Hi,
I had a transplant in October 2012. I have not taken any meds, except Zometa every 3 months, in 3 years because my platelet is below the norm (it is 87; normal range is 140 -400) and my onco/hemo is concerned about giving me meds until my platelets numbers get better.
My M spike is up and down between 0.6 g/dL and 0.7 g/dL since my transplant. Never higher. My free light chain stays in the normal range also over the last 3 years.
I was just wondering if this is a good approach or should I be on maintenance?
My kappa/lambda ratio is 3.46, normal 1.35-2.65
Creatinine elevated a little 1.45, normal 0.50-1.30 mg/dL
My bone marrow biopsy on Nov 6, 2013 shows:
CD 38 positive plasma cell comprise approximately 3% of the marrow cellularity. Monoclonal plasma cell (0.1% of cell), positive for cytoplasmic kappa, in a background of polyclonal plasma cell (0.25% of cell). Normocellular bone marrow (cellularity of 50%) with focal aspiration artifact.
Any input would be appreciated. Just trying to find out if I am going down the right path. I am not trying to second guess my doctor because I have been good so far, but just curious.
Thanks in advance
PJ
Forums
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Paul J - Name: Paul J
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: January 2012
- Age at diagnosis: 55
Re: Should I be on maintenance therapy?
Hello Paul:
You have asked a very interesting and timely question. When I accompany my wife into the doctors, they know ahead of time to be prepared for a long list of questions. I trim back on my questions to a degree because I do not want them to be too annoyed (or more basically, to hate me). Many of my questions (not all) get the following answer: "There is no evidence of that either way". I have heard that answer several dozen times by now. I am fairly certain that is the answer to your question – there is no study that answers the question that you asked. However, I do understand, that it is an important question to you!
You got your ASCT in 2012. Congratulations, that you are at 3 years without progression!! There is data that has come out, only in the last two years or so, that seems to clearly show that over a population that maintenance prolongs time to first relapse. An update of the CALGB study this year, does in fact start to document that it appears that Revlimid maintenance more definitively enhances overall survival. My read is that the community of myeloma doctors is falling in line with this pretty quickly for "plain vanilla" multiple myeloma, and maintenance is on the upswing.
You, however, have not reached CR (probably VGPR), but are asking yourself whether it is beneficial to start the maintenance at this point. If you start maintenance at this point, it is very different than starting it right after transplant. That is why I note that there would be no study covering your question. Who would design a study such as that??
You have been drug free for two to three years. You have no symptoms Since you have been stable at a positive M-spike, it sounds like you might be in an "MGUS-like state". Over time, chemo drugs do wear down your body, but they also might hold the advance of the multiple myeloma at bay. That is the tradeoff. That is the argument for / against maintenance.
Another answer that I have heard from the doctors is that "I do not know if it helps, but it probably would not hurt". I think that is where you are now. If you took on Revlimid at a maintenance level, I am guessing that you could tolerate it well (this is a non-medical opinion, just wanted to say that). So I definitely think it's an option for the situation you described. If you think that you want to be proactive and "fight back", it is a reasonable approach. I may be wrong, but I think I seem to be reading that you want to be more proactive in "the fight". Quite frankly, this might be more satisfying psychologically, than based on hard medical evidence at this time.
You could start down the road of maintenance, and evaluate its effectiveness. If it does not work out, and the side effects are problematic, you could fall back to you present approach. Ask your doctor it this approach had a downside. Again, not the opinion of a medical professional (just someone who reads a lot), but I think you asked a fantastic question.
Good luck and continued long remission!
You have asked a very interesting and timely question. When I accompany my wife into the doctors, they know ahead of time to be prepared for a long list of questions. I trim back on my questions to a degree because I do not want them to be too annoyed (or more basically, to hate me). Many of my questions (not all) get the following answer: "There is no evidence of that either way". I have heard that answer several dozen times by now. I am fairly certain that is the answer to your question – there is no study that answers the question that you asked. However, I do understand, that it is an important question to you!
You got your ASCT in 2012. Congratulations, that you are at 3 years without progression!! There is data that has come out, only in the last two years or so, that seems to clearly show that over a population that maintenance prolongs time to first relapse. An update of the CALGB study this year, does in fact start to document that it appears that Revlimid maintenance more definitively enhances overall survival. My read is that the community of myeloma doctors is falling in line with this pretty quickly for "plain vanilla" multiple myeloma, and maintenance is on the upswing.
You, however, have not reached CR (probably VGPR), but are asking yourself whether it is beneficial to start the maintenance at this point. If you start maintenance at this point, it is very different than starting it right after transplant. That is why I note that there would be no study covering your question. Who would design a study such as that??
