Holding Steady

Not much change in "the numbers" from last week. IGGs are 3500 (3470 last week); white count 2.8, down from 3.9 (but the more important neutrafils are 2.4--a good number), red count and platelets a bit down from last week. Rifkin thinks the steroids are keeping me in some sort of holding pattern, which in his view is good, as it is giving my bone marrow more time to heal. He prefers to keep me off any treatment (other than steroids) for as long as possible. He also is not currently too fond of either of Dr. Barlogie's suggestions (carfilzomib and pomalidomide) as they both have myelosuppressive characteristics, meaning they can drive down the white and red cells and platelets. Since mine are down already, he doesn't want to harm them any more. I'm also unlikely to qualify for the carfilzomib trial because of my extensive chemo treatment. No word on whether I'm eligible for the pomalidomide trial.

We had a rather sobering conversation about his view that I likely have suffered permanent injury to my bone marrow from the Arkansas chemo regimes and that injury has limited my treatment options. I've discussed this "bet the company" approach in previous posts so I won't repeat it here. On the drive home I felt forced to review with Susan one more time our discussion with Dr. B regarding whether the "super beam plus" chemo would limit my future treatment and she, like me, remembers him being very clear that I would not have any future limitations, other than I could not ever again receive the "super beam" treatment. It's difficult not to get angry about this situation, but I know it is not healthy to go to that place in my mind, so I'm getting pretty good at staying away from it, until it comes up in my treatment discussions with Rifkin. Please understand that Rifkin does not volunteer his views, but offers them only after much pushing, prodding and questioning by me. I'm always trying to find out what new drugs are on the horizon and might be available to me, and I keep running into these barriers created by the Arkansas experience, like your bone marrow can't withstand that kind of treatment. The picture has changed signficantly since the "super beam", and needless to say that becomes very frustrating. Catherine went ballistic last night when she learned the extent of the problem and the limits to what can be done for me now.


That being said, let me say that I continue to be the optimist. I certainly feel better than I did 4 months ago, although I feel like I've reached a plateau of sorts, i.e., I'm not getting any worse, but my efforts at restoring my strength and muscle only seem to keep me treading water. I think this is due to the muscle wasting feature of the steroids. At some point we'll have to start trying to reduce the cancer levels. When that decision is made there are 2 potential drugs that aren't myelosuppressive--thalidomide and HSP-90. Thalidomide is available, HSP-90 is not currently available. HSP-90 is a better drug since it has very few, if any, side effects, but apparently the manufacturer didn't make enough of it to produce more after the completion of the clinical trials.



A few weeks ago I completed my "service" as president of the Colorado Trial Lawyers Ass'n and am now officially a past president. Although I tried to resign 3 times over the past 5 years (all of which were rejected by my fellow officers), and I only served as president for a couple of meetings, the association was extremely generous in thanking me for my service and bestowed its thanks to me in the form of a new, lighter bike. I am completely undeserving of such thanks, but am so proud to have been able to serve as president, even if for only a short amount of time. Our many trial lawyer friends have been so generous and supportive. I do wish the American public would hear more of these kinds of stories, showing what big hearts trial lawyers have, instead of the lawyer bashing that seems so popular these days. This comment is certainly not intended to diminish all the support we have received from our family and nonlawyer friends. My point is only that as a group, the trial lawyers have come forth to assist one of their own, even though, for many of them, I may have been more of a professional acquaintenance than a close friend. Of course, now they are all my close friends.

The best news of the week? Rifkin gave me a 2 week break from my clinic visits. No sticks, pokes, or blood draws!
With much gratitude and love,
Dan

On the Road Again?

Eight months of my cancer levels running between 50% and 90% and my bone density is normal! Amazing. Is this one of those....if it sounds too good to be true? Well, we won't have a retest on the bone density scan for some time, so absent some unexplained bone breaks, we'll accept the news as good. Maybe I should have realized my bones were OK when I fell out of bed in the middle of the night a few weeks ago, and although I had a bump on my head and a bruise on my back, no bones broke. Of course, I'm so zonked from the meds I take at night for my neuropathies that I have only a hazy memory of Susan trying to get me off the floor. The scan was much less painful.

Blood work today continues in the stable range. White count up to 4.9, red cells holding and platelets at 109. Slowly we move, but in the right direction. I continue to have to take exjade to draw the iron out of my liver but that is giving my GI tract fits, especially when I have to take it with potassium, which I've had to do for the last week. Suffice to say I can't stray very far from the house.

