Mayo Clinic Connect
Hello, I am reaching out to see if anyone in this group is diagnosed with HPV P16 positive cancer We have unknown origin and are being treated for head and neck cancer. Anyone else with similiar presenation?.
@frankbc, it is so unsettling being diagnosed with a cancer in which origins are unclear. I know fellow member @cindylb can relate. Her husband was also diagnosed with an unknown primary cancer. It is however behaving more like lung cancer than head & neck cancer.
I'm also tagging fellow head & neck cancer members @alpaca @fxdwing @catlyn @lynalexa and @sylviapf, who may have experiences to share about HPV P16 positive cancer and H&N cancer in general.
While we wait for others to chime in, I think you might also be interested in this past discussion started by @chapmanswife
– How can I be a supportive caregiver? HPV Squamous Cell Carcinoma https://connect.mayoclinic.org/discussion/diagnosis-and-discussions/
Frankbc, in another discussion you mentioned that your husband is getting chemo and immunotherapy (Carbo, 5-FU and Keytruda) and tolerating it relatively well. Did you learn anything more at your recent appointment at Mayo? How are you holding up?
Liked by Teresa, Volunteer Mentor, cindylb
His current treatment seems to knock the pain in his back down for a few days. When we saw the cancer dr at mayo , he said to finish the first 6 treatments and come back any time. We can check after first of year to see what clinical trials are available.
Liked by Teresa, Volunteer Mentor
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Hello @frankbc – My name is Cindy Bond and Colleen Young tagged me on your last post because your husband has a 'cancer of unknown primary' and so does my husband. It can be a very difficult situation because you can't a clear protocol to follow from the doctors and it doubles the unknowns you face with cancer. My husband's cancer is still unknown but leaning lung cancer. None of the biopsies showed a clear diagnosis. He waited just short of three years for any treatment because oddly, the cancer (a Stage IV) was spreading in his bloodstream but the only tumor was in his lung and a nearby lymph node and wasn't growing, until recently. His biopsies showed elements of lung and upper GI cancer. After PET Scans every three months for 3 years with no growth, the cancer suddenly grew very quickly and aggressively to his bones and in the lung area and center of his chest. From that information we were able to move forward with a chemo and immunotherapy plan of Carboplatin, Alimpta and Keytruda. My husband had "Foundation Testing" which showed a very small amount of PDL-1, which might mean lung and which Keytruda works to remove, but we still don't know for sure what cancer we're dealing with. My husband just finished his four major treatments and will now move to 'maintenance therapy' of Alimpta (a chemo drug) and Keytruda. That might tell us more about a definitive diagnosis (we can hope) because the Carboplatin chemo is very strong and pretty much kills every cell, so I believe it would work well on many cancers. Same with the Alimpta I think, but the Keytruda only works on select cancers. Four sessions of chemo/immuno has eradicated the cancer in his bones, almost all of the lymph node cancer is gone and the tumor in his lung has reduced by half or more. It is our hope that the maintenance will keep it at bay but the doctors aren't really looking for a 'cure' for my husband as much as increasing the number of months/years he has. We are of course hoping for more but understanding that might not be the case. My husband had considerable and some severe side effects from the chemo. We don't know, given there were three drugs in play, which caused the major side effects but probably the Carboplatin. We're hopeful the maintenance will be kinder to him and yet keep the cancer from growing again. Also, my husband had 5 sessions/treatments with radiation to the center lymph node and that may have helped that area a great deal. I hope our situation might give you a little more information on another patient facing an unknown primary. If you'd like to stay in touch I'd be happy to do that and also hear about your journey and results. p.s. I'm also a breast cancer survivor – five years in November!! So, I've spent lots of time researching cancer. Just enough to be a pain in the….you know what…..to our doctors, ha ha. Hugs to you and your husband.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
I was diagnosed with Stage 4 oral cancer in 2009. I did the standard treatment of 7 weeks of chemo cocktails and radiation. They told me I was HPV positive, the MD said the good thing about being HPV positive was the success rate was better than being non-positive. I’m not sure if I was HPV 16, I believe so, but would need to check my paperwork. I had seen multiple ENTs for more than 2 years without a diagnosis. I had a chronic scratchy throat that I could not seem to clear. I had been scoped so many times I lost count. Then one day I woke up with a golf ball size lump on the side of my neck. The MD’s all agreed that was not good.
After, that they put me on prednisone to see if the lump would go away, no such luck, needle biopsy next, that was a no finding. I had a good ENT that said the lump was there too long and suggested removing the lump, I agreed, that’s when I was diagnosed with stage 4 squamous cell oral cancer. It was a battle but thank God I’m still here today. I will post more later, it’s getting late. I hope this helps someone out there.
Thank you Cindy, I’m shelly and my husband had a nymph node in his neck that was the size of a golf ball. Very fast growing. After 2 liver biopsies they say it is stage 4 head and neck that had gone to liver and bones. and the biopsies confirm the same cancer that is in the neck lymph node- hpv p16 positive. After first treatment the neck node is unnoticeable . His treatment is carboplaten , 5-fu and keytruda. He has finished the 3 rd treatment with pending PET scan this week. He has twinges in liver and a little back pain but shows up at night. he has handled treatment very well. The 5fu infusion for 4 days makes him uncomfortable. But other side affects are on the minor side. They are treating head and neck but I worry the primary that they are basing the treatment in is someplace else.
Wow Cindy- thanks for sharing and for being informed and persistent. Hugs back.
Hi, I’m not sure if you can see what I wrote to Cindy. If not, I will cut and paste it. It’s my husbands story. So glad you are still here, too. It gives us hope. My husbands initial treatment is going well with 3 more treatments to go ending just before the end of the year. The diagnosis, head and neck, primary unknown was given the end of July.
Glad to hear your husbands tratment is going well. Initially the MDs did not know the primary source of my cancer, but that all changed when they found the primary source behind my right tonsil. As I mentioned in my last reply, I had been scoped many times but the ENT’s never looked behind my tonsils. They found my primary source when they put me under to have the feeding tube inserted. Luckily, I had a great surgeon that took the time to further explore in my mouth for the primary source. As you may know, by knowing where the primary source was they could now begin a course of targeted radiation for the specific area. As far as losing my taste after treatment, my MDs said it could take up to a year. For me it took close to two years to get my taste back to about 99% but everybody is different. Taste does return, but it has a short memory when it starts to return, the first bite is always the most flavor then it starts to diminish until you take a bite of something else. Any other questions feel free to ask. Always willing to share my experience if it can help others. Keep the faith and stay strong!
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