You have been drug free for two to three years. You have no symptoms Since you have been stable at a positive M-spike, it sounds like you might be in an "MGUS-like state". Over time, chemo drugs do wear down your body, but they also might hold the advance of the multiple myeloma at bay. That is the tradeoff. That is the argument for / against maintenance.
Another answer that I have heard from the doctors is that "I do not know if it helps, but it probably would not hurt". I think that is where you are now. If you took on Revlimid at a maintenance level, I am guessing that you could tolerate it well (this is a non-medical opinion, just wanted to say that). So I definitely think it's an option for the situation you described. If you think that you want to be proactive and "fight back", it is a reasonable approach. I may be wrong, but I think I seem to be reading that you want to be more proactive in "the fight". Quite frankly, this might be more satisfying psychologically, than based on hard medical evidence at this time.
You could start down the road of maintenance, and evaluate its effectiveness. If it does not work out, and the side effects are problematic, you could fall back to you present approach. Ask your doctor it this approach had a downside. Again, not the opinion of a medical professional (just someone who reads a lot), but I think you asked a fantastic question.
Good luck and continued long remission!
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JPC - Name: JPC
Re: Should I be on maintenance therapy?
Paul,
First off, I'm not a doc, so keep that in mind as you read this. Only your doc has the benefit of understanding your overall medical situation.
87 thous/mcL is a somewhat low platelet number and you are therefore thrombocytopenic as a result.
So, I could see why your doc might be a bit hesitant to put you on to Revlimid (which is one of the more common maintenance drugs), given that Revlimid can exacerbate thrombocytopenia. He may also be looking at whether your are neutropenic (low ANC) or not, which can be another possible side effect of Revlimid usage.
You might want to ask your doc just what platelet level he would feel comfortable with to start a low-dose Revlimid maintenance regimen.
Another possibility would be to discuss the use of Velcade as a maintenance regimen, which doesn't have the same thrombocytopenic effects of Revlimid.
And, of course, it may be a good idea to get a second opinion from a multiple myeloma specialist on just what he/she would do at this stage.
Hope this helps...
First off, I'm not a doc, so keep that in mind as you read this. Only your doc has the benefit of understanding your overall medical situation.
87 thous/mcL is a somewhat low platelet number and you are therefore thrombocytopenic as a result.
So, I could see why your doc might be a bit hesitant to put you on to Revlimid (which is one of the more common maintenance drugs), given that Revlimid can exacerbate thrombocytopenia. He may also be looking at whether your are neutropenic (low ANC) or not, which can be another possible side effect of Revlimid usage.
You might want to ask your doc just what platelet level he would feel comfortable with to start a low-dose Revlimid maintenance regimen.
Another possibility would be to discuss the use of Velcade as a maintenance regimen, which doesn't have the same thrombocytopenic effects of Revlimid.
And, of course, it may be a good idea to get a second opinion from a multiple myeloma specialist on just what he/she would do at this stage.
Hope this helps...
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Should I be on maintenance therapy?
Paul
As someone on Revlimid for relapse and who developed severe thrombocytopenia requiring platelet infusion, (am currently also thrombocytopenic and being monitored), I see why your oncologists are not adding a maintenance drug when you have been stable with your disease for 3 years.
When you had your transplant maintenance was not common and possibly your doctors did not feel it necessary to add a maintenance regime to stable disease. Many patients cannot wait to be drug free following their transplant.
Whether adding Revlimid, or any maintenance now, will really be beneficial I expect is the unknown for your oncologists too, but you can ask if there is any study that supports maintenance in people responding like yourself.
What was your induction regime and how did your myeloma respond to this?
Three years being well with low level stable control of myeloma is a good response to your treatment and I do not think you may necessarily have lost out from not having maintenance. In all fairness myeloma treatment is both standard in some respects and guesswork in others. One of my doctors admitted things are often seen restrospectively rather than prognostically with individual myeloma patients. That is why there is so much variation in outcome to treatments in individual patients. But have the conversation with your oncologist to satisfy your curiosity.
As someone on Revlimid for relapse and who developed severe thrombocytopenia requiring platelet infusion, (am currently also thrombocytopenic and being monitored), I see why your oncologists are not adding a maintenance drug when you have been stable with your disease for 3 years.
When you had your transplant maintenance was not common and possibly your doctors did not feel it necessary to add a maintenance regime to stable disease. Many patients cannot wait to be drug free following their transplant.
Whether adding Revlimid, or any maintenance now, will really be beneficial I expect is the unknown for your oncologists too, but you can ask if there is any study that supports maintenance in people responding like yourself.
What was your induction regime and how did your myeloma respond to this?
Three years being well with low level stable control of myeloma is a good response to your treatment and I do not think you may necessarily have lost out from not having maintenance. In all fairness myeloma treatment is both standard in some respects and guesswork in others. One of my doctors admitted things are often seen restrospectively rather than prognostically with individual myeloma patients. That is why there is so much variation in outcome to treatments in individual patients. But have the conversation with your oncologist to satisfy your curiosity.
