I was diagnosed in May of 2014. I am a 47 year old female. I just completed my 1st round - 3rd cycle of CyBorD (cyclophosphamide + Velcade + dexamethasone).
I was initially told by my doctor that I would only need 3 cycles since I'm considered low-risk. He said if my bone marrow biopsy showed less than 10% plasma cells, then I would be considered in remission and could have an autologous stem cell transplant (SCT).
After having the biopsy last week and seeing him yesterday, he told me my results. I have 5% plasma cells and all other levels are normal, and he said that I have responded very well to the treatment. However, he now wants me to continue treatment for another 1-2 months.
Also, I asked him what his reasoning was to keep me on chemo another month or two if I'm already in remission, and now he stated that he wants me to get to 1% plasma cells instead of 5.
I'm being seen at Banner MD Anderson Cancer Center (near Phoenix, AZ). This new hospital has not been FACT accredited by my insurance company and won't be for another month or two. Therefore they cannot do my transplant there until it's approved. They said they could send me to Mayo and have it done now instead of waiting.
At this point I don't know if I even want to have the transplant. I asked my doctor if I decided not to do the transplant, what would be the next step. He said I would have to be on chemo for a year.
That doesn't sound right. Why would I need to be on chemo for a year if I'm in remission?
I then asked him if it was possible to harvest my stem cells, and he stated to me that it wouldn't be an option because my insurance company wouldn't pay for it.
Is this true?
I asked him if I decided to go through with the transplant, what would maintenance treatment consist of afterward. He said an oral pill once a day of Revlimid for the rest of my life.
I'm so confused and any help anyone could provide is much appreciated. Thank you.
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6 posts
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Stayhealthe - Name: Pattie
- Who do you know with myeloma?: No one
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 47
Re: Recently diagnosed - have questions about treatment
Pattie,
You are asking a lot of questions
It is very confusing to get one's head around all this in the early days...but you will feel a lot less confused with time. This might help you a bit.
Q: " Why would I need to be on chemo for a year if I'm in remission?"
A: You shouldn't confuse induction therapy (the therapy that precedes a transplant or stem cell collection or initial treatment to try to get as deep an initial response as possible) with consolidation therapy (the therapy that reinforces the gains made during induction therapy). Doing drug therapy for the first 12 months when one doesn't do a transplant is not atypical. To get an idea of what the Mayo generally recommends, see the non-transplant eligible section here: http://www.msmart.org/newly%20diagnosed%20myeloma.pdf
Q: I then asked him if it was possible to harvest my stem cells, and he stated to me that it wouldn't be an option because my insurance company wouldn't pay for it. Is this true?
A: It depends on the insurance company. Medicare doesn't cover stem cell storage. My insurance does. Others can vary. You need to ask your insurance provider. And you need to check with the facility that is collecting the stem cells.
Q: I asked him if I decided to go through with the transplant, what would maintenance treatment consist of afterward. He said an oral pill once a day of Revlimid for the rest of my life.
A: This is a heated topic on this forum and there is not consensus amongst doctors on this topic. Different docs have different opinions on the recommended maintenance period that range from 1 to 3 years, as well as to doing maintenance indefinitely (as your doc suggested). The maintenance period can also depend on the individual's medical situation and how well they tolerate the drug(s). In some cases, you will also find that patients on this site are basically just extending the drug therapy they used for consolidation therapy as their ongoing "maintenance therapy". So, as you can see, these various phases of therapy can quickly get blurred. Also note that maintenance therapy can apply to both transplant and non-transplant patients. You can use the advanced search function on this site to find these discussions.
Regarding whether to transplant or not, you might find this thread to be helpful as a starting point. There are also many other threads on this site regarding this topic:
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
Hope this helps a bit...
You are asking a lot of questions
It is very confusing to get one's head around all this in the early days...but you will feel a lot less confused with time. This might help you a bit.Q: " Why would I need to be on chemo for a year if I'm in remission?"
A: You shouldn't confuse induction therapy (the therapy that precedes a transplant or stem cell collection or initial treatment to try to get as deep an initial response as possible) with consolidation therapy (the therapy that reinforces the gains made during induction therapy). Doing drug therapy for the first 12 months when one doesn't do a transplant is not atypical. To get an idea of what the Mayo generally recommends, see the non-transplant eligible section here: http://www.msmart.org/newly%20diagnosed%20myeloma.pdf
Q: I then asked him if it was possible to harvest my stem cells, and he stated to me that it wouldn't be an option because my insurance company wouldn't pay for it. Is this true?
