Tonsil Cancer Survivor

HydroLar

I'm new so hello everyone. In Feb of this year (2011) I woke up with a swelling on the right side of my neck. One Dr led to another Dr and I was diagnosed with tonsil cancer by my ENT. I was 56 years old.

Before I had time to blink I had my right tonsil out and found myself admitted to a cancer ward for chemo - 100 hours of Cisplatin, Taxotere and 5FU. On the day I was to be discharged I felt dizzy, passed out and had a slight seizure. Apparently chemo had reduced my sodium level to next to nothing as well as potassium and magnesium levels. So I ended up in the ICU for 4 days while getting my sodium levels back up.

Being in the ICU is like putting your bed in the middle of a city highway in rush hour. I could not move or sleep and I was miserable. Finally I was discharged to return twice more for 100 hours of chemo each time followed by nausea, fatigue, skin rash and mouth sores - this was in May.

Around Memorial Day I could not keep anything down and pretty much stopped eating. I also had a pain in my lower right side. The Dr's were too concerned with cancer to pay much attention until my appendix ruptured putting me back in the hospital. Once my appendix drained and the gangrene was cured with massive antibiotics I decided to put in a feeding tube on Dr advice. I still wasn't eating and had dropped 30 pounds.

Soon I started radiation which was a breeze until the cumulative effects hit me like a sledge hammer - constant nausea, fatigue and really strange dreams. The feeding tube was literally a life saver - I did overnight feedings.

After 7 weeks of radiation I was a free man except I took several months to recover from most of the effects. I still have an occasional sore throat, neck pain at times, hardly any saliva and I'll never again have a beard but I'm still alive.

My first 3 month check was today. The PET scan showed no more tumor but an uptake of 2.8 and apparently a 3.0 is something to worry about. But I'm not too worried because I have yet to accept this 'freight train' of a year emotionally. And once again, I'm still alive.

And glad to be here.

Larry

RogerRN43

Larry
Thank you for joining the site and sharing your story.
Those are some incredible speed bumps during your treatment.
I'm 11 days post rads and use my tube overnight too, during the day now, I try to drink them.

Nice to see you are well into recovery. How's your taste and eating habits now? Is your tube gone?
Best wishes on your next PET.
Roger

longtermsurvivor

Three cheers for you Larry
That's a pretty tough story, but one that looks to have a good ending. Dang the appendix was a real thriller of a complication. I'm kind of reminded of the famous Mark Twain saying "when you're up to your **** in alligators, its hard to remember your original intention was to drain the swamp."

Welcome, and glad your still around.

Pat

osmotar

Hi and Welcome
Hi Larry,

My diagnosis and treatment sounds very similar to yours. Only have 3 rad treatments left out of 39, plus with every week of rads I have 1 infusion of caboplatin. Had the 1 every 21 days of cisplatin/taxotoere/5fu. The only hospital stay I had was due to a low wbc count after the first all day triple threat infusion. Other than that has been relatively easy for me..counting my lucky stars. I'll have my first follow-up pet scan at the end of March. What is the uptake your mentioning? Does it have to do with your thyroid levels of is it something else.

Anyway, welcome, lots of good info here and great people.

Linda

Skiffin16

Welcome
To the club Larry....

Another very similar in some ways only a few years ahead of you now.

January 2, 2009 - STGIII SCC HPV+, Right Tonsil and a lymphnode. Sixteen weeks of chemo, seven of which were concurrent with rads.

Nine weeks (three week cycles) of cisplatin, taxotere and 5FU, then the seven concurrent weekly doses of carboplatin and daily rads with amifostine injections in my belly each day before the rads. I finished up all of that June 2009.

I also lost all saliva and taste, but very slowly have regained nearly 100% of both.

I didn't have hardly any complications or nausea, but did have low potassium and took pills for 10 days.

Made it through all of my treatments on time, wasn't prescribed the PEG, but for me that worked out OK.

The first PET can be skewed due to residual and scarring from the rads, hopefully yours will improve over time.

As for the various aches and pains, you'll have those frequently more than likely for several months or even the first year or two.

Here's a link to the SuperThread, a compilation of very good information to newbies here such as yourself;

SuperThread

Best,
John

Pam M

Hello Larry
Dunno if you ever saw that old show (the eighties, I think). McLean Stevenson (MASH) was the lead - all I recall from the show is part of the theme song, and it jumped in my head when I saw your name.

Welcome to the site. I have nothing useful to add - my treatment was very similar to Osmotar and Skiffin's (and yours). Wow. Seems to me the majority of folks here don't do induction chemo - funny that this many of us are on this thread. I was not hospitalized for chemo (was hospitalized DURING chemo, but that's different) I got to get part of my chemo via a fanny pack/pump at home.

Sounds like a positive check up to me - many people who get checked at three months show some uptake. For the majority, it's resolved by the next scan. Hoping that's the case for you.

HydroLar

RogerRN43 said:

Larry
Thank you for joining the site and sharing your story.
Those are some incredible speed bumps during your treatment.
I'm 11 days post rads and use my tube overnight too, during the day now, I try to drink them.

Nice to see you are well into recovery. How's your taste and eating habits now? Is your tube gone?
Best wishes on your next PET.
Roger

Roger
Roger, it looks like you are 'over the hump' in treatment and now it's recovery time. I had my feeding tube taken out about 6 weeks after radiation ended against Dr advice. I was barely hanging onto my low weight and they were afraid I'd lose more weight with the tube out.

I took it out anyway, then looked online for the highest calorie drink Dunkin Donuts had to offer. It was a large mocha something or other and came in at over 900 calories. I bought a couple of those and managed to gain a pound or two - it was like drinking 3 hot fudge sundaes in texture. I could not taste any sweetness.

