| | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) |  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | Thanks. I will take your advice on board. I like the model T ford metaphor, very funny. 
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | I'm not going to say it...but it was fantastic! Thank you sister morphine...the only part of this tx that still brings a smile to my face!
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Our sex life stopped the day rob was diagnosed,He had the desire,but the mechanics just wouldn't work for him and rather than face disappointment he put sex in his cancer cupboard and locked the door.To Rob having cancer was a weakness,a punishment,and made him less of a man.It was one area of our life he took charge of and his fragile emotional state allowed cancer to take charge of him, and all control he felt he had in his living,and ultimately his mind shut sex away.The only emotion he ever showed was manifested in rebellion and anger.As i wrote at the time in the last three weeks of his life we had a closeness i never thought possible,and shower times were a source of a rather sad amusement,and we laughed at his unused body parts,but it was bitter sweet .He was a very physical man and this disease and its treatment can take away more than just your health.
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | For me I had no desire during the tx or after surgery...I think it was 11 months after treatment that we tried and it was awkward as I still had my PEG tube in and my mouth and tongue weren't working like they used to. I also felt very uncomfortable about the way I looked...it didn't matter to my wife but it was a huge issue for me.
Our sexlife now is really spotty again though as my chemical imbalance left me fatigued most of the time. When I started taking steroids I thought it would give me a boost, but now I really haven't been "up" to the occasion. My wife has been great and understanding, however we are young and should be enjoying more. Our last "connection" over a month and a half ago was a wonderful and beautiful experience that I thought would promote more such activities...unfortunately chemically I'm just not there.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Aug 2007 Posts: 32 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2007 Posts: 32 | I'm lucky to say our sex life continued through treatment. The stomach feeding tube required some adjustment.
I was hospitalized with pneumonia during chemo/radiation, and then in the hospital again after treatment with a mrsa staph infection. Those were two big down periods from much of any activity.
But no long term effects now.
Stage III BOT, 14 weeks chemotherapy, 7 weeks IMRT. Finished treatment Jan. 2007.
| | | | | Joined: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | I think Martin is also worried about his appearance. He has put on a bit of weight and does look much healthier than before, but still very thin, he has grass hopper legs and his bottom has disapeared completely. He keeps obscessing about the top of his stomach under the ribs that still goes in a bit. I also have more defined muscles than he does, which annoys him "I have smaller muscles than a bird" he tells me.
He was also worried that his face looked wrinkly and that he looked 150 not 50. I kept telling him that it wasn't true, that his younger brother is much more wrinkly than him (which is the total truth), but he didn't beleive me. Until his sister in law, who speaks her mind and doesn't mince words, was surprised he was going to be 50 in September "50, I wouldn't have thought, you don't look it! What's your secret!". He was so chuffed when he told.
He now moisturises with special man face cream and seems to feel much better. This is very recent, so i think slowly the cuddling might get closer.
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Cecilia, it's totally great to know I'm not the only one worried about my looks and muscles...I swear reading your post was like reading my own journal. I worry about my facial disfigurements and my lack of just size, I was 210lbs before treatment and only stand 5'9", I could bench close to 400lbs...now I'm working on doing "regular" pushups and lost 70lbs. Men are just as insecure about their looks as women...at least I am.
I've been gaining weight and muscle mass now that I'm on juice though and actually look healthy again...I could use another 10-15 lbs. of solid muscle but hey...who couldn't. I often wonder how many guys experience the chemical imbalance and are on steriods and what that's done for them. I guess I had an image in my mind that I would get super buff and aggressive and want to have sex all the time...kind of like the way I was before I got cancer lol.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Eric, get all of whst you just said and implant it firmly in your mind. I do believe it is mind over matter and soon you will be chasing your woman around the house. LOL Forget OC and run Eric run. Might want to get some Viagra to assist.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Cecilia, It seems I can't exercise my legs because I still have the bottom half of an anneurysm repair to go thru and I could cause a problem for my self if I did execise my legs. I walk but can do nothing with wieghts or anything. I do work out the top and it looks good LOL even have my chest back in shape. My biggest worry is my mouth and no teeth. > My lips look like water going down a drain LOL When you have an anneurysm repaired, the stomache muscles get cut and that area gets that fat look and is very hard to firm up. The muscles under that layer I do have firm and back to normal but I will keep my shirt on for now unless alone. Get me some teeth and I won't worry about the other things, LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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