Hey pal,
You sound like you're very down. Let's hang in there and fight. I have been in pain 5 years, had kyphoplasty, 4 fractures of the spine. Tried many drugs. Some made me sick, others made me sicker. Only thing that worked for me, gave me a 0 M-spike, was Farydak (panobinostat). I also had a stem cell transplant. Lasted 2 weeks. I am now on Darzalex and Pomalyst was just added. I hope it brings me down to 0 M-spike.
So we are not alone, but we have to hang in there and not give up. I get IVIG every 3 weeks, Zometa every 3 months, and now my Darzalex is every other week, making me very sick. With the Pomalyst added, my only relief is the week I get when I get the dex.
So what I am saying is please hang in. Don't give up.
joe
Forums
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
Thanks for your post, Joe.
I am sure it would help MrPotatohead.
Your strong will and fighting spirit are a great exmple for all of us.
I was on a small weekly dose of dexamethasone during my induction phase and I wonder why you are not getting your dex on a weekly basis.
Hope you get down to 0 M-spike soon.
Wish you all the best .
I am sure it would help MrPotatohead.
Your strong will and fighting spirit are a great exmple for all of us.
I was on a small weekly dose of dexamethasone during my induction phase and I wonder why you are not getting your dex on a weekly basis.
Hope you get down to 0 M-spike soon.
Wish you all the best .
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
Hi joe,
I hope you get to that 0 M-spike fast on the new treatment. You have been through a lot!
Thanks so much for the encouraging words.
I hope you get to that 0 M-spike fast on the new treatment. You have been through a lot!
Thanks so much for the encouraging words.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
Hi Mr. Potatohead,
Sorry to hear about the relapse. It must be very difficult to see any light at the end of the tunnel since your pain level remained high even while in remission. Not all patients understand how much pain this disease can cause. I had 3 compression fractures and multiple rib fractures at diagnosis, so I know what you are talking about. Pain management is one area of medicine that needs a LOT of improvement. Best of luck and please keep us up to date.
Mark
Sorry to hear about the relapse. It must be very difficult to see any light at the end of the tunnel since your pain level remained high even while in remission. Not all patients understand how much pain this disease can cause. I had 3 compression fractures and multiple rib fractures at diagnosis, so I know what you are talking about. Pain management is one area of medicine that needs a LOT of improvement. Best of luck and please keep us up to date.
Mark
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Mark11
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
Thanks, Mark.
I find reading your posts not only informative, but encouraging as well. And now I know that you've been through the bone pain gauntlet also.
I'm starting a new regimen consisting of Kyprolis, Pomalyst, and dex next week, and also rethinking the autologous stem cell option, which I may now qualify for.
One thing about getting the autologous transplant. My oncologist says I have aggressive disease, even though cytogenetics and FISH say my multiple myeloma is intermediate risk.
My oncologist bases this on the fact that I am refractory to Velcade, and that my responses to both Revlimid and Kyprolis were dramatic but short-lived.
You have read a lot of studies. I seem to recall reading one that purported to show that if one has multiple myeloma in which the duration of a progression-free period on drug therapy is short, it will also be short following an autologous transplant, and vice-versa.
Based on your own reading and research, do you know if this is true?
Many thanks.
I find reading your posts not only informative, but encouraging as well. And now I know that you've been through the bone pain gauntlet also.
I'm starting a new regimen consisting of Kyprolis, Pomalyst, and dex next week, and also rethinking the autologous stem cell option, which I may now qualify for.
One thing about getting the autologous transplant. My oncologist says I have aggressive disease, even though cytogenetics and FISH say my multiple myeloma is intermediate risk.
My oncologist bases this on the fact that I am refractory to Velcade, and that my responses to both Revlimid and Kyprolis were dramatic but short-lived.
You have read a lot of studies. I seem to recall reading one that purported to show that if one has multiple myeloma in which the duration of a progression-free period on drug therapy is short, it will also be short following an autologous transplant, and vice-versa.
Based on your own reading and research, do you know if this is true?
Many thanks.
-
MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
Hi Mr Potatohead,
Yesterday I had my stem cells harvested. Why I was waiting, I had a chat to the nurse about all this. She told me you can never odds it. The result is so hit and miss. She has patients who are high risk (no maintenance in the UK) who some are still doing well 3 years later, and others who just relapse really early. Others 6, 8 years with all different risk factors, who knows?
For me, they forgot to do a FISH test and the second one came back with nothing, as I'm in complete response (CR) after treatment at present. I'm coming up to 3 months off treatment and fingers crossed it's not showed its ugly head yet, but I don know what risk I am yet. I suppose time will tell. For me, if I don't put myself through the stem cell transplant, I will always say "what if", especially when I have 2 young lovely daughters, hence why I'm going for it on November the 8th. He who dares wins.
