I am currently re-starting myeloma treatment following a treatment-free period of nearly three years. I hope it will be of some interest if I explain how the relapse occurred. My first treatment started in January 2012 and consisted of six months of Velcade, Revlimid and dexamethasone, This was followed up by 12 months of 10 mg daily Revlimid as maintenance.
RELAPSE
I had enjoyed good health without pain or broken bones and also with virtually all blood test items near normal. Hemoglobin was at or above the high end of normal. My routine was for a blood test at the local laboratory every two months, I would personally collect the results three days later.
During October 2015, as usual, I felt 100% fit, I had gotten to the point where I thought that the myeloma had left me for a long time to come. However on this day I was to be shocked to find a tiny monoclonal peak in the beta 2 zone of the electrophoresis test; it was 3.8 grams per litre 0.38 g/dl).
I contacted my doctor immediately and he in turn contacted the hematologist. They confirmed that the level was too low to be treated and as a result I waited for eight months until this week in June 2016. The peak had gradually and relentlessly increased and now stands at 32 grams per litre (3.2 g/dL).
I can confirm that even at this stage of increase I feel almost 100% fit and under normal circumstances I would not have had any reason to visit a doctor or even a pharmacy. Despite this absence of symptoms, my blood test demonstrates an urgency to start treatment, even though the hemoglobin levels are still well into the normal range. But without treatment I would be in very serious trouble by the autumn / winter of 2016.
NEW TREATMENT
Limoges CHU Hospital, under the constant guidance of Toulouse CHU, have suggested a stem cell transplant in October of this year using my own previously collected stem cells. This is optional but will follow a period of about four months of home treatment to reduce the paraprotein level.
The new treatment is as follows: Every day for 21 days per month, 4 mg capsule of pomalidomide (Pomalyst, Imnovid). Once per week a capsule 40 mg of dexamethasone. On the same day once a week, 300 mg tablet form cyclophosphamide (Cytoxan). A treatment-free week from day 21.
Also I will receive a blood thinning injection every day to prevent blood clots, and various antibiotics to reduce infection risks. My next appointment is in one month with weekly blood tests prescribed.
The treatment regimen seems to be easily tolerated at this early stage with no significant problems - yet ! This is my personal account and of course no two people are the same.
Forums
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hello Victor:
Just a very general "non-doctor" comment. The situation you describe to a large degree falls within the realm of a "standard case" based on "standard risk". (net/net, this would be good compared to the alternative). There is a very good chance that the new treatment plan will result in a duration or remission close to your initial remission (no guarantees).
If you did not initially do an ASCT (I am not sure based on your description), a very common approach is to do it at first relapse. ASCT's, on average in the studies, seem to help at initial treatment and first relapse, but not so much later on.
Your medical team is incorporating one of the newer drugs, Pom . The good news is that there are other new drugs approved and in the pipeline, to use in the future, when needed. Good luck to you.
Just a very general "non-doctor" comment. The situation you describe to a large degree falls within the realm of a "standard case" based on "standard risk". (net/net, this would be good compared to the alternative). There is a very good chance that the new treatment plan will result in a duration or remission close to your initial remission (no guarantees).
If you did not initially do an ASCT (I am not sure based on your description), a very common approach is to do it at first relapse. ASCT's, on average in the studies, seem to help at initial treatment and first relapse, but not so much later on.
Your medical team is incorporating one of the newer drugs, Pom . The good news is that there are other new drugs approved and in the pipeline, to use in the future, when needed. Good luck to you.
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JPC - Name: JPC
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hello JPC,
You are most kind to give these words of encouragement and I agree with you, these are the thoughts I have.
I compare the pros and cons. The survival advantage with transplant is not that great compared with using novel therapies, but the cost, in terms of undergoing a rather invasive procedure, is quite high. It takes many months to recover fully, and there is the increased risk of complications, secondary cancers, etc.
As you also mention, there is the strong evidence of huge progress in the new drugs being developed which may eventually make the transplant virtually obsolete. Decisions!
Kind regards, my friend.
You are most kind to give these words of encouragement and I agree with you, these are the thoughts I have.
I compare the pros and cons. The survival advantage with transplant is not that great compared with using novel therapies, but the cost, in terms of undergoing a rather invasive procedure, is quite high. It takes many months to recover fully, and there is the increased risk of complications, secondary cancers, etc.
As you also mention, there is the strong evidence of huge progress in the new drugs being developed which may eventually make the transplant virtually obsolete. Decisions!
Kind regards, my friend.
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
The big advantage of the transplant is that you may have an extended period of time free of any treatment before the next inevitable relapse. If you do not go that route, you will likely be under constant treatment. Even with the transplant, there is likely going to be some period of time where maintenance, most likely with Revlimid and perhaps dex, will be recommended. That maintenance may last up to a year, but then you would be off treatment if everything goes well.
