#59248 11-02-2006 01:51 PM | 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 | JoAnne, I would kill for some Maryland crab cakes. I grew up in Va and I was raised on blue crabs. I think my saliva just got better!!!
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.
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#59249 11-24-2006 08:18 AM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | About 7 weeks out of Tx now. My swalloing isn't normal and is still a sruggle. Although it doesn't hurt as much. Still don't have any real taste activity going on. I used to love chocolate before now I can't stand it.
I have a couple of questions that I'm going to discuss with my Dr upon my next visit, but I was wondering if any of you all had anything similar:
It seems as though I always have the chills... Has anyone experienced this?
My tongue has yellow patches on it. Nothing thick and it will come of if I scrub it with the toothe brush, but that hurts. Has anyone had this?
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#59250 11-24-2006 09:17 AM | Joined: May 2006 Posts: 137 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2006 Posts: 137 | Tim,
Ditto on everything you said. The chills went away after awhile and the swallowing got better-for awhile I was choking/almost aspirating I think and had to be very careful about swallowing. It's better now, but not as good as pre-treatment.
Yellow tongue has been getting progressively better, but I need to keep on it with the toothbrush.
dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
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#59251 11-24-2006 09:40 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | the chills could be your thyroid having problems. Are they testing your thyroid function?
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#59252 11-24-2006 12:36 PM | 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 | Tim,
As you know our Tx was identical except for your surgery and feeding tube. I am appx 1 month ahead of you in recovery.
I wouldn't call it chills but I have been colder than I was before my Tx. I thought it was from my weight loss. I haven't had any doc express any concern over my post Tx blood work so I assume my thyroid is OK as well.
As far as that yellow spotted tongue thing...the only problem I had with my tongue was it was coated white for about a week or so post Tx. It wasn't painful though and it went away on it's own.
As far as taste...I can taste just about everything I try for the first bite or so. After that, the more I chew, the less I taste. I can taste some things much better and longer than others and some things don't taste good at all.
Dry mouth is the thing that really ticks me off. I have to have a water bottle with me everywhere and I'm ALWAYS leaving it behind in stores. I already have a water bottle stashed in every room of my house and I guess I need to put a case in every car I drive. I went on my first post Tx bike ride yesterday and I wore a Camelbak on my back. I could not have ridden without it. I ride with my mouth open for max O2 so you can imagine what that does. The ride didn't bother me as much as I thought it might but constantly reaching for the water tube was cumbersome and will difinitely affect the quality of future rides. UGH.
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.
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#59253 11-24-2006 12:56 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | Hi Tim,
I think it is pretty normal to feel chilled due to sudden weight loss and the weakening of the body immune system. When you gain weight and get enough nutrition, the body temperature will rise gradually. Even now, 5 years post treatment, I need to wear thicker clothes than others at most times. As for yellow patches on the tongue, I can't say much and I had white painful spots everywhere inside my mouth which only went away after 3 to 4 months post treatment. Be patient, things do get better day by day, without your really realising.
Karen
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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#59254 11-24-2006 01:27 PM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | Thanks for the replies. At least I know this is kind of normal. I had thyroid blood test done a couple of weeks back, but I didn't hear from my Dr. I have an appointment with him on Monday, so I'll ask him about it.
David,
I went for a bike ride today...only a couple of miles. It felt good to do something. I go back to work in Dec. I'll hit the gym then, minimum 3 times a week. it's an Air Force requirement. So no excuses.
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#59255 11-25-2006 04:28 AM | 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 | Tim,
You better warn them that you will be running over to take a sip of water constantly or get a Camelbak like I have. LOL
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.
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#59256 11-25-2006 12:38 PM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | David,
I have a couple of Camelbaks, they are issued to us when we deploy to hot climates such as Iraq, Afghanistan, etc... Never really liked using them much. I like just a cold bottle of water.
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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