Brother has tonsil cancer

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Brother has tonsil cancer

by Maura70 on Sat Mar 09, 2019 12:02 AM

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Hi. My brother is  66 years old and he was just diagnosed  with tonsil cancer.  I am worried for him.  HE was told he will have to have radiation,  chemo to shrink it and then surgery.    It is a fairly large tumor with some metastasis.  

 I would like to know how many. Months it would take to get through all these treatments.   Should he see a cancer dentist or have all his teeth pulled out?   He does not have good teeth.  Should he see a dietechian?  He is very thin.

I am making vitamin smoothies for him.  

RE: Brother has tonsil cancer

by Sdurnell on Sat Mar 09, 2019 07:57 AM

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Maura,

Welcome to you and your brother, but sorry you have to come here.  I'm thinking that if his metastases are all local--in the lymph nodes--that his prognosis is pretty good.

I suggest he see a dentist who has experience with cancer patients who've had radiation to the mouth.  It is a brutal treatment, and it does a lot of damage to teeth.  Plus it causes great reduction in saliva, so that protection is gone too.  If his teeth are bad they will probably want them all pulled, and his doctors will need to figure time for that and for healing from it to plan his treatment.  My teeth were OK but not my gums, so I had mine all out two weeks before radiation began.

Radiation usually takes 6-8 weeks of daily (M-F) sessions.  Often chemo is done periodically during radiation.  It sounds like he will have surgery afterward, so they will allow some time for healing after radiation before surgery, but I'm not sure how much.  I had my surgery before rads.

Seeing a Registered Dietitian is a very good idea.  Many cancer centers employ them, so his doctor may be able to set up an appointment.  Healing from radiation is a long, slow process, and weight loss is very common.  He will need a lot of protein and calories just to maintain his weight, but most of us lose weight, sometimes quite a lot. 

I lost over 25% of my weight and would not have made it without a feeding tube.  Some doctors recommend getting a tube placed before radiation begins, while others insist on it.  A third group takes a more wait-and-see approach, which is what happened with me.  But halfway through I developed a pneumonia and I'd lost so much weight that I asked for the tube.  I had it for over a year and it saved my life.

Your brother is very lucky to have a sister like you who is an active part of his support team.  He will need you;  know that being a caregiver is quite a difficult job as well.

All the best,

Susan

RE: Brother has tonsil cancer

by Maura70 on Sat Mar 09, 2019 07:14 PM

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Dear Susan 

Thank you for replying.   Why did you have to. have the feeding tube in for a year? I read  there is sometimes a 5 year remission and  then a recurrence.  That's frightening. 

Will he be able to live a normal life?  Will he feel sick all year?

  

RE: Brother has tonsil cancer

by Sdurnell on Sun Mar 10, 2019 02:29 AM

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Maura,

First of all, nearly all recurrences happen within the first two years.  In fact, my ENT/neck surgeon told me I was cured after two years.  But my radiation oncologist insisted I be monitored for five.

He will be able to live a "new normal" life if his treatment is successful, which most are.  If his tumors are HPV related, his chances of being cured are even better.  What his new normal will be is impossible to say ahead of time, but most of us have a good quality of life.  Nearly everyone, however, has some permanent side effects, mostly from the radiation.

He will feel much better after the first year.  Recovery is quite slow, but steady.  The most common side effects are loss of sense of taste, pain and stiffness in radiated areas, fatigue and weakness, low or absent saliva production, very heavy mucus, and weight loss.  After a year there should be marked improvement in all areas, with the possible exception of saliva which sometimes takes longer.

My sense of taste was destroyed, but worse, it made everything, even water, taste terrible.  After a year things just didn't have any taste, which was better.  After two years most foods tasted OK, and another six months later I could even taste wine and chocolate again.

I didn't have a lot of pain for very long after treatment, and what I did have was mitigated by meds.  I know there is a crackdown on opioid medications these days, but cancer pain is what they are best for, and if used as directed he should not have to worry about getting hooked.  I never used my oxycodone as often as prescribed, and eventually only at night. I took it for a month or two after treatment and then quit.

