Hi all,
I haven't written on here before but find the Beacon site very useful.
I am currently relapsing for the first time and want (and need!) to start treatment soon. Currently I have narrowed my choices down to two: VTD, or VTD plus panobinostat on a clinical trial. In either case, I will go on to do an SCT.
I'm a slightly unusual case in that although I'm young I didn't have an SCT first time around. I was on a trial looking at deferred transplant for those who achieved a CR. I achieved sCR with MRD negative i.e no minimal residual disease (not sure exactly what test was used). I harvested plenty of stem cells so they're ready and waiting in the freezer....
Disappointingly, I relapsed somewhere around the year mark - I'm not sure exactly how to define the moment of relapse. I don't have paraprotein (what you call M spike in the US) but my disease was always measurably by kappa light chain in SFLC and urine. I did my harvest in october 2012 so that is the end of treatment and I think that's when the BMB etc was MRD negative. I was in complete remission from July already, based on other tests. I first had a trace again in my urine spot check way back (Jan 2013 I think), but this stayed stable, until around Sept it began to rise (still less than 0.1g protein but I think 20% BJP).
The more sinister sign was my kappa light chains rising in September 2013 (to 26 which doesn't sound much but this was a leap up from 8 in June, and prior to that sort of 0.5/1/2 - also the ratio was 14 as lambda was low). I only found this out in December (long story) and then had a BMB which found 30-40% plasma cells in the trephine. My skeletal survey also showed some possible new areas of activity. In January two SFLC tests a week apart were 59 and then 76. I haven't heard yet the results of latest SFLC taken last week.
First time around, I had a lot of bone damage. I was also hypercalcaemic (vomiting non-stop) and had kidney and liver issues when admitted to hospital. I developed pneumonia and spent a night in critical care. Then leg op, then started chemo.
It all felt very out of the blue - as a busy young person with an active life I just thought I had a bad knee, went to see physio, etc etc. Classic story. With hindsight I did have a lot of infections in the year or two prior to diagnosis (throat, colds, etc) and was tired and not like myself in the few months prior to diagnosis - but I just pushed on through as I had no idea.
I responded instantly to treatment (SFLC, urine etc all zero after just one cycle of PAD) which felt exciting at the time but I now realise may not be such a great thing. I had side effects but no PN. I went back to work from Janary 2012 and had a good year, nice holidays, getting back to normal, etc etc.
Anyway, that's enough back story! Back to the present situation.
My (excellent) hospital in January on seeing the BMB results recommended I start treatment: either VTD or CRD and then an SCT. I am minded towards trying Velcade again, and 'saving Revlimid for later' although I don't know if that logic really holds.
This time, I felt I had time to get a second opinion, so I went to another (uber-excellent) hospital which also had some trials: a couple with carfilzomib (Kyprolis) which aren't really tempting for different reasons, but also VTD plus panobinostat. On that, one difference is the Velcade is just one a once-weekly dose (which is good in terms of minimal hospital visits, but slightly unnerving in another way if it would take longer to work). They also specify a minimum of 6 cycles, which feels quite a lot (again, half of me thinks that's good, half of me thinks I'd rather do less!) Again, they agreed I should go on to SCT.
I know I have standard risk cytogenetics, don't know any more detail. I was stage IIIb when diagnosed, due to all the bone damage, kidney damage, and B2M (think my albumin was not in the stage 3 bracket though). I'm young and otherwise healthy, not overweight, non-smoker etc etc etc.
Right now, I am feeling physically pretty terrible: i was doing OK and went off for a nice sunny holiday in Cape Town, but the last week or so I'm just exhausted, have increasing amounts of bone pain (though no particular hot spots or severe pain) and emotionally just want to get on and start treatment.
My own hospital would start treatment any time I give the green light. For the trial, I'd need FLC of 100 to be eligible. I suspect I'm over that now but this is why I waited a bit. I seem to have frothy urine which I suspect is light chain related.
