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liz
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| Joined: | Tue Jun 30th, 2009 |
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Posted: Tue Jun 30th, 2009 05:23 pm |
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My 60 yr, old husband was diagnosed 1 year ago with Multiple Myeloma after he was having heart failure and total Kidney failure. After we went to the hospital for a heart cath, they discovered his kidney failure. Over the course of 2 days, all the news went from bad to worse. The good part was that at least we knew what we were dealing with.
At diagnosis, his M- spike was 4.67. My husband was treated with Thalomid. His kidney and heart problems resolved almost immediately. He received kyphoplasty for 2 collapsed vertebrae.
We had our first relapse 4 months later when his M-Spike started shooting up again.
Now he has been on Velcade & Doxil since November. We had major episodes of low platelets and anemia, but those issues seem to be resolved.
We were so happy because we seemed to be in complete remission with a very low M- Spike....
Jan ( .4), Feb (.3), March - too low to measure, April (.4), May ( .6) and then it jumped to 2.4 in June. His creatine had also jumped from normal to 1.6, not too high, but still a concern.
We have been trying to treat the cancer with drug therapy... now not sure what way to go. The Dr. Office called yesterday and suggested we put him in a clinical trial.
We had hoped drug treatment would work for him. His Dr. does not believe in Transplants but did tell us it was an option at the beginning of our treatment. I am just trying to explore our options now. Has anyone else had a transplant late in the game? Is it too late?
Lots of decisions.
Thanks for any advice.
Liz
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Posted: Wed Jul 1st, 2009 07:06 pm |
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Hi Liz,
Transplants can be very effective in achieving long periods of remission and since your husband has not achieved the desired results with the current treatment, I would definitely explore that option. The first step will be to see if he is a candidate for a transplant so you know whether or not a transplant is even possible. Our myeloma specialists here at Huntsman Cancer Institute would be happy to see your husband and get you an answer to that question if you would like their help.
Sometimes it's good to turn to more aggressive treatment and it can really pay off in the long run. We typically treat our patients with tandem (two) autologous stem cell transplants as intitial treatment (not just after a patient relapses), plus maintenance therapy to keep the myeloma from coming back. This treatment has proven to have a median survival rate of 10 years or more.
We believe treating multiple myeloma aggressively on the front end is the key to long periods of remission, a longer life, and a better quality of life for multiple myeloma patients.
If you hit the myeloma cells hard at the beginning, you will catch them off guard. Whereas, if you take the approach of starting off with less aggressive treatment and only moving to more aggressive treatment if a patient relapses, the myeloma cells have in meantime grown smarter. The myeloma cells sense that you are trying to get rid of them, and they have time to grow resistant to treatment. We believe that treatment will therefore ultimately be less effective.
I wish you and your husband all the best. Let us know if you have any follow up questions for us.
Take care,
Myeloma Chat Moderator
Huntsman Cancer Institute
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liz
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Posted: Mon Sep 21st, 2009 06:28 am |
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Now I wonder how long someone can live with no treatment...
Numbers are really high. 6.1 m spike, 22.4 beta 2 microglobulin. I am just trying to get a feel for things. That was a month ago.
My husband won't consider a transplant.
I need a counselor or someone to talk to. I spend all my time reading everything I can about this disease. I feel frustrated and at loose ends as I see his health deteriorate. There doesn't seem to be any answers for me.
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Posted: Mon Sep 21st, 2009 07:35 pm |
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Hi Liz,
I am sorry to hear about your husband's deteriorating health. As I said before, we would recommend a transplant for his treatment if he is still a candidate. Transplants have been proven to be very effective and your husband is only 60, which is certainly not too old to disqualify him from having one. We've seen patients in their 80s go through transplants and do very well. Whether or not he can have a transplant will at this point depend on his overall state of health. He still needs to be healthy enough to safely get through it. A transplant can be a lot to go through for some, but it can really pay off in the end.
But, of course, treatment is all very personal and really up to the patient and his/her family to decide. We just hate to hear that he's not doing so well.
I would certainly go talk to a counselor. This must be a very stressful time for you, and you need someone to talk to. Also, have you looked to see whether there are any support groups for myeloma caregivers in your area?
If there's anything we can do for you, please let us know.
Chat Moderator
Huntsman Cancer Institute Myeloma Program
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