Just finished first clinical trial treatment this week


I had HPV+ SCC in my left tonsil and soft palate (Stage IV) in 2014, and had HPV+ SCC in my right lung and lymph nodes (Stage IIIa) at the end of 2015. Both times I had chemo-radiation, the first time with cisplatin and the second time with carboplatin+taxol. The three month PET scan was all clear, but at my six month PET scan, we discovered new lung nodules forming in both the right and left lung.

It took a while to get started because I had to taper off prednisone (which I was on for breathing issues after lung radiation), then needed screening tests for the trial, then got delayed again when the center doing the clinical trial (The Angeles Clinic) wasn't sure their CT actually showed cancer while UCLA (where I was treated for lung cancer and had the PET/CT) was 100% positive it was. Eventually I had an ultrasound guided core needle biopsy at UCLA which came back positive for SCC. I'm hoping there was enough tissue taken to have it sequenced at Foundation One for targetable mutations... but those are pretty unlikely for HPV+ SCC in a non-smoker.

So last week I finally started the clinical trial. It's a phase 2 combination immunotherapy trial of nivolumab (Opdivo) and a novel drug called epacadostat. Opdivo is an anti-PD1 antibody that blocks one of the checkpoints cancer "fakes" to get the immune system to ignore it. Epacadostat is brand new and so far I think is only in phase 2 and 3 trials (so not on the market at all yet). It blocks ID01, a chemical the cancer exudes to slow down or stop t-cell production. The theory is that epacadostat gets your immune system working again while the nivolumab stop one way the cancer can block those t-cells from doing their job.

It's really interesting going from traditional gold-standard platinum chemo (twice) to immunotherapy. With chemo, they pretty much know how and when you'll have a set of side effects: they even proactively give you drugs for the side effects they're sure you'll have (like nausea meds and dexamethasone). With immunotherapy, the side effects are completely unpredictable. They don't know which, if any, you'll have or when they'll hit. You can go months of treatment and be fine and then suddenly start having side effects, for example.

The other interesting thing about immunotherapy is that, unlike chemo, it's much more hit-and-miss. Chemo is fairly reliable in terms of producing a response: it's whether the response is thorough or whether it lasts. With immunotherapy, only 15-25% of patients respond at all. Although expression of PD-1 in the biopsy can indicate possible response, lots of highly PD-1 expressing folks show zero response and lots of folks for no or almost no PD-1 expression have great responses. When it works, the response can be dramatic: patients have had visibly swollen nodes melt away after a few weeks or months, and one case had the cancer dissolve so quickly it actually left a cavity in her chest.

I don't have any visible cancer, so I'll have to wait for the first scan to see if it's working (which I think is after the 4th treatment, so in about 7 weeks). My reaction was pretty nuts though, for a treatment that is supposed to have low or no side effects. Within 12 hours, I started having chills and a fever. I had joint and muscle aches like you have with a feverish flu, and intense pain in my right side/chest/back (where the cancer mainly is). The second day after treatment, I started having breathing problems which is concerning since I had radiation damage to my lungs and pneumonitis is the most severe, life treatening side effect. By the fourth day, though, all the side effects except fatigue started dying down. I've been watching Opdivo patients discuss their side effects on a lung cancer forum, and some think the type of side effects I had are a sign your immune system is attacking the cancer. It's definitely an immune reaction... the question is whether my immune system is going after the cancer or just random body parts. :-)

Right now, the main two anti-PD1 antibodies, Opdivo and Keytruda, don't have high enough success rates to be first-line treatments for anything other than melanoma. The hope is that combining them with other agents will raise their effectiveness. I do believe immunotherapy is paving the way for new cancer treatments that will be less damaging. I'll post more info and results as the treatments progress.


  • donfoo
    donfoo Member Posts: 1,771 Member
    on the way

    So glad to hear your update about the new trial. As this is all new it is wonderful to have your first hand account. 

  • HelenBack
    HelenBack Member Posts: 87 Member
    Thank You

    Thank you for that fascinating account. It sure does sound promising that your body responded so quickly. It reminds me of the Vice (HBO) show on new cancer treatments with immunotherapy. The people profiled got intensely sick befoer they had an incredible response (total remission). I sure hope that the case for you and I look forward to your informative updates.



  • swopoe
    swopoe Member Posts: 492
    Thanks for sharing, Laralyn.

    Thanks for sharing, Laralyn. Please keep us posted, and I am praying that you have a great response.

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    Thank you

    Thank you so much for your updates on your journey.  I am so interested in the HPV+ since more younger and non-smokers are showing up HPV +.  I did smoke and was HPV + SCC and I worry for many smokers that have quit years ago having this Cancer.  In my late 50's so I have made sure to pass on info regarding the signs and not to fool around.  Hope all goes Amazing for you.   Hugs, Lisa

  • Barbaraek
    Barbaraek Member Posts: 626
    You are a profile in courage

    Laralyn. Thank you for doing the trial and keeping us posted. I hope for the best for you.