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My dad just diagnosed

marvel1000
Posts: 2
Joined: May 2013

Heyas

I am from Australia and my dad has just been diagnosed 4 weeks ago with a Squamous cell carcinoma in one of the lymph nodes in his neck. It was removed 3 weeks ago along with 40 other lymph nodes in the area. tests come back showing it as only the one lymph node as being cancerous though. so thats good news. It measured 8.5cm in size. There was slight damage to some nerves and such in the operation, he has lost feeling on some of the right side of his mouth, tougne and shoulder. His speech is slightly not right aswell. The doctors are hopeful with time it will come back to some degree. He also needs to have 4 lower teeth removed before the treatment starts as the radio is apparently will kill them.

 

In 3 weeks time he will start some intense Radiotherapy and low dose chemo. He will do Radio 5 days per week once a day for 33 treatments. Doctors say there is a good chance that he will get quite sick from the radio. I am just wondering how other people have gone with this type of treatment? Have you become really sick? Were you okay? How dependant were you on your caregiver? How long after the treatment did the acute side effects take to go away? How long after the radio/chemo was the next step in your treatment? How are you dealing with your long term side effects? what are your long term side effects?

 

Any help is greatly appreciated.

Thanks :)

CivilMatt's picture
CivilMatt
Posts: 2959
Joined: May 2012

marvel1000,

Welcome to the H&N forum, I am very sorry to hear about your Dad.

The doctor is correct, it is no “cake walk”, it can be difficult at times, but there is something to help virtually all side effects of rads and chemo.

Since I took an anti-anxiety pill every day of treatment I was just about totally dependent on my caregiver (wife).  Others manage quite well for themselves.   It all depends on how well your body adapts to the treatment regimen.

I delt well with nausea so after the first week I wasn’t too sick.  On the other hand, radiation is more difficult and there are a variety of  issues dealing with the mouth, tongue and throat which come into play.

Things start to get noticeably better at about 2 weeks after treatment ends and then progresses slowly from then on out.

Today at 14 months post treatment I am doing well, I am eating normally, I sleep great and I have no pain.  On the down side I have dry mouth and my taste buds don’t know what they are doing.

So far so good,

Matt

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

Welcome to our corner. Sorry you had to be here, but glad you are at the same time :)

You will hear this a lot from most people.  EVERY PERSON responds differently to their tx's (treatments) and your father will be no different.

With that said, the tx for this particular cancer of the Head & Neck is a tough one.  Most people do not and can not carry on as normal during their treatment.  So in my "opinion" your dad would be better served preparing for the worst, but here's hoping he never has to execute that plan of action.

Many on here have had a feeding tube put in before or during treatment (mine was before).  I end up losing 75lbs during treatment.  After my chemo and my rads (I had no surgery) I felt my worst, I felt my worst for an entire month.  I missed a total of 3 almost 4 months of work.  My neck was burned serverly and the pain level was quite high.

Now flash forward 16 months after my last rad and I am doing very well per the docs and scans.  I hunt, I cut wood in the forest, bring it back to my house and split it, I have good energy, I can eat most anything I want, my taste was back about 85% but has gone on vacation again, I assume it will be back shorlty.  Bottom l ine is I am alive and enjoying my family, my life and the small things that annoy me with side affects are just that, small in comparison to what the alternative was.

I bet your dad will do great!  Keep us posted and be sure and read the SUPER THREAD at the top of the page (it's always at the top) ....

Best,

Tim

phrannie51's picture
phrannie51
Posts: 3727
Joined: Mar 2012

You're probably going to get a number of responses here, and what you come away with will be what both Tim and Matt said....everybody responds differently....everybody had their own "worst parts of treatment".   I had a feeding tube placed before I started treatment, too....as they were very nervous about the fact that I had no weight to lose....I only lost 16 lbs (down to 81 lbs), but I never once had to use my tube during radiation.  I was still eating eggs with salsa at the end of the third week.....then my taste buds waved good bye....and my saliva dried up.... I kept trying different things to eat, but generally speaking I just did liquid.  I had chemo every 3 weeks (3 times) during the radiation, and would feel crappy for 5 or 6 days, and snap out of it.  Like Matt I took Ativan everyday before radiation, so I needed a ride everyday to get the rads.  Fatigue was the one thing I suffered a lot from.

