Friday, May 22, 2009

Charting A Future Course

My recovery from the beam chemo and transplant continues to go slow, although we are making progress. Typically the patient's white count, red cells, and platelets get close to normal ranges within 45 to 60 days. I'm 50 days from transplant and my blood counts are still quite low. I've needed growth shots to jump start my white count as well as transfusions of red cells and platelets. But, I am producing cells and the time between shots and transfusions is lengthening so my counts will eventually stabilize.

The news on the effectiveness of the chemo and transplant is not great. Even though the cancerous levels of plasma cells was cut by 50 %, my IGGs and M protein are now trending upward, rather than downward. (IGGs at 3670 and M protein at 3.0). So were do we go from here?

We've had a couple of meetings with Dr. Rifkin and he advises that no further treatment can be given until my blood counts recover. Plus, I now have thrush and this full body rash, although both are improving, albeit slowly. I agree with the advice of no treatment at this time as I am just too worn out to handle any treatment at this time. So, the planned return to Little Rock on June 3rd is not going to happen. Susan and Julia will be flying back to Little Rock next week to pack up and drive the car back.

I have told Rifkin I want to continue with further treatment here in Denver, rather than Little Rock. My myeloma has become very drug resistant. I have received almost every drug available over the past 4 months and we've made some but not great progress. Because my cancer levels are still fairly high, another transplant is not an option. Only when the cancer levels are reduced can we explore another transplant--and that will probably involve use of one of my brother's stem cells (called a mini allo transplant). I have asked Rifkin to collaborate with Barlogie and discuss what drugs, if any, might work to bring down my myeloma levels and to come up with a plan. Rifkin's approach is one step at a time: first, get my blood counts stable; next perhaps give me steroids every other day to try to hold the IGGs stable; third, come up with a treatment plan to bring down the cancer levels (this is the challenging part given the few drugs, if any, that might work that I haven't already had and thus developed resistance to.)

These are tough times, but as Rifkin said to me earlier this week, "you're a tough guy". So we proceed, one step at a time. And it will be so much better to be going through this while at home. We have navigated rough waters before and I am confident we can do it again. We are also mindful of the fact that we couldn't have done it without all of your support, for which we are very grateful.
Much love to all of you,


Seal Family said...

Dan and Susan. We send our love and all the support we can give. You all are strong and tough! Love Greg, Doroth and Rebecca

Ingrid said...

And,.... have you talked also to Dr. Barlogie to hear what his opinion to Dr. Rifkin's plan is ??? Whether HE agrees to this plan, sounding a little bit less horrible given the possibility to stay at home.
I can imagine how exhausted you must be at this point, but we were told that Little Rock was no holiday.
If I was you, I would want to hear also Barlogie AGAIN and make sure, that those two columns of myeloma therapie DO agree on the same treatment at this point.
I would want to be sure, that the hell given in Little Rock, might not be the final paradise giving remission.
I wish I could be there and help, if only by standing in line at Target to get your medications, while Susan could assist you at home, and last not least, prepare you some Lasagne.

Due to the rush, this time I send you only a soft hug, but lots of flying kisses, they should not hurt.

Nick said...

You're leaving us here by ourselves?!?!?!? :)

Dan, you and your family remain in our prayers. It's none of my business but I agree with Ingrid's comments -- hopefully Bart and Rifkin can come to a consensus. Also, you probably already know this but there are trials of a next-gen Velcade that is highly effective (evidently) in Myeloma that is resistant to Velcade. I believe the drug is Carfilzomib (Velcade is Bortezomib). I'm not sure where these trials are being done, but I heard about them from Dr. Jagannath at St. Vincent's in New York (he spoke about them on a conference call hosted by the Multiple Myeloma Research Foundation). Similarly, there is a next-gen Revlimid called, I believe, Pomalidomide (trial drug name is CC-4047). This appears to be highly effective in Revlimid and Thalidomide-resistant Myeloma. CC-4047 has fewer side effects than Revlimid, which it itself supposed to be very easy to tolerate.

My point being, new drugs are being developed as we speak and they could make a very significant difference for you. Do not lose heart. I know you've been dealing with this for a long time but you do not need to yield to this crummy disease!

Whether it be here, in Denver, or Los Angeles, Jill and I do hope to see you and Susan soon, and find you (and me) in good health. Depending on when Susan gets back out here to pack up, I may or may not be neutropenic but if it is early in the week, Jill and I would love to see her if she feels like grabbing a glass of wine!

Be well, my friend. DO NOT YIELD. You're stronger than Myeloma.



tim's wife said...

To add to what Nick has said, Tim's doc, who has over 30 clinical trials running, has been blown away
by voronistat. He has several patients who were resistant to everything and are now doing well again with the Voronistat. I believe also that full allos do not rely as much on having super low markers going in. They also tend to have a lower relapse rate
than mini-allos.
Just throwing this out there.