Thank you everyone for your responses to my question. I'm with you K_Sash. I'm glad to hear how active you are! I stay pretty active too, but I have let some things slide. My goal for 2015 it to plan on living as if nothing was wrong with my blood. At first I was afraid to cycle or lift any weights, but I thing if I am careful I can resume these activities. I remember cycling all around Bainbridge Island with my brother the summer before my diagnosis and felt fine. I probably had active myeloma at that time but just didn't know it.
I am seeing 3 different oncologists now, my local doctor, Dr. Wolf at UCSF and Dr Libby in Seattle (we have a second home on Bainbridge Island). All 3 have said that it's not clear whether or not the early SCT increases chances of survival, and that with the new medications that are now available it's role is changing. We are going to keep close tabs on me with bone marrow biopsies every 4 months to make sure nothing is getting worse. I'm still waiting to see if my insurance will cover the storage. We have tricare.
Best of luck to you on your journey with myeloma. I have done a lot of reading and talking to doctors, but since the verdict seems to be split right down the middle, it doesn't help me make a decision for my individual case. Dr. Wolf sent my bone marrow out for a new very sensitive DNA marker test, but we're still waiting for DNA from my original biopsy to compare. Maybe that test will give him even more detailed information about my specific situation that will help with the decision. For now I am comfortable with waiting.
Forums
-
PeggyB - Name: Peggy B
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 60
Re: How did you decide whether to have a SCT or not?
I wanted to add that I am 60, will turn 61 in April. I asked my Dr Wolf if I could be off of medication after a stem cell transplant, because that would factor into my decision. He said unfortunately not. It seemed like, if I have to be on medication either way, I'll opt out. I'm not sure I understand why I would have to continue on maintenance therapy after the SCT. I'll have to ask him that question again when I see him in 6 weeks for harvesting.
-
PeggyB - Name: Peggy B
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 60
Re: How did you decide whether to have a SCT or not?
Hello all,
I would like to correct two of my mistakes when I was writing to Peggy in the "thinking out loud" manner.
1. Boris is absolutely right. Dr. Rajkumar's "Con" viewpoint is addressing:
“Should all eligible patients with multiple myeloma receive autologous stem-cell transplant as part of initial treatment?”
2. The article by Phillipe Moreau states the "Pros" of the early ASCT.
As Boris pointed out, there are two completely different camps in this discussion, and Dr. Rajkumar's article I mentioned certainly is NOT "anti-transplant."
Thanks, Boris, for the clarification.
I hope that my tentative current decision to harvest my stem cells would indicate that I am not completely ruling out ASCT at a future date, almost like Dr. Rajkumar's closing paragraphs stated in the article mentioned above. I believe Peggy has indicated the same.
I am very hopeful, though, that I do remain in VGPR and PFR for many years after this induction therapy and that, within the next 5-10 years, with the newer drugs and potential "cures," I may not need any transplant. Of course, my wife has warned me that I would be over 75 in 8 years, and I would really have a hard time with the transplant at that age.
Peggy,
It is too early for me to make any decisions yet. I will know how well my induction therapy is working only after the thorough blood test planned after 8 weeks of my chemo. I still do not have any cytogenetics results from the bone marrow biopsy. I hope to know those in a few weeks.
Boris,
I want to sincerely thank you for making this discussion amongst myeloma patients possible. Personally, it has given me first hand information on avoiding severeness of the Velcade rash, thanks to Multibilly guiding me to Dan's post about the air bubble technique used at the Mayo Clinic.
Also, Dr. Santiago's thread warned me about the possible dizziness, or even collapsing, after a big meal, while going through the induction chemo, and I am watching my sugar.
The encouragement and moral support is invaluable. I do appreciate all you have done for us, and I have certainly benefited already. And I am sure all of us participating in this discussion feel the same way. Thanks again.
K_Shah
I would like to correct two of my mistakes when I was writing to Peggy in the "thinking out loud" manner.
1. Boris is absolutely right. Dr. Rajkumar's "Con" viewpoint is addressing:
“Should all eligible patients with multiple myeloma receive autologous stem-cell transplant as part of initial treatment?”
2. The article by Phillipe Moreau states the "Pros" of the early ASCT.
As Boris pointed out, there are two completely different camps in this discussion, and Dr. Rajkumar's article I mentioned certainly is NOT "anti-transplant."
Thanks, Boris, for the clarification.
