Sorry for repeating what I'd posted earlier. I'd forgotten I posted about the 30% day-to-day change in this thread. I guess I was wrong that time. I don't want to be wrong again.
We're rooting for you!
Mike
Forums
Re: Darzalex and Kyprolis Treatment
Hi Mr. PH,
Sorry for repeating what I'd posted earlier. I'd forgotten I posted about the 30% day-to-day change in this thread. I guess I was wrong that time. I don't want to be wrong again.
We're rooting for you!
Mike
Sorry for repeating what I'd posted earlier. I'd forgotten I posted about the 30% day-to-day change in this thread. I guess I was wrong that time. I don't want to be wrong again.
We're rooting for you!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Darzalex and Kyprolis Treatment
Many thanks, mikeb.
I did talk to my oncologist about the slight increase in my kappa free light chain level, and he basically repeated what. you and TerryH have told me – that this might not be an indication of relapse at all, and that we had to take a few more readings before drawing any conclusions. Just because the uptick in my numbers on Kyprolis turned out to herald a serological relapse, does not mean that this first uptick on Darzalex means the same thing. We need more data.
My next free light chain serum assay will happen next week, so I'll keep my fingers crossed that the last one was an aberration.
I guess I have a tendency to expect the worst, which is one reason your positive posts are so helpful to read.
Thanks again mikeb and TerryH!
I did talk to my oncologist about the slight increase in my kappa free light chain level, and he basically repeated what. you and TerryH have told me – that this might not be an indication of relapse at all, and that we had to take a few more readings before drawing any conclusions. Just because the uptick in my numbers on Kyprolis turned out to herald a serological relapse, does not mean that this first uptick on Darzalex means the same thing. We need more data.
My next free light chain serum assay will happen next week, so I'll keep my fingers crossed that the last one was an aberration.
I guess I have a tendency to expect the worst, which is one reason your positive posts are so helpful to read.
Thanks again mikeb and TerryH!
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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: Darzalex and Kyprolis Treatment
Hi Mr P,
After 5 weeks of Darzalex, Velcade, and methylprednisolone, my lambda free light chain dropped from 7.3 to 2.0, kappa level down almost 50% to 135.4 (good news but still not normal), but the ratio has doubled to 67.70 (was 36.08) because lamba now very low while kappa still high.
Like you, MrP, I am not sure how important the ratio is. I'm glad to hear an oncologist told you it's not important in kappa myeloma when treatment is suppressing both lambda and kappa. An oncologist I had in the past told me it IS important. So confusing.
Your blood counts – WBC RBC and platelets – are very good. Mine are all suppressed from heavy treatment and my autologous stem cell transplant, but so far good enough to continue with my current treatment. I have not heard what my M-spike is, but will inquire if it is in yet when I have treatment tomorrow. I'm tolerating treatment well and this past week I felt better than I have for quite awhile.
However, the lytic lesion in my forehead is noticeably bigger since treatment began, now a good size lump on front of my forehead and beginning to look freakish. Some days pain and headache in area. I can cover it with a hat outside now that it is winter, but indoors I like my hat off. I can tie a bandana around my head when grandkids come over, but it reminds me of post-transplant days. I'm concerned the swelling is progressing to the eyebrow, then will go to the eyelid and eye. So worrisome. Its all wearing me down.
I am not scheduled to see the doctor until sometime in March. It seems so far away at this point.
I hope your next report is good and you continue to make good progress. It's too early in the Darzalex treatment to worry, but I certainly understand worry! Oh, and your numbers are great compared to mine! You still have the option of a transplant on the table, although I know you are hesitant and I understand your hesitation. There are more drugs yet if you don't want transplant. God bless
After 5 weeks of Darzalex, Velcade, and methylprednisolone, my lambda free light chain dropped from 7.3 to 2.0, kappa level down almost 50% to 135.4 (good news but still not normal), but the ratio has doubled to 67.70 (was 36.08) because lamba now very low while kappa still high.
