M.D. Anderson Consults

We've finished our consults with the doctors here at M.D. Anderson and now I just having testing to complete over the next 2 days. We also have a few tests that will be done in Denver (bone marrow biopsy and skeletal survey.) We met with the head of the transplant team (Dr. Giralt) and the head of their myeloma treatment team(Dr. Orlowski). Dr. Orlowski and his father developed velcade. These docs are going to communicate with Dr. Fonseca at Mayo in Scottsdale regarding my case and get his input as well. So, at a minimum I feel I am getting the best advice possible from the best myeloma treatment centers in the country. (Dr. Barlogie, Dr. Rifkin, Dr. Giralt, Dr. Orlowski, and Dr. Fonseca). Unfortunately no one has a silver bullet for this disease. The short term strategy is to add a chemo drug to the prednisone to try to get the cancer levels down. Orlowski recommended revlimid. Giralt talked about pomalidomide and bundamistine (sp?). We'll be discussing this with Giralt by phone on Monday and we see Rifkin on Wednesday. Mid term strategy is to be ready for a mini allo transplant (from one of my brothers) if we get my cancer levels down. It seems that it is very unlikely, given the resistant nature of my myeloma, that any chemo drug would give me remission or even long term nonprogression of my disease. So, we have to consider the mini allo transplant with all its attendant risks.

One of the interesting things Giralt is working on is use of a vaccine as part of the mini allo transplant. They would take some of my myeloma cells, kill them, then inject them into my donor to provoke an immune response before transplanting the donor cells into me. Because the myeloma cells are dead cells, this process presents no additional risk to the donor.

We'll make some decisions next week, I suspect, at least with respect to the short term strategy. That's it from Houston for now.

Dan

Halloween in Houston

A sit down, of sorts, with Rifkin today to discuss the "plan." I had my list of questions that Suz and I put together yesterday. We're booked for 3 days of testing MD Anderson starting Oct. 28th. We'll follow that up with a conference call from Denver the following week to receive their recommendations re treatment. To say we're not looking forward to it would be an understatement. Visions of MRI's, Pet Scans, bone marrow biopsies, etc. in Little Rock haunt me. We're assured MDA is not Little Rock, although we're also told to expect the full workup. Rifkin has already discussed my case with Dr. Giralt at MDA. I say that my conversations and the paperwork from MDA look like they are planning another transplant for me. Rifkin says they will probably recommend a mini allo transplant (from one of my brothers) if we can get my cancer levels down with chemo first. Nothing set with Mayo yet except we're told I don't qualify for the current pomalidomide trial because I did not fail to respond to revlimid. As noted in the previous post, Mayo will be starting another pomalidomide trial, maybe as soon as November, that will not require a revlimid failure to be eligible. So, following the MDA workup, we'll take a trip to Mayo in Scottsdale and at least get on the list for the next trial. Rifkin instructed us that our job at MDA is to learn as much as we can, ask many questions and bring the info back to discuss with him. As he said, these are the people that are running the clinical trials with these new drugs and have the most knowledge about how people respond, side effects, etc. So, I guess I'll put on my best lawyer interrogation hat and try to get that Ph.D. in hematology/oncology.

The idea of a mini allo transplant is disconcerting. Over the years, and with the various doctors and nurses who have treated me, we have heard all points of view. We've heard from both Rifkin and Barlogie that it is very risky and also that it can be a true cure. I guess both statements are true. It seems that Rifkin's goal is to find a treatment for me that will bring my cancer levels down and then deal with the question of whether to take the risk of a mini allo transplant. Since there is no way to prepare for making such decisions, we try to put that issue on the shelf and deal with it if and when we have to. I will say this much: Rifkin has managed to stabilize my disease so that we at least have a chance to participate in a clinical trial and bring down the disease levels. In May and June when I was getting regular transfusions and neupogyn shots I was not very optimistic. An every other day dose of prednisone has done what massive amounts of chemo could not---keep an angry disease at bay. Go figure. Rifkin was clear, however, that this won't hold forever and so now is the time to start treatment.

Final note: counts remain stable and continue to slowly go up. White count: 4.4, hematocrit 28, hemoglobin 9.6, platelets 122. No IGGs to report. The cancer center hasn't yet received its doses of H1N1 vaccine (swine flu) but because Julia is a health worker she will get her vaccination next week and can also get the vaccine for any family member in a high risk group (like me being immunosuppressed). I will be taking advantage of my connections in the health sector!

I'll check in once we return from MDA. Until then, Happy Halloween.
Dan

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,
Dan