| | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | Well Well, I am doing pretty good these days. I am 16 months post tx and just had my 4th clear PET. Yeah!! I have gained about 15 of the 40 I lost anf am quite active again. Not as strong as before but still moving!
I still have some throat issues.Food gets stuck in my throat all the time. I did have a dialation about 8 weeks ago, fine at first but looks like it is going south again. I can live with it though and can eat almost anything I want. One anoying side effect is that food is ALWAYS going up my nose. If I cough while eating, the next time I blow my nose food will come out! Beans, meat Eggs whatever!!
Just wondering if any of you have experienced this.
I hope every one is doing well and hope you all have a great holiday season!
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | Hi Steve,
My husband Ron has the same issue with food getting caught up his nose. What helps him is he uses a sinus rinse (you can get it at any pharmacy) to flush out his nose. It's not pretty....but it works. I see you're in SoCal. What part? We live in North Hills in the San Fernando Valley.
Hope this helps,
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | | Joined: Sep 2009 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 126 | Yea, food in the nose, a regular occurrance here. I have a whole in the roof of my mouth and the obturator doesn't keep everything out. My RO suggested a water pic and that really works good to keep things cleaned out.
Sharon
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | | Joined: Sep 2009 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 96 | I also used to have a hole in the roof of my mouth but that has been closed due to reconstruction surgery. I will say that in my case it did get better after a couple of years. I think part of it is your body getting used to having it there and you figuring out ways to minimize it happening.
31 at dx 9/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
HBO for ORN March & April 2010
Fibula flap 5/10
| | | | | 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 have had 4 PETS in 16 months! That's a OCF record.
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: Jun 2009 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 71 | My speech therapists showed me a few exercises that help limit the nose problem:
Using a straw - suck a piece of flat paper - try to hold the paper up with the suction. We started with a 1/3 straw and a 1/4 paper. The longer the straw and larger the paper the more work. We progressed to file folders and whole straws.
I'm an athlete so the lung power was not a problem. The nose problem has almost completely disappeared.
Best of luck to you.
mark
11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth
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