My wife was diagnosed with multiple myeloma last November. We live in Montreal, Canada.
She had been experiencing pain in her hip for just a month when it grew worse quickly. After a CT scan they discovered lesions on her hip bone, and while waiting for more testing, her spleen ruptured.
She nearly died that day, but survived the emergency surgery. However, due to prolonged bleeding into her stomach before they figured out what was the problem, her kidneys shut down. Then, after extensive testing later that week, she was diagnosed with multiple myeloma. The exact words were "An aggressive case of multiple myeloma".
Her initial treatment was Velcade, Doxil, and dexamethasone. She responded well. And, of course, she was also placed on kidney dialysis 3 times a week (4 hours each stint).
The three-drug regimen brought her back to stable and she was released from the hospital after barely two months. Once home, she gained strength and became fairly ok, though much thinner and weaker.
She then began to develop tumors, first in her neck, and then several others spread throughout her body. She was placed on Revlimid, which worked remarkably well, eliminating the tumors.
On June first of this year, she had a stem cell transplant (using her own cells; she's 58). Once released from the hospital, she went from very weak and sleeping most of the time, all the way to near normal in under two months.
She gained back nearly all of her original pre-cancer weight, her vitality, mobility, etc. It's been amazing to see. And her chain protein level plummeted to around 30.
Now we are at day 100 of the post transplant period. While she is quite healthy, by our new standard, her chain proteins have increased to 100 and she has two small tumors that have developed. She will begin the Revlimid and dexamethasone again tomorrow morning.
We saw the oncologist today, and she will attempt to get approval for her to begin a new drug called carfilzomib (Kyprolis) to go along with the Revlimid. This is a problem in Canada due to its price. It is currently not covered by the government, as everything else has been up until now.
Our doctor is going to attempt to have the drug manufacturer pay for half, and our private insurance the other half, as a workaround. Stay tuned on that one.
Anyway, that is - believe it or not - the brief version of our story.
I'm very happy to have discovered this forum and this community. Nice to know you're all there.
Forums
3 posts
• Page 1 of 1
-
Michael in Montreal - Name: Michael in Montreal
- Who do you know with myeloma?: My wife
- When were you/they diagnosed?: November 2016
- Age at diagnosis: 57
Re: My wife's diagnosis; our journey
Hello Michael, and welcome to the Forum. I am sorry though, that your wife has been though such an ordeal with myeloma since her diagnosis. I really hope she will does well on the Kyprolis/Revlimid/dex regimen, if your doctor can work that out.
Good luck with everything and please keep us posted.
Good luck with everything and please keep us posted.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: My wife's diagnosis; our journey
Welcome to the forum, Michael.
While your wife is waiting to see if she can get approval to have Kyprolis added to her current treatment regimen, perhaps her doctors could try combining Velcade with the Revlimid and dexamethasone that she is getting.
I know your wife already was treated with a Velcade-containing regimen prior to her transplant. However, Velcade may still have some efficacy, particularly in combination with Revlimid, and particularly if she did not receive many cycles of her prior Velcade-based regimen. (I say "particularly in combination with Revlimid" because there is evidence that Velcade and Revlimid may have a synergistic effect on each other's efficacy.)
Also, if her doctors decide to temporarily add in the Velcade, they may want to try intravenously-administered Velcade instead of the now more common subcutaneously-administered Velcade. The IV-administered Velcade may be better at penetrating the tumours that your wife has developed. See, for example, Dr. Richardson's comments in this article:
https://myelomabeacon.org/news/2015/04/20/subcutaneous-velcade-newly-diagnosed-multiple-myeloma/
Are the tumours your wife recently developed extramedullary (outside-the-bone) tumours, or are the tumours in the bone?
In any case, best of luck to you and your wife, and please keep us updated on how she is doing.
While your wife is waiting to see if she can get approval to have Kyprolis added to her current treatment regimen, perhaps her doctors could try combining Velcade with the Revlimid and dexamethasone that she is getting.
I know your wife already was treated with a Velcade-containing regimen prior to her transplant. However, Velcade may still have some efficacy, particularly in combination with Revlimid, and particularly if she did not receive many cycles of her prior Velcade-based regimen. (I say "particularly in combination with Revlimid" because there is evidence that Velcade and Revlimid may have a synergistic effect on each other's efficacy.)
Also, if her doctors decide to temporarily add in the Velcade, they may want to try intravenously-administered Velcade instead of the now more common subcutaneously-administered Velcade. The IV-administered Velcade may be better at penetrating the tumours that your wife has developed. See, for example, Dr. Richardson's comments in this article:
https://myelomabeacon.org/news/2015/04/20/subcutaneous-velcade-newly-diagnosed-multiple-myeloma/
Are the tumours your wife recently developed extramedullary (outside-the-bone) tumours, or are the tumours in the bone?
In any case, best of luck to you and your wife, and please keep us updated on how she is doing.
3 posts
• Page 1 of 1
Return to Member Introductions / Personal Stories