I realise 100 for FLC sounds low, but I had a lot of bone damage before and don't want to risk more. The highest FLC I recorded was around 1270 - but I think that was after some dex/ pamidronate etc had already started working - the very first sample on admission to hospital was a spoiled sample so had to be repeated. But I doubt I ever had much higher numbers, and anyway maybe these days I've become a low secretor. My BMB does show activity and the way I feel I just know it's building up fairly fast.
Any advice? As you can imagine, moments like this are hard: in some ways it feels like there is no real choice to make, two very similar options, nobody knows really what will work and probably it will all come out the same in the wash... Hopefully SCT will get me a longer remission than I had from PAD alone. Quite possibly I should have done it first time around, but who knows... and that's water under the bridge now anyway.
In terms of non-medical considerations: I live halfway between the two hospitals and neither is very far. I know and like and trust my current team so emotionally it feels a wrench to think about leaving. The other hospital (let's call it B) is however perhaps more an A* whereas my current one is an A... It has a large team, slick new building, more clinical trials etc. They are both teaching hospitals with myeloma specialists and big SCT wards, etc. I might consider going back to my hospital (A) to do my SCT, even if I do the trial.
The way I feel right now, I'd lean towards my current hospital, just so I can start without more tests and paperwork and waiting - but it'd probably only be 2 weeks to get onto the trial. Am I mad? Is panobinostat something which I ought to try, in case it knocks out some different clones in addition to whatever the V and the T and the D get to work on....? Or does it make no difference, and it's all about the SCT?
What would you do in the US? I realise you have different treatments available which I may not have access to here, but I'd still be curious to know.
Thanks for any thoughts....
Helga (not my real name but for a blog I've recently started!)
Forums
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Helga - Name: Helga
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May/June 2012
- Age at diagnosis: 32
Re: Advice: two treatment options at first relapse (aged 34)
I don't feel at all qualified to offer any suggestions, but I just wanted to wish you well! 
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Advice: two treatment options at first relapse (aged 34)
Hi Helga, I am also sorry to hear about the problems you are having with myeloma, at a young age too!
I don't live in the US either, so can't know what patients or doctors there would suggest, but maybe some others will post to you. Are you in Australia by any chance, or if not, what country do you live in? I think it makes a difference as to what you know is available in your country, outside of clinical trials, as you may need more treatments along the way. Clinical trials are not always available to patients, and it's a more sure thing to have a drug approved in one's home country. Also, being young, I would imagine that you would be trying for a remission where you could go 'drug free' for periods of time.
I think from your post that you responded really well to chemo the first time, which is good!, and thus that you are not resistant to those....was it Velcade/Thalomid/Dex that you had? And you haven't tried Revlimid either, which is certainly good too, since it works for many people. Maybe you can read up on Panobinostat, there are some articles in the archives of the Beacon here.
I had an SCT, but it certainly is an individual decision. I did get into a good remission, but of course there is always a possibility of a relapse. There are also 'allogenic' transplants, which are not usually offered up front to myeloma patients, but which seem to give one a chance of a long remission.
Please let us know how things are going for you..best wishes..Nancy
I don't live in the US either, so can't know what patients or doctors there would suggest, but maybe some others will post to you. Are you in Australia by any chance, or if not, what country do you live in? I think it makes a difference as to what you know is available in your country, outside of clinical trials, as you may need more treatments along the way. Clinical trials are not always available to patients, and it's a more sure thing to have a drug approved in one's home country. Also, being young, I would imagine that you would be trying for a remission where you could go 'drug free' for periods of time.
I think from your post that you responded really well to chemo the first time, which is good!, and thus that you are not resistant to those....was it Velcade/Thalomid/Dex that you had? And you haven't tried Revlimid either, which is certainly good too, since it works for many people. Maybe you can read up on Panobinostat, there are some articles in the archives of the Beacon here.
