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.

Medical Rationing Begins

I HATE to see stories such as this:

Medicare Says No to Stem Cells for MDS
By Charles Bankhead, Staff Writer, MedPage Today
Published: August 06, 2010


WASHINGTON -- Medicare patients with myelodysplastic syndrome (MDS) will receive coverage for allogeneic hematopoietic stem cell transplantation only when participating in qualified clinical trials, the Centers for Medicare and Medicaid Services (CMS) has ruled.

CMS decided against coverage because available evidence "does not demonstrate that the use of allogeneic hematopoietic stem cell transplantation improves health outcomes in Medicare beneficiaries with MDS."

However, the agency also ruled that allogeneic stem cell transplantation is "reasonable and necessary" for MDS through the Coverage with Evidence Development provisions of Medicare regulations. As a result, Medicare beneficiaries can qualify for coverage of therapy provided through clinical trials that meet certain criteria.

CMS will consider only prospective clinical trials that examine allogeneic hematopoietic stem cell transplantation's effect on the outcomes of relapse-free mortality, progression-free survival, relapse, and overall survival. Trials must address one or more aspects of three questions:

* How does transplantation affect outcomes in Medicare patients with MDS as compared with no transplantation?
* How do the International Prognostic Scoring System score, patient age, cytopenias, and comorbidities affect the outcomes?
* What characteristics of treatment facilities predict clinically meaningful improvement in the outcomes?

The complete text of the CMS decision is available at http://www.cms.gov/mcd/viewdecisionmemo.asp?id=238.


NICE in the UK is notorious for denying life-saving drugs to their citizens (one of the latest is Vidaza for myelodysplastic syndrome, which is a side-effect for CLL patients of FCR). This is one of the few drugs that is available for MDS, but because medical care is under the purview of the government, and not private insurance companies, there is real pressure to save money.

This is not a good development. Look for further degradation of the American health care system to 'save government money'.

Things pretty much the same

No real changes to report. I have been a bit bothered by some pain in my duodenum. I found this out when I took a couple of aspirin because of some severe back pain I was having. I hurt my back when I filled my car up with gas. Perhaps a somatic response to the pain of paying $50 for a fill-up.

Anyway, besides the back pain, the pain in my duodenum, and miscellaneous pains elsewhere, more due perhaps to advancing age than the CLL, I have been feeling fairly well. I know that the average remission after flavopiridol (Alvocidib) is only nine months for 11q- folks like myself, so I'm half-way there. (My last treatment was in March.)

Unlike many chemotherapy regimes, most responders respond as well the second time to flavopiridol as they did the first time. I must be frank and tell you that I simply don't look forward to giving another eight months over to feeling fairly rotten two days of the week, four weeks in a row, with a blessed two week holiday after each cycle.

But if it keeps me alive, I would do it again.

And I understand that the treatment pattern has changed in the trial. Now, apparently, they are giving the drug for three weeks in a row, with two weeks off. Well, that's better than nothing!

My personal feeling (which may be totally without foundation) is that they might give flavopiridol once a month as a maintenance dose for those who do respond. The drug, it turns out, does depress the neutrophils, and perhaps the platelets, and the hemoglobin levels. So contrary to what I was given to understand, there is some hematologic effects.

In any case, I will see Dr. Kipps within the month, to see how I am doing. Since I stupidly did FCR, I am at a higher risk for MDS and Richter's transformation.

BTW, I did get a once-over by the dermatologist, and seem to be free from the other scourge of CLL patients, melanoma. I also have a fair number of dysplastic moles from my days as a frequent swimmer, hiker, and all-around pool guy. I love the out-of-doors, but there can be a price to be paid.

Counts holding somewhat steady

A quick post: I've put myself on bi-weekly instead of weekly blood tests. The counts have improved to a certain extent, after the flavopiridol trial I was on last year/this year.

My hemoglobin count has improved to 12.0, after running in the 10s and 11s for the past two and one have years, after the poor decision to do FCR. My white count is now in the normal range, so no more neupogen or neulasta shots, for the time being. My platelets are also in the normal range, the first time in years (albeit low normal). I've been feeling pretty good, with no infections and no major problems.

So, as I've indicated before, flavopiridol (Alvocidib) is a great success for me.

It's not a cure, though. Everyone seems to relapse, and hardly anyone gets a complete remission out of it. My latest bone marrow biopsy shows CLL still present, and my spleen may have increased in size a bit. Nothing, though, that causes me any problems.

The average remission (which is in my case a partial remission) lasts 12 months for most CLL patients, and 9 months for those who have the 11q deletion, which is unfortunately my situation. However, one of the interesting things about Alvocidib is that is almost always works as well upon re-treatment. The treatment lasts eight months, and if I get nine months of remission, I could conceivably get eight plus nine months (17 months) for the first go-around, and another 17 months the second. This means I could perhaps get a total of THREE YEARS of decent health out of Alvocidib! For someone in my condition whose prognosis is regarded as 'grim', I think that qualifies as a miracle of sorts, thought Dr. T.H. probably wouldn't think so.