I am closing in on having to make the same decision. I am leaning to the non-transplant option because I am within 3 years of retirement and want to continue working as long as possible. (Don't want to go on short-term disability for the recovery period from the transplant). I also have had a history of being able to tolerate treatment without a lot of serious side effects (no neuropathy from Velcade or rashes from Revlimid).
Everyone is different, so all of the pros and cons have to be considered.
I am closing in on having to make the same decision. I am leaning to the non-transplant option because I am within 3 years of retirement and want to continue working as long as possible. (Don't want to go on short-term disability for the recovery period from the transplant). I also have had a history of being able to tolerate treatment without a lot of serious side effects (no neuropathy from Velcade or rashes from Revlimid).
Everyone is different, so all of the pros and cons have to be considered.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
I do know everyone is different, but I did not find the stem cell transplant to be nearly the experience most have described here. I felt weak and generally out of sorts for a few weeks and then not all together right for about 6 months, but since then I don't generally feel any long-term impact.
I had my transplant in February of 2013. Since then my myeloma has reverted to an MGUS profile and I have stayed on the same maintenance for about 37 months - 10 mg Revlimid, no dex, 21 days on and 7 off. Nothing else.
I am also 100% nonsecretory so I have one MRI, one PET, one bone marrow biopsy and assorted blood tests every year. Each time the MGUS profile remains. The last PET was 100% clean.
I join in here because of the maintenance discussion. Both specialists I have had agree that I am doing this MGUS thing and both also say maintenance for life or until relapse. Neither thought I needed dex. I will commit to 5 years maintenance, I think, but beyond that my feet may need a break..
One thing I have learned for sure, there are many ways to go about things and not everyone has the same route!
I had my transplant in February of 2013. Since then my myeloma has reverted to an MGUS profile and I have stayed on the same maintenance for about 37 months - 10 mg Revlimid, no dex, 21 days on and 7 off. Nothing else.
I am also 100% nonsecretory so I have one MRI, one PET, one bone marrow biopsy and assorted blood tests every year. Each time the MGUS profile remains. The last PET was 100% clean.
I join in here because of the maintenance discussion. Both specialists I have had agree that I am doing this MGUS thing and both also say maintenance for life or until relapse. Neither thought I needed dex. I will commit to 5 years maintenance, I think, but beyond that my feet may need a break..
One thing I have learned for sure, there are many ways to go about things and not everyone has the same route!
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bluemountain
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Best of luck to you, Victor. Regards
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JPC - Name: JPC
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Thank you JPC, Bluemountain, and Ron. It is so reassuring to read your views.
Incidentally the first week of treatment is still going well, no side effects apart from my hands and face becoming a better colour – the paleness is lifting! I will keep the updates coming as the treatment (hopefully) progresses. Thank you all!
Incidentally the first week of treatment is still going well, no side effects apart from my hands and face becoming a better colour – the paleness is lifting! I will keep the updates coming as the treatment (hopefully) progresses. Thank you all!
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hello Victor L,
As I understand it, your induction therapy (treatment ) started in January 2012 consisting of the Revlimid, Velcade, and dexamethasone (RVD) for 6 cycles followed by a year-long maintenance of 10 mg Revlimid. I assume you were doing so well by mid 2103 that you did not need ANY maintenance therapy at all and you managed to be 'drug free' now for almost 3 years! That seems to be better than the average drug-free period other myeloma patients who underwent autologous stem cell transplantation have reported, before they relapsed and had to get on a Revlimid or some other maintenance therapy.
I am wondering why your oncologist has put you on a whole new treatment regimen, with newer drugs, rather than just starting you on a Revlimid maintenance? You seemed to have tolerated Revlimid well and must have responded to it extremely well, to the extent that you were drug free for 3 years!
The newer drugs have some hereto unreported side effects (as Tracy J and others have written about, Pomalyst in particular, as I recall). Many patients have written about starting the Revlimid or Velcade maintenance after the relapse, usually around 3 years after their stem cell transplant.
I have a keen personal interest in your experience since I started my induction therapy (RVD) at the end of 2014 and I have opted against an autologous stem cell transplant. I have a standard risk IgG kappa myeloma. I had achieved a complete response after my 8-cycles of induction therapy and all my test results remained 'normal' when I was taking the Revlimid and dex for maintenance for three cycles, thereafter. My kappa free light chain level has been a little above normal, but stable, just with Revlimid. I am taking the highest dose of Revlimid (20 mg every alternate day) that I seem to tolerate without any skin rash. I was able to tolerate a higher dose with the weekly 20 mg dex.
Anyway, I am wondering about what to expect a couple of years from now.
Best of luck and I hope you achieve a SCR in just a few cycles of your current regimen.
