MelPen,
Thank you for your comments. Yes, attitude, diet, and exercise certainly make a difference. Knowing what you want out of treatment also helps to keep a positive point of view.
Ask your doctor about combining Pomalyst at 2 mg with Kyprolis and a little bit of dex (4 mg) infused at the same time as the Kyprolis. No additional dex.
It worked the best for me of any treatment ever. The Mayo in Scottsdale AZ did a study on this combo and although Dr Stewart is part of my myeloma team, his role at this point is as an advisor since I treat locally in Prescott with Arizona Oncology. I had started solely with Kyprolis and with minimal results Dr. Stewart suggested we add the Pomalyst. At 2 mg combined, for the first time I saw my M-spike become unmeasurable. However after a month off I jumped 2000 points and had to restart treatment. That's when I chose to take the Pomalyst solely at 4 mg which, as I pointed out in my previous post, is pretty much holding back the rising numbers. However, while my M-spike is holding, my light chains are still active, which tells me my multiple myeloma is active, so I need treatment at some level.
Good luck to you in finding the right treatment. On the positive side, we multiple myeloma patients have never had the number of choices of drugs that have been developed expressly for multiple myeloma. The right combo is there for you. And the new drugs coming down the line within the next two years are even more amazing.
JonEman
Forums
Re: Autologous transplant for refractory / high risk myeloma
Mr PotatoHead,
I noticed your comment about why do induction therapy at all prior to an ASCT?
Well a couple of things come to mind.
First, if your blood / bone marrow is loaded with monoclonal cells when you collect the stem cells, guess what else you are collecting? If you guessed monoclonal cells, you win (or lose in this case).
And when they reinfuse the immature stem cells, guess what else gets reinfused – unfortunately the monoclonal cells. That is why they prefer a remission prior to a stem cell transplant. Now, not everyone can achieve a remission, so they like it if you are very low in your monoclonal count, say 5% or less. The thinking is maybe that is a small enough amount that your growing and new immune system could possibly defeat this small amount.
The second thing is in my opinion, as well as my multiple myeloma group, we feel transplants are just another choice of treatment, no better or worse (with the caveat that the recovery time and the damage to one's body is longer and more severe), but in terms of working and length of remission there seems to be little difference. Length of remission or not seems to be individual and different for everyone. Some of my fellow patients have had short or no remission from SCT and some have had fairly long periods, 2 years or so. And, then again, some of my friends have had much longer remission from Revlimid, nearly 8 years, so as I said it's all different.
It's a hard call. My transplant was several years ago back in 2009 and it wanted to be in 2008 but as you know I just didn't respond to the induction therapy and that kept pushing out the date until finally we had no choice and the SCT was the last and only option. I'm not sure where my monoclonal count was at collection, but I assume it was high, as it never takes me long to shoot back up after stopping chemo. However I do know at the time of the transplant I was as high in count as I ever was.
Anyway, this message is not designed to talk you out of or into anything. This is a decision you must make for yourself. My message is meant to respond and clarify why they want to do induction therapy prior to any transplant.
Good luck! I know you do what is right for you!
JonEman
I noticed your comment about why do induction therapy at all prior to an ASCT?
Well a couple of things come to mind.
First, if your blood / bone marrow is loaded with monoclonal cells when you collect the stem cells, guess what else you are collecting? If you guessed monoclonal cells, you win (or lose in this case).
And when they reinfuse the immature stem cells, guess what else gets reinfused – unfortunately the monoclonal cells. That is why they prefer a remission prior to a stem cell transplant. Now, not everyone can achieve a remission, so they like it if you are very low in your monoclonal count, say 5% or less. The thinking is maybe that is a small enough amount that your growing and new immune system could possibly defeat this small amount.
The second thing is in my opinion, as well as my multiple myeloma group, we feel transplants are just another choice of treatment, no better or worse (with the caveat that the recovery time and the damage to one's body is longer and more severe), but in terms of working and length of remission there seems to be little difference. Length of remission or not seems to be individual and different for everyone. Some of my fellow patients have had short or no remission from SCT and some have had fairly long periods, 2 years or so. And, then again, some of my friends have had much longer remission from Revlimid, nearly 8 years, so as I said it's all different.
