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Kandi Offline OP
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My father is having problems with swallowing and the taste of food changing once it gets to his throat. The taste of food is almost back to normal in his mouth. Eggs, chocolate & wheat toast were the first things to taste normal. Anything sweet is over exaggerated & he cannot tolerate it. My Dad really wants to eat. He lost his taste buds & his saliva glands were damaged in the middle of radiation therapy in March 2013. He has not eaten since then. He says that food tastes normal until it gets to his throat and then the taste turns into something so foul he can't continue. He also says that his throat at the base of his neck is dry and remains dry regardless of how much water he drinks. His throat feels sticky and he has had to dial 911 twice since March when things like pills & eggs seem to become stuck. What can he do to get saliva flowing in his throat again? How long dos it take for normal swallowing to return after a tumor is removed from the side of the neck?


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Hi Kandi,

It would be in your Father's best interest to see a SLP for a swallow study.

I'm 16 weeks post Tx and while I can eat most things, I'm still healing and my swallowing is not back to normal yet.

I still have swelling in my throat and tongue and it's possible that's going on with your Father too. I can't begin to imagine why the taste changes so dramatically.

I have the same issue of food and pills feeling like they're getting caught in the back of my throat. My SLP showed me on the scope that we have a naturally occurring pocket just below the epiglottis. Normally, our swallowing mechanisms help to push food right past that. In my case and in others, due to the damage of radiation, our swallow functions are weakened or compromised. While everything is working enough to prevent aspiration, it's not totally back up to speed.

If he's not doing swallow exercises, he should be! I posted a list of exercises given to me from my SLP at Johns Hopkins. You can find it HERE

We're all different in the rate we heal and return to what would be considered normal.

Positive thoughts and prayers

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
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"OCF Canuck"
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Maybe he can put it in his mouth and chew it and wash it down with say chocolate.milk? Or something else he can tolerate? Experimentation is the only way smile hugs


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Kandi Offline OP
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Thank you! Your link will not open but I was able to follow a prior post & get a copy of the exercises. I don't know why they are not checking my fathers throat, swallowing reflex or ability to eat? It is like they skipped over that part of his treatment? No dietician, no nutritionist, no speech pathologist - nothing. He is considered part of the head and neck cancer group but he has skin cancer that is now in his lungs. Does that make sense? My father has Basolsquamous Carcinoma. It started on his neck. He had a partial neck dissection in November 2012 followed by 33 raditaion treatments ending in March 2013. Now he has spots in his right lung. He lost his ability to eat & swallow in the middle of radiation. nable to eat and they do nothing about it. No suggestions, no referrels almost like he is not heard and I cant figure out why?

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Hi Kandi,

I'm glad you were able to find the post. It's surprising to me as well that swallowing and nutrition are not being addressed with your father. Is he being treated at a CCC? I had a SLP and a nutritionist as part of my team.

You may have to act as an advocate for your father to get him a referral to a SLP. Radiation is brutal and if he has already lost his ability to swallow halfway through, it's not going to get any better.

Remember... a squeaky wheel gets the grease wink

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
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It takes time, and even at 5 months is early. There are taste buds all around the mouth, and in the back of throat, and may have been where most of the radiation was directed at, if oropharyngeal cancer, and could be reason for the continued difficulty in the back of throat area, and takes time for taste buds, nerves to recover from radiation, and chemo, if given. Saliva and taste go hand in hand, and also helps moisten the food to swallow. Drinking water, lemon water, chewing gum, hard citric candy, even sucking on stone fruits may held with saliva. Milk has enzymes that replicates saliva, coats the mouth. Sugar increase salivation. Adding healthy oil to foods may help with swallowing, plus adding extra calories, and taste. I have an oil mister bottle called misto. Zinc supplement may help with taste buds.


10/09 T1N2bM0 Tonsil
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One day I would LOVE a particular food and my wife, so happy for me, would go out and buy tons of it. The next day I would hate that food.