Like you, MrP, I am not sure how important the ratio is. I'm glad to hear an oncologist told you it's not important in kappa myeloma when treatment is suppressing both lambda and kappa. An oncologist I had in the past told me it IS important. So confusing.
Your blood counts – WBC RBC and platelets – are very good. Mine are all suppressed from heavy treatment and my autologous stem cell transplant, but so far good enough to continue with my current treatment. I have not heard what my M-spike is, but will inquire if it is in yet when I have treatment tomorrow. I'm tolerating treatment well and this past week I felt better than I have for quite awhile.
However, the lytic lesion in my forehead is noticeably bigger since treatment began, now a good size lump on front of my forehead and beginning to look freakish. Some days pain and headache in area. I can cover it with a hat outside now that it is winter, but indoors I like my hat off. I can tie a bandana around my head when grandkids come over, but it reminds me of post-transplant days. I'm concerned the swelling is progressing to the eyebrow, then will go to the eyelid and eye. So worrisome. Its all wearing me down.
I am not scheduled to see the doctor until sometime in March. It seems so far away at this point.
I hope your next report is good and you continue to make good progress. It's too early in the Darzalex treatment to worry, but I certainly understand worry! Oh, and your numbers are great compared to mine! You still have the option of a transplant on the table, although I know you are hesitant and I understand your hesitation. There are more drugs yet if you don't want transplant. God bless
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Darzalex and Kyprolis Treatment
Hi Melpen. Thanks very much for your post. It sounds like you are making good progress, too. At least as far as the free light chain numbers are concerned.
My oncologist is very experienced in treating multiple myeloma, and he was categorical in his position that when an uninvolved free light chain is well below the bottom of the reference (normal) range, that a high ratio is rendered meaningless as far as evaluating disease progression is concerned. Yes, these kinds of discrepancies between what the "experts" tell us is unnerving, to say the least.
I am so sorry to hear about the growth of the lytic lesion on your forehead. Have you had imaging studies? Perhaps radiation might shrink it? I am sorry I can't be of further help, but if I were you, I'd press for an earlier appointment. You have been through an awful lot, and deserve to get to the bottom of a worrisome development like this as quickly as possible!
By the way, how do you feel these days about your transplant? As you correctly surmised, I am still weighing whether or not to do it, but I am currently leaning toward getting it done. At first my doctor was rather negative on it, touting all the wonderful new drugs that are coming out. But now he is prodding me toward it, possibly because the new drugs I have tried either haven't worked or else have worked for only a short time.
It is really hard to get a handle on what the right treatment should be for this weird disease.
I hope you continue to make progress and get this forehead lesion nailed ASAP.
G-d bless you!
My oncologist is very experienced in treating multiple myeloma, and he was categorical in his position that when an uninvolved free light chain is well below the bottom of the reference (normal) range, that a high ratio is rendered meaningless as far as evaluating disease progression is concerned. Yes, these kinds of discrepancies between what the "experts" tell us is unnerving, to say the least.
I am so sorry to hear about the growth of the lytic lesion on your forehead. Have you had imaging studies? Perhaps radiation might shrink it? I am sorry I can't be of further help, but if I were you, I'd press for an earlier appointment. You have been through an awful lot, and deserve to get to the bottom of a worrisome development like this as quickly as possible!
By the way, how do you feel these days about your transplant? As you correctly surmised, I am still weighing whether or not to do it, but I am currently leaning toward getting it done. At first my doctor was rather negative on it, touting all the wonderful new drugs that are coming out. But now he is prodding me toward it, possibly because the new drugs I have tried either haven't worked or else have worked for only a short time.
It is really hard to get a handle on what the right treatment should be for this weird disease.
I hope you continue to make progress and get this forehead lesion nailed ASAP.
G-d bless you!
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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: Darzalex and Kyprolis Treatment
Hi MrP.
A lot has transpired.
I got my M-spike results and it did drop a bit from 1.32 to 1.11 g/dL (13.2 to 11.1 g/l).
