Back to Ann Arbor

It's a long way to go for a conversation.  But it was a good conversation to have.  Ann Arbor Cancer Hospital called me and asked that I come down and talk to them about my inclusion of a phase one trial of a new medicine for solid tumors.  The week before, they had requested foundation one testing results from my doctor based on my genomic profile. So Thursday I zipped down to meet with a Dr. Schneider and some of his team.

I like the idea of being part of cutting edge science that is learning how to cure cancer.  I also enjoyed learning about how a drug goes to market.  Dr. Schneider said that this drug was working with my own immune system, "teaching" it to specifically identify cancer genes and attack those cells.  I know from watching "The Emperor of All Maladies" that this is the most promising new horizon for cancer research.  He said I was a good candidate but there were currently no openings and besides, they would not take me off a therapy that was working for one that was experimental.  But people are removed from and added to studies all the time and I should stay in touch and let them know if at any time my current therapy was no longer reducing my tumor.  It is great to have this as a back up!

They left me with a packet explaining in great detail the nature of the study, what could be expected, and everyone's rights and responsibilities.  I learned that this drug was tested with monkeys so this group would be the first human trials.  They saw promising results with the monkey tests and it also helped them with estimating dosing and predicting side effects; primarily raised blood pressure and bleeding in the digestive system in patients with bowel tumors.

It's all a bit anticlimactic and ideally I would not need to resort to a trial for some time.  My next CT scan will be on May 1 and so I will know more a few days after that.

C Stories

This week is a "rest" week after my first cycle (3 weeks of once-a-week infusion) of Paclitaxel.  Early signs are very good.  First, I have zero side effects that I am aware of.  No nausea, no appetite loss, and no hair loss (though I'm told that will come).  And second, the pain jabs in my liver and my gut pain in general have mostly ceased.  I still have gut pain following eating but that has been consistent for a long time.  If the body truly knows, cancer is being killed.  I met with Dr. Krajewski yesterday and we decided to do another 3-week cycle with just Paclitaxel.  We can always add Ramucirumab down the line or try it by itself after Paclitaxel fails.  I'll get another scan in 4 weeks to see if it is working like I think it is.

Two disclaimers:

1. I started using Turkey Tail supplements at the same time that I started this chemotherapy regimen.  My brother, Rob, sent me these dried mushroom capsules that are known to boost the immune system in conjunction with chemotherapy for breast cancer.  I should have waited a month or two so I would have a quasi-scientific comparison.  But these might be a factor in my positive results.
2. I had a blood transfusion.  Sometime after my first cycle, my hemoglobin levels took a dive again.  They decided to give me 2 units of blood this time.  It was a weird experience.  I felt like a vampire.  Particularly in that I felt great afterwards.  I had no idea that I had been dragging so badly.  My latest blood tests show normal levels in all the blood elements.

 

A news story that caught my eye was a followup on "Cassandra", the teenager from Connecticut who was forced, against her will, by the state to undergo chemotherapy for her curable lymphoma.  Well apparently she is kind of glad that her cancer is now in remission.  She indicated that the chemo was not so bad.  Maybe the state was right this time.

I've also been watching the new 6-hour, 3-part documentary, The Emperor of all Maladies, on PBS.  It is really quite excellent.  I particularly liked the first 2-hour episode which focused on the history of trying to understand and fight cancer.  It is a film by Barak Goodman based on the book of the same title by Siddhartha Mukherjee and "presented" by Ken Burns in his engaging style of filmmaking and writing.  Six hours is a lot of time to spend on such a dark topic but it is a good way to get up to speed on where we have been and where we are going; what cancer is and what it is not.  I have not yet seen the third episode (premiering tonight) but if you can spend just two hours, watch episode one, Magic Bullets, which will make you feel like a bit of an expert on the basics.  You can watch it on line at that link.

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ADDENDUM

Hair started falling out today.  Should have knocked wood yesterday when I wrote that thing about not losing any hair!

Also, I watched part 3 of "The Emperor of All Maladies" and it was excellent.  Shows where cancer research is going.  The first part of the episode discussed "palliative  care" which is sobering but of great interest to me as that is the type of care I am receiving.  But it went on to talk about the genome research.  All cancer is caused by gene mutation.  About 50% of the cancers are linked to an outside force that causes gene mutation (smoking, viruses, obesity, radiation, chemicals, etc.) and about 50% have an unknown cause.  The first 50% can be affected by behavior changes and prevention.  There are lots of promising developments in gene therapy and teaching the immune system to attack cancer cells.