tonsils removed

Welcome!
Hi am sorry that you have to be a new member to this fraternity; but welcome you have friends who care about you here and know what you are going through. Though I am still fighting the battle of recovery; 2 months post radiation/chem/surgery I will try to help when I can! The surgery is the easy part. Get ready for the fight of your life; however some deal with it easier than others. I think it depends on your social support. Eat as much as you can and taste all your favorite food because once treatment starts it will be a long time before things taste normal again!! Good Luck! God bless!

Charles

TONSIL PAIN
Man, I feel for you. I had just one tonsil removed along with some soft pallate. When I was removed from my morphine pump i was given liquid oxy. The dose was 5-10 every 4-6 hours. I broke through that dose every 2 hours. My wife is a nurse and made the docs either up the dose or allow me to take the dose every 2 hours. The pain sucks and try to steer your doc in the direction you want him to go. I am 3 weeks out and am currently on a 100 mic fentanyl patch. The elimanated the "roller coaster" effect of no pain and then pain. This has alowed me to be able to sleep through the night as well as help me to return to work.

All the best!!

Mike

stevenl said:

Tonsils
Hi DJ,

I had the same procedure done. Tonsillectomy and right neck dissection, back in February. The pain from the tonsillectomy was the worst part of my treatment. Worse than chemo or rads. The pain was bad at times, but my docs gave me what I needed for pain and we kept it under control. If you are not being treated the same way, demand it!!

Best,
Steve

Pain in the NEck
I had a tonsillectomy and left neck dissection in late April. For me the pain was bad but bearable. What sucked was how long it took to feel better. I'd have a good day and I'd be excited, thinking I had turned the corner, and then BAM the pain would shoot right back up.
Day 7 was by far the worst for me. On day 14 I went out to a burger joint with my nephew and had a cheeseburger with everything.
I'd take a percocet then have lunch or dinner shortly after. Mashed potatoes, jello, mac and cheese, flavor-ice...
Hang in there, it'll get better.

Joel4 said:

Pain in the NEck
I had a tonsillectomy and left neck dissection in late April. For me the pain was bad but bearable. What sucked was how long it took to feel better. I'd have a good day and I'd be excited, thinking I had turned the corner, and then BAM the pain would shoot right back up.
Day 7 was by far the worst for me. On day 14 I went out to a burger joint with my nephew and had a cheeseburger with everything.
I'd take a percocet then have lunch or dinner shortly after. Mashed potatoes, jello, mac and cheese, flavor-ice...
Hang in there, it'll get better.

My experience was a lot different
I had a egg-size tumor in my right tonsil, which was removed before I began chemo and radiation, all of which were followed by a modified radical neck dissection.
I recovered very quickly from the tonsil/tumor removal, and I don't remember having trouble eating or swallowing after a few days had passed. Before then I was eating stuff like ice cream, soup and Jell-o, but honestly, that was the easiest part of my journey. The rads were way, way worse.

--Jim in Delaware

Ouch alright
Hey there, I have had the same, tonsil removed, at first it all seemed okay, then by about day four, the most excruitiating pain I've ever experienced, even childbirth was over in 4 hours. I ended up going to my local hospital and they gave me morphine in tablet form, this was impossible because I couldn't swallow, it hurt to much and the tab would sometimes get stuck. She recommended gargling Aspalgin, and that was my life saver. It worked a treat.
I am so sorry that you are going through this, but, we are not alone. And that is sadly comforting. Rad and Chemo are a walk in the park after the tonsil removal. Although once your pain from tonsils is over you will forget about it and start to focus on your treatment and the side effects you get from that. I wish you all the best. I am 4 and half months post treatment and doing great. xxxx

DJG1 said:

Tonsils Removed
Thanks for the many suggestions and comments. I hope I am feeling the worst of all now, but only time will tell. I will start the 33 rad treatments unilatterial around the middle of Sept. I have elected NO Chemo. I had heard about 2-3 weeks recovery for adult tonsil removal. I would have thought it would be a progression, but I guess not. One week down, a couple more to go, and then we get the real meal cookin. RIght now I am just looking forward to the Holidays with hope that I am on the road to recovery. This is a great site for lots of informaiton. I am sure i Will be asking for more help and advice.

