Hello Everyone,
I am a fifty year old Canadian male who has been battling with Myeloma since January 2012 and I wish I could say that the fight is going my way but I can’t. The bald fact is that I have no real idea of where I stand in terms of how bad my multiple myeloma is and how successful my treatment has been thus far. Worse, I have become plagued lately with a growing sense of unease that what little my hematologist tells me (and will ever tell me) is motivated more out of concern for his role in the socialized (a nice word for “limited”) health care system here in Canada rather than for me as an individual patient fighting for a couple more years of life.
So I am working on getting down to a clinic in the US for a second opinion (probably Dana-Farber). But I also thought I would get the opinions of those of you out there who know the enemy first hand…
My story as briefly as I can: I was diagnosed with multiple myeloma in January 2012. My particular multiple myeloma flavour dumps free Kappa light chains into my blood and this is what I monitor to assess cancer status. I do not know what the Kappa levels were when I was diagnosed but after radiation to treat the massive T5 spinal tumor the level was 978 mg/L. I was then given six cycles of CyBor-D induction chemo. In looking back on the data it is clear that I did not respond well to the chemo, particularly the Bortizomib; FLC levels fluctuated over the six months between a low of 330 and a high of 602 mg/L, clearly in response to changing dosages of Dexamethasone and Cyclophosphamide. More importantly, the FLC ratio was all over the map as well, and very high topping out at 830% at one point. Despite the apparent instability of the cancer I underwent an autologous stem cell transplant in late August to which I also, clearly, did not respond all that well. The first FLC test post transplant was done mid December and was down to 213 mg/L Kappa with a ratio of 25%. At that time I was put on 15 mg/day Revlimid maintenance and since then the Kappa levels seem to have stabilized and have dropped slightly to 160 mg/L with a ratio of 6%.
Not too bad… but definitely not stellar, right? So here is my question: Should I be doing something other than a simple “maintenance” dose of Revlimid right now? My common sense opinion (something my doctor responds to like he would the offer of a handful of spit) is that I need to continue hammering the cancer with the biggest guns I can get my hands on until the FLC levels are normal, and then go on maintenance. My concern is what I understand will be an eventual resistance to Revlimid. Again, common sense tells me that to delay resistance I need to minimize the number of cancer cells and also minimize the time I spend with each and every one of those little… I won’t say the word I’m thinking of!
After spending some long overdue time on this site I realize there are a lot of very savvy folks here and any opinion – medical or otherwise – regarding my story and my questions would be much appreciated.
Yours in solidarity,
Chris
Forums
Re: Is maintenance Revlimid the right thing right now?
Hi Chris..everyone does say on this site to get a second opinion if you have concerns about treatment. So whether that was at home or in the US, it sounds like a good idea for you. Obviously it would be expensive to get a second opinion in the US though!
Why do you think that your treatments are limited now, if you don't mind me asking?
Why do you think that your treatments are limited now, if you don't mind me asking?
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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: Is maintenance Revlimid the right thing right now?
I'm sorry you did not respond as deep as hoped for 
I think that may be influencing your opinion of your treatments. I don't know how much of the "socialist system" is to blame, sounds more like a poor dr. patient relationship to me.
It does sound like you hope Canada would offer a treatment option like the Total Therapy Regime of double transplants and heavy duty chemo in the US. I think it is important to note that even in the US this treatment is only practiced by a few centres with more centres using similar approach as you've had in Canada, (step by step though all available treatments, instead of using them all up front at the same time)
You've already used two of the newest (approved) meds for multiple myeloma (Velcade and REV). In 2010 in Ontario when I did my treatment niether was was available to me. I did get Velcade on compasionate ground because of my age (32 when diagnosed) Rev was only approved for relapse, not maintenence.
I agree you need a second opinion, with a Dr. who takes time and aswers your questions.
One thing my old dr. did was always bring a print out of blood test results and would go over each number with me so I kew what was going on with my multiple myeloma.
I think that may be influencing your opinion of your treatments. I don't know how much of the "socialist system" is to blame, sounds more like a poor dr. patient relationship to me. It does sound like you hope Canada would offer a treatment option like the Total Therapy Regime of double transplants and heavy duty chemo in the US. I think it is important to note that even in the US this treatment is only practiced by a few centres with more centres using similar approach as you've had in Canada, (step by step though all available treatments, instead of using them all up front at the same time)
You've already used two of the newest (approved) meds for multiple myeloma (Velcade and REV). In 2010 in Ontario when I did my treatment niether was was available to me. I did get Velcade on compasionate ground because of my age (32 when diagnosed) Rev was only approved for relapse, not maintenence.
I agree you need a second opinion, with a Dr. who takes time and aswers your questions.
One thing my old dr. did was always bring a print out of blood test results and would go over each number with me so I kew what was going on with my multiple myeloma.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Is maintenance Revlimid the right thing right now?