Re: Should I be on maintenance therapy?
It is my impression that the discussion is still open to whether a patient in full remission after ASCT should or should not receive maintenance treatment.
But here in Denmark, from what I understood before my own ASCT, maintenance is offered.
But I also got the impression that it is not .
And I also understood that it is pretty open which maintenance you will be offered. I was offered to join a trial, so I did not really dig into which options where offered as standard. And please bear in mind that since I chose to join the trial I did not really check out my other options.
But here in Denmark, from what I understood before my own ASCT, maintenance is offered.
But I also got the impression that it is not .
And I also understood that it is pretty open which maintenance you will be offered. I was offered to join a trial, so I did not really dig into which options where offered as standard. And please bear in mind that since I chose to join the trial I did not really check out my other options.
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Should I be on maintenance therapy?
Hi Paul,
I think Edna is pointing things in the right direction by focusing on your thrombocytopenia. I could imagine it is affecting your doctor's recommendation in more ways than first meets the eye. Here are some possibilities:
First, as you already have said, your doctor may want to make sure your platelet and other blood counts don't drop to dangerously low levels while you are in remission.
Second, your doctor may want to protect your bone marrow so that it can produce enough blood cells when, in the future, you might need more intensive therapy in case of relapse.
Third, your doctor may be concerned that your persistent thrombocytopenia reflects a bone marrow that is suppressed and thus more liable to develop myelodysplastic syndromes (MDS), or a similar secondary blood cancer, if you were to be given Revlimid maintenance therapy.
MDS is a blood cancer where the bone marrow is no longer able to produce enough mature blood cells, even when stimulated with drugs like epo or GCSF. Patients on Revlimid maintenance therapy -- such as those in the CALGB trial mentioned by JPC -- are 2-3 times more likely to develop secondary cancers compared to patients who have not had maintenance therapy.
(I should mention that only Revlimid and thalidomide maintenance therapy has been shown to increase the risk of secondary cancers. No such risk has been found with Velcade maintenance.)
JPC is correct that maintenance therapy is more and more being recommended by myeloma specialists these days. He also is correct, however, that this recommendation is traditionally for patients making a decision about maintenance right after induction therapy and/or a transplant.
Personally, I suspect that not many myeloma specialists would recommend a change in how you are being treated given your experience so far and your thrombocytopenia. But that's something you should ask your doctor.
I think Edna is pointing things in the right direction by focusing on your thrombocytopenia. I could imagine it is affecting your doctor's recommendation in more ways than first meets the eye. Here are some possibilities:
First, as you already have said, your doctor may want to make sure your platelet and other blood counts don't drop to dangerously low levels while you are in remission.
Second, your doctor may want to protect your bone marrow so that it can produce enough blood cells when, in the future, you might need more intensive therapy in case of relapse.
Third, your doctor may be concerned that your persistent thrombocytopenia reflects a bone marrow that is suppressed and thus more liable to develop myelodysplastic syndromes (MDS), or a similar secondary blood cancer, if you were to be given Revlimid maintenance therapy.
MDS is a blood cancer where the bone marrow is no longer able to produce enough mature blood cells, even when stimulated with drugs like epo or GCSF. Patients on Revlimid maintenance therapy -- such as those in the CALGB trial mentioned by JPC -- are 2-3 times more likely to develop secondary cancers compared to patients who have not had maintenance therapy.
(I should mention that only Revlimid and thalidomide maintenance therapy has been shown to increase the risk of secondary cancers. No such risk has been found with Velcade maintenance.)
JPC is correct that maintenance therapy is more and more being recommended by myeloma specialists these days. He also is correct, however, that this recommendation is traditionally for patients making a decision about maintenance right after induction therapy and/or a transplant.
Personally, I suspect that not many myeloma specialists would recommend a change in how you are being treated given your experience so far and your thrombocytopenia. But that's something you should ask your doctor.
Re: Should I be on maintenance therapy?
Thank you all for taking the time to read and reply to my situation. My next doctor visit is in January 2016 and every 3 months after unless my numbers change. Hopefully not. I think for now I am just going to wait and see per visit what my doctor recommends.
Thanks again,
Paul J.
Thanks again,
Paul J.
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Paul J - Name: Paul J
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: January 2012
- Age at diagnosis: 55
Re: Should I be on maintenance therapy?
Good luck to you Paul. Either way, you are certainly in a good situation with 3 years of a stable M Spike. I hope it lasts much longer.
I do not have too much direct knowledge of inherently low platelets, and I think the other posters provided sage input. I would investigate if there is anything along the lines of diet or supplements that can help it. At some point along the way (way in the future, hopefully) you probably will need the next round of treatment. If you can get the platelets up before the time that you need additional treatment, that probably would be very good.