I had an SCT, but it certainly is an individual decision. I did get into a good remission, but of course there is always a possibility of a relapse. There are also 'allogenic' transplants, which are not usually offered up front to myeloma patients, but which seem to give one a chance of a long remission.
Please let us know how things are going for you..best wishes..Nancy
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Advice: two treatment options at first relapse (aged 34)
Thank you both! I realise it's difficult to give advice, and I will obviously make my decision based primarily on my doctors' advice, but it's helpful sometimes to know what questions other patients would ask or what they're aware of.
I'm in London, and had 4 cycles of PAD (Velcade, doxorubicin, dex). Sorry, I put that in the profile info and forgot to put it in the message! I think most drugs are available: sometimes we are a year or two behind the US in approving the newest drugs, so sometimes that is why trials are appealing. For example, when I was first diagnosed Velcade wasn't available as a first-line treatment but I could get it on a trial, which I did. The good thing is it is all free at the point of use, so I don't have to worry about the cost of treatment. The two recommendations offered by my current hospital off-trial were VTD and CRD (cyclophosphamide, Revlimid, dex). Usually in the UK maintenance isn't standard treatment, although some people are on it now under various randomised trials.
I've looked up panobinostat and it does seem to have had results in the group of patients it's been tried with to date, but they seem to have been resistant/refractory to Velcade (which I doubt I am) and much more heavily pre-treated, so it's a bit hard to draw much from that in terms of my own situation. I suppose it does have a different mechanism which based on that seems to be active in myeloma, so it might be worth a trial.
One other appeal of the trial is I'd get cytogenetic tests done on bone marrow again, which I wouldn't under my usual treatment. It could be interesting to see what it looks like this time.
I'm not tempted by an allo, although I guess I might revisit that if I were to relapse soon after my SCT. The risks both of mortality and loss of quality of life via GVHD I find off-putting, and my sibling isn't a match so I would be looking at an unrelated donor. But it isn't something I've looked into in great detail.
I suppose another option would be a tandem transplant: to do two SCTs. I don't know much about that.
And yes, ideally I'd be wanting a drug-free remission, living as much of a normal life as possible. I do work full-time, have a busy social life etc when I'm well. But equally there are trade-offs.... I would also like a long remission!!
Anyway, thanks for the messages. Thoughts from anyone else very welcome, including the medics who sometimes chip in very helpfully on here!
Best wishes with your own treatment or your loved ones' treatment! Nancy it's good to hear your SCT is holding well!
Helga
I'm in London, and had 4 cycles of PAD (Velcade, doxorubicin, dex). Sorry, I put that in the profile info and forgot to put it in the message! I think most drugs are available: sometimes we are a year or two behind the US in approving the newest drugs, so sometimes that is why trials are appealing. For example, when I was first diagnosed Velcade wasn't available as a first-line treatment but I could get it on a trial, which I did. The good thing is it is all free at the point of use, so I don't have to worry about the cost of treatment. The two recommendations offered by my current hospital off-trial were VTD and CRD (cyclophosphamide, Revlimid, dex). Usually in the UK maintenance isn't standard treatment, although some people are on it now under various randomised trials.
I've looked up panobinostat and it does seem to have had results in the group of patients it's been tried with to date, but they seem to have been resistant/refractory to Velcade (which I doubt I am) and much more heavily pre-treated, so it's a bit hard to draw much from that in terms of my own situation. I suppose it does have a different mechanism which based on that seems to be active in myeloma, so it might be worth a trial.
One other appeal of the trial is I'd get cytogenetic tests done on bone marrow again, which I wouldn't under my usual treatment. It could be interesting to see what it looks like this time.
I'm not tempted by an allo, although I guess I might revisit that if I were to relapse soon after my SCT. The risks both of mortality and loss of quality of life via GVHD I find off-putting, and my sibling isn't a match so I would be looking at an unrelated donor. But it isn't something I've looked into in great detail.
I suppose another option would be a tandem transplant: to do two SCTs. I don't know much about that.