As I understand it, your induction therapy (treatment ) started in January 2012 consisting of the Revlimid, Velcade, and dexamethasone (RVD) for 6 cycles followed by a year-long maintenance of 10 mg Revlimid. I assume you were doing so well by mid 2103 that you did not need ANY maintenance therapy at all and you managed to be 'drug free' now for almost 3 years! That seems to be better than the average drug-free period other myeloma patients who underwent autologous stem cell transplantation have reported, before they relapsed and had to get on a Revlimid or some other maintenance therapy.
I am wondering why your oncologist has put you on a whole new treatment regimen, with newer drugs, rather than just starting you on a Revlimid maintenance? You seemed to have tolerated Revlimid well and must have responded to it extremely well, to the extent that you were drug free for 3 years!
The newer drugs have some hereto unreported side effects (as Tracy J and others have written about, Pomalyst in particular, as I recall). Many patients have written about starting the Revlimid or Velcade maintenance after the relapse, usually around 3 years after their stem cell transplant.
I have a keen personal interest in your experience since I started my induction therapy (RVD) at the end of 2014 and I have opted against an autologous stem cell transplant. I have a standard risk IgG kappa myeloma. I had achieved a complete response after my 8-cycles of induction therapy and all my test results remained 'normal' when I was taking the Revlimid and dex for maintenance for three cycles, thereafter. My kappa free light chain level has been a little above normal, but stable, just with Revlimid. I am taking the highest dose of Revlimid (20 mg every alternate day) that I seem to tolerate without any skin rash. I was able to tolerate a higher dose with the weekly 20 mg dex.
Anyway, I am wondering about what to expect a couple of years from now.
Best of luck and I hope you achieve a SCR in just a few cycles of your current regimen.
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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: Pomalyst, cyclophosphamide & dexamethasone treatment
Very good to hear from you K_Shash and you are spot on with my past treatment regimen and the progress that I experienced during and after. I wish to respond to the specific questions.
I requested a repeat treatment with Revlimid on Monday of this week but it was refused, I believe the main reason being that the Limoges Hospital, being also a vast university hospital, is deeply involved with a protocol study organised at Toulouse. I have been included in the protocol, although not given any real choice, the plan being that in October they wish to do a stem cell transplant as part of my first relapse treatment, The aim of the study is to determine whether the transplant works as well at first relapse as those done after initial diagnosis. The specialist has advised that they cannot of course force anybody to have a transplant but the pressure is considerable even though they admit that the benefits are not greatly significant over novel therapy options.
I believe there is also an element of cost involved, I hear frequent mention of 'the administrators' and I am told that the current treatment of pomalidomide (Pomalyst, Imnovid) is around four thousand euros per month, I think the Revlimid was double this amount. My personal wish is to avoid the transplant in the autumn provided that my drug therapy works well, I feel that the invasive nature of the transplant can have a negative effect even if it is successful. I remember very well the single dose of cyclophosphamide given intravenously in 2012 in order to harvest the stem cells. I experienced side effects for several months, including two hospitalisations by ambulance for lung infections that made breathing extremely difficult.
The change of treatment is to bring me in line with the protocol requirements for a transplant, I can then accept or decline. To decline may result in being refused a transplant as future treatment as I will reach age 65 in two and a half years, which they say is the 'reference age limit'. I hope to be in a position to decline.
I will keep you regularly informed and thank you for your interest and very supportive words!
I requested a repeat treatment with Revlimid on Monday of this week but it was refused, I believe the main reason being that the Limoges Hospital, being also a vast university hospital, is deeply involved with a protocol study organised at Toulouse. I have been included in the protocol, although not given any real choice, the plan being that in October they wish to do a stem cell transplant as part of my first relapse treatment, The aim of the study is to determine whether the transplant works as well at first relapse as those done after initial diagnosis. The specialist has advised that they cannot of course force anybody to have a transplant but the pressure is considerable even though they admit that the benefits are not greatly significant over novel therapy options.
I believe there is also an element of cost involved, I hear frequent mention of 'the administrators' and I am told that the current treatment of pomalidomide (Pomalyst, Imnovid) is around four thousand euros per month, I think the Revlimid was double this amount. My personal wish is to avoid the transplant in the autumn provided that my drug therapy works well, I feel that the invasive nature of the transplant can have a negative effect even if it is successful. I remember very well the single dose of cyclophosphamide given intravenously in 2012 in order to harvest the stem cells. I experienced side effects for several months, including two hospitalisations by ambulance for lung infections that made breathing extremely difficult.
The change of treatment is to bring me in line with the protocol requirements for a transplant, I can then accept or decline. To decline may result in being refused a transplant as future treatment as I will reach age 65 in two and a half years, which they say is the 'reference age limit'. I hope to be in a position to decline.
I will keep you regularly informed and thank you for your interest and very supportive words!
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Best of luck, Victor.
Please do keep us up to date on your experiences with Pomalyst (pomalidomide).
Please do keep us up to date on your experiences with Pomalyst (pomalidomide).
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
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