Once radiation was over, I had 3 more chemos.....the one drug (5FU), kicked my butt....my unused feeding tube became my only source of nutrition and hydration.  I was miserable for 3 months.  Once it ended tho, I started feeling better, and was back to work in 6 weeks.  Fatigue plagued me for another couple months.....Things get better by degrees.....you don't notice them so much in the beginning, but when a person looks back 30 days it's very apparent that things are getting better.

I'm 9 months out of treatment, and the only side effects that are still hanging on is the lack of saliva (about 30%), and my taste buds are still just taste aquaintences.....I think they will come back to almost normal given time.....and time is something I have.

The BIG essential advice points for getting thru this treatment as good as possible are:  take in as much nutrition as he can;  take in as much water as he can, and then some; sleep as much as he wants; swallow something everyday, water, Ensure, doesn't matter (he doesn't want to lose his swallower).....and stretch his jaw (open wide), stick out tongue and stretch it....stretch his neck muscles every day (can be done watching the TV). 

He's going to get thru this.....that's a fact.....a year from now this is all going to be in his rear view mirror (and yours Smile).

p

 

yensid683
Posts: 227
Joined: Apr 2012

to the site that no one wants to visit, but you'll find not just great information, but great people to help you and your dad through the next months.

I will echo my 'family' members sentiments, progress through and reaction to treatment is different for everyone.  I was diagnosed (dx) with base of tongue (bot) squamous cell carcinoma (scc) with involvement of the left cervical neck nodes, treatment was in two phases, induction chemo and then concurrent chemo and radiation - 33 treatments, just like your dad is facing. 

Radiation treatments to the neck causes your salivary glands to go to sleep, giving you a very dry mouth.  Think of a long hot hard day of yardwork with little to no water and then going into the house and trying to eat crackers.  Taste buds go to sleep too, so what you try to eat has little to no flavor, just texture.  You will get a hell of a sunburn, both on the skin on the neck and the inside of the throat.  That 'burn' is what really impacted me.  I liked to describe the sore throat it at its worst as a freshly skinned knee, dragged over several yards of hot crushed glass and then mopped with a couple of coats of fire.  Pain meds took the sharpest edges off and helped me function.

I too had a feeding tube, it was placed a week before radiation treatments started and while I soldiered on for about 3 weeks with solid food, milk, eggs etc, by the end of the third week I could barely swallow water let alone any real food.  I lost a total of 40lbs through it all, but I could well afford to lose it.  The feeding tube was removed three months after treatments ended, I was on 'real' food, not many items, but enough calories to keep my weight up.

I found that I was slowly getting better about 2 weeks after the treatments ended, and have been improving steadily but slowly ever since.

Some keys to successfully dealing with this.

Hydrate.  Let me say it again, hydrate, hydrate hydrate.  Drink lots and lots of water.  The treatments are killing off tumor (and other) cells and the body will break down the dead cells and then eliminate the by-products through the kidneys.  The fluids will help flush the toxins and keep blood values in a good range, and that helps you feel better.  Even though he may feel like he'll just give back what he drank, keep up with hydrating, it really helps

Swallow.  Keep swallowing no matter how difficult.  Even with a feeding tube I kept swallowing, my speech therapist told me that the muscles that control swallowing can forget how to work if you don't keep actively swallowing.  It will be hard and pain meds will help facilitate swallowing, but keep it up.

Medications.  Your dad's doctors will prescribe pain medications.  He will need to take them as it helps him to swallow, not just the ever important water, but foods too.  They'll also prescribe anti-nausea meds, take them too.  Medications (meds) won't eliminate symptoms entirely but they will allow him to function.

