As with most of the PET scans I did it always lit up something somewhere, just glad to know you are doing well and getting the treatment you will need.

PS: Don’t worry about posting Lung Cancer here on H&N, it is good to know how you are doing even if the cancer was on your big toe.

Tim

I am so glad to hear that your results look promising. No trifecta, ok? Twice is enough! My husband's nasopharyngeal tumor was HPV 16+ so I've been following your posts. We'll be vigilant about the scans, especially around the chest/lung.

All the best,

Barbara

Laralyn,

Good luck with your continuing situation.

I am just embarking on the HPV+/SCC journey - diagnosed in February and surgery on Tuesday.

Richard

It's always allowed to post happy news! I'm glad to hear you had such a good result from your treatment. Like someone else said, I can't get too much information about this cancer. Even though mine was HPV- , I do have two lung nodules that are being watched and appreciate that you've shared your story with us. I hope you continue to feel stronger and healthier every day. 

First don't feel that posting about lung cancer was wrong. Many have it light up in the lungs and even spread to them. You started as H&N and fought where ever it went, plus we are all family once you join this group. The only way to say how this group is, and grateful we have ones that understand just how we do feel and go through. Plus that was some really good advice. Glad you are doing ok.

Bill

Laralyn said:

So sorry to hear that!

It might be worth a second opinion, to see if radiation plus chemo is at all a possibility. My oncologists wanted to reserve options like Keytruda as second line treatments, in case it recurs. I'm only one scan in after my lung treatments so we'll see what happens at the second scan in a few weeks... but my radiation oncologist said that since it didn't return to the orginal location after rad+chemo, there is a chance the same will happen in the lung. 

Beyond that, don't give up hope! All of the lung cancer stats are even more out of date than head and neck cancer because there has been a lot of recent research into targeted and immune therapies. The lung cancer board here was not as helpful for me as sites like Inspire's American Lung Association's board, which seems to get more traffic. It's what taught me that there's a shift to look at how to manage lung cancer rather than considering it some kind of "lost cause." Ultimately it's all about buying time for any of us, but for lung cancer the research is so ongoing and important that buying time becomes even more relevant and important.

I'm glad to answer any questions I can--in this thread or via message. 

We have had 2 opinions and both and they thought Keytruda best option for him. He was HPV positive in neck but did not test for hpv in lung biopsy due to the small sample they were able to get, in case we need to send for a future clinical trial. I would think since so soon in lung, must also be HPV positive as well.

i refuse to give up, and feel both doctors are not optimistic about survival, so praying Keytruda will prolong life.

the_wife said:

Congratulations!

Laralyn,

Congratulations, that certainly sounds like good news to me!! My hubby had Stage 4 HPV+ tonsil cancer that had gone into two nodes. He is still NED at 6 months out. I am very interested in what you have to post here anytime. You should not hesitate to hang out here on this thread. You are a H&N survivor, so that gives you a lifetime pass! 

Thanks so much for sharing - that is all very interesting information. Personally, I can't get enough information on H&N or related cancers others experience with a similar diagnosis as my hubby's. 

One thing I am concerned about is that since my hubby's immediate post treatment PET scan, he has not had any other scans and I don't believe they plan on doing any until 1 year out. This is concerning, but seems to be the "new standard" for other types of cancers, too. Very scary, but apparently the thinking is that most of the time we discover recurrences or new cancers on our own, as you did. But still, you wonder....

Again, congratulations and thanks for sharing! Don't be a stranger...it's nice to hear from you anytime.

Take care!

My hubby was diagnosed in January 2016 with stage 4 hpv related scc of left tonsil with 2 nodes involved. He went through 6 weekly chemo treatments and then had 33 radiation treatments. He is doing really great. We go this coming Monday for 2 month follow up with ct of head and neck and ct of lungs. I am like you in regards to wanting to know everything I can about this cancer and others experiences. Sometimes I feel I need to let it go. So glad your husband is doing well also. 

LaraLyn,

Thank you for the update.  I too had SCC HPV16+.  Dumb question.  I'm having the PET scans q3mo x 1 year etc etc.  I did have a chest CT because something glowed on PET but otherwise no CT's are planned.  Nobody has mentioned screening CT.  Should I mention it to them?

So your lung ca was most likely a new primary?  A SCC HPV+ new primary?  I didnt even know you could get SCC HPV+ in the lung unless it was mets there from HNC.  But then I know next to nothing about cancer (L&D nurse here).  What a road you've travelled.

Thank you for sharing your experiences!