.gov/fact/7_41.htm
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flamingyouth Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 09:25 PM
Response to Original message
16. Wow, I'm really sorry to hear this
Sorry I don't have much info to help here (although I do know someone who went through it a few years ago), but just wanted to pass on my best wishes to you and yours.
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liberalhistorian Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 09:46 PM
Response to Reply #16
18. Thanks,
I appreciate it!
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Mayberry Machiavelli Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-18-04 10:28 PM
Response to Original message
19. In the context of what you are describing, the procedure is usually a
bone marrow transplant. The donor marrow contains stem cells which are the source of the various types of blood and immune cells, hence the confusion.

The usual situation, with an advanced lymphoma or leukemia (a cancer of white blood or immune cells), is that if the cancer cannot be eradicated or stay in remission from the standard chemo and radiation regimens, then the solution is for the patient to undergo a very severe regimen involving very potent chemo/radiation which wipes out the entire bone marrow, and all the sources of blood and immune cells from which the cancer cells arise. This presumably cures the cancer but leaves the patient with another lethal problem, no functioning bone marrow (which would kill from infections and anemia), which is solved by receiving a bone marrow transplant from a donor.

If successful, the donor's stem cells set up production and become the new bone marrow and immune system of the patient, producing the necessary blood and immune cells. The process of doing all this is somewhat risky as you can imagine and can have severe and even lethal complications. Usually the alternative is certain death from the leukemia/lymphoma.

Even after successful treatment there are many, many possible significant complications. Many of the chemo regimens include high dose steroids which can cause join destruction necessitating hip/shoulder replacements down the road. Depending on the degree of "match" between the donor marrow and the patient, the patient's "new" immune system can "see" the patient's body as foreign, causing an immune response/rejection called GVH (Graft Versus Host disease, where the "Graft" is the new marrow) which can be very dangerous or lethal. But again, the usual alternative is certain death.

Some of the biggest hurdles is just finding a suitable match for donation. Sounds like you have already found that within the family (this can be EXTREMELY difficult for ethnic minorities in the U.S.).

Basically, sounds like a risky proposition, but a situation where you have to try. Below is a link, a college friend went through something like this. It's his website. He was very near death, but found a marrow match after a difficult search (he's Asian), and had a successful transplant. He had all kinds of complications as indicated above (it's described in his site) but somehow weathered all of that and as far as i know is doing OK right now. Beats the heck out of the alternative.

http://itsa.ucsf.edu/~alankuo/
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liberalhistorian Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-19-04 12:07 PM
Response to Reply #19
20. Thanks, that's exactly
the info I was looking for! Thanks, everyone, for your help and good wishes! Let's hope this works for him, since it's obviously his last shot, so to speak.
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Bridget Burke Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-19-04 12:37 PM
Response to Original message
21. You've been given some good links.
Originally, cells for transplant were taken from bone marrow. Stem cells derived from apheresis are used in the same way. Apheresis (blood drawn, stem cells removed, remainder of blood reinfused to the donor) is easier on the donor but the results are pretty much the same.

There are many risks, but the procedure can be the last hope. He should be asking his physicians about details relative to his particular disease status and the planned chemotherapy regimen. How many transplants has his center performed?

I wish you all good fortune.


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liberalhistorian Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-19-04 01:25 PM
Response to Reply #21
23. He's having it done at a
medical center in Ann Arbor, MI (at least, I'm pretty sure that that's where it'll be done). He was told that that was the best place in the region to have it done. I'll have find out exactly where, and then check it out.
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Tripper11 Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-19-04 12:50 PM
Response to Original message
22. Hi liberalhistorian, I've had a stem cell transplant.
Mine was for AML(Acute Myloid Leukemia) For me the decision for transplant was a tough one because my doc couldn't recommend either way. Certain things in my chromosomes lead us to believe that the leukemia was in complete remission and there were no indicators that it would come back. A friend of mine also with AML had indicators that it would come back.

In the end and to make a long story short, I opted for the stem cell transplant. My brother was a perfect match and after much research and discussion felt it was the best thing I could do. The reason was that stem cell transplants tend to be much easier on the body. The body will accept and let it graft quicker and possibly with fewer side effects.

For me I was in the hospital for 15 days all told and made it through quite easily.

I did have a friend with NHL(Non-Hodgkin's Lymphoma) and after a year of treatment it came back quite aggressive and they went for a stem cell transplant with him. He fought hard, had a perfect match in his brother as well, but the side effects became too great and eventually the cancer got him. I am sorry to have to tell you that, but it is realistic.

Bottom line as a stem cell transplant cancer survivor, if this has been going on for awhile, which it has, and stem cell is the last option, obviously your father must go for it.

I wish him all the success that I had, and more, sincerely, it will be a daunting task, but one that may very well be the one.

Good luck to you all, keep a strong support system.

P.S. I hope this makes sense and doesn't come across too harsh, my aim was to be realistic with you.

Peace.
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liberalhistorian Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-19-04 01:29 PM
Response to Reply #22
24. No, it's not harsh, and I
appreciate you sharing your experience. There are risks to everything, especially something like this, and we have to be realistic. Hopeful and positive, but also realistic.

He's done pretty well with the nasty side effects from the other treatments, all things considered, so we're hoping he'll be able to handle this as well. They told him he'll be in the hospital for twenty days, and then he has to be at rest for another three months and they want him to be within an hour of the hospital during that time.

The decision was easy for him and my aunt, since it's pretty much his last chance and he has grandchildren he'd like to see grow up and he wants to be around to bug us for as long as he can!!
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