Anyway, I'm not cured, my CLL is still here, and my misguided use of FCR has made me much more vulnerable to MDS or Richter's, so I'm not out of the woods yet. However, at 12 months and counting after beginning Alvocidib, feeling good enough that CLL isn't pressing on my mind daily, is a great thing.

Would I do Alvocidib again? I'd say the pay-off is worth it.

Alan Sullivan

I've linked to 'Fresh Bilge' at the right side of this page for some time now. I found Alan's blog by searching for other CLL blogs. I'm the type of person who deals with serious and threatening news by trying to gather as much information as I can.

Alan passed away from CLL on July 9, 2010, after an abdominal infection. He lived in South Florida and was cared for by Dr. D, as he called him. The focus of Alan's blog was not CLL; he was a life-long writer, translator, and poet. Fiercely bright and a talented writer, he translated Beowulf and other works. Of late, he was engaged in translating the Psalms into succinct but poetic form, trying to capture not only the sense but the lyricism of these great Biblical works.

He was a gay man, and politically conservative, so that made us alike on one count. He was probably more libertarian in his views (for some reason this is more acceptable to the left than conservatism is) than I am, and he was concerned about the direction of the country, given our seeming inability to deal rationally on the subject of government spending. I think he would agree with the sentiment that government and the taxpayers alike have to start saying 'NO!' to good and caring ideas.

He also was an amateur photographer, geologist, vulcanologist, and meteorologist. He lived in New England, New York, Minnesota, on his boat at sea, and finally on land in South Florida. The clever title of his blog refers to the water that collects at the bottom of most boats. Generally it's a foul mixture of water, diesel oil, and whatever else ends up the the lowest place on a boat. He said that he wanted his blog to be a fresh dose of whatever.

He said he was diagnosed with CLL in 2005. I don't know the course of his disease, or the treatments he pursued, but I do know that he was cursed apparently with an aggressive form of the disease. He chose to deal with the CLL by treating it palliatively; he underwent a round or two of irradiation to his troublesome abdominal nodes, a problem which I am all too familiar. Living with a cantaloupe-sized mass in your gut is annoying at best.

He started spiking fevers a few weeks ago, along with serious and debilitating abdominal pain. Since he posted every day (generally multiple times per day), all of this unfolded in real time. I was bothered by the fact that his fever would routinely top 102 degrees, before abating at some point in the day. Finally, he went to the hospital.

They found that apparently he had had a 'leak' from the bowel into the gut. His body seems to have sealed off the breach. He underwent surgery in early July to find out what was going on. He never left the hospital.

I never met Alan. I did post comments on his blog, and I did give him some unsolicited advice about his CLL. I mentioned clinical trials and flavopiridol. I also liked to tease him about global warming. He didn't believe in man-caused global warming, and he pounced on the news of the fabricated data from East Anglia University as proof that the only warming on the planet was in the fevered minds of the Al Gore crowd.

So, another voice stilled by CLL. So much for the 'good cancer' (an oxymoron if I've ever heard one). Alan was a bright guy with a whole host of opinions on science, politics, and life in general.

As he lay in the hospital, he asked that his blog be shut down, but that his writings serve as his epitaph. The blog is still available. If you are interested, he has a memoir section that speaks of his growing up in the fifties, sixties, seventies and beyond, in a country increasingly dysfunctional, and believing more in fairy-land economics and taxpayer expectations.

He is missed, and, like all of us, cannot be replaced or duplicated. I checked his blog every morning for a dose of wit, volcano postings, and musing on the weather. I'll miss doing that.

Retirement?

I haven't retired yet! I found out that they change the retirement benefit upwards every quarter. The factor is related to your birthday, so as my birthday is in July, I will retire soon. (Because I have been so ill, I've been ready to retire on any day if my disease took a serious turn for the worse. So my wife says she will believe it when she sees that I've signed the paperwork.)

I have a number of reports to get done. Management is so anal-retentive (all woman management now, no men wanted), I have to go through every piece of paper and file it. So part of my day is now spent filing. We used to have secretaries do that, but we now need an analyst to file papers. Not smart nor efficient, but they don't ask me.

I will miss going to work. I like my job researching and writing, and I like most of my co-workers. We have a new set of managers (all women, of course) and they don't care if the work gets done, as long as you follow all the rules to the letter. No making up time (my old manager was great, which was nice since I ran out of sick leave a long time ago, and would have to use vacation time.

Baby boomers highly identify with their jobs. We find our place in the world based upon what we do. So I am not going to really retire. Not the kind of retirement where I'm lazing around the house, watching Judge Judy, bothering my wife. I've already signed up to take some classes, so I will be a part-time student. And I have my rentals to work on. I will just have more flexible management (me)!