I was able to get a message through the huge hospital system to my doc and nurse practitioner and they immediately wanted me in radiation oncology to get another look at the skull lesion they found on PET/CT at the end of November. A preliminary CT of the skull shows the lesion is not a lot bigger, but near the eyebrow and near the sinus now. They will take a better image next week (I think with dye), but they made a "mask" for radiation and will begin radiation on the area this coming week. It will be 5 days of radiation and I will probably have to stop my myeloma treatment infusion for one week. Right now I feel like I'm getting a cold, so I'm drinking lots of hot chicken soup with garlic and hot tea. The last thing I need is a rhinovirus getting hold of me.
You asked how I feel these days about my transplant. I don't regret it as I did get 6 months drug free from it, and at the time it seemed the right thing to do. My bone marrow was not holding up that great due to my induction therapy: WBC, platelets, RBC were getting low, and the SPEP and M-spike were not responding much anymore. Each treatment cocktail would work for awhile then quit, and I was getting neutropenic, etc. My oncologist felt it was time to collect before my bone marrow got too compromised from treatment, and she felt the drugs had decreased cancerous plasma cells as low as they would go. There really didn't seem any other alternative at the time (there weren't so many drug options a few years ago). So, if I went back in time and had to do it all over again, yes, I would go through autologous transplant again.
Unfortunately, it did not give me remission like the lucky ones, but I knew it was a crap shoot I was willing to take. The actual transplant was much easier than I thought it would be. I had read many horror stories and I thought I'd be crawling from bed to bathroom vomiting, diarrhea, unable to eat, turning into a bag of bones and barely surviving. Not so at all – only one day of nausea and diarrhea, never vomited, never ran a fever. It was so much easier than expected! The worst: it took over 28 days for my ANC to get near 1000 so I could be released from the hospital. However, it is RARE to take so long.
As for what you should do, I don't know. If other drug options are running out, an autologous transplant may be the next road to travel for you. You have good blood counts despite having had so much treatment for your multiple myeloma, so that is in your favor. Your bone marrow is holding up well, so you must be in pretty good shape. Also it sounds like you would go into a transplant in better physical shape than me - two good working legs (I had fractured femur repair and lots of radiation) and no amyloidosis (I have that too).
I think it should be reassuring that a transplant is still an option for you, and you still have time to decide. Hopefully you will get a lot of mileage out of the Darzalex.
I do think autologous transplant will fade in time and be "old hat" because the new drugs in trial and research are going to specifically target cancer cells and specific ones at that. Autologous transplant uses melphalan and Cytoxan, old drugs toxic to many cells, but very effective at killing myeloma for some individuals, so hence still useful. I think if autologous transplantation is used years down the road, drugs that enhance or change the stem cells will be added before stem cells are infused back. They already are doing such things with CAR-T cell therapy. I think we are all a victim of the times we live in. THE perfect control or cure for multiple myeloma can't come soon enough!
A lot has transpired.
I got my M-spike results and it did drop a bit from 1.32 to 1.11 g/dL (13.2 to 11.1 g/l).
I was able to get a message through the huge hospital system to my doc and nurse practitioner and they immediately wanted me in radiation oncology to get another look at the skull lesion they found on PET/CT at the end of November. A preliminary CT of the skull shows the lesion is not a lot bigger, but near the eyebrow and near the sinus now. They will take a better image next week (I think with dye), but they made a "mask" for radiation and will begin radiation on the area this coming week. It will be 5 days of radiation and I will probably have to stop my myeloma treatment infusion for one week. Right now I feel like I'm getting a cold, so I'm drinking lots of hot chicken soup with garlic and hot tea. The last thing I need is a rhinovirus getting hold of me.
You asked how I feel these days about my transplant. I don't regret it as I did get 6 months drug free from it, and at the time it seemed the right thing to do. My bone marrow was not holding up that great due to my induction therapy: WBC, platelets, RBC were getting low, and the SPEP and M-spike were not responding much anymore. Each treatment cocktail would work for awhile then quit, and I was getting neutropenic, etc. My oncologist felt it was time to collect before my bone marrow got too compromised from treatment, and she felt the drugs had decreased cancerous plasma cells as low as they would go. There really didn't seem any other alternative at the time (there weren't so many drug options a few years ago). So, if I went back in time and had to do it all over again, yes, I would go through autologous transplant again.
