To bring you up to speed, yesterday I wrote this:
So as you can see, the answer to the question, “How long do I need to stay on maintenance therapy?” is a complicated one. A majority of hem/oncs would answer, “Indefinitely.” At least that’s what one needs to do in order to gain the significant time to disease progression benefit outlined in studies like the one above.
At this point, readers often ask: “How can using maintenance therapy keep my myeloma away for almost two extra years, yet in the end not help me live much longer?”
Great question! I will attempt to answer it tomorrow…
Justin’s comments from last night echoed my “million dollar question”:
That statistic (increased time to disease progression but NOT overall survival) is the thing that constantly haunts me on a daily basis. It just SHOULDN’T BE! One should follow the other, and it’s possible it is (on a patient by patient standpoint rather than the whole), but the trend does tend towards the “you’re damned if you do and damned if you don’t”….
Great point, Justin! It doesn’t make any sense. Depending on the study, maintenance therapy, using Revlimid, slows time to disease progression–also often referred to as progression free survival (PFS)–on average between 19 and 22 months. That’s an almost two year advantage over doing nothing!
So what gives? I have a theory.
While I was visiting two Minnesota support groups last month, something jumped-out at me. A majority of patients were in the midst of taking extended drug free holidays, including several patients that had recently relapsed.
What makes this so unusual is that the standard of care these days is to keep relapsed patients on meds continually. The theory is allowing advanced myeloma to gain momentum risks facing the beginning of the end; a runaway freight train that can’t be stopped once therapy is resumed.
Well, apparently Mayo Clinic and University of Minnesota docs don’t necessarily agree! One of the patients I spoke with was on a drug free holiday following his third relapse, despite not having any medical issues that might force him to stay off chemo.
This regional anomaly highlights my theory. Sue (Patient One), stays on maintenance and her myeloma is held-down for an extended period of time. But when it busts-out, it has become resistant to one of the two main drugs that could be used to knock-it-back.
Randy (Patient Two), stops using Revlimid as soon as they achieve a complete response (CR), or their myeloma becomes stable and they achieve a very good partial response (VGPR).
Randy’s myeloma returns a full year earlier than Sue’s. BUT Randy’s myeloma isn’t as drug resistant as Sue’s. So the Revlimid works for Randy, knocking his myeloma back and keeping it stable for 18 months.
In the end, both patients ends-up in the same place!
Each approach has advantages and disadvantages. While taking an extended drug free holiday might be great short-term for the body and soul, data in yesterday’s study summary pointed-out how more patients died when they weren’t on maintenance. And many patients (and docs!) aren’t confident enough to give-up the security blanket of ongoing therapy and quit cold turkey–especially in the face of such overwhelming PFS data.
Following yesterday’s post, Purdue University researcher, Gary Blau, wrote this:
Pat: I am looking to answers to this question not only for those following a transplant but for us elderly and frail types who jump right to maintenance following consolidation. I hope you will also address the issue of becoming refractory to maintenance agents. Shouldn’t we be saving their use until needed?
How about dosage regimen. It seems to me that in the past you decried the three year maintenance period at UAMS. Have you changed your perspective?
Insightful questions, Gary! I will try and answer them tomorrow.
Feel good and keep smiling! Pat
September 5th, 2012 at 1:40 pm
Steve is going on a three week drug free holiday–one of those is his normal week off, but he gets two extra for a trip to Italy and he isn’t even in remission. This is with the idea that he may be put on a differeent trial when he returns. He is actually doing quite well except for the steroid. It affects him like nobody else we have seen. His whole body blows up. His face, neck and mid-section and even his legs are so large. The fluid builds up under his skin. Right now the treatment is worse than the cancer and his Mayo Doctor knows that. She tells him there are so many new things to try when he gets back so will keep you posted. He actually wanted a transplant just to get off the drugs but she didn’t think that was necessary yet. He will be taking curcumin all the while he is off.
September 5th, 2012 at 3:55 pm
I had auto SCT 4/2012 and am in VGPR. I started Revlimid 19 days ago for maintenance. I am 47. I am curious about how long I will live. Are there any resources that show this information, averages? I want to know if I should get my bucket list going!
September 5th, 2012 at 4:00 pm
Hello Pat (and followers):
I’m a “long-time listener, first-time caller”. I was diagnosed Stage 2 MM last January and immediately started an aggressive RVD regimen (25mg Rev daily, 3.2cc Vel IV 2x a week, 20mg Dex 2x a week). By late June, I was in VGPR/CR. I experienced some annoying PN, but otherwise took it well. I am 51, and other than being a bit overweight, I have no complicating issues (kidneys good, no bone pain, in general good health). I had an auto SCT one year ago, and have been in “Strict Complete Remission” since – the docs can’t find any trace. I have been on daily 10mg Rev (3wk on/1wk off) maintenance since month 3.
Most of the recommendations, as you have mentioned, have been to stay on maintenance indefinitely, with the caveat that there is risk of secondary cancer and that the chance of refractory relapse is greatly increased. In view of this (and your blog, especially the past series), I question why this is the only recommended option for me. I know that I’m more the exception than the norm: most of you are much further advanced in this journey than I (and sometime I feel guilty admitting it in a forum such as this). I’m well aware that this thing is almost guaranteed to raise its ugly head again. But if I’m in such good shape, doesn’t it make more sense to reduce future risk by stopping maintenance and monitor, rather than continue ingesting helpful toxic medication to fight something the doctors can’t currently find?
