Newbie - SCC stage 3 tonsil

CoryDee

Shell_7801 said:

Pity Party is OK

I think it's ok to have a major pity party now and then.  As a matter of fact I believe it's an integral part of the process.  I remember my grandmother telling me in times of hysterics, "let it out honey, let it all out".  It's like a cleansing process that launches us back into the fight.  Spend a moment, or two, dwelling on all of the negative things.  Get mad, cry until your eyes swell shut and the snot is running out in gallons.....and then..... take a long breath and look forward.  My doctors didn't listen to me either and I was right when they were wrong.  I struggled to forgive that but quickly realized I had to, there were too many other things much more important that required that space in my head.  Good riddance to the "wrong man", how helpful could he have possibly been?  And "Holidays" are man made capitalistic events....don't get me started.

You are not alone.  I care and I understand.

"Let it out honey, let it all out"

 

Shell

SSC Stage 3a Tonsil

Thanks for making me laugh

 Shell,

You described how I looked yesterday perfectly! I think your grandmother was very wise. I'm feeling better today after reading all the encouraging posts here and I'm so thankful I found this group. Sorry to hear your doctor didn't listen to you and I'm going to take your advice and put my energy into the fight against this dreaded disease. And you are right about the "wrong" man. I've got to get through this and onto the rest of my life. Best wishes to you and I'll see you here. Thanks for the words of encouragement, it really helped my spirits.

Cory

CoryDee

debbiejeanne said:

wow CoryDee, you've had to

wow CoryDee, you've had to deal with a lot.  i'm so glad you are here but very sorry you need to be.  like you and many others here, i also found out who my "real" friends were and I had VERY FEW.  i think a  lot of people just cannot deal with serious sickness, at least that's what i tell myself.  i have to say I think Shell said it perfectly, "I think it's ok to have a major pity party now and then.  As a matter of fact I believe it's an integral part of the process.  I remember my grandmother telling me in times of hysterics, "let it out honey, let it all out".  It's like a cleansing process that launches us back into the fight.  Spend a moment, or two, dwelling on all of the negative things.  Get mad, cry until your eyes swell shut and the snot is running out in gallons.....and then..... take a long breath and look forward. "  its not a pitty party here, its surviving.  we are here for each other for the good and the bad days because we all understand.  you never have to worry about sharing a bad day, we've all had them and still do, even long after tx.  about the bf, he picked a terrible time to be a pri*** and leave but good ridens to bad rubbish.  he did NOT deserve you.  you will make it through this and we will be here to help you.  drink as much as you can and swallow everyday, even when it hurts, that is very important.  you are half way thru rads so you will be ringing the bell before you know it and we will be here to celebrate and do the happy dance with you.  there is light at the end of the tunnel and life after cancer.  stay stong and positive and know that we are always here.

God bless you,

dj

Thanks debbiejeanne

I appreciate your reply and you are right...out with the rubbish. Pretty sad when someone you thought loved you runs when things aren't easy but that's life and although it hurt badly I must move forward and focus on my health. Like you I am finding out true friends are few. 

Ugh, swallowing. I'm forcing myself to drink and with the Stanford suspension at least I'm able to now. Wish I could eat but there's no way.

Cory

donfoo

welcome

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

TracyLynn72

Welcome

to the family   I'm sorry that you have to be here, but these folks are AMAZING!  We are like one big, crazy family!!  I am so terribly sorry that you are going through so much!!  You obviously are one tough lady and WAY too good for that ex boyfriend!  You sound great having gone through so much treatment already.  Wishing you the best through the rest. 

CoryDee

donfoo said:

welcome

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

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

CoryDee

TracyLynn72 said:

Welcome

to the family   I'm sorry that you have to be here, but these folks are AMAZING!  We are like one big, crazy family!!  I am so terribly sorry that you are going through so much!!  You obviously are one tough lady and WAY too good for that ex boyfriend!  You sound great having gone through so much treatment already.  Wishing you the best through the rest. 

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

donfoo

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

pain meds

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. :-)

debbiejeanne

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

Cory, what is a Stanford

Cory, what is a Stanford suspension?

dj

Jeff2159

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

Pain meds

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

Jeff2159 said:

Pain meds

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 

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

phrannie51

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

Don't you worry....

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

phrannie51 said:

Don't you worry....

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 

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

JC F

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

You should...

...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

JC F said:

You should...

...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.

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

donfoo

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

hard to believe..

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

 

granmudder

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

pain meds & peg

Hi CoryDee,

Ive been reading your posts and the amazing support from this group... I joined this group as a caregiver.. my husband isnt the type but we do discuss lots of the information I collect here its very helpful... makes me feel less alone.. He was misdiagnosed for a year .. i fought and eventually they did surgery on what they claimed was a cyst.. long story short He was stage 4A and has undergone 35 radiation treatments and 3 cysplaiton.. has lost close to 35 lbs.. of course we fattened him up a bit as he was operated on April 8th but only started teratments on July 2nd.. all finished on August 20th... no peg he wouldnt hear of it though they did suggest.. he also  was taking less moriphine than prescribed but now realizes He had to up the dosage if He wants to swallow....He does not like ensure or  boost.. I make him shakes with High fat ice cream 290 Calories fo 1/2 cup High fat greek yougurt.. whey protein powder a large scoop.. i usually add a table spoon or 2 of hemp oil and soda water... i sometimes add fruit or avacado  he drinks at least 2 of these a day gives him between 800 -1000 calories per shake... he drinks soda water.. or ginger ale.. very rarely water..its been almost 2 weeks and he has been trying a little scrambled egg.. or liptons soup with scrambled egg .. he wouldnt be able to do this without the morephine..at least not yet...one day at a time.. it isa rough road but doable....Hang in

Patty

wrhbounds

ATTITUDE

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

wrhbounds said:

ATTITUDE

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

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.

hwt

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.

Cory

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.  

 

phrannie51

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

Here is the deal with the PEG

tube.  Yes, there are a few who have made it through treatment without one.....Don did it, Guzzle did it, Skiffin did it and now Grandmudder's husband is doing it.....Those are the four on top of my head who managed it.....the grand majority of us did not.  

Yes....you do have to swallow something anyway....however, six sips of water, or milk per day for the swallower, is nothing compared to thinking you've got to get that whole smoothie down, or that whole 8 onzes of Boost 2 or 3 times a day.  You can call it recreational swallowing....while the tube is where the meals come from .  Getting all the nutrition in you can take will help healing, and will keep you stronger as you go through treatment.  This is one of those "whatever it takes" decisions......  My mouth was tore up from chemo....nothing could pass through it, it was like hamburger.....even bled when I talked.  The only thing I could get down my gullet was L Glutamine mixed with water (even plain water stung like no tomorrow!).  This didn't start till after the first rounds of chemo and rads were over....I was VERY glad to have the tube in place when it was going to be the only delieverer of actual food.

Think it over, really......it makes meal time take on a whole new atmosphere......pour it down, dinner is done.......no apprehension, no putting it off, just pop the top on the can and pour....THEN go take a sip of water!!

p