Caregivers.  Dependency on a care giver will depend on his degree of disability for handling normal functions.  When he is taking prescription pain meds or anti-anxiety meds he should not operate a car, it is definitely not safe to do so, so he'll need someone to drive him to appointments.  He will likely be able to do a lot of things for himself and his caregiver/caregivers should understand that he will need to feel independent where ever possible.  He'll need support emotionally, as will those in the caregiver role. 

Nutrition.  A dietician should be in his care plan, I recall being told that I should get all the protein, calories etc that I can.  I was given permission to follow the 'un-diet', meats, fats, whole milk, whatever I felt like eating.

Exercise.  Rads will bring about fatigue, but surprising me to no end, my doctor said that getting some exercise, simply walking around the neighborhood for example, will help with the fatigue.  Be careful of sun exposure too, his skin will be very sensitive to sunburn. 

Eating and drinking.  He will likely feel like he does not want to eat.  He will need to and he will understand that he has to, but too much pressuring by caregivers (I won't call it nagging), can make him NOT want to.  Studies have shown that the more caregivers pressure a patient to eat and drink, the less they want to.  It was the same in my case.  My wife was constantly after me to eat or drink and I hated that she treated me like a 5 year old like that.  I did keep swallowing, I tried all kinds of foods, and most of it was very nasty, but it did work.

Balance.  Not the balance of dizzy, but the balance of the patient/treatment/medications/caregiver aspects.  Keep everything in balance.

Communication. Keep the lines of communication open.  stress will build on him and you and whomever is involved in his disease and treatment.  It will be a long time.  33 radiation treatments (rads) will take about 7 weeks.  It will be several weeks to recover/heal from rads to be functional.  Keep the animosity to a minimum.  Understand that he will get grumpy, it's not him, it's the disease and treatments.

He will get better, it will take time.  I am 10 months out of treatments and have made a lot of great progress, I was back to work in two months, I'm able to do just about everything I could before treatments (by the way, I had two neck dissections, one 3 months post rads and one 8 months post) and the nerve issues did dissapate.  My surgeon gave me physical therapy exercises to do and it helps with restoring feeling and fucntion.

I hope you keep us posted on your dad, come and talk to us anytime you want.

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Nothing really to add that my fellow survivors haven't covered....

You all have learned your lessons well....

JG

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

that I can add to what all the above had said is my rad Dr told me to put Aquaphor ( its not an Rx you can buy it anywhere ) on my neck twice a day . Once after Treatments (tx) and once more at bedtime . You need to wash it off before going to tx.Yes it is very greasy and some on here didn't like it so they will probably tell you some of the other things that you can use instead, but I never had any sores on my neck . I started using it in the very beggining and all I had was like a bad sunburn and then some pealing.My best to you and your dad . Hopefully he wont have all of the dreaded side-effects.

P.S. I'm sure your Dads Dr. will tell him what he wants him to use.

Peggy

patricke's picture
patricke
Posts: 468
Joined: Aug 2006

Welcome to the forum, but I am sorry that you have to be here.  It's been 12 years (I had stage IV base of tongue) since I made the 35 trips to the radiation room, but it was memorable.  The after effects  of radiation for me was mainly big fatigue, I just felt wiped out, and didn't feel like moving. I didn't have chemo.   There was collateral damage, as they say, in the hardening of some of the neck tissues on my left side where the beast invaded my tongue, and the entrance of my esophagus was stiffened and closed, so I have had a feeding tube for the past twelve years.  Fortunately, none of my teeth were involved, so I still have them all.  I had dry mouth for 10 years, but miraculously saliva returned 2 years ago- go figure.  What I have learned about the recovery process, and the process of establishing a new normal is that both take time, lots of time, and lots of patience, along with a positive "I can do this attitude" (it's a marathon, not a sprint, so pacing, and expectations are important).   That being said, as you have already heard, each person puts their own spin on the ride, so see how your dad responds.  It's no walk in the park, but when he gets through the tunnnel, he will, no doubt, enjoy a walk in the park.

PATRICK 

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