It's a hard call. My transplant was several years ago back in 2009 and it wanted to be in 2008 but as you know I just didn't respond to the induction therapy and that kept pushing out the date until finally we had no choice and the SCT was the last and only option. I'm not sure where my monoclonal count was at collection, but I assume it was high, as it never takes me long to shoot back up after stopping chemo. However I do know at the time of the transplant I was as high in count as I ever was.
Anyway, this message is not designed to talk you out of or into anything. This is a decision you must make for yourself. My message is meant to respond and clarify why they want to do induction therapy prior to any transplant.
Good luck! I know you do what is right for you!
JonEman
-
JonEman
Re: Autologous transplant for refractory / high risk myeloma
Hi JonEman
Thanks so much for your post. Along with your earlier posts, it is extremely helpful.
On the issue of the need for induction therapy to reduce the amount of cancerous plasma cells prior to an ASCT, what you say makes sense, clearly. But my understanding is that the stem cells are no longer collected directly from the bone marrow, which is where the myeloid cells also are. I thought that the current collection methods involve injecting the patient with stem cell growth factors (using drugs like Neupogen or Neulasta), which cause the stem cells to propagate into the bloodstream. Perhaps the cancerous plasma cells also get propagated along with them?
I would prefer not to have a stem cell procedure, just because of the very long recovery time. I'd rather stick with drug therapy, as you have done, since your unsuccessful attempt at an ASCT. I am afraid my experience with the stem cell option would likely parallel yours. The great thing for me in reading your posts is that you have not been able to get a complete response (CR) using drugs, and in many cases have had a poor response, and yet you are a survivor. That really made me feel a lot better and a lot more hopeful. I had thought that, since the much touted Revlimid and Velcade both failed me, I had to seriously ask whether an ASCT was a likely next step. And then, what if it didn't work?
Currently I am on carfilzomib (Kyprolis) and dex as well as prednisone on off-days. It remains to be seen whether my current treatment will work. If it doesn't, I am strongly leaning toward just continuing to try other drugs and drug combinations, as you have done.
The one thing that worries me is the continuing assault the myeloma is waging on my bones. I have a lot of damage. I am on Zometa and also have had a successful kyphoplasty. But, even with a lot of fentanyl and oxycodone, I still suffer from pronounced bone pain, and am fearful of continuing damage and its consequences.
Still, the information about your experience that you were kind enough to share gives me hope.
Thanks again and I wish you continued success in surviving this difficult illness.
Thanks so much for your post. Along with your earlier posts, it is extremely helpful.
On the issue of the need for induction therapy to reduce the amount of cancerous plasma cells prior to an ASCT, what you say makes sense, clearly. But my understanding is that the stem cells are no longer collected directly from the bone marrow, which is where the myeloid cells also are. I thought that the current collection methods involve injecting the patient with stem cell growth factors (using drugs like Neupogen or Neulasta), which cause the stem cells to propagate into the bloodstream. Perhaps the cancerous plasma cells also get propagated along with them?
I would prefer not to have a stem cell procedure, just because of the very long recovery time. I'd rather stick with drug therapy, as you have done, since your unsuccessful attempt at an ASCT. I am afraid my experience with the stem cell option would likely parallel yours. The great thing for me in reading your posts is that you have not been able to get a complete response (CR) using drugs, and in many cases have had a poor response, and yet you are a survivor. That really made me feel a lot better and a lot more hopeful. I had thought that, since the much touted Revlimid and Velcade both failed me, I had to seriously ask whether an ASCT was a likely next step. And then, what if it didn't work?
Currently I am on carfilzomib (Kyprolis) and dex as well as prednisone on off-days. It remains to be seen whether my current treatment will work. If it doesn't, I am strongly leaning toward just continuing to try other drugs and drug combinations, as you have done.