I hope that my tentative current decision to harvest my stem cells would indicate that I am not completely ruling out ASCT at a future date, almost like Dr. Rajkumar's closing paragraphs stated in the article mentioned above. I believe Peggy has indicated the same.
I am very hopeful, though, that I do remain in VGPR and PFR for many years after this induction therapy and that, within the next 5-10 years, with the newer drugs and potential "cures," I may not need any transplant. Of course, my wife has warned me that I would be over 75 in 8 years, and I would really have a hard time with the transplant at that age.
Peggy,
It is too early for me to make any decisions yet. I will know how well my induction therapy is working only after the thorough blood test planned after 8 weeks of my chemo. I still do not have any cytogenetics results from the bone marrow biopsy. I hope to know those in a few weeks.
Boris,
I want to sincerely thank you for making this discussion amongst myeloma patients possible. Personally, it has given me first hand information on avoiding severeness of the Velcade rash, thanks to Multibilly guiding me to Dan's post about the air bubble technique used at the Mayo Clinic.
Also, Dr. Santiago's thread warned me about the possible dizziness, or even collapsing, after a big meal, while going through the induction chemo, and I am watching my sugar.
The encouragement and moral support is invaluable. I do appreciate all you have done for us, and I have certainly benefited already. And I am sure all of us participating in this discussion feel the same way. Thanks again.
K_Shah
-
K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: How did you decide whether to have a SCT or not?
My decision to have an early transplant was not easy and I am sure it is difficult for anyone faced with that option. Primarily I made the decision based on three elements.
One, I'm as healthy now as I will every be for the rest of my life. Collection and storage was an option for me, however I can't kid myself into thinking I will be eligible and/or healthy enough to go thru transplant at 68 or 70. Transplant is just another tool in the box for treating multiple myeloma and I didn't want to risk giving up that option.
Two, all major studies show that early transplant results in a deeper and longer response, however it does not prolong over all survival.
Three, it was the consensus of my two multiple myeloma specialists that early transplant was the preferred choice.
Other factors were the impact on my employment, family, and my response from induction therapy. It certainly is not an easy decision for anyone to make.
My transplant went very well and I was one of the lucky ones. I had no diarrhea and no mouth sores. I had two short episodes of nausea, and my blood counts were recovering by day 8. Looking back, I'm glad I made the decision to transplant early.
I wish you the very best.
One, I'm as healthy now as I will every be for the rest of my life. Collection and storage was an option for me, however I can't kid myself into thinking I will be eligible and/or healthy enough to go thru transplant at 68 or 70. Transplant is just another tool in the box for treating multiple myeloma and I didn't want to risk giving up that option.
Two, all major studies show that early transplant results in a deeper and longer response, however it does not prolong over all survival.
Three, it was the consensus of my two multiple myeloma specialists that early transplant was the preferred choice.
Other factors were the impact on my employment, family, and my response from induction therapy. It certainly is not an easy decision for anyone to make.
My transplant went very well and I was one of the lucky ones. I had no diarrhea and no mouth sores. I had two short episodes of nausea, and my blood counts were recovering by day 8. Looking back, I'm glad I made the decision to transplant early.
I wish you the very best.
-
Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: How did you decide whether to have a SCT or not?
Thank you, everyone, for all the contributions in this thread. This is turning into a really great discussion.
K_Shash - I appreciate your feedback about the forum and I'm very glad you've found it (and the rest of The Beacon) to be a valuable resource. And there's no reason to apologize for your earlier comments in the thread. My follow-up to your posting was intended just to make sure there were no misunderstandings about the opinions different myeloma specialists hold on the topic being discussed here.
Multibilly - Thanks, as always, for your feedback and for your very valuable contributions to the forum.
Happy New Year to all!
K_Shash - I appreciate your feedback about the forum and I'm very glad you've found it (and the rest of The Beacon) to be a valuable resource. And there's no reason to apologize for your earlier comments in the thread. My follow-up to your posting was intended just to make sure there were no misunderstandings about the opinions different myeloma specialists hold on the topic being discussed here.
Multibilly - Thanks, as always, for your feedback and for your very valuable contributions to the forum.
Happy New Year to all!
-
Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: How did you decide whether to have a SCT or not?
Hi All,
The decision whether I would have an SCT as part of my initial treatment was made by a coin flip – a computerized coin flip. I am participating in a clinical trial designed to help answer the question being discussed in this thread ("Randomized Trial of Lenalidomide, Bortezomib, Dexamethasone vs High-Dose Treatment With SCT in multiple myeloma Patients up to Age 65"). By the way, the United States portion of this trial is being led by Dr. Richardson, who was mentioned earlier in this thread. The link I just gave provides details of the study, which is still recruiting participants in case anyone is interested.
