Let's Get One Thing Straight

A number of people have suggested that my decision not to return to Arkansas, but to continue with further treatment here in Denver, might reflect that I'm quitting. NOT SO. There is no quit in me. Have we (you) forgotten the 15 vertebral compression fractures, 2 back surgeries, prostate cancer, stem cell transplant, etc? It took one year to find an effective chemo regime. We have made a variety of very difficult decisions regarding my treatment, including the decision to go to Arkansas for treatment. So why have I decided not to return?

The initial plan was to go to Arkansas for a double auto (my own cells) transplant. My cancer took this opportunity to get very aggressive and the initial plan had to be scuttled for much more aggressive treatment, concluding with the heaviest chemo regime one can get for this disease (the super beam plus--9 chemos in high dose). That was only marginally successful and the IGGs are now on the rise again. Because the super beam can only be given to a patient once in his lifetime, due to the risk of pulmonary disease, another auto transplant is not viable at this time. The only other type of transplant is a mini allo (using one of brother's stem cells). I am very fortunate that I have brothers that match the 10 important antigens. But there are increased risks with this type of transplant because you are being given someone else's stem cells--not unlike any other organ transplant. In addition, for this type of transplant to be effective, my cancer levels must be considerably lower than they are now. That will have to be accomplished through some drug regime. Since I have had most of the potentially effective chemo drugs, finding a new effective drug is the first major challenge.

In this regard I do not perceive much difference between Barlogie or Rifkin as the treating doctor. While they both know what drugs are currently available as well as clinical trials that are being conducted, unfortunately neither knows for sure whether any of those drugs will work on me. Hit or miss/trial and error? Call it what you will, I'll continue to be the guinea pig. In addition, Barlogie isn't very fond of mini allo transplants and one time told me "We don't do those." In fact, they do, but not frequently. On the other hand, Rifkin has just completed a clinical trial of mini allo transplants, the results of which are not yet published, but the inside word being that all patients are doing well at two years post transplant. So, this guinea pig thinks he will do best in his own home environment, with his family and friends around, and the chance to be living some semblance of life while going through this next phase of treatment. In that regard, I've already attended my first CTLA officer meeting, and am considering whether I can conduct a few half day mediations starting in late June or July. Life must go on.

A long winded way of saying there is no giving up in me. I still have too much to do. And with that, I think I'll take a spin on my bike.
Love,
Dan

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,
Dan

It Don't Come Easy

"Got to pay your dues if you want to sing the blues, and you know it don't come easy." (Ringo Starr). That lyric is what comes to mind as I think about our first 10 days back. Monday's visit to the clinic came with the surprise of a plummeting white count and low red blood cells. Troubling enough numbers that, even though I was not scheduled to see Dr. Rifkin, the nurse went and got him. He didn't seem unduly phased by my condition, attributing it to the heavy chemo I've received and saying he's seen it before, calling it "classic Arkansas slow recovery". So I've had daily visits to the clinic this week, multiple transfusions, and resuming growth shots to boost the white count. A full body rash appeared on Tuesday and we've been dealing with that. Other than all that, it's still great to be back home. The temperate weather and sunny skies lift my spirits and are everything I missed while in Little Rock.

Julia graduates from Colorado College on Monday. She'll be getting a degree in public health. She's had a great experience at CC and I know she will miss it. She will be working as an intern at the Colorado Dept. of Health for the summer (paid internship), so she's already gaining experience in her field. I guess she's now on her way. To where, we don't know.

Even though I don't get out much due to the low white count and fatigue, it still feels so good to be home. Thank you everyone for all you did for us and continue to do for us.
Dan

Home

We arrived back in Denver Wednesday night. Hallaluha! The last 2 days have been beautiful Colorado days: sunny, blue skies, temp in the 70's. Everything I missed about the Colorado climate was here to enjoy. Getting "discharged" from the Myeloma Center took some work, but when a nurse suggested that the doctor was running late and I might have to wait an extra day I went into action, resulting in another 8 hour day there running to and fro, but finally getting discharged at 6 p.m. on Tuesday.

So now what? I'm exhausted and have about 2 to 3 hours of energy to engage in conversation or low key activity, then I seem to start fading. I've lost 40 pounds, mostly muscle (yes I had some) and so I'm plotting how to gain some strength. Right now walking twice a day plus multiple trips up the 4 flights of stairs in our house are my exercise regime.

We have to visit the clinic twice a week to have my blood tested and sent to Little Rock. They will be monitoring my cancer levels. We could be home for as long as a month provided my "numbers" don't start running amuck. Then back to Little Rock for testing and another chemo regime, which hasn't been defined for us yet.

I never expected that I would miss my home and seeing friends as much as I did in Arkansas. Four months of daily trips to the clinic and feeling like my whole world was "treatment" was mind numbing. We felt like we had been yanked out of our lives and plunked in some alternate universe. It is so refreshing just to be back, if nothing else, in proximity of the lives we had been living. I do hope that further treatment can be administered in Denver so we don't have that added burden of being so removed from our very large support group.

So, for now, we are enjoying being home and seeing friends.
Dan