Going To The Mountain

Summary

Today my cancer center, Space Coast Cancer Center, a Moffitt affiliate, held a Lymphoma seminar. One doctor from Moffitt, three from SCCC, and a hospital head Chaplin spoke. The Moffitt doctor, Dr. Bijal Shah, is one of Dr. Sotomayor's research scientists specializing in MCL. He gave a very informative presentation, modified due to our communications last week; he and I and Dr. Levine consulted together for about 15 minutes; and then he and I spoke for almost 45. As a result, Dr. Levin is going to modify my treatments to align with next year's protocols. This is mostly in the area of increasing safety/reducing risk of side effects, but also includes a major improvement in my future, overall treatment plan. Thanks to Linda Bradley for sponsoring, Shannon Simmons from SCCC for setting it up, and Dr. Levine for just being him.

Three Pages of Notes and One Page of Conversation

I'm skipping a LOT of very scientific stuff. Please email me if you want that part and I'll try to decipher my notes.

Dr. Shah studied Neuroscience, Zoology and Religion at UF; Pediatrics at Duke; and Oncology at Moffitt. He is now a full time Principle Investigator/Researcher. He is very young, very pleasant, very conversational, and VERY smart.

He has one patient with MCL, still going after 15 years. This is 5x the median survival. All the presentations I saw now talk about three stages or types of cancer, not the old two types. They've added an "intermediate" type between Indolent and Aggressive. MCL usually falls more between Indolent and Intermediate, making it hard to treat. Indolent cancers just grind along, and since they are slow growing, don't respond well to chemo. There is no "standard of care" for MCL, it's all experimental. (Note: Insurance companies DO have an SOC, even if the researchers don't).

Indolent MCL has a median survival of 150 months. When it turns to Intermediate, that falls into the 5 to 8 year range. There is no good indicator to predict when someone's indolent might turn on, becoming intermediate or aggressive. However, something called the HDAC11 protein is a possible indicator, and he analyzes this on all his first time MCL patients to see if he gets a clue. HDAC11 inhibitors are the next great frontier in MCL treatments.

Rituxan, the miracle monoclonal artificial antibody, doesn't work for indolent MCL. Which I don't have anyway.

He sees autologous transplants as really not a transplant at all. It's a way to give someone maximum chemo, then recover quickly from not having an immune system. I always said it was like reverting your computer to factory settings, turns out that's a pretty good analogy.

80% of people make it 8 years with RCHOP + auto transplant before relapse. I only went 6.

Current research shows people who get continuous maintenance Rituxan after RCHOP do exactly as well as RCHOP plus auto transplant, 80% at 8 years. So why do the transplant at all?

Well, something called Rituxan Fatigue is real and two sided. First, people get tired of going to a sad place full of dying people, being drugged and poked every two months for years. It wears on your psyche. Second, your body does eventually break down under the Rituxan, and your white blood cells get trashed. Some people can go longer, some less, but sooner or later this becomes a real factor.

He is an expert in the vaccination technique. It's not available for me this time, as trials won't be available for months as they're in an evaluation period. How it works is they take your cancer cells, irradiate them, and reinject them. Somehow this teaches your body to fight the cancer, and increases the duration of first, second and even third remissions almost double. This is a strong candidate for me next time I relapse.

An item of good news. The "transplants must be done by 65" rule is bogus. It depends totally on your health, not on age. 

He and Dr. Levine talked about what risks I might have, given my "unique" treatment background. One is that my kidneys could get clogged with dead cancer cells, since Bendamustine kicks serious cancer butt. He's putting me on a kidney unclogging drug I can't remember the name of. Second, he's has a number of patients recur with shingles. I had this, and it sucks. So that means an antiviral medicine. Third, infections. So I get an antibiotic, and an anti-parasite  drug. This covers every problem Dr. Shah has seen in any of his patients.

What Does This Mean For Kevin?

First, he's VERY sure the Bendamustine/Rituxan combo will put me solidly back in remission, and the Rituxan maintenance will keep me there a good long time. Yeah Science!

Second, my risk of nasty infections or shingles will be less, ditto kidney damage. All because I went to a seminar and got my doc with a wizard, to talk in the back of a hotel ballroom.

Third, by the time I fall back out of remission, either vaccine therapy, or HDAC11 inhibitors, or one of a bunch of other promising treatments will be on line.

Fourth, this guy wants to keep talking to me, and seems open to very responsive communications, not the usual "talk to my nurse" mentality.

This means: 18 weeks of not-too-bad treatments, low side effects, low risk. Every other month I get a not-too-bad IV with no side effects. In 3 to xxx years I do something else. While talking to The Man Behind The Curtain.

I can live with this. 

Literally.

KB