And yes, ideally I'd be wanting a drug-free remission, living as much of a normal life as possible. I do work full-time, have a busy social life etc when I'm well. But equally there are trade-offs.... I would also like a long remission!!
Anyway, thanks for the messages. Thoughts from anyone else very welcome, including the medics who sometimes chip in very helpfully on here!
Best wishes with your own treatment or your loved ones' treatment! Nancy it's good to hear your SCT is holding well!
Helga
Last edited by Helga on Tue Feb 18, 2014 7:38 pm, edited 1 time in total.
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Helga - Name: Helga
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May/June 2012
- Age at diagnosis: 32
Re: Advice: two treatment options at first relapse (aged 34)
Helga-
I'm wondering why VTD has been recommended as a treatment rather than VRD. Thalidomide has a side effect profile that includes peripheral neuropathy that isn't necessarily reversible when the drug is stopped. Since Velcade can also cause peripheral neuropathy, even if the incidence is lower with injections of Velcade rather than infusions of Velcade, it would seem that combining the 2 drugs would raise the risk of this unwanted side effect.
Revlimid is the newer relative of thalidomide and has a much lower side effect profile. Peripheral neuropathy is a very low incidence. VRD is a very common treatment regimen in the US and has received a lot of attention in research with excellent results. I suggest that you ask your doctor about the reasoning behind the VTD recommendation as opposed to VRD.
I really don't know anything about panibostat, so can't comment on that. It does seem that they want to hit your myeloma hard with the addition of the Cytoxan to the mix. It seems like you couldn't go wrong with either treatment. Always remember that if one treatment isn't working in a relatively short amount of time, the treatment can be changed.
I wish you the best in your decision of which treatment to do and in the successful management of your myeloma.
Nancy in Phila
I'm wondering why VTD has been recommended as a treatment rather than VRD. Thalidomide has a side effect profile that includes peripheral neuropathy that isn't necessarily reversible when the drug is stopped. Since Velcade can also cause peripheral neuropathy, even if the incidence is lower with injections of Velcade rather than infusions of Velcade, it would seem that combining the 2 drugs would raise the risk of this unwanted side effect.
Revlimid is the newer relative of thalidomide and has a much lower side effect profile. Peripheral neuropathy is a very low incidence. VRD is a very common treatment regimen in the US and has received a lot of attention in research with excellent results. I suggest that you ask your doctor about the reasoning behind the VTD recommendation as opposed to VRD.
I really don't know anything about panibostat, so can't comment on that. It does seem that they want to hit your myeloma hard with the addition of the Cytoxan to the mix. It seems like you couldn't go wrong with either treatment. Always remember that if one treatment isn't working in a relatively short amount of time, the treatment can be changed.
I wish you the best in your decision of which treatment to do and in the successful management of your myeloma.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Advice: two treatment options at first relapse (aged 34)
Thanks Nancy, it's a good point: people here seem to talk about either velcade-based treatments or Revlimid, but not putting the two together. It may be to do with NHS funding rules, I will ask. I do have the option of Revlimid (with cyclophosphamide and dex) but that would be instead of Velcade - and the general advice here seems to be it's worth trying Velcade again if it worked once.
I know others in a similar boat on Velcade + dex, or Velcade/cyclophosphamide and dex, or randomised onto carfilzomib instead (with dex or with dex and cyclo) but I don't know anyone on RVD.
Helen
I know others in a similar boat on Velcade + dex, or Velcade/cyclophosphamide and dex, or randomised onto carfilzomib instead (with dex or with dex and cyclo) but I don't know anyone on RVD.
Helen
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Helga - Name: Helga
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May/June 2012
- Age at diagnosis: 32
Re: Advice: two treatment options at first relapse (aged 34)
For what it's worth I can share my "relapse plan" if and when that happens to me.
