My husband broke his back in 2003 and had experimental surgery now known to cause cancer. In September 2013 he has diagnosed with multiple myeloma at 50% with very little hope given us. He had radiation to reduce some of the painful tumors. For at least three years his pain caused by tumors was diagnosed as arthritis due to his spinal injury when he actually has several tumors from his skull down to both hips.
After chemotherapy for four months he was re-tested; bone morrow, blood, urine and told he was now "unbelieveably" at ZERO %. He was juicing and on a mostly vegan diet. No one we have spoken to has gone to ZERO.
Because he is on medicare, most treatment centers will not accept him. How "unbelieveable" is this, really?
Is there an average remission rate?
The doctor wants him to have 2 years of follow up chemo.
Pain and tumors are still there per full body x ray, but are reduced in size. Numbness in one arm due to tumor on shoulder. Sharp pain in both thighs. He tires easily and is weak.
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patsibeaven - Name: Patsi
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September 2013
- Age at diagnosis: 62
Re: Remission questions
Multiple Myeloma is a very heterogeneous disease that effects most people differently. It is not unusual that after initial induction therapy with VRD or something similar that patients have a very good partial response (VGPR) or even a complete response (CR). Normally the induction therapy is followed either with an autologous stem cell transplant (ASCT) or continued VRD treatment with eventual transfer to a maintenance protocol. (That is the route I took).
How long someone remains in a remissive state varies depending upon the aggressiveness of the cancer they have. In my case I have been remissive (low level of multiple myeloma present) for over 5 years. Others relapse sooner than that.
Eventually all of us will relapse at some point, but that just means the mix of chemo has to be changed and there can be a series of remissions and relapses.
Everyone's journey is different and the good news is that new therapies are coming out all of the time prolonging life and leading hopefully to a cure.
Ron
How long someone remains in a remissive state varies depending upon the aggressiveness of the cancer they have. In my case I have been remissive (low level of multiple myeloma present) for over 5 years. Others relapse sooner than that.
Eventually all of us will relapse at some point, but that just means the mix of chemo has to be changed and there can be a series of remissions and relapses.
Everyone's journey is different and the good news is that new therapies are coming out all of the time prolonging life and leading hopefully to a cure.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Remission questions
My husband has had a similar response - no sign of cancer in urine, blood, or bone marrow. He is going to start consolidation treatment in July (6 months post transplant). This was recommended to keep relapse away for good. We are okay with that and view it as simply taking medication - just like diabetics, high blood pressure. It is just that his treatment is a chemo shot.
Keep living and don't be stalled by the 2-year plan. Be grateful for the great results.
Wishing you the best.
Keep living and don't be stalled by the 2-year plan. Be grateful for the great results.
Wishing you the best.
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Remission questions
My husband was diagnosed in September 2006. He was in a clinical trial - thalidomide, Doxil, dexamethasone - starting in January of 2007, following radiation for plasmacytoma of the sternum. He was in complete remission in the middle of 2007, and continued chemo until the end of the year.
In January of 2008, he had a stem cell transplant, and has been in complete remission, no sign of disease.
We are very pleased with the results. He just had his 6 month follow up, and still no sign of disease. We are looking forward to a long life together.
In January of 2008, he had a stem cell transplant, and has been in complete remission, no sign of disease.
We are very pleased with the results. He just had his 6 month follow up, and still no sign of disease. We are looking forward to a long life together.
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marge2006
Re: Remission questions
Patisbeaven-
I just read your initial post and noticed your statement about being on Medicare and that no treatment centers will accept you. I have 2 questions about this:
1) Do you have traditional Medicare? From my understanding most doctors will accept traditional Medicare patients. If you have one of the Advantage Medicare plans, then it's possible that the centers in your area don't have contracts with the insurance companies that provide Advantage plans. If that is the case, switch to traditional Medicare when you can, even if it ends up being more expensive.
2) Where do you live. If you live near a major research cancer center with a myeloma specialist(s), they often are NCI certified and have to accept your insurance, or work out a payment plan for you. You might have to get your insurance to authorize you going out of network to get treated if you have either an HMO or Advantage plan. Talk with customer service at your insurance company to get help in finding a myeloma doctor who will accept your husband as a patient.
Many people reach 0% with treatment. Some reach that level quickly and some more slowly and others never. I reached that level 8 months after my stem cell transplant and remained at that level for a year. Then my m-spike increased to 0.6 g/dl and stayed there for another 2 years before I relapsed.
I have been in treatment again for 20 months with Revlimid / dex and have remained steady at about 0.6 - 0.8 g/dl for the last 18 months. Both my doctor and I are happy with this steady state since I don't seem to be having any new problems develop in spite of an m-spike. All of my other blood test levels are in the normal range except for my free light chain ratio, which is high, but also at a steady state.
Nancy in Phila
I just read your initial post and noticed your statement about being on Medicare and that no treatment centers will accept you. I have 2 questions about this:
1) Do you have traditional Medicare? From my understanding most doctors will accept traditional Medicare patients. If you have one of the Advantage Medicare plans, then it's possible that the centers in your area don't have contracts with the insurance companies that provide Advantage plans. If that is the case, switch to traditional Medicare when you can, even if it ends up being more expensive.
2) Where do you live. If you live near a major research cancer center with a myeloma specialist(s), they often are NCI certified and have to accept your insurance, or work out a payment plan for you. You might have to get your insurance to authorize you going out of network to get treated if you have either an HMO or Advantage plan. Talk with customer service at your insurance company to get help in finding a myeloma doctor who will accept your husband as a patient.
Many people reach 0% with treatment. Some reach that level quickly and some more slowly and others never. I reached that level 8 months after my stem cell transplant and remained at that level for a year. Then my m-spike increased to 0.6 g/dl and stayed there for another 2 years before I relapsed.
I have been in treatment again for 20 months with Revlimid / dex and have remained steady at about 0.6 - 0.8 g/dl for the last 18 months. Both my doctor and I are happy with this steady state since I don't seem to be having any new problems develop in spite of an m-spike. All of my other blood test levels are in the normal range except for my free light chain ratio, which is high, but also at a steady state.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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