HPV16 Symptoms! Not Cancer Symptoms! past or present?

Greddy:

I spent the year before my tumor discovery wondering about odd feelings in the back of my throat.  It came and went, and I felt fine otherwise.  My Kid[2] is a doc, we discovered my tumor at a tapas bar one night when I mentioned it.  He initially thought it might be an abscess, but when he said he saw a large mass I knew.  All the scans just confirmed things. Mine was upper border of T-2 so we just called it T-3, tho I think they have redone all the Staging stuff.

I also think I have seen a pattern in occurrence, tho there is nothing solid behind it.  It seems like this H&N stuff happens in bunches, and my infusion team said they also thought they noticed that.  I doubt anyone is researching that.  I brought all this up with Kid[2] and my oncs, and the reaction was the same: It doesn't matter, we will still treat it the same. 

I don't get the feeling cancer research in general is well co-ordinated.  I developed bad ulcers and thrush during treatment.  Thrush in particular responded to nothing.  I heard Biotene a lot, but it had no affect.  I discovered that Biotene as a product had two lives.  One, produced by the orginal small firm that used botanicals in the forumula, and eventually after it was bought out, a new formula with synthetics as subs for the botanicals.  All of the measures on effectiveness were from the older formula.  I then discovered another product, BioXtra, made in Europe, that still used a botantical formula.  I got some via Amazon in Canada, used it for a few days, and it cured everything.  Digging, I found some research in Iran, and Baltimore USA which reported the same thing.  My oncs and care team had never heard of BioXtra, just knew Biotene, and largely thru the pre-buyout results, which are still the ones reported by Biotene.

My docs are good docs, but they are practicioners not researchers.  Kid[2] is marginally involved with research, and has taken major hits to his income for it.  He barely has enough time for anything resembling a normal life, deep research won't happen.   Research flows to money, and even being at Tier 1 facilities, research is minimal. 

I too had scar HPV 16+ yrs, traveled, ate & drank everything, full of tons of energy, excellent walking ability felt great & enjoying life in & out of Europe (3 yrs).   Had tiny red patch on left skin where tonsil USE to be.  3 yrs felt fine.   No tumor, no nodes nothing & went to ENT recommended by Internist for severe allergies.  No Dr was worried about patch never grew, never bother Me except during a bad allergy flare.  Would cough & sneeze constantl.   Everyone chalked it up to irrational.  I cked the patch regularly but never changed.  ENT didn't like it?  Doesn't bother Me except in allergy flares, so why I'm here, allergies bad & in FL all yr long it grows & blooms.  He wanted a biopsy?  OK, thought for an allergy test.  Next thing I know Cancer but feel great except allergies.  So he decides to do another so now patch 1/2 size came back HPV 16+.  He was a mess, I wasn't my body obviously to Me caring for itself.  No signs of HPV any where else.  Send Me to 2 Drs Chemo & Rads + No info.  Never, ever got any info wasn't until found this forum learned anything and all so different from Me & treatments they wanted to give.  Never a breather to educate, look for bigger all in one Cancer Center all new to Me.  Boy have I learned.  So been told only reason I'm still here is too explain to others please never a rush unless tumor ( had none). Lymph) or you don't feel great take time get second opinion & feel comfortable with Drs.  Big Center only an 1 hr away in TAmpa.  Never told Me an all in one Team approach.  There's sure wasn't.  Communication very poor I was in the dark thru whole thing.  If it wasn't for this forum & knowledge & help others have given won't of known when to start.  Not the most Computer smart, never was  but research now drives Me now.  More you know more power you have to say No even to a Dr.  remember, who knows your body better than you.  They said if We don't start immediately you will die a slow miserable death if last 3 yrs are dying OK no rush in MY mind but they pushed & pushed to start immediatel.  Family scared don't want you too die Mom, don't want to lose My Sister, now No Cancer in family ever, even 100 yrs.  any ways within 2 weeks fitted into mask, had Pet said 2 more sites, base of lungs call My lung Dr been there forever scarring.  We watched it for 3 yrs Surgeon ruled out anything but scarring from pneumonia & bronchitis as child.  Zero surgery for biopsy till I see a change, got ruled out, than said base of tongue ENT ruled out from constant scoping filmed.  So just now 1/2 patch of SKIN.  Stage 1 not 2-3.  PET does that often lights up but false Positive remembered that from Radiation training & Anatomy.  Drs looked unhappy.  But proceded with original treatment plans, 2 Chemo drugs strong Rads 7 weeks.  When asked why 2 cause forum patient all get 1 & No tumor or lymph so why 2.  Not giving Cisplaint, causes hearing lost & saving if 2 I give don't work.  Well first lie since would not tell Me drugs but Nurse at first infusion gave me all these bags so asked what they were, pre- Chemo bags for stomach, than Chemo drugs.  Asked what are the drugs Taxol & Cisplain.  According to Mayo site never give together.  Also called Moffit in TAmpa & asked.  Lady so nice to Me wasn't use too & admitted not the medical side but did order drugs for Drs & pharmacist said No can't mix she said stuck in her mind cause Drs were not happy but she said just way too toxic.  I. Just learned 3 days ago when called could they insert port for Me tho not patient, of course never refuse helping a Cancer patient.  My veins very scarred & need weekly IV & bi-weekly blood work.  No veins left basically.  Have a Sodium level disorder now.  Plus thyroid testing.  Now trying to get info on port & cleaning.  Different opinions on cleaning?  Been so overdosed here since Cancer 5 yrs ago but lectures why didn't I go to better Center.  Harvard proved HPV+. Needs less treatments if no tumors or lymph saying patients quality of living better than quantity of No living.  Been lied to now 5-6 x from Cancer Drs I'm scared of any Drs here others have over dosed Me. I have unusual body but I know!  So lots of drugs, over- Rads 70gs worse on right?  Feeding tube, unbelievable journey do NOT want others hurt & live like Me & another on this Forum who now has trach.  Were messes!  Good luck on journey.  Know lots but My journey.  Can ask Me anything always researching since not much seems to be done on our monster Cancer I feel the worse!  We need more out there, breast in your face all the time but try other than this wonderful Forum for support group in smaller town For Head or neck?   Please My thoughts with you!  Daisy Lisa

