I have IgG kappa myeloma and was diagnosed in April 2011.
I have been on 10 mg Revlimid maintenance three weeks on, one week off, for about 2.5 years after my auto stem cell transplant [SCT] in October 2011.
I obtained a complete remission after the SCT, but last August I had a positive immunofixation ending my complete remission status. My Revlimid was increased to 15 mg. But soon I had trouble with low WBC – 2.0 and lower – and was getting sick a lot more easily. Revlimid had to be stopped a few times and eventually the dose was lowered back to 10mg last fall.
About three months ago my kappa light chain started increasing and the latest test last week was 39 mg/L. The complete results were:
Kappa: 39 mg/L
Lamdda: 15 mg/L
Kappa / Lamda Free Chain Ratio: 2.6
I have not taken dexamethasone since July 2011 when it and Velcade were stopped because of problems with orthostatic blood pressure. Velcade worked pretty well, though. In 2011 I got a at least a VGPR at the time it was stopped. I still have some neuropathy that was really bad in 2011 and has slowly been coming back in the last year.
My last bone marrow biopsy in February showed 5% plasma cells and the FISH had no chromosomal deficiencies.
My oncologist is recommending increasing the Revlimid dosage to 25 mg, which seems to be the next logical step. Maybe this time things will be different with my WBC than last time it was raised to 15 mg.
Does this make sense, and what would be thoughts and recommendations on this and, if 25 mg Revlimid does not get a positive response, what options or recommendations are there that I can talk with my oncologist about?
Also, are there any Beacon readers who had cases similar to mine and what did they do?
Not alarmingly high and I am sure those who are facing serious issues with relapsed refractory myeloma are wishing their problems were this simple.
Forums
9 posts
• Page 1 of 1
Re: Rising kappa FLCs on Revlimid maintenance - what to do?
Eric,
Although I have not yet had the stem cell transplant procedure, (I was diagnosed in April and am still doing induction), I wanted to give you my opinion with regard to Velcade.
When you took Velcade previously, was it sub-q [subcutaneous] or intravenous? I began with intravenous and definitely noticed some tingling in my feet. Then it was switched to sub-q, and that tingling pretty much stopped.
So, if higher dosages of Revlimid are causing you problems with your counts, maybe you could keep the dose at 10, and add Velcade once a week. Just a thought. Are you taking dex as well?
Good luck. I hope things come under control quickly again.
Although I have not yet had the stem cell transplant procedure, (I was diagnosed in April and am still doing induction), I wanted to give you my opinion with regard to Velcade.
When you took Velcade previously, was it sub-q [subcutaneous] or intravenous? I began with intravenous and definitely noticed some tingling in my feet. Then it was switched to sub-q, and that tingling pretty much stopped.
So, if higher dosages of Revlimid are causing you problems with your counts, maybe you could keep the dose at 10, and add Velcade once a week. Just a thought. Are you taking dex as well?
Good luck. I hope things come under control quickly again.
Re: Rising kappa FLCs on Revlimid maintenance - what to do?
Hey Eric,
I obviously have no personal experience to relate to you and I have no idea if the following makes medical sense or not for your situation
Building off what Ellen mentioned, it occurs to me would be that it would be useful to figure out whether it was the dex or the Velcade that caused your orthostatic hypotension. If you were able to determine if it was the Velcade or dex that was the offending drug, then you could consider adding a low dose of the non-offending drug, whether it be Velcade or dex.
I mention this because It seems like exploring the use of a different drug might make more sense if you already know that Revlimid causes WBC issues for you? Put another way, why does the doc think that you won't have WBC issues with Revlimid at 25 mg if you had these issues at a 15 mg dose?
Also, I believe that orthostatic hypotension can be counteracted via other drugs? So maybe that might also be something to explore? Again, I have no idea if this is a good idea or if it makes any medical sense.
I obviously have no personal experience to relate to you and I have no idea if the following makes medical sense or not for your situation
Building off what Ellen mentioned, it occurs to me would be that it would be useful to figure out whether it was the dex or the Velcade that caused your orthostatic hypotension. If you were able to determine if it was the Velcade or dex that was the offending drug, then you could consider adding a low dose of the non-offending drug, whether it be Velcade or dex.
I mention this because It seems like exploring the use of a different drug might make more sense if you already know that Revlimid causes WBC issues for you? Put another way, why does the doc think that you won't have WBC issues with Revlimid at 25 mg if you had these issues at a 15 mg dose?
