I was diagnosed with metastatic tumors in both lungs on 15 October. I had 5 sub 1 cm growths, 3 in the right and two in the left. I was told by my care providers from the first round of treatments that my only choices were palative care or a clinical trial.

Went to Johns Hopkins, Bleumenthal Cancer center on 3 November for a consult. This is the place that made the initial HPV-16 SCC connection. The folks at Hopkins informed me that I wasn't able to qualify for a clinical trial due to lack of tumor mass, they do have a protocol for mets to the lungs and Started treatment on 10 November. I am about half way through. Treatment is IV Carboplatin and Taxotere followed by a 96 hour infusion of 5FU.

The cycles are three weeks long. Treatments for four days, followed by a Neulasta shot on day 7 or 8. Rest until next round. I will get PET/CT performed right before the fourth round. Plan is to go 4 to 6 cycles depending on tumor response.

During the long month between diagnosis and start of treatment I read the Newsweek article "What You Don't Know can Kill You". How germane. You should get rare cancers treated a reknown cancer center, If anything goes awry the varsity team can make adjustments that will save your life.

Good luck Bill. We are all in your corner!!

Bill I am so sorry to read your post. I had also gotten clear scans and then had a recurrance within a very short amount of time. Your treatments sound pretty rough. Wishing you the best possible outcome with your current battle.

I have been getting some good news recently regarding my nodules. I had a PET/CT after the third round of chemo. When I went to the hospital for the fourth round the Oncologist decided to cancel since the response in my lungs was complete after 3 treatments of Carboplatin/Taxotere IV + 5FU 96 hour pump. I was shocked. My first prognosis wasn "10-12 to live, we can't stop this". Fortunately we went for the second opinion and went to Johns HOpkins in Baltimore. The folks at JHH are so with it as far as treating HN SCC caused by HPV-16.

This week I had a needle biopsy ih the neck and another in the BOT as well as removal of a pesky Aphthuous ulcer. I will know next week what course of action remains for my treatment. The Dr. stated she was thinking of just 5FU by capsule. She apologized for over medicating me! Getting chemo without radiation is a walk in the park. I also went with loads of supplements prescribed by a naturopathic doctor. The ND is key to my keeping strength in between. Neulasta shots are great as well.

Still in the fight. I'd like to hear about any folks that have good results working with N.D.s.

Unbelievable Bill, that sounds so great!!!

Wow Bill. Way to get a second opinion and way to fight this shit. Awesome.

Bill, you just made my day!!!! Congrats on the fantastic news. Wishing you continued good health for many more years

Had a PET/CT on 9 March, Lungs CLEAR. Will biopsy in the BOT to make sure all is well there. My tongue is healing still, the site where the ulcer was removed is still healing but it is still way better than the ulcer.

Blood counts are recovering. Decided to stop treatment on the third cycle. Now it is surveilance time.

Thanks to all. Gotta love the folks at Hopkins.

Bill
It sounds like you have a great team at JH and it is good to hear that you are responding so well to their protocol.

I am curious about your Naturopathic Doctor(ND)and the supplements he has you on. Is he associated with your JH team?

great news bill!!