The one thing that worries me is the continuing assault the myeloma is waging on my bones. I have a lot of damage. I am on Zometa and also have had a successful kyphoplasty. But, even with a lot of fentanyl and oxycodone, I still suffer from pronounced bone pain, and am fearful of continuing damage and its consequences.
Still, the information about your experience that you were kind enough to share gives me hope.
Thanks again and I wish you continued success in surviving this difficult illness.
-
MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Autologous transplant for refractory / high risk myeloma
JonEman, MelPan
I found another thread related to our discussion, with a great post by Multibilly. It is an interesting discussion around whether or not to have a stem cell transplant, just in case you have not seen it:
https://myelomabeacon.org/forum/stem-cell-transplant-or-not-t6003.html#p35441
As mentioned, I am leaning strongly against not having one and just sticking with trying more drugs and drug combos, based on JonEman's experience and his excellent point about how there are new ones coming out all the time.
It is really tough to navigate all of the pros and cons of different treatment approaches. I suppose one just needs to learn as much as possible, make sure you have a myeloma expert advising you, and then hope for the best.
Good luck to us all!
I found another thread related to our discussion, with a great post by Multibilly. It is an interesting discussion around whether or not to have a stem cell transplant, just in case you have not seen it:
https://myelomabeacon.org/forum/stem-cell-transplant-or-not-t6003.html#p35441
As mentioned, I am leaning strongly against not having one and just sticking with trying more drugs and drug combos, based on JonEman's experience and his excellent point about how there are new ones coming out all the time.
It is really tough to navigate all of the pros and cons of different treatment approaches. I suppose one just needs to learn as much as possible, make sure you have a myeloma expert advising you, and then hope for the best.
Good luck to us all!
-
MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Autologous transplant for refractory / high risk myeloma
Although you have already received some valuable information from the other comments and done some research on your own, I would like to add my thoughts.
You and my husband are the same age and he also is high risk and at diagnosis had nearly 100% plasma cells in his marrow. (At the time we did not know how formidable that was)
When the local oncologists could not give us a precise diagnosis of his disease, we made an appointment at MD Anderson Cancer Center in Houston. I spent several days on the Internet looking up cancer centers in America and it consistently ranked high and was the closest to our home albeit 12 hours away.
The medical professionals at MD Anderson wasted no time in analyzing my husband's disease and embarking on an aggressive treatment regimen. He was put on Revlimid, Velcade, Dexamethasone and a clinical trial using Panobinostat (Farydak). After induction chemotherapy he achieved a VGPR. Because he had two troublesome plasmacytomas near his spine that did not respond to the chemotherapy, he received radiation (IMRT) on those two spots. We thought that he would just stay on maintenance chemotherapy but in July the stem cell team recommended a stem cell transplant and participation in a natural killer cell clinical trial.
Today he is at D+15 from the autologous stem cell tranplant, out of the hospital and doing as well as can be expected from the process and procedure. Forgive me for going on so but I feel that it would be useful for you to hear this information from someone who has recently experienced the diagnosis, prognosis and outcome. We made the decision to attack the myeloma as aggressively as our doctors would allow and recommend. From everything I have read and heard at seminars, fighting multiple myeloma with multiple drugs and novel agents shows more promise than using just one drug. Of course, every person with myeloma is unique, no types of myeloma are really identical and response to chemotherapy varies considerably from person to person.
Good luck with your decision and best wishes for fighting this disease as best you can.
You and my husband are the same age and he also is high risk and at diagnosis had nearly 100% plasma cells in his marrow. (At the time we did not know how formidable that was)
When the local oncologists could not give us a precise diagnosis of his disease, we made an appointment at MD Anderson Cancer Center in Houston. I spent several days on the Internet looking up cancer centers in America and it consistently ranked high and was the closest to our home albeit 12 hours away.