I have already discussed my wishes with my doctor which is to hit a relapse hard, to get back into remission and once again go "drug free". Due to my age, taking constant chemo, even if it is lower dose pills, for the rest of my life is not an option for me as I plan to be here a long time yet!
So if I were to relapse I would go on Revlimid as I have not taken it yet, and low dose dex (I refuse to take the high dose dex again as it was so hard on my body and took years to undue the stomach damage and loose the 30 pound weight gain) and Velcade, followed by a second stem cell transplant.
Previously I took Velcade cyclophosphomide and high dose dex chemo, followed by stem cell transplant in 2010 and have been drug free since then.
If I was in your shoes I don't think I would go into the panobinostat trial. I would rather take a regimem I know works! Save the experimental treatments until you run out of options? Especially because you have not taken Revlimid yet. Revlimid seems to be the darling med at my hospital now most myeloma patients have taken it front line, or at relapse, or as maintenance. All my clinic follow ups they keep wanting to write scripts for me and I have to tell them I'm not on any meds at the moment, maintenance or otherwise!
I think the part they love is that since it is pills and taken at home the patient is partially responsible for the cost.
I have already discussed my wishes with my doctor which is to hit a relapse hard, to get back into remission and once again go "drug free". Due to my age, taking constant chemo, even if it is lower dose pills, for the rest of my life is not an option for me as I plan to be here a long time yet!
So if I were to relapse I would go on Revlimid as I have not taken it yet, and low dose dex (I refuse to take the high dose dex again as it was so hard on my body and took years to undue the stomach damage and loose the 30 pound weight gain) and Velcade, followed by a second stem cell transplant.
Previously I took Velcade cyclophosphomide and high dose dex chemo, followed by stem cell transplant in 2010 and have been drug free since then.
If I was in your shoes I don't think I would go into the panobinostat trial. I would rather take a regimem I know works! Save the experimental treatments until you run out of options? Especially because you have not taken Revlimid yet. Revlimid seems to be the darling med at my hospital now most myeloma patients have taken it front line, or at relapse, or as maintenance. All my clinic follow ups they keep wanting to write scripts for me and I have to tell them I'm not on any meds at the moment, maintenance or otherwise!
I think the part they love is that since it is pills and taken at home the patient is partially responsible for the cost.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Advice: two treatment options at first relapse (aged 34)
I am also relapsing and will start treatment after a skeletal survey and another BMB. I went in to remission following a regimen of Velcade and prednisone followed a year later by a SCT. That was 3 years and 10 months ago.
My hematologist/oncologist hinted that Velcade was a good candidate because of my earlier response, but that Revlimid or one of 2 new drugs might be the choice.
If I were in your shoes and at your age, I would enter a proven regimen followed by a SCT.
My hematologist/oncologist hinted that Velcade was a good candidate because of my earlier response, but that Revlimid or one of 2 new drugs might be the choice.
If I were in your shoes and at your age, I would enter a proven regimen followed by a SCT.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Advice: two treatment options at first relapse (aged 34)
Thanks Lys and Wayne: Lys I hope you hope you don't have to put that plan into action for many years to come but thanks for sharing it. I have the same feelings about dex and weight gain!! Also about being drug-free if possible. Wayne, good luck with the next steps and thanks for taking the time to write.
I went to both hospitals yesterday and was reassured that I have two good and in a way very similar options: VTD (which has a good record) with the possible addition of panobinostat if I do the trial. The trial is in Phase II stage and it's not like I'd be taking panobinostat alone, but in addition to the proven regimen of VTD, so I don't feel so nervous about it as an unproven regimen, although that was a good point to raise. They have had 100% response rate so far, and based on my rapid response last time I'm relatively confident I'd be a responder again this time. The issue for me seems to be sustaining that response - so fingers crossed the SCT will help with that and give me a few years rather than just one.
Funding on the NHS doesn't allow for both Revlimid and Velcade together (or at least not in my current situation), so I need to pick one or the other. I'm inclined to try Velcade again and save Revlimid for the future.
