Last week I met with Paul Richardson and his fellow, Tom Garcia, to discuss my options for Revlimid maintenance going forward. This is the first time I had met Tom, who has worked with Paul for the last 3 years. He was very impressed with how well I am doing. One area I discussed with Paul was whether an MRD test would be clinically useful in determining whether or not I should remain on maintenance therapy. His answer was no, because there have not yet been any clinical trials to demonstrate any advantage to discontinuing maintenance for MRD-negative patients. I was not at all surprised that he strongly recommended my continuing with the Revlimid maintenance. In other words, if it ain't broke, don't fix it! Paul was also very upbeat about all the new treatment options now available once I eventually relapse. It was a good discussion.
For any of you who are concerned that I might choose to stop taking Revlimid because of the cost, rest assured. I'm not going to do that. Life is too precious to take any gambles like that, regardless of cost. Yes it's expensive, but fortunately I can deal with that.
In the process of preparing for our meeting, I did some research on new myeloma results presented at the recent ASH conference held in early December. One paper in particular I found quite interesting. Here is the link: Revlimid, Velcade, and Dexamethasone, Followed By Stem Cell Transplantation, Yields Deep Responses And Considerable Overall Survival In Newly Diagnosed Multiple Myeloma.
This paper describes my treatment regimen almost exactly, although I was on the oral MLN-9708 instead of the infused Velcade for induction therapy. You may recall that I am considered a high-risk patient because of my t(4;14) translocation chromosomal abnormality. Not only that, but I also have the IgA type myeloma, which is more aggressive than the more common IgG myeloma. Those were two things not in my favor at my diagnosis.
Two results from this study got my attention. First, the median duration of remission of patients following stem cell transplant was only about 2 years! That stunned me. Here I am almost 7 years later still in remission.
The second result in this study was that the median overall survival of these patients was 8 years, but for those patients with one or more high-risk chromosomal abnormalities, the median overall survival after the stem cell transplant was only 5 years!
Obviously, I have been taking this way too much for granted. The stark reality of my situation has suddenly crashed down on me. I've been living on borrowed time. I am one extremely lucky dog. Every single day that I remain disease free is a gift. It's up to me to make the most of it.
Saturday, December 15, 2018
Tuesday, December 4, 2018
Sticker Shock
I've been a really lucky guy. I have been in remission from multiple myeloma for over 6 years now. One of reasons may be that I have been fortunate to be on a clinical trial that has provided me with continuing maintenance using the drug Revlimid on a daily basis free of charge over that time. As you may know, Revlimid is an exorbitantly expensive drug, one of the most expensive in the world. Lucky me.
Well, my luck is about to change. I just found out yesterday at my monthly Dana Farber visit that the clinical trial I am on is terminating at the end of this month. That means from now on, I will have to pay to continue with my Revlimid maintenance. That's not good.
After my initial shock, I came back home to determine what financial effect that would have. I am in the process of reviewing my Medicare Advantage Plan options for next year, and I have to make a decision by December 7. I looked at my options on the Medicare website and added Revlimid to my list of drugs. That was an eye opener! Fortunately, I have an Advantage Plan. If I only had Medicare Part B, I'd pay list price and my out-of-pocket cost of adding Revlimid would be about $300,000 next year! Holy crap! How could anyone other than the super rich ever afford that? With the Advantage Plan, my expected out-of-pocket costs for Revlimid will be a "mere" $14,000 next year. Whew! I guess I should be happy, but I'm not. That still comes to about $40 per day.
Celgene has the world by the balls and has consistently increased the price of Revlimid over the years to its currently stratospheric levels. They have been able to do this by cleverly holding on to their patents by requiring monthly surveys to assess safety in using the drug (because it can cause birth defects). Good for them...bad for us.
I don't think that I will qualify for any of the financial aid plans that are available out there, because I'm pretty sure I will be over the income limits. I may look into this, but I'm not hopeful.
