Christine, Cheryl, Anne, Jennifer, Don, Eric, Jayne, David:

Thanks so much for the great input. I appreciate all the input and will be sure to re-read it multiple times and take appropriate action.

At this time, I am trying to get a local tumor board to look at my reports and decide on the course of treatment. In speaking with an Oncologist at OHSU he suggested that if I do not have any extra capsular extension I may not need chemo. I was curious if anyone on this forum had avoided chemo even though there was activity in two lymph nodes? He did quickly state however, that the tumor board would need to review my reports prior to making a final recommendation.

In the meantime I am trying to consume as much as possible. My tongue is weak from surgery and I am having a hard time with solids. Vitamix is a great friend, although the mashed food gets old after sometime. I take one ensure everyday. Anyone have any suggestions for diet (note I am vegetarian) during the time the tongue is healing? Also, how long typically after surgery is one able to eat regular food?

I sincerely appreciate all your great input and support during this rad (and possibly chemo) treatments, which should start in the first week of July. I understand that the real effects take place after the treatment is completed.

Take care,
Chetan

You need tons of calories now and for at least the next 2 years. I hope this veggie lifestyle doesn't get in the way of your recovery.

Chetan, to heal a diet high in protein is necessary. Also your daily calories should be a minimum of 2500 daily with a minimum of 64 oz of water. If you skimp it will only hurt you in the end making your recovery longer and much more difficult. Since you mentioned eating is difficult for you, it sounds like your calories are on the low side. With drinking one ensure a day, it isnt even close to being enough to get your body into healing mode.

Make use of the search functions on the forum. There are many many posts full of info that will help with the above questions. Here is a list of easy to eat foods.
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

Chetan,
I felt so rough with my tongue surgery. I know I lost weight, after each surgery, the excision biopsy, the clean margins, the new excision--to take wider margins, being the worst. I ended up anemic.
I am not a vegetarian, but ate almost no meat, so it was easier for it to happen I guess. (with use of iron pills & careful dietary choices, I was able to raise my hemoglobin and hematocrit to normal levels post treatment) BUT, you have to be careful because you definitely want to have as few pre-existing problems (i.e. low weight, blood counts) going into treatment. Most of us get mouth sores that slow us down, mine not being nearly as bad as some.

Re: chemo. I did not like it, but I had it 6 times, once a week over the 6 weeks. I did not have nausea because Zofran took care of it, but I just felt lousy for 3 days afterwards. It was explained to me that it was a boost to the radiation, so it I did not need a heavier dose of radiation. To me the radiation was not bad until the last few days and afterwards. I do not know about have two lymph nodes vs one and having chemo. The chemo was added in for me because of the extra capsular extension, which as I said microscopic. I would say you might be border line.

I'm with Christine that you need to consume more, and if your tongue is still really too bothersome for solids, drink more of those Ensures, or Boosts, or Carnations. Keep working at it and it will get better.
Anne

Chetan,

I too am vegetarian and found a few good options for getting my calories during and after treatment. Since I'm lactose intolerant, I used whey protein and soy milk in smoothies and shakes which provided plenty of protein. I've since discovered almond milk which I prefer over the soy milk. Also, things like mild black bean or lentil soups were great after treatment.

After surgery, I think I was eating solid food within three or four weeks. Certainly within six weeks. During chemo/radiation I did have to transition to using my PEG tube but was able to give that up within about three months.

Its a long, slow grind to recover from this disease but it is definitely do-able, even on a vegetarian diet.

- Margaret

Hey there I'm a veg head too - agree with Margaret - almond milk is great silk has a new one called true almond - awesome. That said chocolate stings at this point sooo - two weeks post radiation and I'm managing 12-1400 calories a day without my peg - that's coming out tomorrow - I've only lost 12 lbs - and did most of my food by mouth - though it was liquid form - up until two weeks ago - when the chocolate really started to bother me - would make a killer protein smoothy for breakfast - if you're near a costco they have a protein shake that has 30 grams of protein in it (they sell it by the case) - I would throw in a bunch of frozen fruit and another scoop of protein powder and that gave me 55 gms of protein and 400 calories then I would round out the rest of my calories with boost or ensure for the rest of the day.- in the interim eat as much as you can - the chemo is not the worst part - that's pretty manageable - it's the radiation. I was eating most solids by week 4 after surgery - just small bites with lots of fluid!

