The latest

Saw Dr. Kipps on Tuesdays, the only day he pretty much sees patients. I had some CLL friends in San Diego who were very nice and ferried me around a bit, picked me up from the Cancer Center and helped me get around. Also, they took me out to dinner at a place called Milton's. It's a Jewish-style restaurant in La Jolla. It was very good; the pastrami was excellent. I had a soda called Dr. Jones (I think) and it's apparently a NY classic that you just can't get many places. It was good and made me feel a bit of a connection to NY, which I've been to exactly one time (to see an herbalist who cured one man of CLL, though no one else, to my knowledge).

Dr. Kipps is worried about me, since my counts are still in the tank. He suspects something else is going on. He wants me to start treatment again, giving me four different trial consent documents. Combined with re-doing flavopiridol or Cal-101 at Stanford, that makes six different protocols. That's if my beaten-up marrow has not transformed. He seemed pretty worried, and gave me a hug.

The bone marrow biopsy was pretty painful, even with the percocet I insist upon. (That was a problem in itself; Dr. Kipps apparently forgot to send the prescription over, so his nurse had to track down this busy man, and get him to write a script.)

So I am now waiting and worrying over what this latest biopsy will show. He said my last biopsy in May was fairly normal, and he doesn't understand why my counts are so terribly low (especially the white blood count) when the marrow looks OK.

There may be something else going on...

My Marrow has been "Chewed Up" by FCR

I saw a CLL doctor for yet another opinion, this time a doc at Stanford. We discussed my situation, especially in light of Dr. Kipps' recommendation that I start a search for a donor for a much-feared stem cell transplant (the survival figures are not as high as I'd like).

I had to wait over an hour to see him, which seems to be par for the course for busy CLL types. I gave a brief rundown of my history, and the fact that I've had four treatments; HDMP+R, ISF-35 (direct nodal injection), the idiotic FCR, and flavopiridol. According to his labs, the slight improvement in my numbers noted at UC Davis has disappeared, but I think some of that can be ascribed to different labs. I like Davis' lab, because I always have better numbers there.

He said there were two drugs in trials at Stanford that he likes for CLL: Cal-101 and another drug that he didn't even mention the name/number of. Something like PCI something or another. I'd pass the name along, but he didn't pass it along to me. (Searching the web I do find two candidates: PCI-32765 & PCI-45292, both Bruton's Tyrosine Kinase inhibitors.)

We then talked about why my marrow has never recovered. The doc said my marrow was 'chewed up' by FCR. I asked if there was anything I could do to make it better. He said, 'no'. He also said, 'they never mention that when they publish glowing reports about FCR.'

So, in addition to a heightened risk for Richter's tranformation, and myelodysplastic syndrome, our non-friend FCR can 'chew up' your marrow. Wonderful. Apparently, FCR has left me with a permanently scarred and chewed up marrow. Sweet!

The doc is going to send me the protocol for Cal-101, which he seems to like a lot. It apparently doesn't give many people a complete remission, but it does help shrink swollen lymph nodes.

Besides my chewed up and spit out marrow, the abdominal nodes may or may not be making a comeback, so this might work well. We will see. I see Dr. Kipps soon as well. And, joy, I get another bone marrow biopsy! That will make number 16. I wonder what the record is? I wonder if I have any marrow left in my hip after all of the sucking and drilling?

Holding my own, but problems may be ahead

I saw Dr. Kipps in mid-August. He was harried as usual; I had to wait an hour and a half. I don't know why he gets so backed up; I suppose it's partly because they fit people in as the need arises.

He started out by telling me my May bone marrow biopsy was good. I had a nodular partial remission, which is better than a partial remission. I still have CLL cells in me, but they are not so widespread. So the flavopiridol worked quite well. He was happy with my performance and over-all activity level.

However, he became concerned when he saw my blood numbers. They still haven't recovered from the FCR two years ago. He seemed disturbed by the numbers. He wants me to come back in September for yet ANOTHER bone marrow biopsy. My pelvis is more holes than bone, now, I think. This will make number 16 I believe. I'm a pin cushion.

He also mentioned that he wants to start a search for a stem cell donor.

As you can imagine, this was extremely disturbing news. I was certainly prepared to re-do flavopiridol if the drug company would allow retreatment (another 13-14 months of decent quality of life sounds EXCELLENT to me!!!). I suspect he thinks that things have gotten past that now.

It's all due to the FCR in my mind. My counts are still way low, and have never come back up.

The transplant, of course, it a sure death sentence. Few people my age make it more than a couple of years. No one I know, even through the internet, has survived more than five years. It's a terrible procedure that over-all, doesn't work. Up to 40% of patients don't even get out of the hospital. It takes a full-time commitment by a caregiver, and my 'caregiver' has a chronic disease herself.

Since I live in Northern California, I'm going to get a second opinion at Stanford. They have a decent CLL practice there, and they also do transplants.

A transplant is a last-ditch effort to keep you alive for a few more years. It just depends on how much agony (graft-v-host disease) you want to endure, and how your cancer responds to the graft. It also depends upon getting your disease down to a low point, at least a complete remission.

Getting to that point would present a problem; I've never had a complete remission in this disease.

Bad news all-around. This may be my last Christmas (if I make it that far).

OTOH, no one is guaranteed anything on this planet. It's just bad timing. Treatments for CLL are really getting a lot better, and promise to get better all the time. Just not soon enough for those of us with intractable cancer.