My husband started treatment for multiple myeloma April 1st (and it was NO joke). He has completed 2 of the 4 cycles of initial treatment prescribed. After this, he'll have a stem cell transplant. He is taking Kyprolis as part of the treatment, and the results after the first cycle were promising and we are encouraged.
Our question is this, will he ever be off of medicine ever again? Or will he have to be on some kind of medicine (maintenance at a minimum) for the rest of his life, even if he has a complete, or almost complete response? We were feeling good about the progress until a friend with multiple myeloma told us we would be on medication forever. Can you ever go back to an MGUS level, and wait and watch?
Also, once you use a drug, like Kyprolis, can you ever us it again if you stop?
Thanks!
Sandy
Forums
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SandyC63 - Name: SandyC
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: 2012
- Age at diagnosis: 51
Re: Is there life without drugs after starting treatment?
Hi Sandy111, I have been treated for myeloma and am now off of treatments. I did have induction chemo, an auto stem cell transplant and a year of low dose chemo after the transplant. I have been in remission for three years and off of chemo drugs for two years. So far this is working out well! If I were to relapse I am sure I would need to be back on chemotherapy again though.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Is there life without drugs after starting treatment?
Hi Nancy,
Thanks so much for your response! This is what we were hoping, but got very concerned that we may never be off of medications, regardless of how he does on this journey.
I wish you continued remission. Since you have been off of medication, how do you feel? Is it too much to wish for a more "normal" feeling after all he might put his body through?
Thanks again,
Sandy
Thanks so much for your response! This is what we were hoping, but got very concerned that we may never be off of medications, regardless of how he does on this journey.
I wish you continued remission. Since you have been off of medication, how do you feel? Is it too much to wish for a more "normal" feeling after all he might put his body through?
Thanks again,
Sandy
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SandyC63 - Name: SandyC
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: 2012
- Age at diagnosis: 51
Re: Is there life without drugs after starting treatment?
Hi Sandy, in answer to your question, I do feel really well again! It certainly was a longish journey but am fine now. I did have injuries at the time of my dx, which took a while to heal up, and I have to be careful with lifting, etc. But I am happy to be well and the lingering effects of the drugs gradually wore off. I have some neuropathy still, but it is not disabling. I think it would be difficult to emerge unscathed from such a disease, even psychologically, but i can't complain!
I am glad that I also found the Myeloma Beacon to read and participate in with the Forums and columns, and I hope that you learn a lot from this site too!
I am glad that I also found the Myeloma Beacon to read and participate in with the Forums and columns, and I hope that you learn a lot from this site too!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Is there life without drugs after starting treatment?
Many people do have long periods of being drug free. My husband's transplant was 1.5 years ago. He has never been able to be off medication, but he says that he feels "normal". The only thing different I notice about him is a little more fatigue (minor). He is a physician. He now only works 2 days a week (his choice). On the days he does work, he comes home for lunch and takes about a 10 minute cat nap.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Is there life without drugs after starting treatment?
Hi Sandy111,
I am new to The Myeloma Beacon. Actually, this is my first post. I feel compelled to respond to your question because I have the same concerns. I was diagnosed with MUGUS in 2011. My labs never went down after the initial diagnosis. They got worse every time I my blood was tested. In June 2012 I went into full blown multiple myeloma. I was treated with 3 cycles of Velcade/Dex/Remlivid and had an Auto SCT on 9/17/12. I am participating in a clinical study where the patient receives a second Auto SCT within six months after the first. The clinical trial requires me to receive Melphalan with the addition of 2 doses of Velcade. That took place on 3/15/13. It has been three months since the second transplant. I feel great. The first one was much easier than the second. I have no M-spike and everything on my labs looks great according to my doc. He told me last Thursday that I am in complete total remission. As part of the clinical study I have to have labs performed every month. I see the same people coming in for their chemo. Some of them come once a week and others twice a week. I think in the back of my mind that could be me some day. So far, it has not been necessary for me to take any medication post-transplant other than an anti-viral so I don’t get shingles. I have not had any chemo since March 2013. I know it has only been three months but it is such a freedom. I feel so blessed. I hope and pray to continue to be chemo-free. There is hope, right?
I wish you the best of luck.
I am new to The Myeloma Beacon. Actually, this is my first post. I feel compelled to respond to your question because I have the same concerns. I was diagnosed with MUGUS in 2011. My labs never went down after the initial diagnosis. They got worse every time I my blood was tested. In June 2012 I went into full blown multiple myeloma. I was treated with 3 cycles of Velcade/Dex/Remlivid and had an Auto SCT on 9/17/12. I am participating in a clinical study where the patient receives a second Auto SCT within six months after the first. The clinical trial requires me to receive Melphalan with the addition of 2 doses of Velcade. That took place on 3/15/13. It has been three months since the second transplant. I feel great. The first one was much easier than the second. I have no M-spike and everything on my labs looks great according to my doc. He told me last Thursday that I am in complete total remission. As part of the clinical study I have to have labs performed every month. I see the same people coming in for their chemo. Some of them come once a week and others twice a week. I think in the back of my mind that could be me some day. So far, it has not been necessary for me to take any medication post-transplant other than an anti-viral so I don’t get shingles. I have not had any chemo since March 2013. I know it has only been three months but it is such a freedom. I feel so blessed. I hope and pray to continue to be chemo-free. There is hope, right?