Also, I believe that orthostatic hypotension can be counteracted via other drugs? So maybe that might also be something to explore? Again, I have no idea if this is a good idea or if it makes any medical sense.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Rising kappa FLCs on Revlimid maintenance - what to do?
Ellen and Billy,
I took Velcade intravenously as injection [subcutaneous] was not available at the time. I was hospitalized for a week because of the orthostatic blood pressure in 2011 which lead to the Velcade being stopped. I had started passing out completely when I stood up. My blood pressure would drop to 72 over nothing and pulse shot up to over 130 when I could stand.
A lot of lab testing was done to determine if the dexamethasone may have been causing problems with my thyroid or other parts of my endocrine system, but those results came back OK. I had a really bad case of neuropathy though, up to my knees, and I was taking Dilaudid [hydromorphone] and morphine for the pain and tried a bunch of anti-depressant medications that did not do much that I could tell. Food had also lost all its taste.
It was determined that it was likely Velcade that was causing the orthostatic blood pressure. When the Velcade and Dex were stopped in time, the neuropathy subsided and the orthostatic blood pressure went away. One of my doctors prescribed a drug, I do not remember now what it was, that did help some with the orthostatic blood pressure, but it only helped some, (my case was pretty severe). It was worth taking though.
I still have some residual neuropathy that has never gone away. Velcade worked well, though, and I had not become refractory to Velcade, so I have been thinking about discussing using that drug again if we need to. It has been nearly three years since I used it last and with a subcutaneous injection, maybe I will handle it without neuropathy becoming a problem.
I do not know why my oncologist thinks 25mg would not cause WBC issues when 15mg did before. Maybe he feels maybe we need to try it first and see what happens and how I respond this time. We have just been communicating by short emails since my last lab result. I am sure we will talk more at my next appointment and I want to come prepared. I also may want to consider talking about using dexamethasone again. That drug is a challenge to take, but it certainly is proven to enhance the effectiveness of all, or nearly all, myeloma treatments, and this is serious business. No one said living with myeloma was going to be easy or normal and sometimes we have to face reality and do what needs to be done.
There certainly are a lot of options still available. My goal is to try and get the most I can out of all the drugs available before I become refractory to them, trying to get as much time I can in so that more and better treatments will become available in the future and hopefully a cure. This seems to be the same game plan of most of the Beacon readers with myeloma.
Thanks for your response backs, they are helpful.
I took Velcade intravenously as injection [subcutaneous] was not available at the time. I was hospitalized for a week because of the orthostatic blood pressure in 2011 which lead to the Velcade being stopped. I had started passing out completely when I stood up. My blood pressure would drop to 72 over nothing and pulse shot up to over 130 when I could stand.
A lot of lab testing was done to determine if the dexamethasone may have been causing problems with my thyroid or other parts of my endocrine system, but those results came back OK. I had a really bad case of neuropathy though, up to my knees, and I was taking Dilaudid [hydromorphone] and morphine for the pain and tried a bunch of anti-depressant medications that did not do much that I could tell. Food had also lost all its taste.
It was determined that it was likely Velcade that was causing the orthostatic blood pressure. When the Velcade and Dex were stopped in time, the neuropathy subsided and the orthostatic blood pressure went away. One of my doctors prescribed a drug, I do not remember now what it was, that did help some with the orthostatic blood pressure, but it only helped some, (my case was pretty severe). It was worth taking though.
I still have some residual neuropathy that has never gone away. Velcade worked well, though, and I had not become refractory to Velcade, so I have been thinking about discussing using that drug again if we need to. It has been nearly three years since I used it last and with a subcutaneous injection, maybe I will handle it without neuropathy becoming a problem.
I do not know why my oncologist thinks 25mg would not cause WBC issues when 15mg did before. Maybe he feels maybe we need to try it first and see what happens and how I respond this time. We have just been communicating by short emails since my last lab result. I am sure we will talk more at my next appointment and I want to come prepared. I also may want to consider talking about using dexamethasone again. That drug is a challenge to take, but it certainly is proven to enhance the effectiveness of all, or nearly all, myeloma treatments, and this is serious business. No one said living with myeloma was going to be easy or normal and sometimes we have to face reality and do what needs to be done.
There certainly are a lot of options still available. My goal is to try and get the most I can out of all the drugs available before I become refractory to them, trying to get as much time I can in so that more and better treatments will become available in the future and hopefully a cure. This seems to be the same game plan of most of the Beacon readers with myeloma.
Thanks for your response backs, they are helpful.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Rising kappa FLCs on Revlimid maintenance - what to do?