Stiffness can be helped with "gentle massage" and some folks go to massage therapists who specialize in cancer patients.  My PT was helpful too.

Fatigue is to be expected, but it doesn't go away after treatment ends.  The body is recovering from the radiation damage, and he will need more sleep than usual.  After a year I no longer needed naps, and after two I was back to my old self as far as tiredness was concerned.

Saliva is a little trickier.  Low production makes it nearly impossible to eat some foods.  For me it was bread and rice and meat.  But there are other foods that can take their place.  We keep water bottles with us and drink a lot with our meals to get food down, and often use special products for people with dry mouth.  I am 8 years out from treatment and I have adequate saliva now, but not great.  I think it's still s-l-o-w-l-y getting better over time.

Most of us get very heavy, mucusy saliva near the end or after treatment for a while.  Mine didn't last very long, maybe a month of two.  I took a little pail and box of tissues with me everywhere.  If it becomes severe, there are suction machines that can help.  And rinsing and gargling with salt and baking soda in lukewarm water is good for this as well as for pain.

Weight loss is a big deal for a lot of us too.  With the obesity epidemic some folks don't mind losing 40 or 50# but some of us can't afford that, and it sounds like he is one.  There are many reasons for losing weight, including a messed up sense of taste, difficulty swallowing, pain, and just feeling bad.  Many people just can't tolerate taking in enough calories to sustain themselves, let alone recover from the "therapeutic damage" of treatment.  This is where feeding tubes are real lifesavers. Some have them put in prophylactically, which I recommend if he feels he may have a weight problem.  But if you don't do it at first, it's possible to have one placed during treatment like I did. It didn't interfere with my radiation at all.  I lost 36# and was skeletal.  It took me several years to put some back on, as I couldn't gain any when I was on the tube.  But I found ice cream to be a great aid!  (You also don't get my sympathy from others about having to gain weight!)

I had my feeding tube longer than most because I had a rare side effect that no one could understand for a while.  I was never able to swallow much after treatment, and a few months later I couldn't even get a sip of water down.  I failed swallow studies and speech therapy designed to get my swallow apparatus going again.  Eventually they figured out that my throat had swollen shut completely, and I started a series of throat dilations by a great GI.  After several months of those, I could sip, and a bit later I could actually eat real food, but very carefully!  A few weeks later I was eating enough to maintain what weight I had left, but I kept the tube in because I couldn't swallow my meds.  I had it put in the end of January and took it out myself (a story for another time) in May of the next year.  

Most people don't keep their tubes that long.  But a few never get off them.  Like all the other side effects of this brutal (no other word for it) treatment, it will vary significantly from one patient to another, even among people with the same diagnosis and treatment.  We are all quite different.  Some brave souls are able to continue working right through it all, which I cannot imagine.

My "new normal" is good.  I had my 60th birthday during radiation, so similar to your brother in age.  I was able to do some substitute teaching three months after finishing treatment, as soon as they let me get dentures.  The middle school kids were interested in the feeding tube, which by then I had in a backpack pump.  Now I am fully retired and volunteer at a local animal sanctuary, usually three half days a week.  I am also on the board of the area food bank, and once a month I work at a low-cost "fix," where volunteers spay and neuter 100-200 cats each time.  Our adult daughter has some disabilities and lives with us.  She is very interested in dogs, so we spend time in training and showing them as well.  I work in our fairly big garden, which is mostly flowers (you can buy groceries in the store!), and I sew a bit.  I have some limitations with eating, due less to the saliva now than to my dentures, but I can always find something on the menu to eat--hooray for soup!

Treatment gave me life, and life is good.

Susan

RE: Brother has tonsil cancer

by mtkjohn1 on Fri Jul 19, 2019 02:56 PM

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thanks Susan, Great update of what to expect, and where you are :-)

john

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