I wish you the best of luck.
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mmls - Name: Lynne
- Who do you know with myeloma?: self
- When were you/they diagnosed?: June 2012
- Age at diagnosis: 57
Re: Is there life without drugs after starting treatment?
I have been off medication for over 4 years! I had two stem cells transplants (as part of a clinical trial) around March 2006 and again in September 2006. I had suffered a broken thigh bone as a result of the disease so I also had two surgeries which added more challenges during my recovery. I am in complete remission and went to back working full-time over 4 years ago. I still have some peripheral neuropathy in my feet, and still have slightly less energy, but besides that, I live a pretty active life. I only go for checkups (xrays, blood work) every 6 months. I was relatively young at the time (49); now I'm 57.
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lyndaclark - Who do you know with myeloma?: Self
- When were you/they diagnosed?: August 2005
- Age at diagnosis: 49
Re: Is there life without drugs after starting treatment?
When in the middle of treatment, it is impossible to completely see how recovery might work. In my case, I was diagnosed at age 51, completed 3 rounds of induction chemo, then autologous stem cell transplant. The result was good. I continued monthly infusions of zometa for another 10 months, but no other drugs. The complete remission took awhile to arrive (14 months after transplant), but I'm 61 now and my transplant was 9 years ago. I have been off infusions and other chemo drugs for 8 years. It is possible, though many will tell you otherwise.
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Pat Pendleton
Re: Is there life without drugs after starting treatment?
Thought I would add my 2 cents worth here - there is good news and bad new - first the good - I was treated in 2004 in my mid 60's for about 10 months with thalid/dex nothing else I have been off the drugs sense then and am now almost 75 years old (aug) - the bad news is I have never felt very good since my initial treatment and have been unable to walk with out pain due to both my degenerated back and a foot condition that attacked me upon ending my initial treatment -this is limiting my walkng and contributing to my physical decline - I get out of breath quite easly and can no longer get off the floor if I kneel down unless I am able to help using my hands - this is quite a let down from my earlier physical condition where by I could lift over 1200 lbs off the floor with my legs & over 800 lbs with my arms and back . I am still able to mow my lawn with a riding mower but that is the limitation of my yard care capabilities . my hobbies have went by the way side I now either do research on the computer or watch TV . I do have to go in for blood work every 4 months . N G
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Is there life without drugs after starting treatment?
Dear Sandy,
With the increasing use of maintenance therapy after transplant (and after non-transplant therapy for that matter), life without drugs is not as commonplace as it used to be. Revlimid as a maintenance therapy after transplant significantly prolonged freedom from progression of myeloma and overall survival in a US study. The data with Velcade as a maintenance therapy after transplant are also encouraging. As with anything we do, it is important to understand the risks and benefits of any of these interventions. Revlimid can cause fatigue, diarrhea or constipation, muscle cramping, rash -- the slightly increased risk of second cancers has been covered extensively in the Myeloma Beacon and is another important consideration. Most of our patients on maintenance therapy do quite well and are able to go about their daily lives with few hindrances. It is easier than induction chemotherapy and transplant for sure! Given the significant prolongation of remission and survival advantage seen in the US study, many patients elect to pursue Revlimid maintenance therapy. No decisions are final -- if it is poorly tolerated, one can always stop. Some of our lower risk patients (for example, stage I at diagnosis, not suffering from excessive complications of their myeloma at diagnosis, hyperdiploid cytogenetics, CR after transplant) opt to not pursue maintenance at all. It is an important decision. As your husband and his doctor get closer to the time to make that decision, make sure you understand the risks and benefits of maintenance vs. no maintenance and that your doctor understands your position on the matter.
Best of luck!
Pete V.
With the increasing use of maintenance therapy after transplant (and after non-transplant therapy for that matter), life without drugs is not as commonplace as it used to be. Revlimid as a maintenance therapy after transplant significantly prolonged freedom from progression of myeloma and overall survival in a US study. The data with Velcade as a maintenance therapy after transplant are also encouraging. As with anything we do, it is important to understand the risks and benefits of any of these interventions. Revlimid can cause fatigue, diarrhea or constipation, muscle cramping, rash -- the slightly increased risk of second cancers has been covered extensively in the Myeloma Beacon and is another important consideration. Most of our patients on maintenance therapy do quite well and are able to go about their daily lives with few hindrances. It is easier than induction chemotherapy and transplant for sure! Given the significant prolongation of remission and survival advantage seen in the US study, many patients elect to pursue Revlimid maintenance therapy. No decisions are final -- if it is poorly tolerated, one can always stop. Some of our lower risk patients (for example, stage I at diagnosis, not suffering from excessive complications of their myeloma at diagnosis, hyperdiploid cytogenetics, CR after transplant) opt to not pursue maintenance at all. It is an important decision. As your husband and his doctor get closer to the time to make that decision, make sure you understand the risks and benefits of maintenance vs. no maintenance and that your doctor understands your position on the matter.
Best of luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
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