We talked with Rifkin today about the two drugs recommended by Barlogie: carfilzomib and pomalidomide. Both are in phase II clinical trials. Therefore, I have to qualify for the trial protocol. Rifkin doesn't think I can qualify for the carfilzomib trial. He sent some emails to friends of his at Mayo (in Scottsdale, AZ) and MD Anderson (in Houston) to see if I could get into the clinical trials they are running with pomalidomide. He's also meeting with the manufacturer's (Celegene) regional rep this week to discuss what trials I might qualify for. Anyway, I'm still not ready to enroll as my bone marrow is not yet fully recovered. I asked Rifkin if I am accepted into a trial does that mean I have to take up residence there. He said I'd probably have to go there, but not take up residence. He might even be able to get me permission to join the trial and be supervised by him here in Denver. Who would have predicted that my myeloma would bring with it a tour of the country? I think Susan and I should buy a big old school bus, paint it in psychedelic day glow paint and hit the road, stopping at all the medical centers in the country. Remember the Merry Pranksters? Wavy Gravy? The only difference is that my drugs are legal!! Oh, what a strange trip it's been. If you don't know what I'm talking about, you're just too damn young.

In the meantime life continues at its slow pace. My fatigue seems to be increasing and I'm back to 2 hour naps every day. I've been so tired lately that I was sure I would need a transfusion today, but red count has held. Then I remembered that following the first transplant I was exhausted for almost a year, and I didn't have nearly as much chemo as I did this time. The fatigue comes in waves, so I guess I'll just keep riding it.

That's all for now. This blog continues to get 50 to 70 visitors a day. Thank you every one of you for your support. We are very grateful.
Love,
Dan

Ruminations on 'Roids

1:00 a.m. Can't sleep once again, despite more drugs that should be knocking me out (Lunesta, neurontin, ativan). Rifkin told me that after a while the ups and downs from the roids would even out. I haven't noticed. Bone density scan today. Lots of walking around the hospital looking for the scanning room (I located it with the name "Women's Imaging Clinic." There were no images of women that I could see. I guess women's imaging refers to women's issues with osteoporosis). All the walking reminded me of Arkansas, which is not a good memory to revive.

Rifkin is looking for clinical trials to enroll me in for pomalidomide. Based on my research there are trials still recruiting participants, provided I met the eligibility requirements. He thinks it will be easier to get in a pomalidomide trial as opposed to carfilzomib. Still an issue around how hard the drug will be on my white/red counts and platelets. He continues to be very concerned re allowing the bone marrow to recover. Stability in the IGGs also continues. New numbers are 3430, down from 3500, down from 4500 about 3 or 4 weeks ago.

After living in Denver for 30 years, I finally got my first juror summons. Now, there was a time I would do just about anything to be able to sit on a jury. Talked about it with Dr. Rifkin and he said, no go. Too many issues regarding my abillity sit for more than a couple of hours due to my back issues, the need to check my blood chemistry every Monday, and the possibility of transfusions, or testing during the week. I used to pick juries and now I can't even sit on one! How low can one go? Oh well, the odds of my staying on a jury would be quite low anyway.

Susan and I celebrate our 27th anniversary tomorrow. Anyone who reads this blog knows my feelings for her and my deep appreciation for how she has cared for me during the last 4 years. She is special and we work so well together. She rants about this and that (she is a New Yorker after all) and I laugh. Whatever works, right?

I think one or more of my drugs must be kicking in. Maybe I'll get some sleep tonight. Later.
Dan

Carfilzomib or Pomalidomide Anyone?

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

Stable

The visit with Dr. Rifkin today was good, only in that it didn't bring any bad news. The prednisone seems to be helping a bit in keeping the white cells and red cells above critical levels. So, no neupogyn shots and no transfusions this week. Platelets are at 97 (normal being 150). They plummeted to 10 when I first arrived in Denver in May. IGGs have moved from 4500, to 4300, to 4000, to 3850. No significant movement, but holding steady in a downward fashion, which is better than the other way. Rifkin thinks we might see a bit more downward movement in the IGGs in the next 2 to 4 weeks while on the steroids. Then, depending on how I'm doing, he may start me on some thalidomide to see if we can hit those cancer levels. Slow and steady. After 3 weeks on the steroids I can already feel the "muscle wasting effect." The little bit of strength I regained in physical therapy is quickly evaporating. Frustrating. My energy levels are also dropping as I ride the ups and downs of one day on, one day off with the steroids. And then there is the weight gain. Which is good, except that the weight gain is unmanageable. Last go round I put on 50 pounds! And Susan told me I look so good at 170. Oh well, luckily I didn't throw out any of those XXL sizes I bought 3 years ago.

So far no contact from my doctor in Little Rock, despite numerous requests for a phone consult with Rifkin. Go figure. I'll withhold further comment for now.

Have a good week everyone. We're still tickin' along, one foot in front of the other, one day at a time.
Dan