Wednesday, June 4, 2014

Après la chimiothérapie, un tatouage.

The Clinical Trials Nurse called me two days ago and asked if I'd be able to come in this afternoon to discuss options for treatment. I was a little surprised by the urgency, but it was almost as if they'd heard my plea for urgency.

(taps invisible microphone) Is this thing on? 

I was presented with three options for treatment (that would coincide with radiation).

1. Return to the Roche trial. Originally, this was completely off the table. Once the brain mets were found, the folks running the study basically said that I couldn't continue, since a new line of treatment (radiation) was needed. I'm simplifying, but that's the basic gist of it. The nurse and my oncologist escalated the matter and went to the top of the chain, and spoke to the person in charge of the whole trial. In this option, I'd start on the Roche trial again tomorrow (Cycle #7) and stop a few days before radiation - and begin again a couple weeks after. The oncologist would have me scanned frequently to make sure the disease in my lungs and liver stays "quiet" (yes, this is what they called it - QUIET!). As long as things stayed stable and the cancer was controlled, I could do this option for a while.

2. Traditional chemotherapy. This would be a trio (I forget what they are) that is traditionally used for adenocarcinoma patients. Side effects would be greater than with the trial drug (which amounts to next to nothing, honestly). This option is likely to be inevitable, but we don't have to go there yet.

3. LDK + Chemotherapy (the most aggressive). LDK is an ALK responsive medicine that was just recently FDA approved. There is no study data on the toxicity of LDK (erlotinib) in conjunction with IV chemotherapy. This would be the most aggressive option and would most likely make me fairly weak/sick.

As of now we're going with the first option. I had some labs drawn to make sure there are no issues with blood (probably liver enzymes, etc) that would prevent me from starting the drug again (one week since I stopped). I will go tomorrow morning and pick up Cycle #7 and take the first dose. I meet with a neurosurgeon on Friday to discuss radiation and we expect to begin that in the next week or so. Again, radiation is CyberKnife surgery (which is not invasive, despite the words 'knives' and 'surgery' in play).

Scans will be within 8 weeks of the trial starting again, and my continuance on it will depend on how well the trial drug continues to control the cancer. The spot I am having biopsied on Tuesday was there on the previous scan, it's just "lighting up" more now, and they want to see if there's been another mutation (possibly EGFR), a new ALK "clone" that just happens to be resistant to the new drug, or something else.

From day one, the people at Seidman have had my back. There were times that seemed grim, and they stood by me. They really went to bat for me with this trial drug, explaining to the facilitators that I really had been responding well to the drug - the fact that they went so far for me is very touching and gives me a lot of hope.

As of today I am still technically between treatments, so I decided to go with a friend of mine and have a "procedure" done off-campus.

OH-IO!! Just kidding. I just love Ohio.


So there it is, I hopped over to Voodoo Monkey Tattoo in Ohio City and had this done. My blood levels are good and I got the OK from my doctor - so I went for it. I don't know when I'll be able to have a tattoo again, so I wanted to make the most of my chance! I was born in Ohio, and it will always be a part of me - even if I'm someplace else. It's pretty sore right now, and sleeping may be interesting but we'll work it out!

That's it for now.

1 comment:

  1. So glad that Dr. Feng and the other staff at Seidman are on top of things for you!

    ReplyDelete