Monday, October 12, 2009

The Trials of Trials

First, thank you once again to all who donated to Light the Night. Dan's Team will likely exceed $15,000 once all monies are collected. We had a great time at Darin and Liz Schankers before the walk as well as during the walk. My friends from the Leukemia and Lymphoma Society once again put together a great event. Thank you Joni, Amanda, Tamara, Rebecca and everyone at LLS.

Second, we are trying to keep our chins up as we absorb the Rockies loss to the Phillies in the National League Division Series. Leading 4-2 in the top of the ninth inning, the Rockies couldn't protect their league and lost 5-4. Season over. Ah, what is it those Cubs fans have said for years? Wait 'til next year.

I see Rifkin on Thursday, but don't expect there will be any news. I've spent the last week on the phone with the researchers in charge of clinical trials at MD Anderson and The Mayo Clinic. I'm currently scheduled for a workup at MDA in Houston the end of this month.

We're still working with Mayo. They are not sure I qualify for the current pomalidomide trial as they are unsure whether I ultimately failed to maintain a response to revlimid. Revlimid is a derivative of thalidomide. Pomalidomide is also a derivative of thalidomide, but with fewer side effects than revlimid or thalidomide. Anyway, 2 years ago I responded well to velcade/revlimid/dex, but Rifkin took me off it because of his concern about toxicity. The current pomalidomide trial requires participants to be refractory after treatment with revlimid, i.e., the disease starts to progress while under treatment with revlimid. Rifkin is taking a closer look at my records to see if I still might qualify. If not, there is another pomalidomide/dex trial that Mayo will be starting, perhaps in late November, that does not have this eligibility requirement. However, Rifkin seems a bit uncomfortable with my waiting that long to get treatment. Mayo suggested I could consider going on Revlimid/velcade/dex again and if I failed to respond in 30 days I would probably qualify for the current trial. If I responded, well, that would be good, too. The current trial has 20 slots open. The new trial will have 12 slots for Mayo at its 2 sites--Scottsdale and Rochester. Limited slots available, act now?

So, options appear to be 1) go back on revlimid as discussed above; 2) stay on prednisone and wait for the new trial to open; 3) follow the recommendations at MD Anderson (not yet known). By the first part of November we'll have better info. That being said, I'm sure of a couple of things. First, Rifkin wants me to get the newest treatment available and wants me to get evaluations at both MD Anderson and Mayo. He is therefore, not likely to strongly recommend trying revlimid again. That being said, however, ultimately he will tell me it is my decision. I've been here before. He'll say, here are your options, no one knows what will work, all choices are reasonable. There are many variables here. Revlimid hits the white cell, red cell and platelets hard and my counts have taken a beating. No one could guarantee they will recover. If I go straight to pomalidomide and don't respond, there aren't many choices left (I like to have a drug or 2 "on the shelf" if current treatment fails, if at all possible). If I have to be in residence for some period of time for the trial, MD Anderson would be better because Susan's brother lives in Houston. If I could qualify for the current pomalidomide trial at Mayo they would let me take the drugs here in Denver and be followed by Rifkin, with perhaps once a month visits to Scottsdale. And then there is the question of insurance. I'm not sure what my health insurance will cover. One of the uses of funds raised by Light the Night is to assist patients with funds to pay for the ancillary services necessary to participate in clinical trials. The drug manufacturer usually doesn't charge for the drugs, but there are numerous other costs, such as lab work, imaging studies, drugs to counter side effects. Health insurers often don't cover anything associated with a clinical trial because they deem it "experimental." These are but a few of the issues we are wrestling with.

So we'll just let this percolate for awhile, get more information, and trust that things will work out, as they always do.

Love to all,

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