Hi Chris,
I'm 9000 km away in Australia but I think we have the same doctor!!!
My Revlimid plan consists of a 5 minute, ask no quationa monthly meeting followed by a trudge to the bottom floor to pick up the next 2 months supply. That's it....leave the hospital totally full of confidence on where I,m headed , and no real alternative due to multiple myeloma's mystery over here.
Now 5 years into the multiple myeloma sentence, I have a couple of views...
Doctors fear the repercussions of advice, looking to the future, suggestions and looking ahead....millions in lawsuits have cut them back to mere petrol pump jockeys rather than mechanics.
When on a trial, the natural instinct is to talk up the drug, problems are treated with disdain and the patient simply is a guinea pig.
I'm looking for a specialist in NSW who listens, tells me what the pain is all about and trains me on cancer.....and the drugs.
All the best
I'm 9000 km away in Australia but I think we have the same doctor!!!
My Revlimid plan consists of a 5 minute, ask no quationa monthly meeting followed by a trudge to the bottom floor to pick up the next 2 months supply. That's it....leave the hospital totally full of confidence on where I,m headed , and no real alternative due to multiple myeloma's mystery over here.
Now 5 years into the multiple myeloma sentence, I have a couple of views...
Doctors fear the repercussions of advice, looking to the future, suggestions and looking ahead....millions in lawsuits have cut them back to mere petrol pump jockeys rather than mechanics.
When on a trial, the natural instinct is to talk up the drug, problems are treated with disdain and the patient simply is a guinea pig.
I'm looking for a specialist in NSW who listens, tells me what the pain is all about and trains me on cancer.....and the drugs.
All the best
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Ronnie Revlimid
Re: Is maintenance Revlimid the right thing right now?
Hope this helps, some. My wife was diagnosed in January of 2012 also. She retired in 2011 from Baltimore Washington Med Ctr. After a consult with a doctor she knew quite well, we went to Johns Hopkins in Baltimore to meet with the director of the Myeloma clinic at Hopkins. She recommended Rev & Dex & Zometa and told us there is a chance my wife could live a long life using Rev as a maintenance drug once the Myeloma was in check. She started out with the kappa light chain at 2960 and now after 16 months on Rev (stopping the Dex this past January) her kappa is 19.5 and been normal for the past 6 months. Blood work is up and down but when it is up we go places and when down, we don't. She has been doing great and I have more aches and pains then she seems to have. She just turned 68.
Hope this helps.
Hope this helps.
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garnold - Name: garnold
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: Jan. 2012
- Age at diagnosis: 67
Re: Is maintenance Revlimid the right thing right now?
Sorry, above light chain should have lambda not kappa.
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garnold - Name: garnold
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: Jan. 2012
- Age at diagnosis: 67
Re: Is maintenance Revlimid the right thing right now?
Hi Ronnie, we are also in NSW and totally understand where you are coming from. My hubby has an apt with other multiple myeloma specialist in July for a second opinion.
Where are you being treated at the moment?
Regards
Sharyn
Where are you being treated at the moment?
Regards
Sharyn
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Anonymous
Re: Is maintenance Revlimid the right thing right now?
Thanks All,
Yes… a second opinion seems like a no brainer and I’m looking for it in the US simply because it is not Canada. And in all honesty my post was part rant; and for that I apologize to everyone here, especially my fellow Canadians. I should have known that I would be opening a can of worms over the Canadian health care system! So here is my last word on that: In Canada, because the big pile of dollars I am soaking up are paid to the doctor by “the system” it is difficult for me to act like (and very difficult for the doctor to see me as) a “customer” let alone an equal partner. That position of being “the beneficiary” of the system tends to provide a fertile breeding ground for the kind of treatment I and others like Ronnie (I feel your frustration brother) seem to be getting. But when the money that funds my testing and treatment comes directly out of my pocket I feel more like a partner with an indisputable say in the transaction, and I think a doctor would be more inclined to sympathise with that position. And as for cost Nancy… well (ha ha ha) I’m not going to take it with me when I go right?
So my position at this point is this: I am one of many multiple myeloma patients going to a specific hospital here in Toronto and receiving what looks like a “cookbook” treatment. All patients going by on the treadmill seem to be getting the identical remedy. This has me concerned because (and here goes my common sense again) when a template treatment is used then, by definition, is not optimal for the patient. For example, I have learned that an ASCT is only really effective when the cancer is stable going into the transplant. Mine was anything but, as even a cursory look at the FLC data clearly indicated. I underwent the transplant anyway because I was next in the breadline and it was then or perhaps never.
