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Joined: Jun 2014
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Joined: Jun 2014
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dad is now six weeks out from last radiation. he has white stuff on tongue which doctor says is not thrush but hyper-something tissue. Dr has way of throwing out terms real fast and making is seem that we must be really stupid for not being familiar with the term. Is this white stuff normal? Will it go away? Ay info is helpful, doctors are useless.

Feeling really frustrated today


robin
My dad age 62 lymphnodes in left cheek removed (two cancerous) chemo/radiation ended May 31, 2014
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Hi Robin - Many of us have gone through this "doctors are useless" phase before you. You just need a little schooling on how to be a good patient advocate. That's one of the things we do here to help the new guys, so read on.

When I didn't understand the rapid fire super short answers my doctor gave me I just told him to stop, I need more detail, in layman terms and slow down. More than once I asked him to explain it again, in different words. He did. Initially he was a little irritated at me, but over the next few visits we developed a nice working relationship where he became very helpful in answering my questions and was patient with me until I understood the answers to my questions. By the end of treatment he would ask me on every visit "what questions do you have for me this time" instead of bolting for the door at the earliest opportunity.

I asked him once why they always start off with the super short answer to patient questions. He replied, most patients don't want to know what is going on with their disease or treatment. They just want to get it over as quickly as possible and not have to invest any personal effort.

Once your doctor knows you really are serious he will take the time to teach you because he knows you are being a good patient "advocate" and good patients and good advocates get better results in treatment.

So, just be a little more persistent. Show him you are serious and won't take the short answer as being sufficient. If that doesn't work throw the "I just want to be a good patient advocate" phrase into the conversation, that will make him/her come around. And lastly, don't overlook the nurses as a source of answers to your questions. They are often the most helpful of all.

Good luck
Tony





Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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Could be Chronic Hyperplastic Candidosis (Candidal Leukoplakia). Tony has good suggestions in speaking with the doctors.

Good luck


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






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Is there pain involved?


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: Nov 2013
Posts: 104
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I had this or something very similar. It was also called hairy or black tongue. Mine hadn't gone black but it was surely white.

It was mostly due to eating soft foods and the natural cleaning that happens when you eat rougher food wasn't occurring.

Tongue scraper made me gag, so I had this until my diet consisted of more rougher foods.

In my case it does go away.


Last edited by BrianPK; 07-18-2014 08:38 AM.

Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear

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