Saturday, January 31, 2009

The second BB consult...

I had to be relatively (for me, anyhow) brief last night because I was exhausted, but I wanted at least to post that I was low-risk for Total Therapy.

So now, the consult with BB. He came in in tight jeans, cowboy boots, and a black nylon motorcycle jacket, lighter weight than the leather one because it had finally warmed up a little down there.

He calls me Herr van Dyk and his Dutch accent on van Dyk is impeccable. When I was little, my father used to tell me stories that the Dutch resistance during World War II had a password (schaeffeningen -- sp?) which native Dutchmen would pronounce without a problem. Germans would miss a nuance in pronunciation that would give them away. I'm sure BB would have passed this test. He told me the other day that he grew up in West Germany just 30 miles from Holland and he would visit there several months out of the year, so that explains his facility with the language. The only Dutch I know definitively is a few choice words I picked up from my dad when I was very young and let's just say they belong somewhere on the list of things I could have screamed at my tormentors the other day. Not suitable for polite conversation.

Anyhow, BB came in, and took a few seconds to confirm that we were low-risk, which by this point was fine, but confirm he did. I presented him with the book, and he was very gracious. I said it was something for his coffee table, and he said "I don't have a coffee table...I only have a bar!" and here he bent back his head and cackled once and then beamed at Jill with a wink. I am utterly convinced that Anthony Hopkins' character in Dracula is being channeled. Hopkins, it is rumored, told the director Francis Coppola that he would only be in the movie if Van Helsing could have a large dueling scar, walk with a prominent limp, and be played equal parts genius and eccentric.

We found out a lot of interesting things about my chromosome analysis / gene array. First, my "risk score" assessed from the workup of 70-genes was 0.1389. The cut-off for low vs. high risk is 0.66. I don't know if this scale is linear, logarithmic, an "S-curve" or what...but I do know that 0.1389 is closer to 0 than it is to 0.66 so I feel like I'm not just somewhat low-risk, I am very low-risk. So far, so good.

Second, BB asked for a cellular analysis of 40 cells, rather than the usual 20. This was because the workup at Cedar-Sinai indicated a second clone, which was troubling, and he wanted to double check. In his 40 cell workup, which was given special attention by the doctors who review such things, I had NO SECOND CLONE and NO CHROMOSOME 1 ABNORMALITY. The rest of it was largely the same. I'm not sure why where would be a discrepancy and that alone is somewhat troubling, but between the two I'm going to trust BB's clinic because (1) they do more MM workups than anyplace in the world, (2) they reviewed twice as many cells, and (3) they paid special attention to it both because they were looking to confirm both of the previously-noted abnormalities and because BB had prioritized my review.

So now, I asked some questions. I didn't want to trouble him with detailed questions since my intention was to do this in Los Angeles with follow-ups only. But I did ask the ones that I wanted to bottom out. Some of the memorable ones:

ME: "Why do you use thalidomide in induction, given Revlimid's higher efficacy and fewer side-effects? Is it because it's a different drug and you need the kitchen sink?"
BB: "No, it's because Revlimid inhibits stem cell collection. Once we've harvested stem cells, the protocol changes to Revlimid."

ME: "How flexible is the protocol? Can you alter dosage to counteract side-effects or does efficacy depend on sticking to it hard and fast?"
BB: "We have the ability to change doses constantly. We are always aware of potential side-effects and we know precisely what and when to look for it. Additionally, we get new gene analyses on a daily basis and monitor how it responds to treatment."

ME: "Have you seen late-term acute leukemia among your survivors from the Cytoxin and Etoposide?"
BB: "No. We have studied this intensely. It is extremely rare even in much larger doses, and we worked with Dr. So-and-So at Sloan Kettering for some time, but there was no evidence of any of this and we therefore ended the project early because there was no point to it."

ME: "At 550 mg/m2 of cumulative dosage, Doxyrubicin has been associated with cardiac problems. Have you had issues with this, and why use Doxyrubicin instead of Doxil?"
BB: "We avoid any peaking in dosage because our chemo doses are administered through continuous drip over 24 hours. The two arms of Total Therapy represent cumulative dosages of 160 mg and 80 mg, depending on which arm of the study you are in."

ME: "Have you noticed any hearing loss or kidney failure from Cisplatin?"
BB: "No. We use very small doses and this does not occur."

ME: "I believe I read in your writing that mucositis is worse after exposure to etoposide?"
BB: "That isn't an issue. We've looked at it and there's no association."
[ed. note: Is this a rare mistake on the part of your humble author? Actually, I doubt it, but he's allowed to change his mind.]

ME: "Will you be incorporating Carfilzomib, Pomalidomide, HDAC inhibitors, etc. in future therapy?"
BB: "Those may be effective, but frankly Total Therapy is already a cure for low-risk patients. I don't want to change it."

ME: "What is treatment related mortality for someone in my age?"
BB: "Overall treatment related mortality, including people otherwise unhealthy and 75 or even older, is about 5%. The reality is, for someone your age and in your overall health, effectively zero."

ME: "Will you be using Mobozil to mobilize the stem cells?"
BB: "No. I get what we need from the standard drugs. I'm looking at Mobozil because there is some evidence it may round up the myeloma cells and move them to the blood, where they can more easily be attacked and killed. So I am looking at it, but not in the same way."

And perhaps most importantly: "What is your typical program for relapse after treatment?" His answer: "There is no typical program, because relapse is extremely unlikely."