The medical professionals at MD Anderson wasted no time in analyzing my husband's disease and embarking on an aggressive treatment regimen. He was put on Revlimid, Velcade, Dexamethasone and a clinical trial using Panobinostat (Farydak). After induction chemotherapy he achieved a VGPR. Because he had two troublesome plasmacytomas near his spine that did not respond to the chemotherapy, he received radiation (IMRT) on those two spots. We thought that he would just stay on maintenance chemotherapy but in July the stem cell team recommended a stem cell transplant and participation in a natural killer cell clinical trial.
Today he is at D+15 from the autologous stem cell tranplant, out of the hospital and doing as well as can be expected from the process and procedure. Forgive me for going on so but I feel that it would be useful for you to hear this information from someone who has recently experienced the diagnosis, prognosis and outcome. We made the decision to attack the myeloma as aggressively as our doctors would allow and recommend. From everything I have read and heard at seminars, fighting multiple myeloma with multiple drugs and novel agents shows more promise than using just one drug. Of course, every person with myeloma is unique, no types of myeloma are really identical and response to chemotherapy varies considerably from person to person.
Good luck with your decision and best wishes for fighting this disease as best you can.
-
PattyB - Name: PattyB
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 64
Re: Autologous transplant for refractory / high risk myeloma
Dear PattyB
Thank you very much for so generously sharing your husband's experience.
My oncologist has had a lot of experience treating myeloma, but I did do a search for a center of excellence. The closest one to me was City of Hope. I went there for a second opinion several months ago, and their recommendations departed only slightly from what my local oncologist proposed.
I am not entirely sure why I am not being treated more aggressively, but one factor might be that I have a serious heart condition as well as type 2 diabetes. I am also prone to mylesupression using some of the novel agents, such as Revlimid and Velcade. In fact, while on Revlimid I wound up in the hospital with pneumonia.
Fortunately, I do seem to be responding to a combination of carfilzomib (Kyprolis) and dex. Still, my oncologist is planning to add another drug to my treatment shortly, and I am scheduled to go back to the CoH for a reevaluation soon.
Thanks again for sharing your experience. I have heard that MD Anderson is one of the best treatment centers in the world for multiple myeloma, and I hope your husband's treatment will be a great success. It sounds to me as if you and he have done everything possible to make that happen.
Good luck (to us all)!
Thank you very much for so generously sharing your husband's experience.
My oncologist has had a lot of experience treating myeloma, but I did do a search for a center of excellence. The closest one to me was City of Hope. I went there for a second opinion several months ago, and their recommendations departed only slightly from what my local oncologist proposed.
I am not entirely sure why I am not being treated more aggressively, but one factor might be that I have a serious heart condition as well as type 2 diabetes. I am also prone to mylesupression using some of the novel agents, such as Revlimid and Velcade. In fact, while on Revlimid I wound up in the hospital with pneumonia.
Fortunately, I do seem to be responding to a combination of carfilzomib (Kyprolis) and dex. Still, my oncologist is planning to add another drug to my treatment shortly, and I am scheduled to go back to the CoH for a reevaluation soon.
Thanks again for sharing your experience. I have heard that MD Anderson is one of the best treatment centers in the world for multiple myeloma, and I hope your husband's treatment will be a great success. It sounds to me as if you and he have done everything possible to make that happen.
Good luck (to us all)!
-
MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Autologous transplant for refractory / high risk myeloma
Mr P.
You certainly have some major complications with the heart condition and the diabetes and that certainly can help explain the caution used in your treatment. I know that when my husband was on Panobinostat he had an EKG each month.
Our experience with Krypolis was a bit better than with Velcade so perhaps that is a good choice for you too.
Again, best wishes!
You certainly have some major complications with the heart condition and the diabetes and that certainly can help explain the caution used in your treatment. I know that when my husband was on Panobinostat he had an EKG each month.
Our experience with Krypolis was a bit better than with Velcade so perhaps that is a good choice for you too.
Again, best wishes!
-
PattyB - Name: PattyB
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 64
Re: Autologous transplant for refractory / high risk myeloma
Hi PattyB,
Well, I am back from my meeting at City of Hope, and they told me that if my kappa light chain values continue to go down, that despite my heart disease and other adverse factors, they would recommend an ASCT for me. They in fact believe that to be my best option.
