HPV Alliance.org

Have any of you checked this out? I just recently found it.https://hpvalliance.org/

I read Lillian's story early in my post treatment time and came across it again. And found this site that I had not seen before.

Kim, Nicole like this post.
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Thank you! lot's of good info to go through on this site. I'm looking for what they do with donations. I'll get back to you when I find it.
Shannon likes this comment
Thank you for sharing that – it’s wonderful that people are taking steps to make a difference with this cancer. My sincere wish is that they will quit referring to HPV as a sexually transmitted virus – if it can be spread by mere skin to skin contact, I think they should just call it an easily transmissible virus. That might reduce a lot of the stigma around getting vaccinated and pursuing treatment.
Shannon, Easterly like this comment
Very good point. It is crazy the same virus is linked to cervical cancer but the reaction to the 2 cancers are different
Cleo, Julie like this comment
Good idea; do they really know that there isn't toilet contamination, even medical equipment contact.
The other day I went to the dermatologist, and was told to strip, given a gown (with instructions to leave the back open) and a sanitary paper for the foot step. But, with the back open, sitting on the seat; even with panties on, I am not the person they should trust with the butt to seat contact.🤣 (of course I put my sweater down, for me to sit on. What is actually cleaned in the doctor office? ~Eww!😱
Julie likes this comment
thanks for reminding me about this excellent site; I had forgotten about it and spent alot of time all over the internet,. in addition to the HPV Foundation, Helen's list,etc.

Interesting discussion about oral chemo vs. port. Before my treatment plan was finalized I read about the Sloan Kettering study stating that MSKK has using Xeloda(capacetabine) for a,c because of lower toxicity and same outcome
as 5FU via port. I am phobic about needles and the idea of the fanny pack or a week,etc was freaking me out. I pressed my medical onc to let me have Xeloda; he was really reluctant, but finally agreed to let me have the pills. I think I had the bladder and bowel side effects that every one had, but I did NOt have mouth sores and the side effects that required hospitalization.
I think Mitomycin C is the culprit for misery'

Easterly, Shannon like this comment
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Vital Info

Posts

July 7, 2019

Missouri 65542

December 4, 1972

Cancer Info

Anal Cancer

Squamous cell carcinoma

March 31, 2019

Stage 3A

over 6.1

Yes

How it scares me

How important life and family are

Keep me positive. Keep me going.

No

Soft blanket, cards

Siteman St Louis MO

Drink lots of water and Gatorade

Rest, pray and exercise

June 17, 2019

No

Changes in bowels, narrowing of stools and maroon blood in stool.

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