I’m all for aggressive treatment, especially when fighting a killer. I also want to “save my ammo”; especially if there’s a chance I could shoot myself in the process.
I am interested in other viewpoints/perspectives, anything else I should consider before seeing the transplant doc in two weeks.
September 5th, 2012 at 5:35 pm
Crazy how different drugs effect different people! Keep me updated, Mikie!
September 5th, 2012 at 5:43 pm
Sounds like you have many years left, Rhonda! There is actually a new site you might try. CLICK HERE. Talks a lot about survival stats. Gary Peterson out of Orlando edits the site. Anyway, median life expectancy for a patient diagnosed in 2011 (You?) after a successful SCT should be between seven and eight years–maybe longer. And that’s the median. Means half live longer. Also, as many as six FDA approved drugs should clear in next five years. Who knows how many years that may add to the averages. HOPE is not an unreasonable feeling for you right now!
September 5th, 2012 at 5:47 pm
Hey Marv! We get lots of newly diagnosed patients visiting here each day. You’re a veteran! Whether to stay on maintenance or not is a flip of the coin. I wouldn’t be! I also wouldn’t be too worried about secondary cancers. For me, it’s a quality of life decision. If insurance pays for your Rev, and it doesn’t bother you, stay on. Or compromise and drop down to 5 mg. That’s where I’m headed next month. After over 5 years on Rev, just can’t keep my white counts up using 10 mg or more indefinitely…
September 5th, 2012 at 8:37 pm
Marv -
This is a very complex issue. One thing I will point out, though, is that a myeloma patient typically has a trillion cancer cells at diagnosis, and a billion cancer cells at complete remission. A billion.
Lotta cells.
But it depends on what you, and your doctor, want to get from maintenance and your overall approach to the disease.
I’ve done three years of maintenance, and I’m trying to determine whether or not to continue indefinitely, or to discontinue under the theory that I’ve already achieved what the therapy set out to achieve. I will see some data from UAMS next week that should help illuminate the tradeoffs and I will be happy to share that if people are interested.
September 6th, 2012 at 1:04 am
Hey Marv ~
I know exactly where you are coming from! I had ASCT two years ago reached VGPR ….. declined doing maintenance ….. decided ( against doctors recommendation) to watch and wait. Happy to report I’m still in VGPR.
Figured I’d save my “ammo” and pull out the big guns again when needed.
September 6th, 2012 at 9:39 am
I’m glad you have had a chance to let your body heal-up, Mary! Here’s to many years of a great quality of life…
September 6th, 2012 at 9:51 am
Marv – You and I are in about the same place. Like you, I have been lurking on most of the blogs here since my diagnosis last February at the age of 41. (To both Pat and Nick – Thank you, by the way, for your work. It has helped me stay centered through this journey.) Went through 4 cycles of RVD induction that took me to a strict CR (yay!) and went in for my ASCT in late August last year. Given my somewhat negative cytogenics (t4:14), I went through 4 cycles of RVD consolidation at the start of this year, and am now undergoing maintenance of Rev and Velcade. A somewhat unusual regimen overall, but after my own due diligence, I decided to take the approach that while I am healthy I might as well through the works at it. (Although not as much stuff as say UAMS throws at it…)
As to the maintenance, my oncologist is of the opinion that we should limit this to two to three years as it has been his experience that going longer leads to more risk of infection and general breakdown of health. Additionally, he would like to see a break so that we have a chance of re-applying the same regimen should this rear its ugly head again. (And yes I know the stats – Just being optimistic.) I can’t fault the logic. The way I look at it, it’s somewhat of a guess either way (albeit a somewhat educated one), and there will be much more research available over the coming few years to guide changes to the routine as necessary.
Nick – I for one would be very interested in whatever new data you have from your team. I’ll assume you are planning on posting this to your blog?
September 6th, 2012 at 4:26 pm
Its interesting to hear everyone’s point of view. I really feel its an individualized decision. My 56 year old dad has Stage III MM. He received CR after RVD and then went on to have a stem cell transplant. That was even a decision we were divided on as a family. I’m of the notion of why try and fixed what isn’t broke (yet). We did decide to do the stem cell transplant and my dad is 15 months CR post stem cell. He is not doing matienance therapy at the advice from his local and Stanford doctor. I’m in agreement with this as well. He had horrible nearopathy from the chemo and it was a quality of life decision for him. He wants to feel good, which for the most part he really does. We feel fortunate to have such positive response particularily because he has advanced and a considered agressive form of the disease based on abnormal chromosomes. I figure save all options for relapse and he was so turned off by the chemo/transplant who knows what he’ll decide once he does relapse. Much love to all.
September 6th, 2012 at 5:45 pm
Sounds like his decision is working well for all of you! Hope he doesn’t relapse for a long, long time!
September 6th, 2012 at 5:47 pm
Russ, sounds like a compromise. Some maintenance, some rest. Wouldn’t it be great if we knew what was most likely to work and why? No reason this plan isn’t the answer. Specialists simply don’t know…