Monday means a visit with Dr. Rifkin. White count/red count/platelets all are OK (for me, not the general population). No shots or transfusions this week. Latest IGGs are 3500; M protein is 2.9. Continuing the slow downward drift (IGGs were above 4500 about 3 weeks ago). It feels like things are calming down. I will have a bone density scan this week to see what this nastiness has done to my bones these past several months. I had this test about 3 years ago so we have some baseline to compare it to. Previous scan was quite good, given my 15 compression fractures and broken rib. I'll probably also be started on zometa, a bone hardener. I was on that about 2 or 3 years ago also. It just means longer clinic visits to get the IV dripped into my veins.
As of the meeting today with Rifkin we had not heard from Barlogie, but Rifkin finally emailed him during my visit today and Dr. B replied instantly. He suggested Rifkin look at putting me on one of two new drugs: carfilzomib or pomalidomide. (Does this mean he's no longer trying to blast the MM out of me? Can you hear my sigh of relief?) I know about both of these drugs and have been following their development and clinical trials for a couple of years. Carfilzomib is a proteanase inhibitor, like velcade. Pomalidomide is a derivative of thalidomide. I don't think they are FDA approved yet, only in clinical trials, so I'm wondering how I'll get them or whether I need to enroll in the trials. As I started obsessing on this Susan told me to calm down as she is confident with Barlogie and Rifkin as my docs, they'll find a way to get me the drugs I need. Results from the trials are encouraging, especially carfilzomib for people like me who have had a lot of treatment. Both seem to have some depressive effect on the white and red cell counts so I'm wondering what that means in light of my poorly functioning bone marrow. Until Rifkin determines which way to go I'll stay on the steroids I guess. I feel worn out with them, primarily with this every other day stuff. I was up until 3 a.m. last night. But the blood counts seem to have stabilized and I'll have to admit that a few months ago I wasn't so sure where this was going. (Not that I have any idea now). We're not out of the woods, but we've managed to stay in this holding pattern. In addition to the same old fatigue/neuropathy/back issues, I'm now taking a drug specifically to reduce iron from too many transfusions (X-Jade). This wreaks havoc with my GI tract, as is typical with most drugs I take, it seems.
I invite you medically knowledgeable bloggers to tell me what you know about carfilzomib or pomalidomide. Best to you all. Have a good week.
Dan
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2 comments:
Ouf! as we say in French (pronounced 'ooff' - a sigh of relief). That was a pretty good visit. And two new drugs for you on the horizon. Not bad for a MOnday. Keep it up! Bises, Sigun.
Hi Dan!
Glad that you were able to get BB and Rifkin together on this topic.
I'm not a hematologist / oncologist but I play one on TV and here's what I've gleaned about the two drugs.
Carfilzomib is next-generation Velcade. It is stronger, has shown the ability to succeed in patients with Velcade-resistant disease, and is easy to tolerate. It is still in Phase III clinical trials but BB has been using it in his clinic and I'm sure between his efforts and Rifkin's, you'll be able to get it. Although have your doctors determined that you weren't responding to Velcade? Seems to me you may have been responding but you judged it wasn't work going through the relentless carpet bombing your system was taking from the other drugs?
Pomalidomide is next-generation Revlimid, which itself is next-generation Thalidomide. Revlimid is more effective than Thalidomide and has fewer side effects. It DOES, however, suppress blood counts and makes it difficult to harvest cells, which is why BB doesn't use Revlimid until maintenance. Pomalidomide, similarly, has been shown to be successful in patients whose disease does not respond to Revlimid. It has been in Phase III trials and a lot of work is being done with it at Mayo. If you go to the Myeloma Hope blog that Don keeps on blogger, he has been in a Pomalidomide (aka CC-4047) trial for some time and it has been effective at managing his disease.
The good news is both of these drugs have a track record of succeeding where previous drugs have failed. Especially if you are in "control" rather than "eradicate" mode, they might be just what the doctor ordered.
Take care and keep us posted!!!
Warmly,
Nick (and Jill)
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