Hello all.
I lurk here a lot but haven't posted in quite a while. I was diagnosed In November of 2017 with a high-risk version including the 17p deletion. After cyclophosphamide, Velcade, and dexamethasone treatment that winter was successful in achieving remission, I had an autologous stem cell transplant in June 2018.That failed after about 6 months, and the first half of 2019 was mostly a succession of other treatments, including Darzalex, which didn't do much. Last summer and fall I had three rounds of old school chemo that included more cyclophosphamide along with doxorubicin and cisplatin. That was more successful in getting things under control, enough for me to spend a week in Greece last December. But the effects were only temporary, and the disease came back strong early this winter.
At that point, a change in my wife's insurance led me to switch my myeloma care to another doctor, a myeloma specialist. The original plan we developed with this physician was to get me into a clinical trial for a bispecific antibody, but insufficient platelets scotched that. Instead, we ended up with a week of cyclophosphamide and cisplatin (much easier without the doxorubicin, as it did seem to be affecting my heart function, as it can) and then a second stem cell transplant this past April (at the height of the current COVID-19 pandemic, no less). Two weeks in solitary confinement. For those who are contemplating a second one, I will say that it was much easier knowing what to expect, but it was notably less pleasant than my first one. I had about 3 days of barely eating and getting out of bed. Some of that may have been because I came into the second one in far worse shape than the first.
That second stem cell transplant seems to have been successful so far. I am in week 3 of my first cycle of Ninlaro (ixazomib) and Pomalyst (pomalidomide, Imnovid) as maintenance. Other than a rash and a fall in my platelets (which are still at 79), no side effects. My lab work yesterday had my hemoglobin at 11.3 g/dl and my neutrophils at 3600, and all my chemistry normal. I'll have the light chains and other myeloma numbers back tomorrow, but a month ago my M-spike was at 0.42 g/dL and my kappa and lambda were normal with the ratio just a hair above normal.
And I feel great. I'm back on my exercise bike for 30 minutes every 2 days out of 3 and taking the dog for 2 mile walks as many days as possible.
As always with this disease, especially high-risk versions, one never knows how long the good times will last, but if yesterday's myeloma numbers continue to show the disease under control, if not nearly absent, we'll take what we can get. Hopefully the Ninlaro-Pomalyst combo can keep the good times going.
It's always a battle against time and hoping that we can stay healthy enough to benefit from the next new thing. With CAR T-cell therapy becoming more widely accessible and showing real promise, I remain optimistic about getting a good bunch of good times in over the years to come.
Thanks to all of you who share your stories here. I know how much the positive ones mean to me, and how much diaries of stem cell transplants and other treatments have helped me prepare for my own. And as I come up on 3 years of living with this disease, I hope my own story, even with all of its ups and downs, provides some inspiration and help for others.
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8 posts
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Steve Horwitz - Name: Steve Horwitz
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2017
- Age at diagnosis: 53
Re: An update on my progress
Steve,
You have been through the gauntlet. I am so happy for you that the second stem cell transplant worked. I believe that is rare and that, most of the time, if the first one did not take the odds of the second one working are not good. I am also so happy for you that the maintenance treatment is working. I note that our favorite drug (tongue-in-cheek), dexamethasone, was not mentioned. I believe it is often part of maintenance regimens involving more than just a single drug. (I am on Velcade, Revlimid, and dex as maintenance).
Hope you stay in a remissive state for a long time.
Ron
You have been through the gauntlet. I am so happy for you that the second stem cell transplant worked. I believe that is rare and that, most of the time, if the first one did not take the odds of the second one working are not good. I am also so happy for you that the maintenance treatment is working. I note that our favorite drug (tongue-in-cheek), dexamethasone, was not mentioned. I believe it is often part of maintenance regimens involving more than just a single drug. (I am on Velcade, Revlimid, and dex as maintenance).
Hope you stay in a remissive state for a long time.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: An update on my progress
Steve,
What an incredible story. It is great to hear such positive results. Thanks for sharing your progress.
David
What an incredible story. It is great to hear such positive results. Thanks for sharing your progress.
David
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: An update on my progress
I just wanted to add that I got my myeloma bloodwork back and things continue to look great. My free light chain results were all just a hair above normal, and my serum protein electrophoresis (SPEP) numbers came back especially good. All of the proteins were in the normal range and my M-spike fell from 0.42 g/dL (4.2 g/l) last month to 0.23 g/dL (2.3 g/l) this month. Can't argue with any of that!