It took me about 2 months to regain a lot of my taste but it still has not come back completely after 5 months and I am finally producing more saliva.

As of right now my eating habits are back to normal which for me is eating bad foods and eating a lot of it. I'm finally gaining weight but not near as fast as before cancer.

Larry

HydroLar

longtermsurvivor said:

Three cheers for you Larry
That's a pretty tough story, but one that looks to have a good ending. Dang the appendix was a real thriller of a complication. I'm kind of reminded of the famous Mark Twain saying "when you're up to your **** in alligators, its hard to remember your original intention was to drain the swamp."

Welcome, and glad your still around.

Pat

Pat
Yes, it was tough, kind of like riding a roller coaster without a seatbelt. Support from my wife and friends was extremely important for me to have gotten through this (you know you have a real friend when you throw up in his car and he does not mind while he is driving you to radiation).

I am also an extremely stubborn person at times. This helped me also.

Larry

HydroLar

osmotar said:

Hi and Welcome
Hi Larry,

My diagnosis and treatment sounds very similar to yours. Only have 3 rad treatments left out of 39, plus with every week of rads I have 1 infusion of caboplatin. Had the 1 every 21 days of cisplatin/taxotoere/5fu. The only hospital stay I had was due to a low wbc count after the first all day triple threat infusion. Other than that has been relatively easy for me..counting my lucky stars. I'll have my first follow-up pet scan at the end of March. What is the uptake your mentioning? Does it have to do with your thyroid levels of is it something else.

Anyway, welcome, lots of good info here and great people.

Linda

Linda
Hi Linda, it's always comforting to hear that someone else went through what you did and understands. 'Uptake' from what I can figure out is a measure of metabolic activity in the tumor area. The lower uptake the better. Unfortunately it is not all that accurate and will target false positives such as unrelated infection or scar tissue.

Uptake should be examined over a period of time and regardless of what it is if in a downward trend then you are getting better.

Larry

HydroLar

Skiffin16 said:

Welcome
To the club Larry....

Another very similar in some ways only a few years ahead of you now.

January 2, 2009 - STGIII SCC HPV+, Right Tonsil and a lymphnode. Sixteen weeks of chemo, seven of which were concurrent with rads.

Nine weeks (three week cycles) of cisplatin, taxotere and 5FU, then the seven concurrent weekly doses of carboplatin and daily rads with amifostine injections in my belly each day before the rads. I finished up all of that June 2009.

I also lost all saliva and taste, but very slowly have regained nearly 100% of both.

I didn't have hardly any complications or nausea, but did have low potassium and took pills for 10 days.

Made it through all of my treatments on time, wasn't prescribed the PEG, but for me that worked out OK.

The first PET can be skewed due to residual and scarring from the rads, hopefully yours will improve over time.

As for the various aches and pains, you'll have those frequently more than likely for several months or even the first year or two.

Here's a link to the SuperThread, a compilation of very good information to newbies here such as yourself;

SuperThread

Best,
John

John
I'm sorry to hear that you went through all the same things I did but it's comforting to hear that uptake can be skewed and saliva as well as taste will have a good chance of coming back.

I had carboplatin chemo also during radiation but neglected to mention it.

Larry

HydroLar

Pam M said:

Hello Larry
Dunno if you ever saw that old show (the eighties, I think). McLean Stevenson (MASH) was the lead - all I recall from the show is part of the theme song, and it jumped in my head when I saw your name.

Welcome to the site. I have nothing useful to add - my treatment was very similar to Osmotar and Skiffin's (and yours). Wow. Seems to me the majority of folks here don't do induction chemo - funny that this many of us are on this thread. I was not hospitalized for chemo (was hospitalized DURING chemo, but that's different) I got to get part of my chemo via a fanny pack/pump at home.

Sounds like a positive check up to me - many people who get checked at three months show some uptake. For the majority, it's resolved by the next scan. Hoping that's the case for you.

Pam
Thanks for the words of encouragement! I have been feeling alone and isolated for a while now and why I never visited this site before is beyond me but I'm glad I'm here.

Larry

PS MASH was one of my favorite all-time shows and I still watch reruns to this day

sweetblood22

Welcome
Just wanted to say hello.

tommyodavey

HydroLar said:

Pam
Thanks for the words of encouragement! I have been feeling alone and isolated for a while now and why I never visited this site before is beyond me but I'm glad I'm here.

Larry

PS MASH was one of my favorite all-time shows and I still watch reruns to this day

Welcome
Hi Larry,

I just wanted to chime in here and say hello too. Like you, I am fairly new to this site and have found it to be filled with great people and lots of information.

Tommy

leonard53

survivor of stage 4 head and neck
It has been almost 7 years now. I was diagnosed with stage 4 similar to yours, i had tonsil removed, 7 weeks of radiation with two weeks of chemo cocktail of 5fu and cisplatin using a fanny pack, a feeding tube for 6 months. Surviving is like getting a new birthday, I celebrate each extra year. Hang in there and good luck. The first year was hard wondering but it fades with each passing year. I am now 58.

Took about a year to get past tireness from radiation, never lost my hair.
Both times the chemo took white count to low and ended up in hospital for 3 to 4 days each time
First time in had septic blood poison, antibiotics around the clock, woke up knew it had been close, I asked my onocologist how close, she replied we loose patients at this point. She was honest and I had great trust in her.
Morphine controlled the dull but constant pain
Eating without pain about a year and half or so.
Lost both major saliva glands,I take pills for that every day.

Taste it has returned more or less.

It is a different journey for each of us.

You are now a member of the cancer club