I was somewhat surprised, but now I am back in a quandary. Should I continue with drugs, or should I go the stem cell route? City of Hope is a "stem cell shop", so to speak, so perhaps I shouldn't be surprised after all.
But they can't tell me how long my remission would be, although they did say I would likely be able to be off drugs for 2-3 years. But that's at the cost of being hospitalized for 1-2 months, and I may be able to achieve the same or close to the same results just doing drug therapy, now that I know that my myeloma can respond to the new novel agents, given my positive experience with Kyprolis (carfilzomib).
So how does one decide? Flip a coin?
How is your husband doing? Do you feel the stem cell option was a good choice at this point? What has his recovery been like so far?
Thanks, PattyB.
Well, I am back from my meeting at City of Hope, and they told me that if my kappa light chain values continue to go down, that despite my heart disease and other adverse factors, they would recommend an ASCT for me. They in fact believe that to be my best option.
I was somewhat surprised, but now I am back in a quandary. Should I continue with drugs, or should I go the stem cell route? City of Hope is a "stem cell shop", so to speak, so perhaps I shouldn't be surprised after all.
But they can't tell me how long my remission would be, although they did say I would likely be able to be off drugs for 2-3 years. But that's at the cost of being hospitalized for 1-2 months, and I may be able to achieve the same or close to the same results just doing drug therapy, now that I know that my myeloma can respond to the new novel agents, given my positive experience with Kyprolis (carfilzomib).
So how does one decide? Flip a coin?
How is your husband doing? Do you feel the stem cell option was a good choice at this point? What has his recovery been like so far?
Thanks, PattyB.
-
MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Autologous transplant for refractory / high risk myeloma
Dear Mr. Potatohead,
First off, you sound like a well informed person, which is a great thing in dealing with multiple myeloma, but can also be unbelievably overwhelming. I too was diagnosed with 90% myeloma cells and was quite sick in the beginning with a whopping case of pneumonia, resulting in 4 days in cardio / pulmonary ICU and 3 days in Onc. I first received Velcade, Cytoxan, and dexamethasone and did respond.
After 6 months, my local community doc referred me to UCSF and my doc there wanted to get my myeloma cell number down to 10% of where I first started out, so I had 2 inpatient chemo regimens. The first "HYPERCAD" didn't do much at all; 4 days of 24/7 multiple treatment infusions, and my doc said I didn't get much bang for my buck.
So I went back about a month later for another one called CVAD, MINUS the V (Vincristine), with better results. I was then ready to start the ASCT prep, which among many tests includes a detailed virology screen, and was told I had hepatitis C, genome type 3a, a weird one in the U.S. that responds well to treatment. Subsequent testing revealed a medium high viral load that would have to be treated to proceed with the transplant.
So I get referred to an infectious disease guy and start on interferon and ribavirin and Velcade, which I dubbed Velcaferon. Let's just say there were ample side effects included with this treatment I was on for 4 months, including biweekly packed red blood cell transfusions and lots of Neupogen.
In a couple of months after completing the hep C treatment, which cured me of it, by the way, I began going through the stem cell harvest procedure with the first apheresis yielding rather puny results, followed by a second attempt about 6 weeks later declaring me stem cell transplant ineligible. Let's just say I went home and my husband and I popped a bottle of champagne.
Kyprolis came and went next - stopped working after 9 months, but I know an ER doc that refused a transplant and he was in remission on it in 6 months. Now I'm back over to UCSF and started a regimen called ClaP-D (clarithromycin, Pomalyst, and dexamethasone). Lots of jokes surrounding this one, but lo and behold, it worked. After 11 months on, I'm in remission! Was the first patient at my community doc's practice to be on it and now they're adding clarithromycin to their Pomalyst / dex patients with stunning results. Only when I started to significantly respond was it revealed to me that I had an aggressive disease that wasn't determined by the cytogenetics. It's just stubborn. Refractory is all over the place in my chart.