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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Kandi Offline OP
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My Dad doesn't have oral cancer. He had a lump on the side of his neck (outside on top of the skin) about the size of a pencil eraser for many years that suddenly began to grow in Oct 2012 so they removed it & found it was a basolsquamous carcinoma tumor. The said that Basol & squamous are two types of skin cancer. He had 33 sessions of radiation afterwards that ended in march 2013. They thought it was successful. His pet scan shows spots on his right lung in June 2013. They did a needle biopsy in July 2013 & confirmed its the same type of cancer. Because his tumor was on his neck, he is put in the head and neck cancer group. He was not given the same type of work ups that the average person gets. At first I thought it was because they started his surgery thinking it was not cancer so nobody planned anything in advance? Now I am not so sure.

They have had plenty of time to add specialists to his care since his surgery in Oct 2012 & still he has no preventative care, or any type of on going assistance. I am trying to figure out what should have happened & find the type of care he needs to start it now. He has great insurance. He has a catastrophic rider to bridge the gap on anything they do not pay 100% so he should be able to get quality health care. Right? They suggested he see his dentist before radiation.

No one put him on anything to prevent damage to his saliva glands or throat during his treatments. No one told him about anything to help the burns on his chest & throat area so he endured it. He has not eaten since Feb 2013 & has no feeding tube or iv therapy. He has survived by eating scrambled eggs he blends with chocolate ensure until its liquid and then pours it down his throat twice a day. He drinks water inbetween & has lost almost 80 lbs since his surgery. He has told them many times that he wants to eat & cannot do it & no one has done anything for him.

I started going with him to his appointments & fired his Oncologist because I felt he did not have enough experience (at 40 years old with 4 1/2 years at being a doctor) to handle my Fathers case. I took my parents to this doctors office to hear the results of the biopsy & he was cautioned in advance several times not to speak in front of my mom if it was bad news - and he ignored all requests. He just "blurted out" that he was right & it was the same type of cancer now in his lung. He said there is no cure. Then he said there is no hope so don't fool ourselves. He said my Dad had about 2 - 3 months tops before death. He said my Dad could try chemo if he wanted to but he doubted he would be able to handle it (due to back problems & inability to sit in one place very long). He said with chemo we might get another 30 days but there is a the quality vs quantity issue we need to consider first. Then he said if you want to try chemo don't wait and lets get you started now. He suggested chemo with Erbitux at a "standard" or "average" type of therapy. I declined, after I got a hold of my father and then my mother which were both freaking out at that point.

I took him to another doctor for a second opinion who said totally the opposite about my Dad.

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If your father is unable to eat and sustain himself he should have a feeding tube. Talk to his doctors about this right away. He probably feels terrible without getting proper nutrition and hydration. His heeling will be compromised without this.

It also sounds like your father was not treated at a CCC. It would be a good idea to go for at the very least a second opinion at one.

Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
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3/09 teeth out, trismus
7/2/09 recur, Stg IV
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3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
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OC 3x in 3 years
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"OCF Canuck"
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I agree - he needs a feeding tube if he wants to heal and fight this thing he needs a lot of nutrition - protein in particular and not necessarily meat based. There are other things out there other than ensure, that have more nutritional punch and higher protein. Try making him a shake daily with fresh fruits protein powder and veggies (even a scoop of veggie greens if you can) he can have a few daily - add flax, and make sure he gets a lot of fluids.

Chemo will not cure this type of cancer and lung mets are hard, for this you should have him at a comprehensive cancer center they take a team approach to his care, from nutrition to radiation oncologists to seeing that he sees the right type of dr. At this point I would push to find out how involved the mets to his lungs are - if its just one nodule and they are certain it's metastacies from his skin cancer then they may be able to surgically remove it - there are also clinical trials available at a comprehensive cancer center. Christine generally posts a list of those - find one close to you and get him in there. Hugs and best of luck.

Last edited by Cheryld; 08-14-2013 06:53 AM.

Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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