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#80539 09-16-2008 07:13 PM
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My name is David, I'm 60 yrs old and live in Northern California. In nov, 2007, as my wife and I were preparing for a 2 week trip to Puerto Vallarta, I discovered a lump on the right side of my neck. Well, I really wanted to go to Mwxico so I didn't say anything. Shortly into our trip my wife, who is an RN, noticed it and thought right off that it may be cancer. That put a dark cloud over our trip. When we got back home I went in to have it looked into. Was sent to ear, nose, throat doc who did a needle biopsy and confirmed it was malignant. Went for a pet scan which only showed the tumor on my neck and nothing else, so, the ent doc did an exploration of my throat and found the primary tumor on my right tonsil. By now it was into jan. 08 just to find the enemy. Finally started chemo on feb 1st and radiation on feb 4. Five days a weeki for 7 weeks on the rad and chemo every wed. Had wonderful support from my wife and step son but I admit there were times I felt like giving up. In may I had a pet scan which showed that the tumor had shrunk from 4.5cm to 11mm causing much optimism with the rad and chemo docs. At the end of aug. I had another scan which showed the neck area clear of cancer however there was something nasty looking in my right lung. I pretty much resigned myself to having to go through more cancer treatments and even surgery. A needle biopsy was done and after 3 days of sweating it out I got the word that it was benign and so I am cancer free. Now I'm just waiting for my taste to return so I can enjoy some real food. I know that that my salivary glands are probably a loss so it will take a lot of liquid to wash food down but that's ok, just as long as I can eat. I'm pretty tired of Ensure. But that's pretty small stuff considering that I am alive and cancer free.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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That is a great story, David! I was born and raised in the Bay Area before moving to Ohio 14 years ago. Yeah, the taste and the fried salivary glands are not a lot of fun, but not bad at all, under the circumstances. At just about 14 months post treatment, my taste is about 85%. I can taste just about everything, but some things are still a bit off, and overall taste is a little muted from before.

As for salivary glands, well that has been a slower process, and I am probably close to as good as it's going to get. Lots of Biotene products and lots of water, and I can eat just about anything.

An inspiring story -- keep up the good work!


Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
Joined: Sep 2006
Posts: 8,311
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Senior Patient Advocate
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David,

Don't give up on the taste or dry mouth as the recovery in these areas can take up to 2 years. When I was 16 months post Tx I had a big improvement in both so as I said don't think you are anywhere near finished in the improvement category.

Watch out for your thyroid. Many of us had to start taking a daily pill months post Tx. Have your TSH levels checked regularly and especially if you feel tired and have sweats and feel cold.

Did they tell you what caused your cancer. I was a non smoker and tested positive for HPV. If you were not a smoker you are a good candidate for HPV as well.

Hang in there for a while longer and give your body a chance to recover from that barbaric treatment.


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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Posts: 309
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Posts: 309
Awesome news, David! Welcome and I pray your current health status will remain and there will be no reoccurence for you.


Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


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Good job David and thanks for coming on board and posting. Like you I am waiting for my taste to return andf a sloppy mouth at times. LOL I miss them both but mainly miss my teeth. It's been a long slow journey so gfar, but as long as I stay one step of OC, I am winning the battle. Good Luck to you and wecome to our home.


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
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Hi, I am new to the site. I am a caregiver. It is really difficult watching a friend endure chemo and radiation. He is loosing weight and I don't know how to help. He has a feeding tube but is not gaining weight. I try to remain upbeat but it is very difficult. My friend has throat cancer but was never a smoker or heavy drinker. He has had one infection with the tube and was readmitted to the hospital. The infection is gone but now he can't gain weight. Any advise?

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Thanks for the welcome. I didn't mention that I quit smoking 20 years ago and am a light drinker. None of my doctors has mentioned the HPV virus, they just kinda say "luck of the draw" because they don't know the cause. Well, I'd rather that "luck of the draw" work for the lotto but, there you go. As for gaining weight, I've been downing 2800 calories a day of Ensure and lately have been able to eat ice cream laugh and the weight is coming back very slowly. I lost 45lbs and have gained back about 8 here 6 mo.s post treatment. Everything seems to happen very slowly. Best wishes to all;
David


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
Joined: Sep 2006
Posts: 1,357
Likes: 5
"OCF Canuck"
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"OCF Canuck"
Patient Advocate (1000+ posts)

Joined: Sep 2006
Posts: 1,357
Likes: 5
Welcome to the site David. You sound like you have good perspective on your situation - you are right - things will come back but it takes time and patience is a virtue some of us have to work at!

Keep posting.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Patient Advocate (old timer, 2000 posts)
Senior Patient Advocate
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Posts: 8,311
Even today many doctors do not even recognize HPV as a cause of the type of cancer you had, much less advise the patient that a test for it exists. Mine fought me at first and I was seen at what is called a Comprehensive Cancer Center. I had to twist their arm to send my biopsy slides to John's Hopkins to get tested. That was 2 years ago. Now Moffitt tests anyone fitting the HPV profile. You may not care what caused your cancer but if you do check out HPV by clicking on it.

You also may want to check up on Carnation Instant Breakfast VHC which packs 560 calories in the same can as your Ensure. If your interested just ask for more details. It was a life saver to me. Even today I have a much harder time gaining weight than pre Tx and I seem to eat way more now than I ever could afford to.


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: Aug 2008
Posts: 716
"Above & Beyond" Member (500+ posts)
"Above & Beyond" Member (500+ posts)

Joined: Aug 2008
Posts: 716
Welcome to the site David! Sounds like your doing great...I've been here for about a month and from what I read, a lot of people gain back losses in the 16mo to 24mo post tx. I started my rad txs the other day and my RO told me take it day by day and about 3 or 4mos post tx you'll notice changes. So, I'm not going to accept my new normal until I hit the big FOUR ZERO!


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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