| | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Answers are good...clear scopes are GREAT!!!
Thanks for the update Debbie!
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: 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: Nov 2011 Posts: 53 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2011 Posts: 53 | A new little pep in his step, the antibiotics are kicking in already and he discovered chocolate ice cream now tastes like chocolate again. Another celebration today, a friend of our daughters just finished his radiation today!! He had 6 Chemo's and 35 rads. With all of the information you give and we have experienced we have been and can continue to pass the torch of knowledge and healing to him. Bless you all, I don't know what we would have done without this site. There is not an instructional manual they hand you with all of this stuff and we will be forever grateful. Setting up now for Occupational Therapy for the Lymphodemia then continue a normal life whatever that is. Thanks to all of you!
Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | That's good news. Not the bacteria...but the rest!!
Kevin's scope found the same thing Then the ct too. His follow up PET isn't going to be until at least March though. They said if you do it too soon the inflammation will light up and scare everyone to death. I'm surprised they are doing Pat's sooner than Kev's. Back to that different doc thing!
Kevin has now worked one complete 12 hour day. Only he found out they are actually 13 hours day because they start at 5am now!! He said he's tired, but not too bad. Eating lots of yogurt!
Glad you got some answers. Hope he feels much better soon.
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Nov 2011 Posts: 53 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2011 Posts: 53 | Before you know it he will be back home and ready to relax with his bride :-) Hang in there. The colony is still breaking up so back to coughing and spitting up unidentifiable gunk, but that's a good thing. Get it all out! We have a routing next Tuesday at Moffit for bloodwork and the Oncologist so we will ask him about the PET and get a second opinion too. We certainly do not need any false alarms. He is still going through the what if's. Is there a standard time for follow up PET scans? They have not talked about or scheduled a CT.
Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hi, Debbie
as I understand it, 3 months is the typical minumum wait for a planned PET, but I have seen references to 2-6 months in some of the literature I have read. My husband's doctors wouldn't specify the date until about a month before he had the scan.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | They just told Kevin they wanted to wait until March. Last radiation and Erbitux was 10/26&27. Funny though, Kev already had the CT. So strange how everyone is different. Not sure if it's comforting or not, huh? Kevin said the biggest issue he's having is the dry air. The temp is -45 so one breath in and your mouth is dry. With his being dry anyway it makes it hard, then he swallows and he says it feels like sand paper. He's had to take quite a bit of pain meds today. He's not terribly tired though. Doing a lot of desk work. Good luck this week Deb. And by the way...I find myself struggling with the what ifs too. :o(
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | 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 | Move to Florida! lol It's bad enough down here when the temps dip into the dry 50's, I can't imagine minus anything!
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: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Kathy -
My husband was complaining of the dry air, too - he was out fixing the mailbox yesterday - but it was a balmy 30 degrees F!
I don't know if they have any humidifiers at the site - if there are, he should beg borrow or steal one for at night/by his desk. If there isn't a humifier, see if there is a hot plate, coffee makes or electric tea pot. Barring that, a pan of water by the hot air source will help a bit. If he can give himself a little relief at night/doing desk work it will help.
We have a Hamilton Beach Invisible Mist humidifier that makes white noise which helps me sleep, and mist with helps my husband. Maybe get two - one for at home, one to send up with him next time. Best wishes to you both - you are both tough cookies!
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Nov 2011 Posts: 53 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2011 Posts: 53 | I hear you there David, I cannot imagine going through this anywhere but Florida. Moffit is close, but better than that the Convertible on January 8th is very therapeutic :-) Kathy, those few days when it is not humid here we use a humidifier and it works wonders. We are still waiting for the fungus colony to break up and move out, but it is getting better for Pat. He is still getting some pain when he eats, mostly from the stubborn sore still on his tongue, but not as bad as a few days ago. Pat says to tell you he's thinking of Kevin and he is one tough guy for doing what he is doing.
Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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