I was randomized into the SCT arm of the trial. My SCT was performed in May 2013, and I've had a good response to the full course of treatment so far. I'm still in the maintenance phase of the study.
I'd done some quick research about the pros and cons of early SCT and found, as others have described here, that there was no consensus. So, in my heart of hearts, I was ok with either way the coin flip would go for me. Given that, I decided to participate in the trial.
Also I'd like to second K_Shash's comments thanking Boris and the rest of the Myeloma Beacon staff. This site is a tremendous resource for those of us dealing with multiple myeloma as patients or caregivers. And thanks also to all who participate in the forum. Every day I learn something new from you all.
Best wishes to everyone for a happy, healthy 2015!
Mike
The decision whether I would have an SCT as part of my initial treatment was made by a coin flip – a computerized coin flip. I am participating in a clinical trial designed to help answer the question being discussed in this thread ("Randomized Trial of Lenalidomide, Bortezomib, Dexamethasone vs High-Dose Treatment With SCT in multiple myeloma Patients up to Age 65"). By the way, the United States portion of this trial is being led by Dr. Richardson, who was mentioned earlier in this thread. The link I just gave provides details of the study, which is still recruiting participants in case anyone is interested.
I was randomized into the SCT arm of the trial. My SCT was performed in May 2013, and I've had a good response to the full course of treatment so far. I'm still in the maintenance phase of the study.
I'd done some quick research about the pros and cons of early SCT and found, as others have described here, that there was no consensus. So, in my heart of hearts, I was ok with either way the coin flip would go for me. Given that, I decided to participate in the trial.
Also I'd like to second K_Shash's comments thanking Boris and the rest of the Myeloma Beacon staff. This site is a tremendous resource for those of us dealing with multiple myeloma as patients or caregivers. And thanks also to all who participate in the forum. Every day I learn something new from you all.
Best wishes to everyone for a happy, healthy 2015!
Mike
-
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: How did you decide whether to have a SCT or not?
Peggy,
I have been faced with whether to have a SCT twice, and have opted against it both times. I can only offer some of the reasoning behind my decisions and hope it helps you with your decision.
The first time was following my initial diagnosis. My doctor at the time felt my two best options were a SCT or getting into the CRD (carfilzomib / Kyprolis, Revlimid, dexamethasone) trial he was running. I was 52 at the time, very active, and in charge of an important project at work, so I was not keen on the idea of being out of commission for 6-9 months. Furthermore, the CRD regimen was showing very promising results, so I opted for that. I ended up reaching a complete response.
The second time was this past summer. I started relapsing the beginning of this year, and by mid-year, my M-protein and IgA were starting to increase significantly. I met with my current doctor, as well as my original doctor from the CRD trial, and we narrowed my options to
My feeling is that PDC followed by SCT may provide a longer response than the SCT followed by PDC or other treatment. My logic is the SCT wipes out virtually all your stem cells, so the SCT tends to be more thorough than drug treatment and should still be very effective after the PDC, whereas, from what I've read, following relapse after a SCT, subsequent treatment tends to be less effective, which implies to me the PDC may be more effective before a SCT than after. More than likely though, it may not make much difference, in which case I come back to wanting to delay the SCT until it's less disruptive.
As it turns out, I went back on Revlimid during this process, and my M-protein has stabilized for the time being, so I am delaying the PDC trial until my levels start going up again.
Also, you mentioned that remaining on medication after the SCT was a factor. Both the doctors I talked to indicate there is a shift in the philosophy for treating myeloma, and that many doctors now feel it should be treated chronically with indefinite maintenance following induction treatment. I opted to forego the maintenance following my CRD trial because I wanted to be chemo-free. I ended up relapsing within a year, whereas 70% of those on the trial that stayed on maintenance are still in remission (in retrospect, I may not have made the best decision).
Good luck with your decision.
I have been faced with whether to have a SCT twice, and have opted against it both times. I can only offer some of the reasoning behind my decisions and hope it helps you with your decision.
The first time was following my initial diagnosis. My doctor at the time felt my two best options were a SCT or getting into the CRD (carfilzomib / Kyprolis, Revlimid, dexamethasone) trial he was running. I was 52 at the time, very active, and in charge of an important project at work, so I was not keen on the idea of being out of commission for 6-9 months. Furthermore, the CRD regimen was showing very promising results, so I opted for that. I ended up reaching a complete response.