No Chemo
Out of curiousity why did you elect no chemo.....to me that was the least invasive and with the lesser of lasting effects. Plus it treats the entire body not just a localized area as does surgery and radiation....

Ultimately I know you have your reasons and decisions, and it's not my business.

I was just curious...

Best,
John

DJG1 said:

No Chemo
John,
I am happy to share with you my decision about chemo. Thats what this board is all about, People sharing thier jouney and having respect for their trip. Chemo by itself is not an option with onc for this treatment, meaning radiation is the first blast. As debilitating as radiation might be, adding the chemo with the rad makes for additional long/short efects and the recovery is proven to be twice as long. You will find that in most cancer treatments (head and necks not being one of them), treatment with chemo and rad is common, but not at the same time. Most onco do not want their patients taking chemo and rad at the same time. They will do one then the other in most cases. The reason is because of the effect the two combine at the same time have on the body. In the end, most chemo only give you an increased 10%. Seems like a lot, but for me the trade off for the long/short term was not worth the 10%. This has to be an individual decision, and I would never suggest to anyone to do one or the other or both. I would only suggest that everyone do their research and know about every option that is available. I had to fight to get to this point, but I am glad i did. In the end there are no quarantees with any option, so you must follow you own heart with the knowledge you have. These people here have been a good part of the knowledge I have gained. I think evryone will agree, the people here can tell you the real truth, as opposed to most doctors want to sugar coat the treatment.

Different Approaches for Different Locals
I didn't read also what stage you were diagnosed, that could also play a huge differrence upon the treatment plan.

I guess it could be a different approach depending on location and medical facilities as well.

Here where I am, I'm under a team that is headed by my ENT. He chose the chemo MD and the radiation MD. But left the decisions on them for which plan to come up with.

Mine was diagnosed as STG III, SCC, HPV+, right tonsil & a single lymph node on the same side.

They all agreed on nine weeks of chemo (three week cycles - Cisplatin, Taxotere, and 5FU), then seven weeks on concurrent weekly chemo (Carboplatin) and 35 daily doses of radiation. It could have been the other way around, but the chemo first seemd to have the most benificial results at the time. I'm sure it's dynamic and a work/study in progress.

This is much similar to a few others on here.

But also, there are some which only had surgery, radiation, (can't remember if any only had chemo, but I don't think so), or any combination of the mix.

I certainly respect your decisions and you are right, there are no guarantees. You could be perfectly healthy and something non-health related get you just as quickly....

As we seem to like surveys, it might be interesting to put together one with each type of H&N cancer, stage, surgery, radiation and type, chemo - types, and other types of treatment.

Best,
John

DJG1 said:

stage
John,
My dix was stage 3, hpv neg, primary source right tonsil with lymp node involvment, was 1 in april, then 3 nodes in Aug which were removed with the tonsils last week. This RO i am currently seeing is old school (around 70) and wanted the surgery done before the treatment. THe other two wanted treatment 1st, then surgery if necessary. It seems thats about the split for most people here. Some have surgery first, some have treatment first. This RO says get as much out as you possible can, before treatment. He also did some work in Europe, that the other RO did not have that experience to lean on. This RO is very intouch with the radiation and chemo side effects to this treatment. He is actually a cancer survivor himself (not H&N), and I gathered he was not a fan of chemo, even though he never said those words. He laid the option on the table, with the expectiontions, and when I said NO CHEMO, he said it would not be tabled for conversation again. I have read that 70% of all oncologist would not take chemo or recommed for their family. I also had a dear friend loose her life to colon cancer 1-1/2 year ago, and her last 9 months was a waste and so was the chemo they kept her on. The tradigy in that was that the doctors made the family believe they had done her a favor. I have never let her death go in vein. Her experience has been with me through all of my decisions, and I beleive that god put her there for a reason. I think the idea of another survey is a great idea.

Sorry for your loss
Sorry about your friend and the rough learning experience.

Maybe sometime in the future I'll attempt the survey, just for this crowd. But at the present I have enough on my plate...

Thanks for the info and your situation.