A: It depends on the insurance company. Medicare doesn't cover stem cell storage. My insurance does. Others can vary. You need to ask your insurance provider. And you need to check with the facility that is collecting the stem cells.
Q: I asked him if I decided to go through with the transplant, what would maintenance treatment consist of afterward. He said an oral pill once a day of Revlimid for the rest of my life.
A: This is a heated topic on this forum and there is not consensus amongst doctors on this topic. Different docs have different opinions on the recommended maintenance period that range from 1 to 3 years, as well as to doing maintenance indefinitely (as your doc suggested). The maintenance period can also depend on the individual's medical situation and how well they tolerate the drug(s). In some cases, you will also find that patients on this site are basically just extending the drug therapy they used for consolidation therapy as their ongoing "maintenance therapy". So, as you can see, these various phases of therapy can quickly get blurred. Also note that maintenance therapy can apply to both transplant and non-transplant patients. You can use the advanced search function on this site to find these discussions.
Regarding whether to transplant or not, you might find this thread to be helpful as a starting point. There are also many other threads on this site regarding this topic:
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
Hope this helps a bit...
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Recently diagnosed - have questions about treatment
Hi Pattie, I think it is good that you found the Beacon at an early stage in your treatments, since there are many knowledgeable patients, caregivers and doctors who post here.
I couldn't directly answer many of your questions, since I live in Canada and our health care system differs from yours in some ways, but as a patient I can relate to how confusing it is at first to comprehend just how long some myeloma patients can be on treatment, even though they have reached a remission.
I achieved a really good response to Velcade/dex after four cycles, and in my naiveté thought I was cured! Now I know that myeloma really is a disease that can be beaten back but rarely entirely eliminated, for the mutant plasma cells are still in ones bone marrow, although at very low, almost undecteable levels.
After the induction I went through an autologous stem cell transplant, and then followed that up with a year of low-dose Revlimid. Because I was in a remission by the end of all that, my doctor stopped my treatments (as I said, I live in a different country and treatments vary that way). In total, I had almost two years of treatments, and at the time thought it was all a bit much. But, in retrospect, I am grateful for that, for I am still here after five years and doing quite well. With myeloma though, one gets tested frequently in case of a recurrence.
Hope that helps. Food for thought. Many patients are treated for extensive periods of time.
I couldn't directly answer many of your questions, since I live in Canada and our health care system differs from yours in some ways, but as a patient I can relate to how confusing it is at first to comprehend just how long some myeloma patients can be on treatment, even though they have reached a remission.
I achieved a really good response to Velcade/dex after four cycles, and in my naiveté thought I was cured! Now I know that myeloma really is a disease that can be beaten back but rarely entirely eliminated, for the mutant plasma cells are still in ones bone marrow, although at very low, almost undecteable levels.
After the induction I went through an autologous stem cell transplant, and then followed that up with a year of low-dose Revlimid. Because I was in a remission by the end of all that, my doctor stopped my treatments (as I said, I live in a different country and treatments vary that way). In total, I had almost two years of treatments, and at the time thought it was all a bit much. But, in retrospect, I am grateful for that, for I am still here after five years and doing quite well. With myeloma though, one gets tested frequently in case of a recurrence.
Hope that helps. Food for thought. Many patients are treated for extensive periods of time.
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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: Recently diagnosed - have questions about treatment
Pattie, as many will say, you have taken the first step -- finding others with similar experiences! I was diagnosed in August of 2013 and was in crisis mode. I was in a lot of pain and weakened by the disease. I needed treatment and, after being found to be in stage III with 95% plasma cell involvement, I went right into induction therapy.
I was able to achieve remission with less than 5% plasma cell involvement and opted for an ASCT. After being informed that I had a very good partial response, I've now gone into a maintenance treatment plan of 10mg Revlimid for as long as I can tolerate it or until relapse.
I now, without the haze of pain, look to be active in my treatment plan. I read about my disease, follow others on the Myeloma Beacon, and stay engaged on all aspects of treatment to include monthly infusion of Zometa. If the doctor says my blood work looks good, I'll ask why. If I don't feel well, I tell someone.
Stay strong and stay engaged! Hope this helps.