Best wishes in your endeavors to get this under control again, Eric!
Alex
Alex
-
dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Rising kappa FLCs on Revlimid maintenance - what to do?
The one thing you have left out of your posts--is that you DO respond to Revlimid.
Perhaps that is why your MD prefers to go w/ 25 mg ( and give you meds for the low RBC/WBC's) until response is established--and then pop you back to 10 mg....???
Perhaps take it 28 days/ Month instead ?
Velcade/ Dex can also be brought on board ( Sub-Q 1.3 mg ) to get you back to low M Spike and good SPEP numbers/ ratios.
Otherwise, it's Pomalyst / Kyprolis or the like, next ?
Saving the bullets for later--is a good strategy. The Old cowboys knew best...
Your MD is being deliberative and wise, I'd say.
Good luck.
Rneb
Degree in nothing
--from Bazooka Joe U Gum wrappers.
Perhaps that is why your MD prefers to go w/ 25 mg ( and give you meds for the low RBC/WBC's) until response is established--and then pop you back to 10 mg....???
Perhaps take it 28 days/ Month instead ?
Velcade/ Dex can also be brought on board ( Sub-Q 1.3 mg ) to get you back to low M Spike and good SPEP numbers/ ratios.
Otherwise, it's Pomalyst / Kyprolis or the like, next ?
Saving the bullets for later--is a good strategy. The Old cowboys knew best...
Your MD is being deliberative and wise, I'd say.
Good luck.
Rneb
Degree in nothing
--from Bazooka Joe U Gum wrappers.
-
Rneb
Re: Rising kappa FLCs on Revlimid maintenance - what to do?
Sorry to hear that you are progressing at this point. A couple of things to consider – remembering there really is not a one-size-fits-all approach. A lot of this will come down to you and your MD. There are a number of opinions even from myeloma MDs – treatment history, previous sensitivities, toxicities, available drugs, aggressiveness of relapse.
Hopefully, this is serological relapse only, meaning that you are not having signs of active disease (CRAB).
Hopefully, this is serological relapse only, meaning that you are not having signs of active disease (CRAB).
- If serological only- depending on the burden of disease at diagnosis (when symptomatic) you just continue to 10mg Len as is with slow serological progression.
- Increasing Revlimid to 25 mg is reasonable days 1-21/28 day with close monitoring of your counts and, as suggested above, you may need supportive care +/- dex.
- Simply adding dex has helped a lot of my patients (20-40 mg weekly) in this setting. I would try this approach or #2 first (depending on your Revlimid vs dex tolerance).
- Velcade (bortezomib) would be a more difficult regimen for you – even SQ and / or weekly with your history of peripheral and autonomic BIPN – the Velcade is the most likely cause of those issues.
- Pomalyst (pomalidomide) / dex or Kyprolis (carfilzomib) (+/- dex – only approved as single agent) are excellent options as well – save these for later.
- Clinical trials are always a great option; however, with the apparent minimal progression, you would not likely qualify at this point.
- 2.5 years from your prior transplant – would put this on the table as well.
-
Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Rising kappa FLCs on Revlimid maintenance - what to do?
Thanks Dr. Shain,
Everything you said makes sense. I believe my oncologist is thinking along the lines of options 2 or 3 just as you suggested.
When I started Revlimid maintenance years ago, we discussed using dexamethasone for maintenance and I was cool to the idea of using it for such a long period of time as it is a difficult drug to take. That may be why my oncologist is going with option 2, increasing Revlimid to 25 mg with no dex, even though I may have trouble with WBC like I did last fall when I was on 15 mg for a while.
But I suspect that if I am going to continue to be able to use Revlimid effectively we may need to take option 3, keeping the Revlimid the same and adding dex. I will discuss it with him.
I suppose it may be entirely possible that it is serological relapse and continuing with the option 1 may be the best thing. He may just be changing the treatment approach with my rising kappa to make me feel better that something is being done so I do not worry. My kappa has been increasing somewhat linearly over the last couple of months. I will discuss this with him too.
I would certainly feel better if it were serological relapse and nothing more than that.
Everything you said makes sense. I believe my oncologist is thinking along the lines of options 2 or 3 just as you suggested.
When I started Revlimid maintenance years ago, we discussed using dexamethasone for maintenance and I was cool to the idea of using it for such a long period of time as it is a difficult drug to take. That may be why my oncologist is going with option 2, increasing Revlimid to 25 mg with no dex, even though I may have trouble with WBC like I did last fall when I was on 15 mg for a while.