All this brings me back to my initial question: is low dose Revalmid “maintenance” the optimal treatment for me right now, in my condition, or is it just chapter 3 of the cookbook? I have yet to ask my doctor this question but I will. But when I do I intend to be a bit more informed than I am at present. I like what you have to say, garnold… your wife was treated with a Revalmid Dex cocktail (I’m going to research Zometa) that reduced her cancer, as indicated by normal FLC levels, to a minimal state – and in the same amount of time it took me to barely get within chipping distance of the green. Her cocktail is something for me to consider in my goal of getting to normal FLC levels faster at this point.
But perhaps the less self evident question concerns my underlying assumption that getting to normal FLC levels faster is a good thing to do? So far nobody has been able to convince me that this is a bad idea, drug side-effects notwithstanding.
As always, best regards to all…
Chris
Yes… a second opinion seems like a no brainer and I’m looking for it in the US simply because it is not Canada. And in all honesty my post was part rant; and for that I apologize to everyone here, especially my fellow Canadians. I should have known that I would be opening a can of worms over the Canadian health care system! So here is my last word on that: In Canada, because the big pile of dollars I am soaking up are paid to the doctor by “the system” it is difficult for me to act like (and very difficult for the doctor to see me as) a “customer” let alone an equal partner. That position of being “the beneficiary” of the system tends to provide a fertile breeding ground for the kind of treatment I and others like Ronnie (I feel your frustration brother) seem to be getting. But when the money that funds my testing and treatment comes directly out of my pocket I feel more like a partner with an indisputable say in the transaction, and I think a doctor would be more inclined to sympathise with that position. And as for cost Nancy… well (ha ha ha) I’m not going to take it with me when I go right?
So my position at this point is this: I am one of many multiple myeloma patients going to a specific hospital here in Toronto and receiving what looks like a “cookbook” treatment. All patients going by on the treadmill seem to be getting the identical remedy. This has me concerned because (and here goes my common sense again) when a template treatment is used then, by definition, is not optimal for the patient. For example, I have learned that an ASCT is only really effective when the cancer is stable going into the transplant. Mine was anything but, as even a cursory look at the FLC data clearly indicated. I underwent the transplant anyway because I was next in the breadline and it was then or perhaps never.
All this brings me back to my initial question: is low dose Revalmid “maintenance” the optimal treatment for me right now, in my condition, or is it just chapter 3 of the cookbook? I have yet to ask my doctor this question but I will. But when I do I intend to be a bit more informed than I am at present. I like what you have to say, garnold… your wife was treated with a Revalmid Dex cocktail (I’m going to research Zometa) that reduced her cancer, as indicated by normal FLC levels, to a minimal state – and in the same amount of time it took me to barely get within chipping distance of the green. Her cocktail is something for me to consider in my goal of getting to normal FLC levels faster at this point.
But perhaps the less self evident question concerns my underlying assumption that getting to normal FLC levels faster is a good thing to do? So far nobody has been able to convince me that this is a bad idea, drug side-effects notwithstanding.
As always, best regards to all…
Chris
Re: Is maintenance Revlimid the right thing right now?
Chris,
FYI,
She was put on Rev 25 mg, Dex 4 mg (10) each, every Monday and Zometa I V once a month when we went to Hopkins. In January 2013 the Dex was halved, then halved again and in March was discontinued and the Rev dropped to 15 mg. Plan is Zometa until January 2014 (2 years total), drop the Rev to 10 mg and depending on how it works maybe 10 mg for the rest of her life.
FYI,
She was put on Rev 25 mg, Dex 4 mg (10) each, every Monday and Zometa I V once a month when we went to Hopkins. In January 2013 the Dex was halved, then halved again and in March was discontinued and the Rev dropped to 15 mg. Plan is Zometa until January 2014 (2 years total), drop the Rev to 10 mg and depending on how it works maybe 10 mg for the rest of her life.
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garnold - Name: garnold
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: Jan. 2012
- Age at diagnosis: 67
Re: Is maintenance Revlimid the right thing right now?
Hi Chris, I think that the Beacon is a good resource actually to find out more information (obviously I think that or I wouldn't be reading it and trying to contribute to it!!). I do know of other patients who have gotten consults out of the country. I am sorry that it is not working well for you right now. Best wishes to you and hope that everything goes well for you...yet there are some world experts in Myeloma in Toronto. I have heard them speak at patient education conferences. But you should do what you think is best for yourself of course.
i think that in Canada, the system not being open so much to 'off book' prescribing of chemo meds, and also in that some of the newer meds are not available here yet outside of clinical trials and compassionate release, we have somewhat less of choice that way. The oncologists can only work within the system we have. At least it is open to everyone....public access to all.
i think that in Canada, the system not being open so much to 'off book' prescribing of chemo meds, and also in that some of the newer meds are not available here yet outside of clinical trials and compassionate release, we have somewhat less of choice that way. The oncologists can only work within the system we have. At least it is open to everyone....public access to all.
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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
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