Unfortunately, it did not give me remission like the lucky ones, but I knew it was a crap shoot I was willing to take. The actual transplant was much easier than I thought it would be. I had read many horror stories and I thought I'd be crawling from bed to bathroom vomiting, diarrhea, unable to eat, turning into a bag of bones and barely surviving. Not so at all – only one day of nausea and diarrhea, never vomited, never ran a fever. It was so much easier than expected! The worst: it took over 28 days for my ANC to get near 1000 so I could be released from the hospital. However, it is RARE to take so long.
As for what you should do, I don't know. If other drug options are running out, an autologous transplant may be the next road to travel for you. You have good blood counts despite having had so much treatment for your multiple myeloma, so that is in your favor. Your bone marrow is holding up well, so you must be in pretty good shape. Also it sounds like you would go into a transplant in better physical shape than me - two good working legs (I had fractured femur repair and lots of radiation) and no amyloidosis (I have that too).
I think it should be reassuring that a transplant is still an option for you, and you still have time to decide. Hopefully you will get a lot of mileage out of the Darzalex.
I do think autologous transplant will fade in time and be "old hat" because the new drugs in trial and research are going to specifically target cancer cells and specific ones at that. Autologous transplant uses melphalan and Cytoxan, old drugs toxic to many cells, but very effective at killing myeloma for some individuals, so hence still useful. I think if autologous transplantation is used years down the road, drugs that enhance or change the stem cells will be added before stem cells are infused back. They already are doing such things with CAR-T cell therapy. I think we are all a victim of the times we live in. THE perfect control or cure for multiple myeloma can't come soon enough!
-
Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Darzalex and Kyprolis Treatment
HI Melpen
Congrats on getting a reduction in you M-spike. That's great news! I'm also very happy to hear your medical team is planning to go after that skull lesion with radiation. I understand that can work very well, and I wish you the best of luck with it. Hot chicken soup can have magical properties as well, and I hope it knocks out your cold. It's done the job for me on many occasions.
Thanks for sharing your feedback on your transplant. Hard to know what to do, isn't it? I'm probably going to go ahead with it, especially since my oncologist isn't getting the expected results from the novel agents. I am sorry to hear you didn't score a big remission from the transplant, and yet it is great news that none of the horror stories concerning after effects hit you. The prospect of six months without drugs and their side effects sounds pretty good to me right now, so if I pass the screening tests, I will probably go ahead with it. I would like to just feel like I am back to my old self for a while at this point, even if it works for only a relatively short time.
You're right about my bone marrow holding up well. My oncologist tells me that despite having a relatively aggressive case of multiple myeloma, my bone marrow seems pretty resilient. He's an optimistic guy, and his positive attitude really does help, since I tend to be a "glass is half empty" kind of guy.
I like your comment about all of us being victims of the times we are living in. So good luck to all of us.
Thanks again for sharing. I am still on Darzalex and Kyprolis for now, and will keep this thread updated with my results on that regimen, and with my progress toward a stem cell transplant.
Good luck and be well!
Congrats on getting a reduction in you M-spike. That's great news! I'm also very happy to hear your medical team is planning to go after that skull lesion with radiation. I understand that can work very well, and I wish you the best of luck with it. Hot chicken soup can have magical properties as well, and I hope it knocks out your cold. It's done the job for me on many occasions.
Thanks for sharing your feedback on your transplant. Hard to know what to do, isn't it? I'm probably going to go ahead with it, especially since my oncologist isn't getting the expected results from the novel agents. I am sorry to hear you didn't score a big remission from the transplant, and yet it is great news that none of the horror stories concerning after effects hit you. The prospect of six months without drugs and their side effects sounds pretty good to me right now, so if I pass the screening tests, I will probably go ahead with it. I would like to just feel like I am back to my old self for a while at this point, even if it works for only a relatively short time.
