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!

I haven't posted a lot (just in the Introduce Yourself section) but I wanted to share this in case it gives hope to someone just diagnosed or going through treatments. I was diagnosed with Stage IIIb SCC, with a very large mass (5x6cm) in my right lung and affected lymph nodes all the way up to my collarbone. I had 7 weeks of chemo-radiation (IMRT, carbo+taxol), and I just got the results of the first PET scan (3 months post-treatment). There were a few spots to watch--some lit areas on the PET and ground glass opacity sections on the CT--but both the radiologist and my radiation oncologist believe those are inflammation from the radiation. The official results at this point are that there's no longer any sign of active cancer anywhere in my body. I strongly suspect the fact that the cancer was HPV+ played a role in its response--my previous tonsil cancer was also HPV+ and it also responded very well to chemo-radiation. If you have a previous history of HPV+ cancer, I highly recommend you ask for them to test any later cancers for HPV. I'm still processing the results because while I was optimistic, I wasn't THAT optimistic. It's a good example of why the median isn't the message. Here's hoping my CT scan in 3 months has similar results!

Thanks, Cindy! I debated whether to send my information to LifeLine but I tend to be fairly shy so I hesitated. Tom, it's funny that you should post The Median Isn't The Message. I blogged as I went through head and neck cancer treatments in 2012 and that was one of the first things I blogged about! Yet somehow I lost track of the spirit of that article in the intervening time. Thank you for reminding me of it--it was timely, since my consolidation chemo starts tomorrow and I've had some anxiety about it.

Hi, Donna and Tom! Thanks for the welcome! Donna, we don't have many friends and no family where we live, so it's just me and my spouse going through this. Our friends and family are very supportive remotely, though, which does help. Tom, it's great to know the Carboplatin and Taxol worked for you! I'm hoping it works for me too. I have some anxiety about the consolidation chemo treatments (which start in two days) because I haven't ever had a full chemo dose. Both times I had chemo (in 2012 and then for this), it was the lower weekly doses you get when you're also having radiation. I remember having a lot of anxiety over my first chemo in 2012 and I probably was anxious before the first chemo last year too, but I just have to go and get through it. It's hard not to get discouraged by statistics and odds, but I'm doing my best to hang in there. --Laralyn

Hi--I'm Laralyn. I was treated for HPV+ SCC in my tonsil and soft palate in 2012, and was all clear until discovery of lung cancer in October. I was diagnosed with Stage IIIa NSCLC (HPV+ SCC again). I completed 6 weeks of chemoradiation on December 29th, and am having two consolidation chemo treatments with Carboplatin+Taxol starting the end of January. I've been looking for active forums to ask questions and for a sense of community with other lung cancer patients. I went to the CSN forums during H&N cancer treatments (which are super active) but the lung cancer forums there have almost no activity. I'm glad to have found this community!