Now I have a decision to make. Do I want to keep taking Revlimid at these prices and hope that I stay in remission? How important is it that I continue to do this? Maybe I will relapse even if I do continue to take it. Maybe there is some other maintenance drug that is less expensive and might work. Maybe I'm actually cured and don't need it any more. Or maybe treatment options have improved so much over the last few years that even if I do relapse, my survival chances are good. At what price to I decide take a chance by stopping the Revlimid? These are important questions for me.
Today I scheduled an appointment with Dr. Richardson on December 11 to discuss these issues. One of the things I want to discuss is how deep is my remission. Some patients have reached a state of Mimimal Residual Disease (MRD), where less than one in a million cancer cells can be detected. In that case, treatment options are much more flexible than with less stringent conditions. In fact, there are some who say that a response of that level represents a "cure" for MM. I was never tested for MRD (my remission was based on the standard test of less than one cancer cell in a thousand). I had asked Paul last year about getting tested for MRD, but he told me it wasn't necessary since I was on a continuing maintenance protocol. Well, I think that has now changed, right?. I may ask him to test me for my level of remission. If I can show that I am in MRD remission, why do I need to spend $14K a year on an exorbitantly expensive maintenance drug? Inquiring minds want to know.
I'll update this blog once I have some answers.
Well, my luck is about to change. I just found out yesterday at my monthly Dana Farber visit that the clinical trial I am on is terminating at the end of this month. That means from now on, I will have to pay to continue with my Revlimid maintenance. That's not good.
After my initial shock, I came back home to determine what financial effect that would have. I am in the process of reviewing my Medicare Advantage Plan options for next year, and I have to make a decision by December 7. I looked at my options on the Medicare website and added Revlimid to my list of drugs. That was an eye opener! Fortunately, I have an Advantage Plan. If I only had Medicare Part B, I'd pay list price and my out-of-pocket cost of adding Revlimid would be about $300,000 next year! Holy crap! How could anyone other than the super rich ever afford that? With the Advantage Plan, my expected out-of-pocket costs for Revlimid will be a "mere" $14,000 next year. Whew! I guess I should be happy, but I'm not. That still comes to about $40 per day.
Celgene has the world by the balls and has consistently increased the price of Revlimid over the years to its currently stratospheric levels. They have been able to do this by cleverly holding on to their patents by requiring monthly surveys to assess safety in using the drug (because it can cause birth defects). Good for them...bad for us.
I don't think that I will qualify for any of the financial aid plans that are available out there, because I'm pretty sure I will be over the income limits. I may look into this, but I'm not hopeful.
Now I have a decision to make. Do I want to keep taking Revlimid at these prices and hope that I stay in remission? How important is it that I continue to do this? Maybe I will relapse even if I do continue to take it. Maybe there is some other maintenance drug that is less expensive and might work. Maybe I'm actually cured and don't need it any more. Or maybe treatment options have improved so much over the last few years that even if I do relapse, my survival chances are good. At what price to I decide take a chance by stopping the Revlimid? These are important questions for me.
Today I scheduled an appointment with Dr. Richardson on December 11 to discuss these issues. One of the things I want to discuss is how deep is my remission. Some patients have reached a state of Mimimal Residual Disease (MRD), where less than one in a million cancer cells can be detected. In that case, treatment options are much more flexible than with less stringent conditions. In fact, there are some who say that a response of that level represents a "cure" for MM. I was never tested for MRD (my remission was based on the standard test of less than one cancer cell in a thousand). I had asked Paul last year about getting tested for MRD, but he told me it wasn't necessary since I was on a continuing maintenance protocol. Well, I think that has now changed, right?. I may ask him to test me for my level of remission. If I can show that I am in MRD remission, why do I need to spend $14K a year on an exorbitantly expensive maintenance drug? Inquiring minds want to know.
I'll update this blog once I have some answers.
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