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just a little update #198736
07-20-2019 06:00 AM
07-20-2019 06:00 AM
Joined: Aug 2018
Posts: 268
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ConnieT Offline OP
Gold Member (200+ posts)
ConnieT  Offline OP
Gold Member (200+ posts)
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Joined: Aug 2018
Posts: 268
I still read posts on here but it's been quiet for the most part after a few scares. Husband has a CT scan in August. They said no more PET scans right now due to the amount of radiation exposure but a doctor friend asked why they aren't doing an MRI as CT scan has radiation. Good question!

Husband has finally been doing a little googling about his condition and put himself into a panic. Called his doctors who told him due to the HPV positive, he has a 90% survival rate. Interesting. I have not seen those numbers but maybe that's true these days. If so, OC medicine has come a long way.

He has been complaining about how tired he is. I said, they obliterated your thyroid. He said that's why I"m so cold and tired? I said maybe, get it checked. A few days later, he comes running out to tell me that he was reading about thyroid and how radiation damages it. oh my! it was like new news to him. I didn't slap him but the thought crossed my mind! I just rolled my eyes in my mind. He went to local hospital which I refuse to go to for multiple reasons (mostly mistakes they make) and he asked for a thyroid panel. They tested his TSH and then did a whole panel of others stuff he never asked for. I had told him what to order from a lab you walk in and pay for the tests you want. He didn't listen cuz he says insurance pays for everything so I want free. I can guarantee it was not free. I will get a bill. There's a whole story I could share about him and insurance! So, he never got the info he needed about his thyroid. he exhausts me.

anyway, you would never know he had cancer. He eats junk food night and day cuz in his head, he can't lose weight. He weighs 250 lbs. They beat that into his head and now it's stuck! He thinks he needs to gain and I don't know if chemo and radiation affect your weight permanently or not. Kind of curious to know.

thanks for reading. I still need a vacation from all I went through this last year. still exhausted and unappreciated.

Last edited by ConnieT; 07-20-2019 06:03 AM.

Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: just a little update [Re: ConnieT] #198742
07-20-2019 02:47 PM
07-20-2019 02:47 PM
Joined: Jun 2007
Posts: 10,409
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,409
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Hi Connie!!!! Nice to see you stop by smile

Yes, your husband is correct that HPV+ OC patients have much better survival rates than if their cancers' cause was from using tobacco. Off the top of my head I do not know the exact statistics and percentages of survival rates. Im pretty sure the HPV+ 90% survival rate was only for those patients who were diagnosed very early when they were Stage I or II. Other HPV+ patients Stage IV patients have significantly less survival odds. These numbers change frequently so I dont focus too much on them, plus Im one who beat my 3rd OC round when the odds were stacked against my survival. One thing I didnt see you mention on your post was if your husband was or is a smoker which I seem to think he is or he was. The HPV+ OC patients who smoke do not have the same high survival rates or odds.

Much of the HPV research that is known today was discovered from Dr Maura Gillison who Brian Hill (OCF's founder) met years ago. OCF was an early supporter of this then unheard of virus. Im sure she has published her findings about survival percentages and other things about HPV everyone should know.

Glad to hear your husband is doing well and finally becoming curious about his condition. Hopefully the upcoming scans will remain clear and you both will enjoy many happy, healthy cancer-free years ahead smile


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: just a little update [Re: ChristineB] #198743
07-21-2019 05:25 AM
07-21-2019 05:25 AM
Joined: Aug 2018
Posts: 268
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ConnieT Offline OP
Gold Member (200+ posts)
ConnieT  Offline OP
Gold Member (200+ posts)
C

Joined: Aug 2018
Posts: 268
It was interesting to hear that they changed his Stage 4a to a Stage 2 due to the HPV. He smoked for many years mostly before I met him as I started to throw away his cigarettes every time I saw them. He had hidden his smoking from me as well as the chewing tobacco habit. I'm highly allergic to the formaldehyde in cigarette smoke. He did chew tobacco for 22 yrs before his diagnosis He grew up around chain smokers so it's always been a part of his life.

Life goes on.......


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.

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