Monday, August 17, 2009

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.


Ingrid said...

Hi Dan,
Hi, my surviving partner, we two, we hold in strongly, don't we?
Just survived a 23 Hypoglicemia being awake and conscious last night at 3 am, I think that is a world record, only that nobody gives me a price for it.

And yes, tiredness is part of our life, isn't it?

But the rest of your post reads almost kind of funny, as if your ironic spirit is back.

Hang in there man, the world seems not ready for us to leave.


John said...

LOL about Wavy Gravy and the Merry Pranksters. Best wishes for admission to a clinical trial.

sigun said...

Dear Dan,

Good news on this blog: your bones are doing OK, and the white blood cells are at 4.9; I remember them being just around 2 not so long ago. That is good news. Now the next hurdle: to get onto a trial. We'll keep our fingers crossed. Bises, Sigun.

Jill said...

I just spent about an hour reading your blog. I've laughed, cried, and feel like I know you just a little. My dad was diagnosed with "advanced, high risk, poor prognosis" lightchain MM in May. WOW, has life changed in just 3 months. He is at City of Hope in CA and they are pushing the SCT after 4 rounds of chemo. We went for a 2nd opinion with Dr. Berenson. He said the exact opposite! He doesn't believe in SCT anymore...wants to continue with the Valcade. Nice. Reminded me a little of your issues with Barlogie and your dr. Here I was thinking of contacting Arkansas to see him for a 3rd opinion. Maybe not now. =) Mayo clinic is looking better.

My dad has changed so much in the last few months - physically, mentally, everything really - it is so frustrating and sad to see. He's not very open about how he's feeling though, so reading what you wrote brings me some of his perspective (at least I'm sure many of your thoughts are similar to his). Props to you for staying strong. My prayers are with you and I look forward to reading about your journey.

Jill in AZ

Jan said...

Dan, really appreciate your blog. I would like to offer a comment to Jill. The old process was to do four rounds and then transplant. Now, the new trend, if possible, is to do the transplant when numbers are at their lowest, in my case that took 9 rounds with three different drugs and the dex(ugh!). I think the MD Anderson study confirmed this line of thought. My best wishes to Dan and to Jill's Dad..and I can tell you Jill, from a patients view, a daughters support means the world.