You're right about my bone marrow holding up well. My oncologist tells me that despite having a relatively aggressive case of multiple myeloma, my bone marrow seems pretty resilient. He's an optimistic guy, and his positive attitude really does help, since I tend to be a "glass is half empty" kind of guy.
I like your comment about all of us being victims of the times we are living in. So good luck to all of us.
Thanks again for sharing. I am still on Darzalex and Kyprolis for now, and will keep this thread updated with my results on that regimen, and with my progress toward a stem cell transplant.
Good luck and be well!
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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: Darzalex and Kyprolis Treatment
Hi Mr. P and Melpen,
Thank you for your updates on this thread, I find them very relevant and helpful.
Just wanted to report here that my husband has had a good response to his Darzalex + dexamethasone (no Kyprolis) treatment so far: M-spike down from 1.5 to 1.1 g/dL (15 to 11 g/l) in 5 weeks of treatment. This is very encouraging for us, after several months of trials and tribulations with other treatments. Crossing fingers that this good trend continues. More details here:
"Less than VGPR pre-stem cell transplant: what to expect?" (started Jan 22, 2017)
We went for a second opinion yesterday, and it seems we will be (hopefully) looking at a transplant soon regardless of further response. Of course, further improvements in the numbers would be very welcome and helpful.
Looking forward to good news for both of you. Thank you for the good info and a good discussion. It does help to understand how these choices are working out for others in somewhat similar situations.
Thanks,
Alizabeth
Thank you for your updates on this thread, I find them very relevant and helpful.
Just wanted to report here that my husband has had a good response to his Darzalex + dexamethasone (no Kyprolis) treatment so far: M-spike down from 1.5 to 1.1 g/dL (15 to 11 g/l) in 5 weeks of treatment. This is very encouraging for us, after several months of trials and tribulations with other treatments. Crossing fingers that this good trend continues. More details here:
"Less than VGPR pre-stem cell transplant: what to expect?" (started Jan 22, 2017)
We went for a second opinion yesterday, and it seems we will be (hopefully) looking at a transplant soon regardless of further response. Of course, further improvements in the numbers would be very welcome and helpful.
Looking forward to good news for both of you. Thank you for the good info and a good discussion. It does help to understand how these choices are working out for others in somewhat similar situations.
Thanks,
Alizabeth
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Alizabeth - Name: Alizabeth
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 61
Re: Darzalex and Kyprolis Treatment
Hi Alizabeth,
Thanks for sharing the good news about your husband's response to Darzalex, and good luck for further progress and as you weigh a stem cell transplant.
I also had a good response to cyclophosphamide and Kyprolis, but, alas, it only lasted eight months.
One of the reasons my oncologist chose cyclophosphamide for me rather than melphalan, is that cyclophosphamide has a stem cell sparing effect, whereas melphalan can damage one's stem cells, complicating the prospect of a stem cell transplant.
I wish you all the best as you continue your journey!
Thanks for sharing the good news about your husband's response to Darzalex, and good luck for further progress and as you weigh a stem cell transplant.
I also had a good response to cyclophosphamide and Kyprolis, but, alas, it only lasted eight months.
One of the reasons my oncologist chose cyclophosphamide for me rather than melphalan, is that cyclophosphamide has a stem cell sparing effect, whereas melphalan can damage one's stem cells, complicating the prospect of a stem cell transplant.
I wish you all the best as you continue your journey!
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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: Darzalex and Kyprolis Treatment
Dear Mr Potatohead,
I'm really pleased to read positive news regarding your treatment plan, and your thread is a great help to us all.
All the best,
Dean
I'm really pleased to read positive news regarding your treatment plan, and your thread is a great help to us all.
All the best,
Dean
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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: Darzalex and Kyprolis Treatment
Many thanks, Dean. Your kind words mean a lot.
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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
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