#59228 10-13-2006 02:02 PM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2006 Posts: 493 | David,
Do you have a can every 2 to 3 hours? You are so right. I never had that many calories before and gained weight all the time. I only lost 12 lbs at the end of treatment and don't want to lose anymore.
My throat is still very sore and I have the dreaded mucous. The VHC tends to get hung up on the mucous. But I think it
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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#59229 10-14-2006 07:10 AM | Joined: Jul 2006 Posts: 109 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Jul 2006 Posts: 109 | Hey Tim, are you sure you dont have a sinus infection or do you have thrush inside your mouth? Im just wondering cause you are having a terrible time with the mucous, which i am too, but my doctor also told me i had a sinus problem which was making it worse, so im on meds for that! Just a thought? And have you tried to rinse your mouth with baking soda and water, to help break that up? Or i even did ginger ale which does it too. But to make your day brighter, it does get better with time, mine has and you are not that far behind me  And for the laxative, try "Enulose" mine is in a liquid form to push through my tube, its the only thing that has worked for me! Hope this helps you and have a good weekend. | | |
#59230 10-14-2006 07:12 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 | Stoj, 8 days out of tx I was still a sick puppy. I also had real bad nausea, thick stuff, sore throat, fatigue, etc. I was taking all sorts of meds and was in bed most, if not all, the day. Within a week my throat was better, the mucous had almost disappeared (which led to dry mouth), the nausea was gone, I was totally off all meds but I was still tired. That's when I felt like I had walked out of that very long dark tunnel I had been in for months.
I never have liked taking meds so when I finally decided to take myself off everything, my condition seemed to improve which gave me a confidence boost. Meds were a problem for me since the beginning. They would give me pres for multiple meds and I would get them filled and start taking them. When they didn't do what they were suppossed to, they would give me more and they usually didn't do the job either so when I took myself off everything I figured it was worth a try. I could open a small pharmacy with the untaken meds I still have.
I know from experience you can't fathom the end of that tunnel the way you feel now but I wouldn't be surprised if things don't start to improve any day now.
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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#59231 10-14-2006 07:29 AM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2006 Posts: 493 | Thanks for the response;
I gargle with salt water and baking soda 3/4 x a day. The Mucous is mostly clear and the Dr says it's from the xrt. I haven't tried ginger ale yet. Anything fizzy seems to burn my throat.
Today is 9 days out and am doing OK still have a very sore throat. I started cutting back on the patch...dropped it to 50mg last night and haven't had any morphine in a couple of days, so we'll see how that goes.
I'm certainly looking forward to light that I keep hearing about. It's just so tough staying positive, I guess I have a touch of the after treatment depression I heard about as well.
Along with my wife and son the support I get from this website has been a godsend.
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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#59232 10-14-2006 08:48 AM | Joined: Sep 2006 Posts: 50 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2006 Posts: 50 | Hi Tim Thats great that you were able to decrease the patch to 50. My husband is still on 100 for the patch and oxycodone. His last treatment was August 11th and having a lot of mouth sores and jaw pain they took an xray the other day to see if there is a possible infection in the jaw so he is on a steroid right now for the swelling. So for 9 days out you are doing great hang in there. Brian uses bioteen mouth wash and toothpaste which is great for dry mouth and very gentle on the mouth sores. Hang in there B
BOT stage IV SCC moderately diff, invasive. radiation 2 chemos. DX 06/06. Ended radiation 8/11/06. Bleed out from tonsil area from radiation necrosis 10/27/06.
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#59233 10-14-2006 03:27 PM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2006 Posts: 493 | Hey B,
Thanks for the kind words. Did your husband have an infection?
I'll think good thoughts for you all.
Tim
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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#59234 10-17-2006 11:01 AM | Joined: Sep 2006 Posts: 50 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2006 Posts: 50 | Well no news is good news. No answer back on the xray I'm sure we would have heard. We see the ENT Friday. The predizone has helped the swelling but oh the side effects he is in such a bad mood and of course the predizone makes him hungry, which of course he can only get so much in him via tube and soft mushy food by mouth. The pain is not as intense as it was before the predizone. But still looking for answers from the dr why he is still in so much pain. Take Care
BOT stage IV SCC moderately diff, invasive. radiation 2 chemos. DX 06/06. Ended radiation 8/11/06. Bleed out from tonsil area from radiation necrosis 10/27/06.
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#59235 10-21-2006 01:19 AM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2006 Posts: 493 |
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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#59236 10-21-2006 07:56 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 and I are very close in terms of tx and as we progress along our post treatment differences will diminish with time.
I really don't find myself dwelling to much on my future with cancer. I will deal with whatever comes my way just as my wife and I have so far. Knowing now what we have been through I hope and pray that we don't have to be faced with a reoccurance but I don't think it's much in our control. I stopped smoking over 30 years ago and was a social drinker. I have been faithfully married for the last 16 years so I don't think I controlled getting my cancer in the first place.
Sometimes when I start to feel like "why me", I just think about all the children who are dealing with cancer or other life threatening diseases. At least I had 58 years of a normal healthy life. There are also many others here on this site that have had it much worse than you and I and they are dealing with it. I also don't have to go far to hear about so many people dieing every day and as bad as it might seem to us, we are still hear to complain about our problems.
Others have said it and I feel it as well, my outlook on life has changed since I felt close to death. It's only because of death that we hold life important and every day I get to see life in this different way I feel grateful.
Focus on healing your body and your family. Make every day count towards something positive and you won't have room for those negative thoughts.
JMHO,
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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#59237 10-21-2006 08:53 AM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2006 Posts: 493 | David,
Thanks for the words. You are right there are folks out here that have it much worse than me. I know that and I tell myself that I have received my treatment and according to the Drs I should be cancer free right now. But yet in the wee wee hours of the morning the demons creep in my head. I pray for relief from my self pity nightly and I know that once I get back home and into the swing of things like work and such things should get better. I guess this is the post tx depression we
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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