He answered these questions very soberly, without any pretension or false confidence, I thought.

So far, so great. I had one last question for him.

"How much of this can be done here, versus done in Los Angeles with follow-ups in Arkansas, and could I do most of this at City of Hope with SF?"

Here, the upshot was, I would have to do most of this in Arkansas. His argument is compelling:

* This is all we do here. SF is a long-time friend and he is brilliant at stem cell transplants. But his expertise is in lymphoma and leukemia.

* If you do this in Arkansas, we check things daily and know what to look for.

* I am a control freak and can only promise these results if I have the ability to control their outcome.

He thought I would have to do induction and the transplants in Arkansas, and that I could do maintenance therapy and potentially consolidation therapy at City of Hope. This would mean, depending on whether or not I was put on the "regular" or "lite versions", a lot of time in Arkansas:

* On the standard protocol, three weeks in AK, one week home, six weeks in AK, six to twelve weeks home, three weeks in AK, followed by consolidation at City of Hope and recovery in Los Angeles.

* On the "lite" protocol, six weeks in AK, six to twelve weeks home, three weeks in AK, followed by consolidation at City of Hope and recovery in Los Angeles.

Frankly, I think he is one week short on the six week stretches in both because the process of stem cell harvesting could take at least a week.

Also, I would not be able to choose "lite" versus standard, as they are randomized. He did say that he would not randomize if he thought there was any difference in effectiveness between the two.

So now, I have a difficult choice. Obviously, I want to do what is best for my health. But I also love Dr. SF, and would feel better closer to home and as much as I like BB, Dr. SF does strike me as more compassionate. I'll have to think about all of this.

BB dictated his findings with us in the room, as is his style. He mentioned a couple of things, including the fact that they would do another gene array after four days of treatment with Velcade and a mini dose of Melphalan to see how the cells are responding to that treatment, and including the fact that after a full week of induction, they would perform another PET scan and that if all the tumors are gone, this has not yet been published but they have found that this is a powerful predictor of superior complete remission / operational cure.

So far, I have two options which I'm going to ruminate on:

1. Do the lion's share of it in Arkansas, per BB's instruction
2. Do all of it at City of Hope with minimal involvement from BB

Some downsides to doing it at the City of Hope: I'd be on the lite protocol since that is what they are publishing (although I know by now the differences -- two cycles of induction and consolidation rather than one, and 2 days of 200 mg / m2 of melphalan versus 4 days of 70 mg / m2).

Some downsides to doing it in Arkansas: I will not have a choice of lite versus standard -- it will be randomized and I will have to commit to the random trial. Also there are financial, logistical and psychological (separation from the kids) aspects of Arkansas that enter into the equation.

If I had my druthers, I would do induction in Arkansas to take advantage of BB's superior experience and testing expertise, and I would do transplants in LA, since SF is as good with a stem cell transplant as anybody in the country, and by the time of the transplant, the myeloma is gone and we are managing the transplant process, not the tumor elimination. I will see what SF thinks of this approach in a couple of days. I see him on Feb 3rd.

I did explain the needle aspiration was very unpleasant, and he said I didn't need to do another one. This did bother me a little because it meant I didn't need to do the one in the first place -- it's really for the sake of research. Although they will run a similar gene array on it to determine if the myeloma cells, once they have reached critical mass in a tumor, mutate differently. A friend (can't remember which one) said that I need to be mindful that doctors want to cure the disease more than any individual patient. And that does make sense, which is why no matter how much I like these doctors, I will remain an active advocate for my health.

Interestingly, we asked him when I needed treatment. And I said "yesterday, right?" And BB said, contrary to what his panicky nurse had written three weeks ago, "no, it's up to you, but I would start fairly soon."

On the way out of the office, we sought out Typhoid Bonnie and gave her a big hug, telling her we were low risk. She was pleased, and told me that the people who did the needle aspiration had the gall to send over medical notes saying that I "tolerated the procedure well." She said she was demanding they amend that because I had a horrible experience. She said that they noted I had more versed given that day than when I had the gene array and it should have been enough to put down a horse. Well...something is wrong with that. One of Jill's family members noted that Versed is one of the most commonly stolen drugs in a pharmacy so who knows if I was even given a proper dose of Versed. All I know it is was horrible and now I will think twice about Versed in the future -- I'll need to find another way to give me comfort that I'll be out like a light.

She then brought up Dr. CAH "who I just loooove" and I cut her off and told her what happened. She was horrified and near tears. She asked if I'd told BB, because he would be terribly disturbed by it. I said I had not yet, and I'd be weighing what to do but my inclination would be to report him to the AMA.

My concern, of course, is that if I am doing some of my treatment in Arkansas this creep could affect my therapy. So no matter what I do, I'm unlikely to do it until after I'm finished with treatment.

The movie Juno is on the TV: "Doctors are sadists that like to play God and watch lesser people scream." Maybe that explains what happened on Thursday. But on Friday afternoon, everything was good.

I'm going to forget that I have cancer until Tuesday afternoon at City of Hope. So my next update will probably be after that session, and the next big question will be about where to have this done. I have two big questions for BB: (1) can I do the transplants in LA, and (2) if I am on the lite branch and am not in complete remission (let's say I have what they call Very Good Partial Response) after the first induction cycle, can I insist on another cycle of induction? Then I will have many questions about the minutia of various procedures, but I will compile those and ask them of Dr. Caleb Sumthin-or-other. that's the sum total of the Arkansas adventure. Take care, all, and watch for an update sometime next week.