Hello,
My whole plan with my multiple myeloma is as many drug-free periods as possible for quality of life. I have 11:14 deletion, kappa light chain multiple myeloma. Nine years ago I did 9 months of Velcade and dexamethasone, followed by an autologous stem cell transplant. No maintenance after transplant. Drug-free until January 2015, went straight to another auto, added Cytoxan to the auto with the melphalan. No maintenance, so no drugs since. This week's test shows still CR, great hemoglobin also (14+). Test every three months, I had two rounds of vaccinations done following transplant. If I remember, I take a vitamin daily. I try to exercise regularly.
I have a totally normal quality of life. Sometimes, no drugs are the best medicine. But then just because it works in my case, that doesn't mean it will work all cases. But it is a great option that should be part of the consideration for some low-risk patients. Even for a patient like me who caught multiple myeloma late (almost total kidney failure, light chains off the charts).
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Re: Is it okay that I'm not receiving treatment right now?
Hi jjc,
Thank you so much for sharing your experiences of multiple myeloma, you are certainly showing an impressive response, nine years plus ! I also feel that a minimal level of treatment is to be prefered provided it is working reasonably well.
As I sit here to reply to you, I cannot help but think that things could be much worse. My state of health is such that I would not even bother to visit the family doctor if it were not for the blood test results! It demonstrates how people can have this illness for so long without even knowing.
Your post gives me hope and plenty to think about. Interestingly, most of my unpleasant symptoms have been from the treatments rather than the disease.
Best wishes
Thank you so much for sharing your experiences of multiple myeloma, you are certainly showing an impressive response, nine years plus ! I also feel that a minimal level of treatment is to be prefered provided it is working reasonably well.
As I sit here to reply to you, I cannot help but think that things could be much worse. My state of health is such that I would not even bother to visit the family doctor if it were not for the blood test results! It demonstrates how people can have this illness for so long without even knowing.
Your post gives me hope and plenty to think about. Interestingly, most of my unpleasant symptoms have been from the treatments rather than the disease.
Best wishes
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Is it okay that I'm not receiving treatment right now?
Victor,
One another note. In 2013 and 2014 my kappa light chains were creeping up and out of normal range, but we didn't go to treatment until they jumped up quickly in November 2014. Then my doctor suggested a few months of Velcade followed by auto transplant. But we farm and that would have put the transplant during spring planting and also during the arrival of our twin granddaughters. So my doctor adjusted the plan, added the Cytoxan to the transplant and I was able to help with planting and take care of precious twins for three months five days a week during the summer.
So, as you can see, I am very proactive on living life.
Best of luck to you. I don't know if it applies, but there is a thought by some in the medical community that if you use all the guns up front on multiple myeloma you may get a great response. But, when the multiple myeloma starts being active again, it is much harder to control and often the drugs are not effective. Sometimes less is more.
Best of luck to you, enjoy those drug free times!!!
jjc
One another note. In 2013 and 2014 my kappa light chains were creeping up and out of normal range, but we didn't go to treatment until they jumped up quickly in November 2014. Then my doctor suggested a few months of Velcade followed by auto transplant. But we farm and that would have put the transplant during spring planting and also during the arrival of our twin granddaughters. So my doctor adjusted the plan, added the Cytoxan to the transplant and I was able to help with planting and take care of precious twins for three months five days a week during the summer.
So, as you can see, I am very proactive on living life.
Best of luck to you. I don't know if it applies, but there is a thought by some in the medical community that if you use all the guns up front on multiple myeloma you may get a great response. But, when the multiple myeloma starts being active again, it is much harder to control and often the drugs are not effective. Sometimes less is more.
Best of luck to you, enjoy those drug free times!!!
jjc
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jjc
Re: Is it okay that I'm not receiving treatment right now?
Hi jjc,
Thank you for that, I can tell that you are a great fighter ! At the first hint of trouble I asked my family doctor to contact the hematologist. That was seven months ago, the department are fully aware but they just want to wait ! I understand that no two people are exactly alike, and when I read how badly affected some people are very early in the disease, I think I have a lot to be grateful for. I also keep hearing that not only are there some pretty exciting new drugs available but that also the doctors are learning how to use the existing drugs to get the best effect.
Thank you for that, I can tell that you are a great fighter ! At the first hint of trouble I asked my family doctor to contact the hematologist. That was seven months ago, the department are fully aware but they just want to wait ! I understand that no two people are exactly alike, and when I read how badly affected some people are very early in the disease, I think I have a lot to be grateful for. I also keep hearing that not only are there some pretty exciting new drugs available but that also the doctors are learning how to use the existing drugs to get the best effect.
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
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