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Steve Horwitz - Name: Steve Horwitz
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2017
- Age at diagnosis: 53
Re: An update on my progress
Ron Harvot wrote:
My doctor decided to leave me off the dex at the start. I've been on 40 mg per week for a good deal of the time since diagnosis, and it was giving me major blood sugar problems in addition to the usual insanity and insomnia. So no complaints from me. He did, at my appointment this past Wednesday, write me a new scrip for it at a really low dose (8 mg per week) to treat this rash I've had. That's low enough that it wasn't a real problem this week.
I should add what appears to be one interesting consequence of the second transplant. I had been on insulin for over a year to treat the steroid-induced diabetes. While in the hospital recovering from the transplant, my blood sugar began to fall and we slowly weaned me off the insulin. I left the hospital on April 15. Since then, my morning readings have averaged 110 and my evenings (2 hours after eating) have averaged 157. And that's totally off insulin!
Certainly getting rid of the dex helped that problem, but I was still a borderline diabetic before the diagnosis. I have to wonder whether the presence of the myeloma itself somehow contributes to blood sugar issues and when we get close to or in remission, blood sugar measures come back toward normal. I did a quick bit of research a while back but couldn't find anything on this. Again, maybe it's all from the presence and absence of the dex. In any case, I'm thrilled to have that problem under control and to eat my yummy delicious carbs again.
I note that our favorite drug (tongue-in-cheek), dexamethasone, was not mentioned. I believe it is often part of maintenance regimens involving more than just a single drug. (I am on Velcade, Revlimid, and dex as maintenance).
My doctor decided to leave me off the dex at the start. I've been on 40 mg per week for a good deal of the time since diagnosis, and it was giving me major blood sugar problems in addition to the usual insanity and insomnia. So no complaints from me. He did, at my appointment this past Wednesday, write me a new scrip for it at a really low dose (8 mg per week) to treat this rash I've had. That's low enough that it wasn't a real problem this week.
I should add what appears to be one interesting consequence of the second transplant. I had been on insulin for over a year to treat the steroid-induced diabetes. While in the hospital recovering from the transplant, my blood sugar began to fall and we slowly weaned me off the insulin. I left the hospital on April 15. Since then, my morning readings have averaged 110 and my evenings (2 hours after eating) have averaged 157. And that's totally off insulin!
Certainly getting rid of the dex helped that problem, but I was still a borderline diabetic before the diagnosis. I have to wonder whether the presence of the myeloma itself somehow contributes to blood sugar issues and when we get close to or in remission, blood sugar measures come back toward normal. I did a quick bit of research a while back but couldn't find anything on this. Again, maybe it's all from the presence and absence of the dex. In any case, I'm thrilled to have that problem under control and to eat my yummy delicious carbs again.
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Steve Horwitz - Name: Steve Horwitz
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2017
- Age at diagnosis: 53
Re: An update on my progress
Great news Steve!
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: An update on my progress
Here's a story this group will appreciate more than most:
I had labs drawn on Friday, September 4. It usually takes a day or two for all the results to appear online. By the following Tuesday (thanks to the long weekend), everything was up, including the myeloma numbers, but NOT including my M-spike. I hate going to my monthly oncology appointment without everything, but I trundled off to the cancer center on the Wednesday for that appointment.
When my doctor walked in, we exchanged greetings and I immediately said "I know all the lab work except the M-spike as it never appeared online."
His reply: "That's because there wasn't any! Congrats."
He then handed me a printout with everyone's favorite phrase: "No monocolonal protein is detected."
So the Ninlaro and Pomalyst (3 mg) combo as maintenance after stem cell transplant #2 seems to be working, at least for now. As is always the case, one never knows how long this will last. But every month of zero or near-zero M-spike is one less month of damage and one more month of living as normal of a life as possible.
I was skeptical about a second stem cell transplant, but so far, so good! Let's hope I can keep it going.
I had labs drawn on Friday, September 4. It usually takes a day or two for all the results to appear online. By the following Tuesday (thanks to the long weekend), everything was up, including the myeloma numbers, but NOT including my M-spike. I hate going to my monthly oncology appointment without everything, but I trundled off to the cancer center on the Wednesday for that appointment.
When my doctor walked in, we exchanged greetings and I immediately said "I know all the lab work except the M-spike as it never appeared online."
His reply: "That's because there wasn't any! Congrats."
He then handed me a printout with everyone's favorite phrase: "No monocolonal protein is detected."
So the Ninlaro and Pomalyst (3 mg) combo as maintenance after stem cell transplant #2 seems to be working, at least for now. As is always the case, one never knows how long this will last. But every month of zero or near-zero M-spike is one less month of damage and one more month of living as normal of a life as possible.
I was skeptical about a second stem cell transplant, but so far, so good! Let's hope I can keep it going.
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Steve Horwitz - Name: Steve Horwitz
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2017
- Age at diagnosis: 53
Re: An update on my progress
Excellent! Congratulations on getting to a non-detectable M-spike.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
8 posts
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