My advice is probably no help to you, but one thing I've started learning about this disease is that even the experts sometimes don't even have a clue. All the best, and it's nice to hear you have your fighting spirit back. All the best matey.
Yesterday I had my stem cells harvested. Why I was waiting, I had a chat to the nurse about all this. She told me you can never odds it. The result is so hit and miss. She has patients who are high risk (no maintenance in the UK) who some are still doing well 3 years later, and others who just relapse really early. Others 6, 8 years with all different risk factors, who knows?
For me, they forgot to do a FISH test and the second one came back with nothing, as I'm in complete response (CR) after treatment at present. I'm coming up to 3 months off treatment and fingers crossed it's not showed its ugly head yet, but I don know what risk I am yet. I suppose time will tell. For me, if I don't put myself through the stem cell transplant, I will always say "what if", especially when I have 2 young lovely daughters, hence why I'm going for it on November the 8th. He who dares wins.
My advice is probably no help to you, but one thing I've started learning about this disease is that even the experts sometimes don't even have a clue. All the best, and it's nice to hear you have your fighting spirit back. All the best matey.
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
Good to get your input, Dean.
I think you are quite right -- the experts and "thought leaders" in the world of myeloma seem to often harbor divergent views. For my part, I will be seeing a doctor at a well-known myeloma transplant center in California this Friday. My oncologist advised me to ask him what the progression free survival and overall survival statistics in his practice are for someone with my specific cytogenetic and FISH profile, as well as tendency for early relapse on novel agents.
Whatever his answer, it might well not apply to me. I may do better or worse. There's just no way of definitively knowing with the current state of knowledge about multiple myeloma.
In your case, I hope your upcoming transplant goes smoothly and with no complications, and results in a long, long remission.
If I had children, as you do, I think I'd go for it, too. And I still might.
Thanks again and best of luck. Keep us posted on how you are doing, if you feel so inclined.
I think you are quite right -- the experts and "thought leaders" in the world of myeloma seem to often harbor divergent views. For my part, I will be seeing a doctor at a well-known myeloma transplant center in California this Friday. My oncologist advised me to ask him what the progression free survival and overall survival statistics in his practice are for someone with my specific cytogenetic and FISH profile, as well as tendency for early relapse on novel agents.
Whatever his answer, it might well not apply to me. I may do better or worse. There's just no way of definitively knowing with the current state of knowledge about multiple myeloma.
In your case, I hope your upcoming transplant goes smoothly and with no complications, and results in a long, long remission.
If I had children, as you do, I think I'd go for it, too. And I still might.
Thanks again and best of luck. Keep us posted on how you are doing, if you feel so inclined.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
Hi Mr Potatohead
Good luck this Friday with your consultant.
Yes, I definitely will keep you updated on how my stem cell transplant goes after I feel normal again. I hope it works and I get a good remission out of it . Just hope I'm well for Christmas day to play with my daughters. If not, plan B is that my doctors want to do a allogeneic (donor) stem cell transplant after. Sounds very risky, but the out come makes it very tempting. Let's hope I don't have to decide on plan B for ages..
All the best mate.
Good luck this Friday with your consultant.
Yes, I definitely will keep you updated on how my stem cell transplant goes after I feel normal again. I hope it works and I get a good remission out of it . Just hope I'm well for Christmas day to play with my daughters. If not, plan B is that my doctors want to do a allogeneic (donor) stem cell transplant after. Sounds very risky, but the out come makes it very tempting. Let's hope I don't have to decide on plan B for ages..
All the best mate.
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
HI Mr. Potatohead,
I was really bad at diagnosis . I spent 2 weeks in the hospital. I had a compression fractures and broken ribs from sneezing prior to diagnosis. That is one reason you never see me writing things like "myeloma is a chronic disease like diabetes". It is far from it for the majority of patients, In my opinion.
I think the main question you would need to find out about with respect to doing an auto is how long they think you would be unable to get therapy after the auto. If that time period would be prolonged in your case, you may want to ask your doctor about potentially getting your alkylators via metronomic administration, as opposed to a high dose via an auto. The papers I have seen about metronomic therapy are from UAMS while Dr. Barlogie was there with respect to myeloma patients. Since autos typically are most effective for standard risk patients that had a good response to induction, UAMS was experimenting with lower dose therapies to avoid prolonged periods without therapy. I am not sure why facilities like Mayo put autos into the treatment plans for high risk patients since they typically are not very effective for high risk patients and those patients do not get to enjoy a long treatment free interval. Here is a link to a paper about metronomic therapy and a couple to myeloma studies using it.
http://www.sciencedirect.com/science/article/pii/S1028455912000587
http://www.bloodjournal.org/content/126/23/1843?sso-checked=true
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3696620/
The other question I would have for your doctor is what does he/she plan on doing next. I personally would try and avoid combining an IMID and a proteasome inhibitor since the newer drugs need to be combined with them to be effective. Daratumumab shows single agent activity, but that is only for a small percentage for relapsed and refractory patients and the others need to be combined with either and IMID or a PI to be effective. Once a patient is relapsed and refractory to both classes of drugs, they are difficult to treat.
