Six month PET shows new activity

[Laralyn]

I had HPV+ SCC in my head and neck in 2012, and was all clear until they discovered the same cancer in my lung toward the end of last year (2015). They weren't sure if it was a distant metastasis (although it has never returned in the original site) or a new primary, so they treated it as a new primary with chemo-radiation (carboplatin + taxol). The three month PET was all clear but the six month PET showed a few new, small nodules in the same lung and possibly a couple in the other lung. Specifically:

 

New right pleural nodularity, for example measuring 20x8 mm posteriorly. The SUV max is 8.0. Additional nodules are seen in the right posterior recess,  with intense FDG activity. New subcentimeter nodules involving the left upper lobe are nonspecific and measure up to 4mm. New nonspecific subcentimeter right cardiophrenic lymph nodes measuring up to 5 mm. These are not FDG-avid. 

 

I start meeting with doctors to discuss options next week. My oncologist would like to enroll me in a clinical trial with PF-06801591 (https://clinicaltrials.gov/ct2/show/NCT02573259). It's apparently similar to Opdivo but would leave Opdivo and Keytruda both open as options afterward. She mentioned that we could try taxotere but since I have neuropathy (had platinum chemo twice) she's reluctant to try that. I'm also changing my diet (going back to keto), taking supplements (cucurmin, etc.) and using cannabis oil. I sent an email to the hospital in Cuba that developed CimaVax to see if they're accepting new patients, since trials haven't started quite yet here in the US.

 

I'd appreciate any other info you can pass along about treatments or clinical trials. Thanks!

[Tom Galli]

Laralyn,

 

Welcome here.  What can I offer on how to decide between conventional treatment or clinical trails?  My experience is dated - 2004 to be exact but we declined a chemotherapy clinical trial and decided on treatment that was the standard of care at the time.  My wife and I spend hours pouring over the literature and also consulted with our general practitioner.  He explained what standard of care meant.  And, it worked, but not for long.  My lung cancer's been very persistent.

 

Here is some information about clinical trials you may find useful: https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/clinical-trials

 

I've read about some scams related to US citizens trying to gain access to the Cuban developed CimaVax, so be careful and do your due diligence. If treatment is administered in Cuba, remember it is a third world country and the living is not easy.

 

I also suffer from chemo induced neuropathy but my doc told me that additional chemo would not add to the damage.  But, everyone is different.

 

I think the choice between trial and conventional comes down what has the best chance to work.  I'm sure you've asked your doctor that question.

 

Stay the course.

 

Tom