The second time was this past summer. I started relapsing the beginning of this year, and by mid-year, my M-protein and IgA were starting to increase significantly. I met with my current doctor, as well as my original doctor from the CRD trial, and we narrowed my options to
- Going back on CRD, followed by SCT, followed by CRD maintenance, or
- PDC (pomalidomide, dexamethasone, carfilzomib) trial taking PDC three weeks out of four, for 8 cycles, followed by PDC maintenance every other week.
My feeling is that PDC followed by SCT may provide a longer response than the SCT followed by PDC or other treatment. My logic is the SCT wipes out virtually all your stem cells, so the SCT tends to be more thorough than drug treatment and should still be very effective after the PDC, whereas, from what I've read, following relapse after a SCT, subsequent treatment tends to be less effective, which implies to me the PDC may be more effective before a SCT than after. More than likely though, it may not make much difference, in which case I come back to wanting to delay the SCT until it's less disruptive.
As it turns out, I went back on Revlimid during this process, and my M-protein has stabilized for the time being, so I am delaying the PDC trial until my levels start going up again.
Also, you mentioned that remaining on medication after the SCT was a factor. Both the doctors I talked to indicate there is a shift in the philosophy for treating myeloma, and that many doctors now feel it should be treated chronically with indefinite maintenance following induction treatment. I opted to forego the maintenance following my CRD trial because I wanted to be chemo-free. I ended up relapsing within a year, whereas 70% of those on the trial that stayed on maintenance are still in remission (in retrospect, I may not have made the best decision).
Good luck with your decision.
-
Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: How did you decide whether to have a SCT or not?
Hello Peggy,
I was first diagnosed in January 2014. It just hit me today that its only a few weeks away since the anniversary of my diagnosis and a year that I have been off work.
I was started out with 25 mg of Revlimid and 40 mg of dexamethasone. It was working quite well until a severe rash showed up about 6 months out. My SCT doctor said that she thought that was unusual to have that treatment for that long without any issues and then get hit big time with a 60% body rash.
Anyway, I had to change to Velcade on days 1, 4, 8 &11 with the same 40 mg of dex once per week. My initial treatment was working well enough that my transplant doctor thought I could stay on Revlimid and do a stem cell harvest and storage, then wait to transplant a few years off. She did tell me that I would need to stop Revlimid before my cell harvest.
Now with my new treatments, I have experienced a slight amount of neuropathy in my feet. I have been on this treatment for several months now.
Due to several situations that have come up recently for my 94-year old mother, I have to take care of her needs and deal with my own. There are so many things that can change for anyone everyday.
I really thought I could go down that same path that you are considering, but due to my Revlimid issues and now a possible neuropathy issue, I have to ask myself: What is next?
So I have decided to do the cell harvest and storage in a few months, then do a transplant towards the end of the year if all goes well. I was also told that, after the stem cell harvest, I would be on a lower-dose maintenance of Velcade / dex. Fewer drugs sounds good to me. It would be nice to be drug free or at least a lower maintenance at some point.
If I don't do the transplant, I will never know one way or the other if it would have helped.
One other thing that I found out is that some insurance companies don't like to have stem cells stored for an extended time, and mine won't cover storage for a second transplant. I don't know what storing cells cost, but I am sure it's more than I could afford to pay for on my own.
I hope this new year brings nothing but a positive outlook for all of us!
Best of luck, Peggy!
Castaway
I was first diagnosed in January 2014. It just hit me today that its only a few weeks away since the anniversary of my diagnosis and a year that I have been off work.
I was started out with 25 mg of Revlimid and 40 mg of dexamethasone. It was working quite well until a severe rash showed up about 6 months out. My SCT doctor said that she thought that was unusual to have that treatment for that long without any issues and then get hit big time with a 60% body rash.
Anyway, I had to change to Velcade on days 1, 4, 8 &11 with the same 40 mg of dex once per week. My initial treatment was working well enough that my transplant doctor thought I could stay on Revlimid and do a stem cell harvest and storage, then wait to transplant a few years off. She did tell me that I would need to stop Revlimid before my cell harvest.
Now with my new treatments, I have experienced a slight amount of neuropathy in my feet. I have been on this treatment for several months now.
Due to several situations that have come up recently for my 94-year old mother, I have to take care of her needs and deal with my own. There are so many things that can change for anyone everyday.