I still need to find out whether my light chains are high enough for the trial based on bloods taken yesterday. If they are, I think I'll sign up as for various reasons the pros outweigh the cons for me. If not, I may just go ahead with VTD at my current hospital rather than keep waiting.
And of course yes, it's always good to remember that whatever I sign up for I can change if it doesn't work out.
Thanks again for all your thoughts.
Helen
I went to both hospitals yesterday and was reassured that I have two good and in a way very similar options: VTD (which has a good record) with the possible addition of panobinostat if I do the trial. The trial is in Phase II stage and it's not like I'd be taking panobinostat alone, but in addition to the proven regimen of VTD, so I don't feel so nervous about it as an unproven regimen, although that was a good point to raise. They have had 100% response rate so far, and based on my rapid response last time I'm relatively confident I'd be a responder again this time. The issue for me seems to be sustaining that response - so fingers crossed the SCT will help with that and give me a few years rather than just one.
Funding on the NHS doesn't allow for both Revlimid and Velcade together (or at least not in my current situation), so I need to pick one or the other. I'm inclined to try Velcade again and save Revlimid for the future.
I still need to find out whether my light chains are high enough for the trial based on bloods taken yesterday. If they are, I think I'll sign up as for various reasons the pros outweigh the cons for me. If not, I may just go ahead with VTD at my current hospital rather than keep waiting.
And of course yes, it's always good to remember that whatever I sign up for I can change if it doesn't work out.
Thanks again for all your thoughts.
Helen
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Helga - Name: Helga
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May/June 2012
- Age at diagnosis: 32
Re: Advice: two treatment options at first relapse (aged 34)
Greetings from Seattle,
Your decription of your disease, treatments and challenges is "spot on". I do not have much to say except that you are exceptionally well educated about the choices and the disease. Understanding the disease is a powerful weapon for you in your battle with myeloma. At this point it is a matter of personal preference for you in terms of distance to medical centers, delays if you elect to be on a trial, etc.
Panobinostat is a histone deacetylase (HDAC) inhibitor. There are a number of theoretical reasons that blocking this pathway should improve response in multiple myeloma. Earlier trials with the HDAC inhibitor vorinostat (Zolinza) did not show a large benefit. Therefore other HDAC inibitors are being studied.
Participating in a trial is always encouraged because we need better treatments for the disease. In order to improve the outcome for myeloma patients research has to be done to discover better therapies.
You are at a crossroad now in your path. Whatever decision you make will be the right one for you. Fortunately you are able to take advantage of a myeloma program that can give you access to the newest therapies and you live in a country with an excellent health care system.
I wish you the very best in your trials and tribulations with this disease. It is frustrating that such a young person has to suffer with multiple myeloma. Hopefully we will have more breakthrough therapies in the near future.
Your decription of your disease, treatments and challenges is "spot on". I do not have much to say except that you are exceptionally well educated about the choices and the disease. Understanding the disease is a powerful weapon for you in your battle with myeloma. At this point it is a matter of personal preference for you in terms of distance to medical centers, delays if you elect to be on a trial, etc.
Panobinostat is a histone deacetylase (HDAC) inhibitor. There are a number of theoretical reasons that blocking this pathway should improve response in multiple myeloma. Earlier trials with the HDAC inhibitor vorinostat (Zolinza) did not show a large benefit. Therefore other HDAC inibitors are being studied.
Participating in a trial is always encouraged because we need better treatments for the disease. In order to improve the outcome for myeloma patients research has to be done to discover better therapies.
You are at a crossroad now in your path. Whatever decision you make will be the right one for you. Fortunately you are able to take advantage of a myeloma program that can give you access to the newest therapies and you live in a country with an excellent health care system.
I wish you the very best in your trials and tribulations with this disease. It is frustrating that such a young person has to suffer with multiple myeloma. Hopefully we will have more breakthrough therapies in the near future.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
11 posts
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