Kully
I was able to achieve remission with less than 5% plasma cell involvement and opted for an ASCT. After being informed that I had a very good partial response, I've now gone into a maintenance treatment plan of 10mg Revlimid for as long as I can tolerate it or until relapse.
I now, without the haze of pain, look to be active in my treatment plan. I read about my disease, follow others on the Myeloma Beacon, and stay engaged on all aspects of treatment to include monthly infusion of Zometa. If the doctor says my blood work looks good, I'll ask why. If I don't feel well, I tell someone.
Stay strong and stay engaged! Hope this helps.
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Recently diagnosed - have questions about treatment
"Remission" is not the greatest word to use in multiple myeloma in my opinion. As the readers / posters on the forum can attest to, multiple myeloma unfortunately is not a curable disease, except for a small percentage of patients with very long lasting responses. I know that arguments can be made about the semantics of "cure," "long term response" or "remission" - a conversation the multiple myeloma specialists continue to debate.
Generally, therapy today for the newly diagnosed patient involves two avenues (although there are nuances), with two recent New England Journal of Medicine articles providing evidence for both (see references below).
Transplant Eligible Patients
In my clinic, a newly diagnosed multiple myeloma patient would get either VRD or VCD for 4-8 cycles with the goal of getting to HDM-ASCT by cycle 6 or so. Then we initiate maintenance therapy, if appropriate.
I recommend this pathway. However, patients have the right to choose to delay transplant, or not undergo it, for a number of reasons.
Transplant Ineligible Patients
(different definitions in the US vs rest of the world):
References
L Benboubker et al., "Lenalidomide and Dexamethasone in Transplant-Ineligible Patients with Myeloma," New England Journal of Medicine, September 4 2014; 371:906-917 (abstract) (related forum discussion)
A Palumbo et al, "Autologous Transplantation and Maintenance Therapy in Multiple Myeloma," New England Journal of Medicine, September 4, 2014, 371:895-905 (abstract) (related forum discussion)
D Avigan and J Rosenblatt, "Current Treatment for Multiple Myeloma," New England Journal of Medicine, September 4, 2014, 371:961-962 (first 100 words) (brief editorial/summary)
Generally, therapy today for the newly diagnosed patient involves two avenues (although there are nuances), with two recent New England Journal of Medicine articles providing evidence for both (see references below).
Transplant Eligible Patients
- Induction therapy – in the U.S., typically Velcade + cyclophosphamide+ dex (VCD, CyBorD); Velcade + Revlimid + dex (VRD, RVD); Revlimid + dex (RD); or Velcade + dex (VD) – with the goal of getting disease under control and arresting the organ damage being done
- High dose melphalan (HDM) with autologous stem cell support (the therapy is the melphalan, not the autologous stem cell transplant (ASCT), to gain deeper levels of control / response and improved long term control; and
- Maintenance therapy, consisting of low dose single-agent therapy (for the most part) to continue to provide improved control while maintaining quality of life.
In my clinic, a newly diagnosed multiple myeloma patient would get either VRD or VCD for 4-8 cycles with the goal of getting to HDM-ASCT by cycle 6 or so. Then we initiate maintenance therapy, if appropriate.
I recommend this pathway. However, patients have the right to choose to delay transplant, or not undergo it, for a number of reasons.
Transplant Ineligible Patients
(different definitions in the US vs rest of the world):
- Induction therapy - Depending on the patient's overall health and fitness, 3- or 2-drug combinations
- Continued therapy until relapse, with such therapy typically at a "maintenance" type dosing.
References
L Benboubker et al., "Lenalidomide and Dexamethasone in Transplant-Ineligible Patients with Myeloma," New England Journal of Medicine, September 4 2014; 371:906-917 (abstract) (related forum discussion)
A Palumbo et al, "Autologous Transplantation and Maintenance Therapy in Multiple Myeloma," New England Journal of Medicine, September 4, 2014, 371:895-905 (abstract) (related forum discussion)
D Avigan and J Rosenblatt, "Current Treatment for Multiple Myeloma," New England Journal of Medicine, September 4, 2014, 371:961-962 (first 100 words) (brief editorial/summary)
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Recently diagnosed - have questions about treatment
Pattie,
I would also compare those hospitals and find out from each how many transplants they each do per year. Experience counts - especially if you have a complication. You want someone who has seen / dealt with it before.
I would also compare those hospitals and find out from each how many transplants they each do per year. Experience counts - especially if you have a complication. You want someone who has seen / dealt with it before.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
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