Monday, June 7, 2010

Maintenance or Not - A Patient Perspective

I posted about this three days ago, but have now heard the talks and thought about it some more.

At least three different papers at the American Society of Clinical Oncology (ASCO) make this clear: When a good response (from a transplant or drug combo) is followed by continuous maintenance with a single agent drug, the time of remission may be extended significantly.

For example, I get an autologous stem cell transplant (SCT), or I go on a multi-drug treatment, and achieve a "very good partial response" (VGPR) or even a "complete response" (CR). That may be followed by a couple of months of additional drug therapy, such as Velcade or Revlimid with dexamethasone (Dex), to "consolidate" my response and hopefully improve it even more. Then I would LOVE to go on a drug holiday for a while, but instead I start taking Revlimid at 10 mg/day, 21 days out of each 28 (example). According to one study, my chance of remaining free of disease progression for three years would be increased from 35% to 68% because I took the maintenance drug.

Speakers at the conference used words like "new treatment paradigm," implying that post-SCT maintenance will soon be the standard of care. Mostly they mean maintenance with low-dose Revlimid as a single agent.

Having thought it over, though, it may not be a simple choice for me. For instance, we know that the myeloma will eventually return in either case, so if I take Revlimid for maintenance, will I still have it available as a possible therapy later when the disease does come back? My very knowledgable friend says maybe so, because (1) the Revlimid dosage will be higher; (2) and it can be combined with other agents such as Dex and even melphalan or Velcade. I am skeptical, but neither of us is a doctor, and this question really did not come up at the talks. I sure do want to get the opinion of my Dr L.

Here are some pros and cons from my point of view.

Pro Maintenance
  • A longer time before my tumor burden goes up and my doctor and I have to figure out a new plan. Just take the drug and don't think too much about it.
  • More-frequent blood tests. These will be necessary to check for drug side effects, and in my view this is a pro rather than a con because the tests may reveal other problems, including disease progression, sooner than otherwise.
  • A greater chance that a brand-new therapy will be available by the time I need it. How cool would that be!
  • Maybe, but not for certain, a longer life. See below.
Pro Drug Holiday
  • Regular, ordinary, high-quality life, including:
    • Freedom from the suffocating expense of Revlimid or whatever is my maintenance drug. This affects some people much more than others.
    • Freedom from the side effects. So does this.
  • When the myeloma does come back, Revlimid may be fully available as my next therapy. It might be anyway, but I suppose more likely if the myeloma hasn't come back in the face of Revlimid maintenance.
The studies aren't mature enough yet to show an actual survival advantage for maintenance. It is possible that they will never show one because the myeloma will eventually return in either case, at which point other therapies will be tried, and some may succeed.

I am not actually facing this decision right now, and I invite you to comment if you are. Aw heck, comment anyway. :-)

Below: A slide by the lead researcher in the study of the drug that I am currently taking. I'm still receiving primary therapy, not maintenance. Pomalidomide is good stuff

By the way, Blogger was down for a day and just came up, so look farther down for posts that got stacked up in the interim.


  1. I had an autologous transplant in November and achieved complete remission. My primary oncologist did not recommend maintenance therapy; my consulting oncologist (I have very good insurance!) did. I opted to go maintenance-free though confidence in my decision is sometimes shaken by the PR blitz done on behalf of Revlimid. I am happy to be drug-free for now (I also have had kidney failure related to MM so being drug-free has even more benefit) but wonder if the long -- hopefully long -- term results will prove my decision was a good one.

  2. Hi Gino,

    I wonder if you'll ever know if the decision was good. When the myeloma returns you will try another treatment, and life will go on, hopefully long.

    I'm not sure there is a right or wrong decision. I love that your doctors didn't give the same advice.

    Thanks for your comment.

  3. Hi Don-
    Great question! The growing argument for maintenance therapy is one of the reasons I have decided to wait on a SCT... Why go to transplant if I am going to have to use the drugs afterwards, anyway?

    Maintenance seems to be buying six months, maybe more of progression free time. Is that enough of a gain to go that route when, in many cases, drugs you would have used for mainenance will knock the myeloma down/back anyway? Guess I agree with you- Pat

  4. Great post Don, you are vert articulate!

    It seems like with the work Dr. Barlogie has done with his Total Therapy at UAMS, their belief is that induction followed by two autologous stem cell transplants and consolidation leads to a cure in I believe (don't quote me) in 80% of low risk (from the gene array test) patients. I think I heard 85% of MM patients are low risk, so the cure rate would be around 60% in all MM patients.

    You make the comment that the disease will inevitably come back, but UAMS has data that says otherwise. As a young patient with a young family, it's hard not to gravitate to the idea that aggressive treatment up front can be a cure for MM patients. I am stuck between realism and optimism, but I tend to side with the data I have seen from UAMS.

    Have you seen UAMS data on their TT3 results? I know Nick has posted on this topic several times.

    Anyways, I am going with the tandem transplant followed by maintenance therapy in hope to get the best long-term outcome; 7-10 years of remission and who knows, maybe a cure. We'll all just have to wait it out and see!

  5. I wasn't aware that UAMS claimed 80% "cure" rate for TT3. I wonder what they mean by cure. They don't seem to have a lot of credibility at meetings like ASH and ASCO for some reason.

    It's worth asking my Mayo doctors what they think about that claim. My myeloma is low-risk. The decision may be different for a 69-year-old though.

  6. Don, as an newly diagnosed 60-year old SMM patient I read your blog entries with keen interest.

    After reviewing your labs, I was curious as to why you are not having your B2M checked any more?


  7. Hi Jeff,

    The real reason is that Dr L isn't ordering that test! It's been a while since I asked her why not, but my recollection is that B2M is most useful in initial diagnosis and staging, and in my case IgG, M-spike, and the kidney & liver function tests are more-direct measures of that is going on today.