I really thought I could go down that same path that you are considering, but due to my Revlimid issues and now a possible neuropathy issue, I have to ask myself: What is next?
So I have decided to do the cell harvest and storage in a few months, then do a transplant towards the end of the year if all goes well. I was also told that, after the stem cell harvest, I would be on a lower-dose maintenance of Velcade / dex. Fewer drugs sounds good to me. It would be nice to be drug free or at least a lower maintenance at some point.
If I don't do the transplant, I will never know one way or the other if it would have helped.
One other thing that I found out is that some insurance companies don't like to have stem cells stored for an extended time, and mine won't cover storage for a second transplant. I don't know what storing cells cost, but I am sure it's more than I could afford to pay for on my own.
I hope this new year brings nothing but a positive outlook for all of us!
Best of luck, Peggy!
Castaway
-
Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: How did you decide whether to have a SCT or not?
Hey Kevin.
Have you stored some stem cells so you can have a SCT whenever you feel it is right? I agree with your reasoning about your treatment but think if you have the stem cells in storage, you are in control.
The one negative about many years of taking medication is that it might hurt your body's ability to produce enough stem calls.
Cathy
Have you stored some stem cells so you can have a SCT whenever you feel it is right? I agree with your reasoning about your treatment but think if you have the stem cells in storage, you are in control.
The one negative about many years of taking medication is that it might hurt your body's ability to produce enough stem calls.
Cathy
-
antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: How did you decide whether to have a SCT or not?
Thanks Boris, for your understanding.
I am an old-time electrical engineer and was involved in some post grad work. So it bothers me that I made some comments without a clear understanding of the articles I referred to. I did not read the detailed discussions from the ASH 2014 conference. More to read, study and reflect on for this long weekend!! I hope I can find something on the following 'out of the box' thought:
Zapping the monoclonal cells:
On the electrical engineering / radiation / microwaves, etc.:
Has anyone come across any research on very selectively 'boiling out' the monoclonal plasma cells (throughout the body in a whole body scanner / microwave)? The microwave ovens act only on the water molecules (and molecules of similar size). Can we not be able to develop a machine that, after the biopsy and knowing the exact characteristics of that monoclonal cell, targets only those cells and very selectively 'boils them out?
My wife mentioned that the prostrate cancers can be treated that way, but the treatment is only for a small area. I am going to discuss this in a greater detail wit my old research friend at Agilent who is still working on "state of the art" lasers and quantum mechanics applications.
Kevin J,
All I can say is I am 110% in agreement with your conclusions.
Castaway,
I am only on my 16th morning of my chemo. I won't know the effectiveness of my current dosage, but I think I am on an ideal dose of all my RVD prescriptions, which are:
Therefore, I strongly urge you to check the levels of chemo you are given. My own dosage seems right, but it is too early to tell. However, I have read quite a few posts that indicate a lot of others had to have their dex dropped from the 40 mg / week level to close to 20-25 mg / week.
I did not come across anyone with such a frequent Velcade, particularly after 6 months. I thought most others went through 8 - 12 weeks of this induction and maintenance after that; assuming they had a good partial response after the 3-month induction.
By the way, my oncologist changed the oncology pharmacy's usual 40 mg / week dex dose to 20 mg at the last minute after reviewing the chemo prescription. The dose must be close to optimum now because I do have 'borderline' tingling in my fingers on the 4th and 5th day, sleepless nights on day 1 and day 2. Benadryl helps me on those (thanks to Tracy J's post).
My 'fast walk' range goes up from a few yards on day 1 to about 500 yards on day 2 to about a 1,000 yard round trip on day 3. On day 7 I have been able to play at least 9 holes of golf, walking and carrying the bag.
Again, this is the experience of the last two weeks only, but my oncologist told me that it should not get worse. I experienced severe heart pounding and throbbing throughout my body when I tried to do my usual push-ups and squats on night 1 and day 2 mornings. I wasn't sure it was Velcade or dex, till I had the chest pounding at around 11:00 a.m., only 3 hours after the dex and well before my weekly Velcade shot.
Please refer to Kevin J's post above. If you need to take care of your 94-year old mother, the reduced chemo dosage would be great. However, can you afford to be 'out of commission' for 60 to 90 days?