Best,
John

luv4lacrosse said:

FOOD TOLERANCE
Welcome to the site. I had my Right Tonsil and some soft Pallate removed. My Surgeon says this was the most intensive Tonsilectomy he had ever performed. As far as food went, the first few days I found that sherberts went down easier than ice creams. jello was not bad either as I let it kind of melt in my mouth before I swallowed. I then graduated to mashed potatoes with allot of gravy.

My advice is to try allot of things and narrow it down to what works best for you. Stay hydrated at any cost. I found that sipping all day did the job and was the easiest for pain. I also found that carbonated beverages and acidic juices such as lemonade, cranberry and orange juice was hard to swallow follwed buy a burning sensation thereafter. Watered down oatmeal also worked pretty well with some sugar and maple syrup added for calories.

I am almost 4 weeks post surgery and am eating fairly normal diet now. Once you can tolerate eating, load up as best you can on good calories and allot of protien as you will need the excess calories you are taking in now when the Radiation and Chemo start.

best of luck buddy

Mike

eating after tonsillectomy
My husband had his tonsils removed 8/27 - so it is fresh in my mind, and he is still in pain - which we are hoping won't get worse (he is still on the percocet every ~ 6 hours). He did say that the last 2 days were worse then the 1st two after the surgery, but that may also be because he is talking more and aggrevating his throat and is not sipping enough water throughout the day (and the fact that he washed his percocet in the wash and we were 3 hours from home and had to rush home to Slone to get another prescription).

Anyway - he is mostly on cold/icey foods with occasional warm food (veg broth with a few whole wheat noodles) He is very concerned about trying to eat nutriously and not eating too much sugar and he won't he eat milk products since he heard it may cause mucous build up. So some of the cold things that he's eating are:
- tofutti
- cold cream of buckwheet or oatmeal
- rice dream (non dairy ice cream)
- frozen ices/fruit sherbert
- small bits of peeled cucumber or soft melon
- almond milk
- apple juice
- apple sauce
- soft bananas
- ice pops (100% juice that I had frozen in popsicle molds)
- his usual morning blended salads (basically a smoothy from greens, frozen fruit, bananas) that I had frozen into ice cubes

I am also making sure he gargles with baking soda and water a few times a day, as I heard that helps keep the wound clean. I heard gargling with salt and warm water helps too, but he won't try that (yet).

Hope this helps with ideas and please give me any advice anyone has too.
Suzanne

Skiffin16 said:

Pain & Gargling
The pain from the tonsils being removed starts about the 3 - 4 day and lasts for another good seven days or so.

When I had my tonsils out, and during radiation. They had me gargle after each meal and frequently. A mixture of a small amount of hydrogen peroxide and baking soda in about a quarter glass of water, spitting it out.

I never had thrush or any mouth of throat problems (other than the obvious from the surgery or radiation).

I drank a lot of Ensure for added calories and nutrients during radiation. Especially the seven weeks or so that I couldn't eat anything. I didn't have a PEG, wasn't a problem for me as I had excess weight going in.

Best,
John

Post surgery...stuff...hard.
DJG1,
Mark, with robotic surgery, Mark has his left tonsil, part of his soft pallet, and part of his tongue removed. 5 days later he had a radical neck dissection with all lymph nodes in the left side of his neck removed along with the muscle.
Post surgery was very difficult. Mark had a feeding tube through his nose so he could get nutrition. He would have gotten very little otherwise. Even with the tube he lost 20lbs very quickly just with the surgery process.
Pain was very hard for him to manage because he felt awful on the strong narcotics (oxy). It disrupted his sleep terribly.
Mucous was a big problem. Like John said, gargling with the salt water and baking soda offered some help.
The thing you need to know is the body heals. While I remember the recovery being a 2 step forward one step back process, the healing did take place. And once he got the green light from a swallowing therapist that he could eat and it wouldn't do any damage...he began to eat. We got won-ton soup, and I remember he put a whole won-ton in his mouth at once, and I thought, "holy sh**, what does he think he is doing"? But he chewed and swallowed.
Mark really did this mind over matter kind of thing. He would go somewhere in his head to cope and get through the day, and then when someone said okay, you are go to go, he went, and pushed through.
You will recover just in time to begin the next phase.
Stay with us here...we will remind you this is all doable...no faster than one day at a time...but doable.
Best,
Kim