Hello everyone, my husband had hpv 16 cancer on his tonsil in 2017, it ended up spreading to the lymph nodes and they removed the tonsils and then did the radiation and chemo. When he came home he was brain damaged they believe from the chemo. He was in and out of hospitals because they did not know what to do with him. Suicide attempts, hallucinations, it was horrifically sad and heartbreaking to see this. He was with me and i have ptsd from the experience. It was difficult to keep him and myself safe from him because he was no longer himself. Our doctors told me to lock my bedroom door at night, i had to get sleep to try to help him. We finally found a hospital that offered ECT, the nurses said they see so many cases of chemo brain or brain damage from chemo. I did finally get my husband back but he went through too much mentally. Now he has just been diagnosed with a tumor on his tongue, they think it may be on a lymph node too. We had a pet scan and next will be the MRI. This ENT is good but he is the only one at the facility and he is by himself so it took two weeks to even get in to him. He is taking care of all ENT issues not just cancer, and the schedulers do not prioritize the cancer patients over the regular patients with hearing issues etc. I realy want him to get a second opinoin because when we were at the docs office he was overwhelmed by all of the patients. This hospital had an overturn of ENT's they all left due to circumstances i am unsure of. The doctor's nurse called my husband and told him that this ENT will have to consult with someone on this due to not having the experience with this type of cancer. I am wondering why he would do a biopsy on the tongue when the radiologist already told us that he is positive it is cancerous tumor and needs to be cut out. This ENT said he would only do biopsy first, I know the cancer ENT doc who left wanted to work quickly due to it spreading and we really appreciated that, but unfortunately it did spread and that is when he had to have chemo and radiation. He can never get chemo and radiation again so i am just really worried. I am sick too, i have an auto immune disease, plus injuries to my neck where I cant hold up my head with my neck for very long. The other doc is two hours away and i really want a second opinion but my husband said he cant go out of town again. i think due to the time in 2017 and it being a hellish experience. I want to take the best care of my husband, to do everything in my power to help him. But he has been my caretaker since 2008. I basically am in bed most of the time with my issues. Thank you for any help or any suggestions. Also we had to wait two weeks to even get into the cancer ENT, he is the only one there treating all ENT patients not just cancer patients.