But I suspect that if I am going to continue to be able to use Revlimid effectively we may need to take option 3, keeping the Revlimid the same and adding dex. I will discuss it with him.
I suppose it may be entirely possible that it is serological relapse and continuing with the option 1 may be the best thing. He may just be changing the treatment approach with my rising kappa to make me feel better that something is being done so I do not worry. My kappa has been increasing somewhat linearly over the last couple of months. I will discuss this with him too.
I would certainly feel better if it were serological relapse and nothing more than that.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Rising kappa FLCs on Revlimid maintenance - what to do?
Eric-
How often are you having blood tests? The results that you mention are from 3 months ago, but no more recent tests.
I was taking 15 mg Revlimid 21 days on / 28 days off with 20 mg of dex once a week after a relapse since 12/12. My m-spike reappeared at a low level about 18 months after my ASCT. I didn't do maintenance. My numbers slowly rose over the next year until they got to the level that my oncologist said I should start treatment again. I had been on 15 mg Revlimid and 40 mg dex for induction.
When I restarted therapy, my m-spike and FLC numbers dropped quickly and stabilized at a low level. The FLC has always been abnormal, but stable where it is now.
After 18 months on the 15 / 20 regimen, my cell counts dropped quite drastically in a 6 week period. My oncologist had me stop the Revlimid to see if my counts would recover, which they did by the next group of tests 4 weeks later. He then lowered my Revlimid dose to 10 mg for 21 days. After my first cycle at this level of Revlimid with the continuation of dex at 20 mg, my cell counts had recovered even more and the m-spike and FLC remained at their stable levels.
I see my oncologist every 6 weeks and have blood work done at the same time because I tend to run into problems quickly when it happens. Every time that my oncologist has tried to increase my appointments to 3 months, something has happened so that I see him sooner. So, we have stayed at 6 weeks for several years.
My choice for me would be to add the dex before upping the Revlimid if you had problems with a higher dose of Revlimid previously. If that doesn't help, then trying a higher dose of Revlimid would seem to be an option.
Or, maybe going to a different schedule of the Revlimid at 15 mg. Maybe 14 days instead of 21 days with 14 days off. My oncologist has said that he plays with the dosing of Revlimid quite a bit. When we lowered my dose he said that if 10 mg was too much that we could try even lower, as long as it was still working for me. When I asked him about dropping the dex he said, "No way," and gave me his reasoning.
Good luck with finding the treatment that works the best for you in controlling things. This is such a trial and error type of way to the best treatment.
Nancy in Phila
How often are you having blood tests? The results that you mention are from 3 months ago, but no more recent tests.
I was taking 15 mg Revlimid 21 days on / 28 days off with 20 mg of dex once a week after a relapse since 12/12. My m-spike reappeared at a low level about 18 months after my ASCT. I didn't do maintenance. My numbers slowly rose over the next year until they got to the level that my oncologist said I should start treatment again. I had been on 15 mg Revlimid and 40 mg dex for induction.
When I restarted therapy, my m-spike and FLC numbers dropped quickly and stabilized at a low level. The FLC has always been abnormal, but stable where it is now.
After 18 months on the 15 / 20 regimen, my cell counts dropped quite drastically in a 6 week period. My oncologist had me stop the Revlimid to see if my counts would recover, which they did by the next group of tests 4 weeks later. He then lowered my Revlimid dose to 10 mg for 21 days. After my first cycle at this level of Revlimid with the continuation of dex at 20 mg, my cell counts had recovered even more and the m-spike and FLC remained at their stable levels.
I see my oncologist every 6 weeks and have blood work done at the same time because I tend to run into problems quickly when it happens. Every time that my oncologist has tried to increase my appointments to 3 months, something has happened so that I see him sooner. So, we have stayed at 6 weeks for several years.
My choice for me would be to add the dex before upping the Revlimid if you had problems with a higher dose of Revlimid previously. If that doesn't help, then trying a higher dose of Revlimid would seem to be an option.
Or, maybe going to a different schedule of the Revlimid at 15 mg. Maybe 14 days instead of 21 days with 14 days off. My oncologist has said that he plays with the dosing of Revlimid quite a bit. When we lowered my dose he said that if 10 mg was too much that we could try even lower, as long as it was still working for me. When I asked him about dropping the dex he said, "No way," and gave me his reasoning.
Good luck with finding the treatment that works the best for you in controlling things. This is such a trial and error type of way to the best treatment.
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
9 posts
• Page 1 of 1
Return to Treatments & Side Effects