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HPV+ Throat Cancer: What to Expect in Treatment

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by JamesT on Feb 19, 2019 10:42 pm

Hello DaveClauser‍ 

Saliva production is still very low.  Still have a dry mouth...

I need to use the xylimelts at night time and have water with me all the time.

There are still foods I won't eat, cause I know they will be too dry.

What's very much improved is my ability to taste and eat anything I want without it hurting my throat.

So much improved vs where I used to be.

Sincerely,


James

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Vincenzo06 on Mar 12, 2019 12:14 pm

Hello all....any experience on related subject to share here is much appreciated.

I am week 4 post treatment for HPV base of tongue SCC....and now in recovery which I am finding as difficult as treatment.   I have PEG tube still as my throat is still burning and too sore to swallow solid food.  I can drink water but that is about it.  I also still have so much phlegm I have to carry a cup to spit in and a napkin to wipe every where I go.

I am getting very impatient with the recovery process and not being able to eat by mouth.  Anyone with similar issues/experience and thoughts or suggestions I would really appreciate.  Maybe just slow down and give it more time?  

I guess it took 7 weeks of radiation to kill the tumor so maybe it takes about the same for the healthy remaining tissue to heal?

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Brighty on Mar 12, 2019 12:21 pm

Welcome Vincenzo06‍ ! Glad you found us.   unfortunately ,  recovery can be a very slow process.    I'm going to tag JamesT‍  here who can share his experience  with you.     

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Wendym on Mar 13, 2019 2:09 pm

Thank you for all of the information.  I have a question that might seem trivial but were you able to get yourself to the hospital for treatment or did that become difficult with regards to fatigue.  My husband is on day 4 of radiation and did have the chemo on day one.  

Thanks so very much,

Wendy

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Brighty on Mar 13, 2019 2:14 pm

Wendym‍  that's not the least bit trivial    I wouldn't  suggest driving yourself to treatment.   Just my opinion.     My fiance  had too much fatigue  and was unable  to drive.   Some people  do.   BUT I would recommend  it.   

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Brighty on Mar 13, 2019 2:15 pm

Wendym‍  sorry.. typo..  I meant to write I would not recommend  it.

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by Wendym on Mar 13, 2019 3:05 pm

Thank you for your response, I figured it would be difficult.

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by JamesT on Mar 14, 2019 1:14 am

Hello Vincenzo06‍ 

Yes, unfortunately the recovery is a slow process and where it seems like it is taking forever for improvements the months start to pass and soon enough you will look back and say, wow it's so much better now than what it was.  Now appreciate I am saying that after 18 months.

The radiation does take a toll on your body.  I still have big issues with my mouth being so dry.  Hopefully that improves with some more time.

Sincerely,


James

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by JamesT on Mar 14, 2019 1:18 am

Hello Wendym‍ 

That question varies by person.

For myself I was able to drive myself a lot of the time, but then I did find as the pain increased and my pain killers were increasing, it was making it dangerous to drive myself.

It really depends how your husband is feeling.  There might be days that are better than others that driving would be ok, and others that aren't.

Sincerely,


James

Re: HPV+ Throat Cancer: What to Expect in Treatment

Posted by ashcon on May 13, 2019 5:21 pm

Hi there,
Vincenzo06‍  DaveClauserJillie‍ Will Dove Wendym‍   + others who have this cancer, or are caring for someone with this cancer.

I thought you may be interested in this free online course offered by Icahn School of Medicine at Mount Sinai (in the US) through Coursera:  HPV-Associated Oral and Throat Cancer: What You Need to Know

This is not a gratuitous plug for Coursera, nor is it to discount other sources of information or learning. When I was diagnosed with breast cancer, I took the "Intro to Breast Cancer" offered by Yale through Coursera, and I got a lot out of it. 
I believe that knowledge is power and wanted to share!  

I hope you (or your loved ones) are doing well in their journey with this disease.