Had a bone marrow biopsy UCSF about a month ago (haven't gotten my results yet) to determine minimal residual disease and one test that is run is able to find one myeloma cell within one million bone marrow cell (a lab in South San Francisco). Remission has many different levels, hence relapse, and this test gives the doc and patient such detailed info your maintenance treatment, if required, will be very precise.
So, what can I say to you? The new drugs are incredible, with a whole new class of drugs coming out in December - an anti antibody CD 38 with hardly any side effects. It's not a freely used term, but people are being cured according to my doc at UCSF.
Do you have a university hospital in your area with a good hemo/onc dept? Because multiple myeloma is so heavily researched, there are loads of drugs creating tons of treatment options - you just haven't found the right one yet. You will!
See what can be done to get your bone pain managed. I can recommend swimming and water aerobics. I joined my local Y and their pool is heated to 84 degrees year round. It's outdoors, in California.
One last note on relapse. I really don't let anyone tell me it's inevitable because it's not. I've met many, many people that got rid of it for 10+ years and more.
I've got almost 3.5 years of experience with this invader and would be happy to answer any of your questions or concerns. Plus I so enjoy your user name and "War of the Worlds" pic.
First off, you sound like a well informed person, which is a great thing in dealing with multiple myeloma, but can also be unbelievably overwhelming. I too was diagnosed with 90% myeloma cells and was quite sick in the beginning with a whopping case of pneumonia, resulting in 4 days in cardio / pulmonary ICU and 3 days in Onc. I first received Velcade, Cytoxan, and dexamethasone and did respond.
After 6 months, my local community doc referred me to UCSF and my doc there wanted to get my myeloma cell number down to 10% of where I first started out, so I had 2 inpatient chemo regimens. The first "HYPERCAD" didn't do much at all; 4 days of 24/7 multiple treatment infusions, and my doc said I didn't get much bang for my buck.
So I went back about a month later for another one called CVAD, MINUS the V (Vincristine), with better results. I was then ready to start the ASCT prep, which among many tests includes a detailed virology screen, and was told I had hepatitis C, genome type 3a, a weird one in the U.S. that responds well to treatment. Subsequent testing revealed a medium high viral load that would have to be treated to proceed with the transplant.
So I get referred to an infectious disease guy and start on interferon and ribavirin and Velcade, which I dubbed Velcaferon. Let's just say there were ample side effects included with this treatment I was on for 4 months, including biweekly packed red blood cell transfusions and lots of Neupogen.
In a couple of months after completing the hep C treatment, which cured me of it, by the way, I began going through the stem cell harvest procedure with the first apheresis yielding rather puny results, followed by a second attempt about 6 weeks later declaring me stem cell transplant ineligible. Let's just say I went home and my husband and I popped a bottle of champagne.
Kyprolis came and went next - stopped working after 9 months, but I know an ER doc that refused a transplant and he was in remission on it in 6 months. Now I'm back over to UCSF and started a regimen called ClaP-D (clarithromycin, Pomalyst, and dexamethasone). Lots of jokes surrounding this one, but lo and behold, it worked. After 11 months on, I'm in remission! Was the first patient at my community doc's practice to be on it and now they're adding clarithromycin to their Pomalyst / dex patients with stunning results. Only when I started to significantly respond was it revealed to me that I had an aggressive disease that wasn't determined by the cytogenetics. It's just stubborn. Refractory is all over the place in my chart.
Had a bone marrow biopsy UCSF about a month ago (haven't gotten my results yet) to determine minimal residual disease and one test that is run is able to find one myeloma cell within one million bone marrow cell (a lab in South San Francisco). Remission has many different levels, hence relapse, and this test gives the doc and patient such detailed info your maintenance treatment, if required, will be very precise.
So, what can I say to you? The new drugs are incredible, with a whole new class of drugs coming out in December - an anti antibody CD 38 with hardly any side effects. It's not a freely used term, but people are being cured according to my doc at UCSF.