"The management of relapsed multiple myeloma requires a systematic approach based on several characteristic features of the patient. Prior treatment, including degree and depth of response, as well as treatment-related toxicities is important determinants in choosing subsequent treatment options. Risk stratification at the time of relapse based on chromosomal abnormalities and gene expression profiling is an emerging field. While OS of patients with multiple myeloma has improved, the survival of patients progressing after treatment with the IMiDs and bortezomib remains dismal16 underscoring the importance of continued efforts to better understand disease biology at the time of relapse and translate this into viable and effective treatment options and rational combinations to further improve patient outcome."
http://szpiczak.org/lang/aktualnosci/publikacje/rok_2016/IMWG_RRMM.pdf
Make your doctors think a step ahead. Good luck moving forward.
Mark
I was really bad at diagnosis . I spent 2 weeks in the hospital. I had a compression fractures and broken ribs from sneezing prior to diagnosis. That is one reason you never see me writing things like "myeloma is a chronic disease like diabetes". It is far from it for the majority of patients, In my opinion.
I think the main question you would need to find out about with respect to doing an auto is how long they think you would be unable to get therapy after the auto. If that time period would be prolonged in your case, you may want to ask your doctor about potentially getting your alkylators via metronomic administration, as opposed to a high dose via an auto. The papers I have seen about metronomic therapy are from UAMS while Dr. Barlogie was there with respect to myeloma patients. Since autos typically are most effective for standard risk patients that had a good response to induction, UAMS was experimenting with lower dose therapies to avoid prolonged periods without therapy. I am not sure why facilities like Mayo put autos into the treatment plans for high risk patients since they typically are not very effective for high risk patients and those patients do not get to enjoy a long treatment free interval. Here is a link to a paper about metronomic therapy and a couple to myeloma studies using it.
http://www.sciencedirect.com/science/article/pii/S1028455912000587
http://www.bloodjournal.org/content/126/23/1843?sso-checked=true
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3696620/
The other question I would have for your doctor is what does he/she plan on doing next. I personally would try and avoid combining an IMID and a proteasome inhibitor since the newer drugs need to be combined with them to be effective. Daratumumab shows single agent activity, but that is only for a small percentage for relapsed and refractory patients and the others need to be combined with either and IMID or a PI to be effective. Once a patient is relapsed and refractory to both classes of drugs, they are difficult to treat.
"The management of relapsed multiple myeloma requires a systematic approach based on several characteristic features of the patient. Prior treatment, including degree and depth of response, as well as treatment-related toxicities is important determinants in choosing subsequent treatment options. Risk stratification at the time of relapse based on chromosomal abnormalities and gene expression profiling is an emerging field. While OS of patients with multiple myeloma has improved, the survival of patients progressing after treatment with the IMiDs and bortezomib remains dismal16 underscoring the importance of continued efforts to better understand disease biology at the time of relapse and translate this into viable and effective treatment options and rational combinations to further improve patient outcome."
http://szpiczak.org/lang/aktualnosci/publikacje/rok_2016/IMWG_RRMM.pdf
Make your doctors think a step ahead. Good luck moving forward.
Mark
-
Mark11
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
Hi Mark,
Thanks very much for the great info. Some of this is very timely. My next planned regimen is Kyprolis and Pomalyst. Before embarking on this new approach I need to talk to my doctor about the danger you mentioned in being on an immunomodulatory drug as well as a proteasome inhibitor.
I had not heard about metronomic chemotherapy. Thanks for that as well. Not that surprising that it has been used in Dr. Barlogie's shop, given his reputation for innovation in myeloma treatments.
My Friday meeting at the transplant center did not go that well. Apparently my kidney function is not up to snuff to pass muster for an ASCT. On the other hand, your post seems to reinforce what I have read about ASCTs effectiveness for those with aggressive disease. Judging from the short responses I have gotten from novel agents, I think that's what I have.
Appreciate your thoughts, Mark.
Thanks very much for the great info. Some of this is very timely. My next planned regimen is Kyprolis and Pomalyst. Before embarking on this new approach I need to talk to my doctor about the danger you mentioned in being on an immunomodulatory drug as well as a proteasome inhibitor.
I had not heard about metronomic chemotherapy. Thanks for that as well. Not that surprising that it has been used in Dr. Barlogie's shop, given his reputation for innovation in myeloma treatments.
My Friday meeting at the transplant center did not go that well. Apparently my kidney function is not up to snuff to pass muster for an ASCT. On the other hand, your post seems to reinforce what I have read about ASCTs effectiveness for those with aggressive disease. Judging from the short responses I have gotten from novel agents, I think that's what I have.
Appreciate your thoughts, Mark.
-
MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
26 posts
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