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.

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.