| | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | That's more like it. Now concentrate on getting that mouth healed and his taste back so he can enjoy all that fine food in Tuscany and Greece.
Is he free of thrush? What color is his tongue? It should be pink. If it isn't this is some of what is impeding his taste. Have him brush it lightly, back to front, two or three strokes, with a soft toothbrush when he does his teeth. This will slowly remove the gunk left over from thrush and radiation.
Now im jealous. We haven't planned anything this year. Enjoy it.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | One other thing you might try that helped me heal. The dietician put me on Zinc Sulphate (which is supposed to improve taste and promote healing), 500mg of Vitamin C twice a day and multivitamin like Centrum. I had most of my taste back at 6 months, had to eat by mouth because never had a peg, and had gone back to work full time 3 weeks after radiation was done, way too soon but I did it. Check with your doctor before trying any supplements, but it might be worth a try.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | OP "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | Hi Eileen,
It depends on the days, but I would say 5 out of 7 days his tongue is pink. he does get fry daus where the 2 tracks at the center of the tongue are yellow. But these are his dry days.
He takes Feroglobin which has iron, zinc and vitamin B12.
His taste buds are getting much better and his mouth now can cope with various temperatures like ice cream cold and warm. a month ago everything had to be room temperature for him to tolerate it.
You must be incredibly strong if you went back to work 3 weeks after rad! We moved house 3 weeks after Martin's rad but we had movers (and me) doing the lifting. Martin slept as soon as the bed was put up! for weeks he slept 16 to 18 hours a day!
He is better now and only sleeps 12 hours a day, but couldn't work yet.
We will only go to Greece if martin feels up to it, Florence is an almost sure thing, by then if he improves at the same rate, he should be ok to travel.
Take care. Maybe you can go on holiday somehwere near by you haven't visited. We spent a weekend by the beach last year and the beach is only an hour and a hlaf away! But it still felt like a holiday!
Cecilia
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I think you get him to brush more than a couple of strokes. Get hm to brush back and froth sideways on the sides of itf it, under as far as he can the roof of his mouth and do a few each direction. I do this as instructed by my Dr. You wil be surprised at what might come out that is hidden.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | 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 | Believe me brushing will not always get rid of any coating on the tongue. We are currently discussing this in another Thread.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Ceclia,
One of the reasons I have no vacation planned is we rent a small house at the New Jersey shore for the summer and go there every weekend. I have tons of vacation coming so I plan to work 3 or 4 day weeks most of the summer and spend more time at the beach. My landlady is 84 so I don't know how many more summers I will have this rental. If it ever warms up, it hope to put it lots of use this summer. You are right. The beach is a real cureall.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | OP "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | Wow, that sounds lovely. Is the water warm in New Jersey? Having grown up going to the mediterranean (which is warm), I find the ocean very cold here. Rather like jumping in a bath full of ice cubes, but English people here don't seem to mind it.
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Right now the ocean is still in the mid 50's here in NJ which is rather cold for this time of year. This means you are sitting on the beach in your snow suit rather than your bikini if the wind is blowing off the ocean. By mid June it should be in the mid to upper 60s F. and July in the low 70's. I like it around 68-69 degrees but of course I can no longer go in the ocean because of my trach. But watching and listening to the waves is very relaxing. We love it.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | 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 | Right now the water temp on our beaches is 82. That's the way I like it.
BTW, you will die within hours unprotected in 60 degree water.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | 82 degrees is a bathtub. No thank you. Besides in NJ that means jelly fish and all sorts of other bacteria. High 60s , low 70s is what you want in NJ.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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