Again, good luck. Regards,
I do not have too much direct knowledge of inherently low platelets, and I think the other posters provided sage input. I would investigate if there is anything along the lines of diet or supplements that can help it. At some point along the way (way in the future, hopefully) you probably will need the next round of treatment. If you can get the platelets up before the time that you need additional treatment, that probably would be very good.
Again, good luck. Regards,
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JPC - Name: JPC
Re: Should I be on maintenance therapy?
Paul
Thrombocytopenia can be caused by many things see:
http://www.nhlbi.nih.gov/health/health-topics/topics/thcp/causes
It cannot be treated via dietary means / supplements as JPC suggests. I would consult with the oncologist to determine possible causes and possibility of it improving as JPC is correct in that the oncologist will not wish to 'hit' the bone marrow now to 'save' it should future treatment be needed.
In my case it arose from treatment Platelet counts recovered into normal range when treatment was changed, but again the counts have suddenly dropped and the cause is unclear.
Fortunately my treating centre acts fast and viral infection has been suggested, I am being tested again imminently to see what is happening and if viral infection may be the cause, although my temperature is normal. I hope it is not due to some other complex issues arising from drugs used earlier. But that is the complexity of treating myeloma.
Edna
Thrombocytopenia can be caused by many things see:
http://www.nhlbi.nih.gov/health/health-topics/topics/thcp/causes
It cannot be treated via dietary means / supplements as JPC suggests. I would consult with the oncologist to determine possible causes and possibility of it improving as JPC is correct in that the oncologist will not wish to 'hit' the bone marrow now to 'save' it should future treatment be needed.
In my case it arose from treatment Platelet counts recovered into normal range when treatment was changed, but again the counts have suddenly dropped and the cause is unclear.
Fortunately my treating centre acts fast and viral infection has been suggested, I am being tested again imminently to see what is happening and if viral infection may be the cause, although my temperature is normal. I hope it is not due to some other complex issues arising from drugs used earlier. But that is the complexity of treating myeloma.
Edna
Re: Should I be on maintenance therapy?
Hi Paul,
I second JPC's sentiments and suggestions.
It is worth checking, for example, if your diet or other medications you take may be causing your low platelet levels. The quinine in tonic water, for example, can lower platelet levels, as can excess alcohol consumption and insufficient vitamin B12 and folic acid. Even medications such as Tylenol (acetaminophen, paracetamol), which is often found in cold medications and prescription pain medications such as Vicodin (= Tylenol + hydrocodone), can cause lowered platelet levels.
One thing you may find helpful is to go through the previous discussions here in the forum about platelet levels. Here's a link to them.
Note that there are a couple of discussions of alternative / natural approaches that may increase platelet levels. One is the Asian herb tawa tawa,
"Tawa tawa (euphorbia hirta) to increase platelets?" (started Apr 28, 2014)
and another is papaya leaf:
"Low platelet counts and papaya" (started Aug 30, 2013)
Most of the (mainly anecdotal) evidence regarding these alternative therapies comes from cases of dengue fever, a tropical viral infection that can lead to low platelet levels.
If you do decide you want to experiment with these alternative therapies, I would research then very carefully on the Internet and then discuss them first with your doctor.
I repeat: Do not try these until you discuss them with your doctor.
You want to make absolutely certain the therapies won't negatively affect either your myeloma or your kidneys (which often are damaged by multiple myeloma).
Good luck!
I second JPC's sentiments and suggestions.
It is worth checking, for example, if your diet or other medications you take may be causing your low platelet levels. The quinine in tonic water, for example, can lower platelet levels, as can excess alcohol consumption and insufficient vitamin B12 and folic acid. Even medications such as Tylenol (acetaminophen, paracetamol), which is often found in cold medications and prescription pain medications such as Vicodin (= Tylenol + hydrocodone), can cause lowered platelet levels.
One thing you may find helpful is to go through the previous discussions here in the forum about platelet levels. Here's a link to them.
Note that there are a couple of discussions of alternative / natural approaches that may increase platelet levels. One is the Asian herb tawa tawa,
"Tawa tawa (euphorbia hirta) to increase platelets?" (started Apr 28, 2014)
and another is papaya leaf:
"Low platelet counts and papaya" (started Aug 30, 2013)
Most of the (mainly anecdotal) evidence regarding these alternative therapies comes from cases of dengue fever, a tropical viral infection that can lead to low platelet levels.
If you do decide you want to experiment with these alternative therapies, I would research then very carefully on the Internet and then discuss them first with your doctor.
I repeat: Do not try these until you discuss them with your doctor.
You want to make absolutely certain the therapies won't negatively affect either your myeloma or your kidneys (which often are damaged by multiple myeloma).
Good luck!
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