| Joined: Jul 2013 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2013 Posts: 33 | I would like to share physical progress and get some of the forums insight. Note I have read and searched quite a bit on the board and many of you have already helped significantly.
I am three days out of rad and seven from final chemo and doing ok. Lost about 20 lbs (of 200), but maintaining and getting good nutrition and hydration via the tube. Throat is not terribly sore and I can swallow. Typical throat secretions and seperately it seems like my mouth fills with saliva(?) and requires constant spitting.
My concern is the disinterest and general feeling in moving away from the tube due to a very dry feeling throat, general mouth discomfort (no sores) and hesitation due to lack of taste. I take all meds orally and relatively consistent sips of water. It does feel like my throat is constricting a bit and I started crushing the largest pill.
How much do I force things? I realize it is early and these may be minor concerns in the grand scheme of things, but I don't want to get behind the curve with swallowing and eating given some of the ongoing concerns expressed.
Thank you.
J.
Male age 50 SCC BOT Stage IV HPV+ Tx 35xrad 3xchemo (cisplatin). Tx completed 7/2013 MND 10/2013 (Pathology Negative) Debridement for minor ORN 7/2014 | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | However long it takes, continue to use the peg, but exercise the mouth, dry swallow, if you can swallow liquids, even better. You should be able to eat a week or two without the the peg, maintain adequate weight, before abadoning the peg. I didn't force myself. I knew when it was time, and was motivated to do it, and was probably at 3 months, but was no full meal. Probably my fullest meal was at 8 months on Thansgivjng. Take your time, small bites, easy to eat foods. Just as they say your tongue, swallowing muscles can lose its memory, the same memory can help recover what is lost from non use like any other muscle not used in a while.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | You do and try whatever you want. That's my advice. I was soooo eager to return to normal I pulled my nasal tube out at home (w/ my doc's permission) after only 2 weeks and started eating solid foods right away. Try really soft stuff, lots of gravy things, syrup stuff, you get the picture. Have plenty of liquid available and be prepared for longer eating sessions. Your food will often get cold before you can finish.
The excess fluids will go away, usually in a few weeks and that will be replaced by the DM (Dry Mouth). The DM can take evey bit of 2 years to come nack as much as it will so be patient.
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 2013 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2013 Posts: 33 | Ok - thanks. Looking forward to better days with the throat and mouth but not looking forward to the DM. Really hoping for taste to help make this transition.
Davidcpa - at what point were you able to start exercising again (outside of light walks)?
Male age 50 SCC BOT Stage IV HPV+ Tx 35xrad 3xchemo (cisplatin). Tx completed 7/2013 MND 10/2013 (Pathology Negative) Debridement for minor ORN 7/2014 | | | | 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 | Man I felt as weak as a kitten for the first few months PT (post Tx). At first I couldn't even lift the water bottle up and on the water cooler. Calories and hydration and tons of it will help. Even driving at night for the first time PT was weird, almost scary. I bought a Camelbak and got up enough nerve to get back on my bike at 3 months PT. I felt OK but the DM sucked and made it very difficult to ride and sip water constantly. This was December. Then came my Tax Season so the next time I gave riding a try was late April. By now I was 8 months PT. I discarded that Camelbak and actually enjoyed myself. Even though the DM was still bad I found that if I didn't try and talk to other riders, chewed Biotene gum and carried an extra water bottle I was fine. Before long I was back to riding just as I was pre Tx. In fact with my weight loss for a year or so I was a better rider than pre Tx. Now I spend 5 days at the Y doing Spin and resistant equipment and 1 to 2 days on the bike. I am in as good or even better shape today than I was pre cancer. Just wish I could stop the age thing! 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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