Do you have a university hospital in your area with a good hemo/onc dept? Because multiple myeloma is so heavily researched, there are loads of drugs creating tons of treatment options - you just haven't found the right one yet. You will!
See what can be done to get your bone pain managed. I can recommend swimming and water aerobics. I joined my local Y and their pool is heated to 84 degrees year round. It's outdoors, in California.
One last note on relapse. I really don't let anyone tell me it's inevitable because it's not. I've met many, many people that got rid of it for 10+ years and more.
I've got almost 3.5 years of experience with this invader and would be happy to answer any of your questions or concerns. Plus I so enjoy your user name and "War of the Worlds" pic.
-
Mermaid100 - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: Autologous transplant for refractory / high risk myeloma
Dear Mermaid100,
Thanks so much for your post. I really needed ro read something like that now.
I have tried to inform myself about this disease, but the recommendations for treatment are so diverse and, in many cases, contradictory, that it becomes very discouraging.
First, I was not a candidate to do the stem cell thing - now I am. Some folks swear by it, others who have endured it "would never do it again."
The good news is that I am responding to carfizmobid, and that means my myeloma is not Superman. And with all the new drugs coming out now, maybe I can avoid the whole stem cell imbroglio, as you have done. That would be my preference. Quality of life comes first for me, and suffering through a process where my body gets flooded with a powerful poison does not sound like a ticket to any kind of peace of mind.
So, reading and thinking about your post, here is my plan: I will continue on carfilzmobid and around Christmas, see how low my kappa chains can go. Until then, I will try to talk to folks who have tried drugs and those who had an ASCT, and see where I come out.
I would much rather have less time, but good quality time, then a lot of suffering, even if I had to give up a year of life or so. And, from what I have read so far, the differences in survival between the two approaches are on that kind of scale.
Or course, there is news from both camps of long-term survivors, but how can you use that information in making a decision like this?
In the end, it is all in G-d's hands.
I will give swimming a try. Thanks for the suggestion. The bone pain is my worst symptom, and 100 mcg of Fentanyl, abetted by 15 mg Oxycodone tablets, barely makes a dent in it at times.
Closest university hospital to me is in Los Angeles. I am two hours from City of Hope in Pasadena, which is a teaching hospital. But, as mentioned, although they are a teaching hospital, they are a "stem cell transplant" shop,
Thanks so much for the encouragement!
Thanks so much for your post. I really needed ro read something like that now.
I have tried to inform myself about this disease, but the recommendations for treatment are so diverse and, in many cases, contradictory, that it becomes very discouraging.
First, I was not a candidate to do the stem cell thing - now I am. Some folks swear by it, others who have endured it "would never do it again."
The good news is that I am responding to carfizmobid, and that means my myeloma is not Superman. And with all the new drugs coming out now, maybe I can avoid the whole stem cell imbroglio, as you have done. That would be my preference. Quality of life comes first for me, and suffering through a process where my body gets flooded with a powerful poison does not sound like a ticket to any kind of peace of mind.
So, reading and thinking about your post, here is my plan: I will continue on carfilzmobid and around Christmas, see how low my kappa chains can go. Until then, I will try to talk to folks who have tried drugs and those who had an ASCT, and see where I come out.
I would much rather have less time, but good quality time, then a lot of suffering, even if I had to give up a year of life or so. And, from what I have read so far, the differences in survival between the two approaches are on that kind of scale.
Or course, there is news from both camps of long-term survivors, but how can you use that information in making a decision like this?
In the end, it is all in G-d's hands.
I will give swimming a try. Thanks for the suggestion. The bone pain is my worst symptom, and 100 mcg of Fentanyl, abetted by 15 mg Oxycodone tablets, barely makes a dent in it at times.
Closest university hospital to me is in Los Angeles. I am two hours from City of Hope in Pasadena, which is a teaching hospital. But, as mentioned, although they are a teaching hospital, they are a "stem cell transplant" shop,
Thanks so much for the encouragement!
-
MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
46 posts
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