Newbie - SCC stage 3 tonsil

Glad to see you join CoryLee. Other than the mess up early on to get diagnosed, what you describe now is pretty normal. You are at a critical point in radiation therapy., Starting about the third week, side effects start popping up and you realized you had a two week vacation before the road ahead gets bumpy.

There are lots of first-hand suggestions here and plenty of moral support, so visit often.  A lot of qestions are answered in the superthread can be found in the first post here.

There are only three things you need to do to get through radiation and recovery.

HYDRATION - NUTRITION - PAIN MANAGEMENT

Keep the fluids flowing.

Eat eat and make yourself eat.

If it hurts, take a pill.  Why suffer? In fact, pain slows healing.

Welcome

don

CoryDee said:

I'm working very hard on hydration

Hello and thank you for replying donfoo. I wish I could eat but I haven't found any food I can get down since the throat pain arrived. As far as pain meds go I was started on oxycodone since I'm allergic to hydrocodone but it did nothing so then I tried fentanyl patch and nothing so now I'm on liquid morphine. I'm definitely not taking it as often as I probably should out of fear of becoming addicted. My oncologist told me not to worry about that. The Stanford suspension with xylocaine does help enough that I can swallow fluid though. The nutrition part is where I'm definitely struggling. Thank you for the encouragement and I'll start reading for ideas of food I might be able to swallow.

Cory

Sounds like you are well acquainted with the standard pain meds. Typically, the fentynal patches always work, just depends on the patch dose. My pain med route went hydrocodone - oxycodone - morphine sulfate. Next step would have been the patches.

When having trouble with pain while swallowing what you call the "Stanford suspension" is often prescribed although there is no specific formula or name. Yours has liquid lidocaine so that is great! At its worst when I could hardly swallow I would use the magic mouthwash for some minutes then let it tricke down my throat. Next liquid lidocaine to numb the back of my throat than just do my best to get down as much soft/mashed foods.

What came in handy to easily mash small amounts of food is a baby food strainer/masher. They are 10 bucks at Walmart and do a really good job of mashing just about anything to a texture one can slide down the achy throat. This way you can eat darn near anything irreguardless of its original texture, a few cranks and it is baby food grade. :-)

CoryDee said:

Thank you for the welcome

I feel so much support here already. What a difference people who care can make in lifting another's spirits. Well, undoubtedly this is not a family anyone wants to join but I'm happy I found this group.

Cory

I too was on the hydrocodone - oxycodone - morphine sulfate, liquid morphine and fen patches and boy did I sleep like a baby. I also had some lollypops that had a pain med. Since I could not swallow pills, everything was liquid. Would sleep for 10-12 hours and it would take 2-3 hours to wake up and go to work. After awhile I got tired of feeling like vegetable and stopped cold turkey. Didn't tell anyone until 2 weeks later. One side effect was I could not sleep for 3-4 days as my mind was swimming. As far as you taking pain meds,just follow your doctors orders on how much to take and you wont have any issues. Its where the patient decides to up his dosage where problems occur. And don't wait for the pain to start, just take the meds as prescribed as once they wear off it seems to take much longer for the pain to go away.

Jeff 

CoryDee said:

Thanks Jeff

I actually feel guilty asking my doctor for a refill even though he encourages me to take the pain med on a schedule to stay ahead of the pain. The liquid morphine helped when my jaw hurt but it hasn't hurt for a couple of weeks and it doesn't really touch my throat pain but I don't know what else they could give me so I haven't asked. I don't want to look like a drug seeker. Logically I know I shouldn't worry about that since I'm using way less than I should. But it seems liquid morphine would be the end of the line.

Cory

there's still more in the drug line up....nobody is going to think you're a "drug seeker" during cancer treatment!!

Has your Dr. mentioned a feeding tube?  Most (not all).....but the great majority of us ended up with a feeding tube somewhere along the way...nutrition is SO important for healing and staying as strong as we can.  I used Boost VHC, instead of Ensure or regular Boost, because I could get 530 calories down in 8 oz.....that was orally....and later with the tube.  I only lost 17 or 18 lbs during treatment, which isn't bad considering many lose 30, 40....even up to 80 to 100 lbs during treatment. 

This last half of radiation could get dicey so maybe run the feeding tube by your Dr. just to see what his take is on the subject.

p 

CoryDee said:

Feeding tube

A PEG tube was mentioned to me last week by my oncologist but I really wasn't open to hearing the details. I might want to reconsider and at least hear him out. He said I would still have to keep swallowing or my body would forget how so I figured why think about a feeding tube if I still have to swallow.

I have a refill on my pain med so I'll ask what alternatives there are before I go get it filled. I'll stop feeling guilty about it.

Seems you did very well with your nutrition. I know I don't have 20 more pounds I could lose. Thank you for the encouragement, it means a lot because my parents and daughters all acted shocked at the possibility of a feeding tube. They've just never seen one so they just don't understand. They would support whatever and besides I'd be the one pouring my own food down it. 

Cory

...give some serious thought to the PEG tube. Most people cannot go through the entire treatment without using the tube at some point. If you get too late into the treatments and can no longer swallow properly it could get uncomfortable getting the tube put in because your throat will be too radiated at that point. They told me that if I waited too long and they could no longer put the PEG tube in I would have to feed through a nose tube which did not interest me in the least. Give it some thought.

CoryDee said:

Ok I will

I'll give it some serious thought. I won't see my medical oncologist for 3 wks (2 weeks post Cisplatin) but I do see my rad. oncologist weekly so I'll talk to him about it this week and ask lots of questions. Ugh, a nasogastric tube doesn't sound too good to me either although the procedure would be much simpler and easier to remove.

Cory

For the old timers, it will be hard to hear me state I am pretty neutral about PEG. BIG LOL. After a lot of time here and learning how really each of us has a unique challenge as we face cancer, there is no right or wrong answers about PEG.

Facts are quite a few make it through without a PEG, shoot some even skip through with hardly any weight loss or side effects. Some come in on the heavy end of the scale and can afford to shed plenty of pounds. Maybe wait and see. If you are quite slim going in and losing any weight is a health concern, then get a PEG early. Fact is getting a PEG placed is not a big procedure and gets into service very quickly, a day or two.

Fact is swallow reflex is something that can be lost from loss of ongoing swallowing. Fact is the more you swallow helps with fewer swallow long term side effects.

You will hear plenty from both side of the PEG topic but you need to do what best suits your specific condition and none of us here are equipped to offer anything other than our own personal bias and experience. ]

Get informed and ask your doctors probing questions to enable you to become better educated so you can make the best decision for you.

|Good luck

You have the one thing no doctor or friends can give you. A STRONG POSITIVE ATTITUDE. This one thing will prove over time to be your saving grace. Another thing to always remember this is a long marathon not a sprint. In my 15 years of running this race against CANCER I've had many great things happen & yes bad too but that wonderful attitude of yours will see you through.  You will go far because I've been where you are at alone. Stay Positive

Guzzle said:

Peg

Cory, I got through without one but most swear by them. A nasal tube meant being an in patient where I was treated. I wasn't given a peg but I suppose if you have one you don't have to use it unless absolutely necessary. A couple of blogs on word press give good insight. Theo the radioactive man and gammaraygary (not me!) if you fancy a read. Good luck. G.

You do have to keep swallowing or can lose the ability. You can survive on Ensure or the like without food. Try soft boiled eggs. You may want to ask about a g-tube vs. a PEG.

I have had both Cisplatin and Erbitux/Taxol. Cisplatin did not cause hair loss but the Erbitux/Taxol did. My guess is that one dose may have caused your hair loss but I don't think it is the Cisplatin.