I haven’t commented here in a while as I’ve been back at work full time, and enjoying a maintenance free complete response for the past 2 years. But…all good things must come to an end, and I am now relapsing.
My cancer history is as follows. I was diagnosed with breast cancer in March, 2014. I was successfully treated with no recurrence so far. I then was diagnosed with myeloma (IgG kappa, standard risk) in November 2015 with numerous lytic lesions (2 fractured ribs and a femur requiring pinning) and an M-spike of 5.5 g/dL (55 g/l), although no kidney involvement.
My induction therapy was 4 cycles of CyBorD (cyclophosphamide, bortezomib, and dexamethasone), which brought my M-spike down to 0.3 g/dL prior to my stem cell transplant in April 2016. I responded well to the transplant and was in stringent complete response by end May 2016. I opted not to go on maintenance therapy because of my previous history of breast cancer, concern for secondary cancers, and quality of life considerations.
The past two years have been wonderful without any medication. However, in May 2018 the M-spike was no longer “not detectable” but rather rated as “trace” on the SPEP test. By July 2018, my M-spike was quantifiable at 0.2 and late in August it was at 0.3. I’m also feeling very tired and experiencing bone pain in the same two ribs that were fractured back at time of diagnosis.
I have been discussing treatment options with my doctor and I realize there are a whole gamut of options available to me as I’ve only had CyBorD and a stem cell transplant so far. However, I am wondering if there are any options that other forum members might feel would be best given the treatments I've had thus far and what my response to treatment has been?
Thank you.
Forums
5 posts
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: Treatment after CyBorD induction & stem cell transplant?
I suggest taking a look at Mayo's mSMART treatment guidelines, which represent the consensus opinion of Mayo's multiple myeloma doctors.
https://www.msmart.org/mm-treatment-guidelines
https://www.msmart.org/mm-treatment-guidelines
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Treatment after CyBorD induction & stem cell transplant?
Thanks, Andrew. It's interesting that the Mayo Clinic is suggesting triplet therapies for relapses. I live in Canada, and my doctor and I discussed numerous options, but none were triplets. My relapse seems to be fairly indolent, and it has been decided that I'll go on Revlimid and dexamethasone. I've not used Revlimid before, and I am keeping my fingers crossed that the side effects won't be too bad.
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: Treatment after CyBorD induction & stem cell transplant?
Hello Karen,
Welcome back to the forum, but I am sorry that your myeloma is starting to relapse.
In Ontario recently there has been approval for Velcade (bortezomib) to be used more than for one set of therapy. That is, if you had the drug in induction therapy, previously it could not be used again, but now it can be. You are probably not resistant to that drug.
And for 'triplets', it seems that Health Canada has approved daratumumab (Darzalex) to be used along with Velcade or Revlimid plus dex. However, those regimens aren't reimbursed yet by provincial health plans. Another option is Pomalyst, and carfilzomib (Kyprolis) is now funded in Ontario, as of July 2018.
I think that Revlimid will always be helpful since so far it is the only oral drug available. I did wonder, however, if taking that drug after the high dose melphalan used in the stem cell transplant might have caused my breast cancer. I was thankful it was caught early. Breast cancer is a very common cancer for women though, so I can't be sure about that.
Ninlaro (ixazomib), another oral drug, is approved by Health Canada, but is not reimbursed widely, as far as I know.
There are also clinical trials available to some patients, but if one has had another cancer, there is a waiting period before one could be accepted onto a trial. I think it varies from 3 - 5 years, but it would depend on the specific trial.
I wanted to ask you if you were taking some sort of maintenance for the breast cancer. I also have had that cancer, in 2015, and after the surgery and radiation I started to take an estrogen inhibiting drug called anastrozole. I am taking that for up to five years, and am on the third year of it. I had the type of cancer that would respond to that drug.
I think that probably you have mulled over some of these ideas with your specialist too.. Really best wishes on getting back into a remission!
Welcome back to the forum, but I am sorry that your myeloma is starting to relapse.
In Ontario recently there has been approval for Velcade (bortezomib) to be used more than for one set of therapy. That is, if you had the drug in induction therapy, previously it could not be used again, but now it can be. You are probably not resistant to that drug.
And for 'triplets', it seems that Health Canada has approved daratumumab (Darzalex) to be used along with Velcade or Revlimid plus dex. However, those regimens aren't reimbursed yet by provincial health plans. Another option is Pomalyst, and carfilzomib (Kyprolis) is now funded in Ontario, as of July 2018.
I think that Revlimid will always be helpful since so far it is the only oral drug available. I did wonder, however, if taking that drug after the high dose melphalan used in the stem cell transplant might have caused my breast cancer. I was thankful it was caught early. Breast cancer is a very common cancer for women though, so I can't be sure about that.
Ninlaro (ixazomib), another oral drug, is approved by Health Canada, but is not reimbursed widely, as far as I know.
There are also clinical trials available to some patients, but if one has had another cancer, there is a waiting period before one could be accepted onto a trial. I think it varies from 3 - 5 years, but it would depend on the specific trial.
I wanted to ask you if you were taking some sort of maintenance for the breast cancer. I also have had that cancer, in 2015, and after the surgery and radiation I started to take an estrogen inhibiting drug called anastrozole. I am taking that for up to five years, and am on the third year of it. I had the type of cancer that would respond to that drug.
I think that probably you have mulled over some of these ideas with your specialist too.. Really best wishes on getting back into a remission!
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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: Treatment after CyBorD induction & stem cell transplant?
Hi Nancy,
Good to hear from you, and thanks for all your good information.
In addition to the various treatments mentioned by you, my doctor and I had also discussed trying bortezomib (Velcade) again since it had worked well during my induction therapy. In the end, I opted not to go with it for a few reasons:
1) bad side effects the first time (neuropathy and eye issues, and
2) the inconvenience.
A second stem cell transplant was another option, but the toxicity of melphalan concerned me as did the fact that the majority of second transplants only last about half as long as the first one.
In the end, Revlimid and dexamethasone seemed to be the best fit for my current circumstances.
Yes, I’m taking Femara (letrozole) for breast cancer, which I’ve been on for 3 years. I’ll have to be vigilant for blood clots (I'm taking aspirin daily), which are a side effect of both Femara and Revlimid.
Thanks for your good wishes, and I’m glad to read that you are doing so well.
Karen
Good to hear from you, and thanks for all your good information.
In addition to the various treatments mentioned by you, my doctor and I had also discussed trying bortezomib (Velcade) again since it had worked well during my induction therapy. In the end, I opted not to go with it for a few reasons:
1) bad side effects the first time (neuropathy and eye issues, and
2) the inconvenience.
A second stem cell transplant was another option, but the toxicity of melphalan concerned me as did the fact that the majority of second transplants only last about half as long as the first one.
In the end, Revlimid and dexamethasone seemed to be the best fit for my current circumstances.
Yes, I’m taking Femara (letrozole) for breast cancer, which I’ve been on for 3 years. I’ll have to be vigilant for blood clots (I'm taking aspirin daily), which are a side effect of both Femara and Revlimid.
Thanks for your good wishes, and I’m glad to read that you are doing so well.
Karen
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
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