Again I am just wondering if your chemo drug levels are too high and the root cause of all these problems developing after 6 months. I do not know what degree of plasma cell percentage, bone lesions, and M-spike you started with, and how this chemo has helped you per your recent blood tests. You may find some of Dr. Santiago's personal experience in his "Recently Diagnosed with Multiple Myeloma" thread of help. Again, my opinions only!!
Also, PeggyB's (she started this wonderful discussion) introductory post tells you how she too had to have her chemo regimen re-adjusted because the first 'cocktail' didn't work well.
I am no doctor or an 'expert' in this field, but I feel deeply concerned about your predicament and I am listing these points in this long message only to try and help anyway I can think of.
I sincerely wish you all the best!! I assume that you already have had a 'second opinion' from another oncologist or a myeloma expert.
K_Shash
I am an old-time electrical engineer and was involved in some post grad work. So it bothers me that I made some comments without a clear understanding of the articles I referred to. I did not read the detailed discussions from the ASH 2014 conference. More to read, study and reflect on for this long weekend!! I hope I can find something on the following 'out of the box' thought:
Zapping the monoclonal cells:
On the electrical engineering / radiation / microwaves, etc.:
Has anyone come across any research on very selectively 'boiling out' the monoclonal plasma cells (throughout the body in a whole body scanner / microwave)? The microwave ovens act only on the water molecules (and molecules of similar size). Can we not be able to develop a machine that, after the biopsy and knowing the exact characteristics of that monoclonal cell, targets only those cells and very selectively 'boils them out?
My wife mentioned that the prostrate cancers can be treated that way, but the treatment is only for a small area. I am going to discuss this in a greater detail wit my old research friend at Agilent who is still working on "state of the art" lasers and quantum mechanics applications.
Kevin J,
All I can say is I am 110% in agreement with your conclusions.
Castaway,
I am only on my 16th morning of my chemo. I won't know the effectiveness of my current dosage, but I think I am on an ideal dose of all my RVD prescriptions, which are:
- Dexamethasone 20 mg, weekly in the morning (Wednesdays)
- Velcade (dose based on my body weight, surface, etc.), weekly, around 1:30 p.m. (Wednesdays)
- Revlimid 15 mg every night for 3 weeks and 1 week off
Therefore, I strongly urge you to check the levels of chemo you are given. My own dosage seems right, but it is too early to tell. However, I have read quite a few posts that indicate a lot of others had to have their dex dropped from the 40 mg / week level to close to 20-25 mg / week.
I did not come across anyone with such a frequent Velcade, particularly after 6 months. I thought most others went through 8 - 12 weeks of this induction and maintenance after that; assuming they had a good partial response after the 3-month induction.
By the way, my oncologist changed the oncology pharmacy's usual 40 mg / week dex dose to 20 mg at the last minute after reviewing the chemo prescription. The dose must be close to optimum now because I do have 'borderline' tingling in my fingers on the 4th and 5th day, sleepless nights on day 1 and day 2. Benadryl helps me on those (thanks to Tracy J's post).
My 'fast walk' range goes up from a few yards on day 1 to about 500 yards on day 2 to about a 1,000 yard round trip on day 3. On day 7 I have been able to play at least 9 holes of golf, walking and carrying the bag.
Again, this is the experience of the last two weeks only, but my oncologist told me that it should not get worse. I experienced severe heart pounding and throbbing throughout my body when I tried to do my usual push-ups and squats on night 1 and day 2 mornings. I wasn't sure it was Velcade or dex, till I had the chest pounding at around 11:00 a.m., only 3 hours after the dex and well before my weekly Velcade shot.
Please refer to Kevin J's post above. If you need to take care of your 94-year old mother, the reduced chemo dosage would be great. However, can you afford to be 'out of commission' for 60 to 90 days?
Again I am just wondering if your chemo drug levels are too high and the root cause of all these problems developing after 6 months. I do not know what degree of plasma cell percentage, bone lesions, and M-spike you started with, and how this chemo has helped you per your recent blood tests. You may find some of Dr. Santiago's personal experience in his "Recently Diagnosed with Multiple Myeloma" thread of help. Again, my opinions only!!
Also, PeggyB's (she started this wonderful discussion) introductory post tells you how she too had to have her chemo regimen re-adjusted because the first 'cocktail' didn't work well.
I am no doctor or an 'expert' in this field, but I feel deeply concerned about your predicament and I am listing these points in this long message only to try and help anyway I can think of.
I sincerely wish you all the best!! I assume that you already have had a 'second opinion' from another oncologist or a myeloma expert.
K_Shash
-
K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
41 posts
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