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Old 10-10-2008, 10:24 PM
 
Location: Beautiful place in Virginia
2,658 posts, read 10,239,495 times
Reputation: 1275

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My father was diagnosed with Multiple Myeloma in February with advanced disease, affecting his pelvis, right arm, and spine. He is undergoing therapy with a Thalidomide variant called Revlimid. It caused a severe rash that made him only use it at 1/2 the dose. Now, he has peripheral neuropathy.

Even if a stem cell transplant can lead to remission, I am fearful of the procedure since it can make you sick or die of infection or decreased blood counts.

Anyone with a family member with Multiple myeloma?

Did they go through a stem cell transplant?
What was the treatment course during chemotherapy and shortly following? Did they get very ill near to the point of death?
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Old 10-13-2008, 04:25 PM
 
Location: Branson, Missouri
7,268 posts, read 16,845,135 times
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My dad had the cancer and has been dead for 21 years now.
When he was diagnosed about 35 or so years ago, he refused chemo because they gave him only a year to live anyway so his opinion was, what's the point?
He researched multiple myeloma through books (no internet back then) and found out about a clinic in Tiajuana, Mexico, flew down and started taking treatments that were natural. No drugs or harmful crap going into his body. He went down once a year for the next 13 years of his life.
His cancer at one point was in remission and he lived with it well but the last year of his life was not pleasant at all.
Nowadays, I understand treatments may be a little more progressed and multiple myeloma seems to be more common but I'm glad my dad went the natural, holistic route and extended his life rather than take chemo and die a year later.
My best to you and your dad and to your family in choosing the best treatment for him.
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Old 06-13-2009, 07:47 PM
 
Location: Rockton, Illinois
1 posts, read 6,983 times
Reputation: 11
Hello,
I just saw this note and wanted to respond.
I was dx'ed with myeloma Sept. 1997 at the age of 40.
I did 4 rounds of chemo to knock not the cancer, then I did
conditioning chemo for stem cell harvest. I had the stem cell
transplant Feb. 1998 and I went back to work in the middle
of April. I work in a factory doing very heavy type work.
to see some of what I do for a living go to
Pictures by BraunL - Photobucket
and click on the left on Big Mill.
I do not take any meds other than for high blood pressure,
thryoid, and percocet for pain. I am 52 now.
If you want more detail email me at larsbraun@mindless.com
Forever your,
BuddyLars
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Old 06-14-2009, 09:40 PM
 
2,857 posts, read 6,253,833 times
Reputation: 5098
My brother was diagnosed with multiple myeloma in December. He is taking steroids and Revlimid now and will have his stem cell transplant within the next month. We too, are eager to hear from more people with experience.

BuddyLars - congratulations. Thanks for sharing your story!
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Old 06-15-2009, 12:36 PM
 
382 posts, read 1,721,735 times
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My grandfather is on his 2nd round of treatment for Multiple Myloma. I'm sorry I won't be able to give very detailed information, but I'll try to tell you what I know.
They detected the myloma early on before it was even active. So then he had routine checkups to check for it becoming active (it was just a matter of time). When it first became active they started him on a radiation form of chemo and some meds. His side effects included temporary diabetes (even had to go to the hospital for such low blood sugar once); some pneumonia; weight loss; he got some skin sores on his eyes and mouth; and a lot of soreness in his feet.
He went into remission for only 4 months, then they caught it coming back very early. This time they're doing a pill form of chemo that isn't supposed to be as difficult. So far its doing good, but he did have to go into the hospital for 4 days to be treated for hypothermia and a little pneumonia again.
Stem Cell is an option, but they want to try things before resorting to it b/c it's so hard on the body.

Best wishes to you and your father
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Old 06-15-2009, 04:56 PM
 
1 posts, read 6,950 times
Reputation: 13
Found out in Aug. 2008 thatI have multiple myeloma and had sc transplant in February. I am in complete remission and feel fine. I recommend this for those who are strong enough to do it. I feel great and am back to work. Keep your heads up,live as normally as possible, be positive about life and pray.
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Old 07-28-2011, 10:30 PM
 
1 posts, read 4,848 times
Reputation: 10
Hi Buddy,
I'm in Dallas with my friend Janet. We're here so she can do her pre-consultation for her stem cell transplant for her multiple myeloma. She's on dialysis, in her 50's, and completely worn out from being ill. She's scared and pretty down in the dumps. If there's any way you could contact me (perhaps share your positive experience with her) I'd greatly appreciate it.

thanks and congratulations!

Laura G, from Tulsa
9189789815
lollypie@gmail.com
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Old 07-28-2011, 11:31 PM
 
Location: Mostly in my head
19,631 posts, read 53,468,042 times
Reputation: 18538
Buddy last posted in 2009, don't think he will respond. Also dangerous to put so much personal info on web, for spammers or other obnoxious/dangerous people to get.
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