Good luck with this - bulk up before rads you should be okay the first few weeks just the last few are hard!!! Chemo isn't that bad! If the offer it take it!! Good luck!

Hi Cheryl, Margaret,

Thanks for the response. It is great to see that you (Margaret) are free of cancer after 3 years. Congratulations!

Nice to note that vegetarians can make it too. I will look into the almond/soy milk and the costco protein shake. Great tips! I am already taking lots of lentil soups.

Regarding a peg, I was curious if everyone needs one or is this decided later on only if one does not get the needed nutrition orally? Also, is this a local anesthesia kind of a procedure, and are there any downsides to a peg? I am wondering if I should just ask for one.

Cheryl you mentioned that chemo is not all that bad. That's great! Could you elaborate on your experience with radiation? I just want to be mentally ready for the worst, while hoping for the best.

Thanks again for your words of encouragement and great inputs to get ready for rad/chemo.

Chetan

Hi - okay the peg is as I have found out something that is determined by your dr. If you are against it they can't force you to have it - it is also something that is determined by the practices of your hospital and country you live in - what I gathered from one person in Australia - her dr. Said he didn't want to use one to help preserve the swallowing reflex. - it wasn't standard practice there. My dr. Said he didn't want to do radiation without it - this was the practice of the hospital - I agreed though I probably could have insisted not. I think it also depends on your weight to start - if you are at a normal weight or the low end of your weight range, radiation is such that it does get harder to eat as you go along. Some people lose scads of weight and get dehydrated - these are the people who need one. (it all depends on how you handle the radiation) Needless to say if you weight 120 normally and are 5'6" - a peg might be a good idea. It also depends on you - I generally handle pain well. I knew this going into radiation despite this I said yes because I didn't know what was facing me. I did lose weight - about 12 lbs. I used my peg 4 times twice because I had no energy and was nauseated after chemo - twice because I was told to try different formulas by the dietician. ( it actually made me sick - I could only handle half a can of feed without throwing up ) it takes an hour ot 2 to run a feed too... Which is a pain. They usually like to put it in at the beginning of radiation, or not at all. ( though this is dependent on the dr. And hospital) They don't like to wait until you are too sick to eat and too dehydrated before puttiing it in. - it makes it harder - plus you don't want to get into a situation where you are run down. The only draw back I know of with it (unless it's been put in incorrectly) is the fact that you have to maintain it even if you're not using it- and the fact that sometimes people become dependent on them because they lose their swallowing reflex. Despite what people may think - I wasn't against it. If I needed to run a feed I did, but like I said - I ended up getting sick as my body couldn't handle the feeds, so i decided to chug my ensure instead!

The procedure is done under a local. Not painful - afterward it feels like there's something stuck up under your rib cage but the sensation goes away after a day or two. I'm not sure how other hospitals do it but it only took 20 minutes then they took me to recovery and then moved me to the radiation clinic where they kept me for a few hours - they showed me how to used it too. Then I went home. Talk to your Drs. See what they think about it - likely they will suggest you get one - it can't hurt - but it's best to wait until you really need it to use it.

Radiation is not too bad the first 3 or 4 weeks - I could feel the tightness in my throat from the outset - it was irritating - but you get used to it. I did my exercises for the first 5 weeks (hospital has exercises to help maintain swallowing and mouth muscles, tongue etc..) - or until it got too painful to do them -

Usually the first few weeks you get a bit of a sore throat - some blisters - but they generally come and go if you don't mess with them.
Your cheeks and mouth will feel swollen. I rinsed religiously with the baking soda mix, and used Manuka honey from week 3 to 7 - I think it really helped but I'm not allowed to advocate it here. There is a posting or two about it under the adjunctive therapy Forum. Or you can pm me.

This all managed to get me through to the last 4 days of radiation. (I had 33 sessions) for the last 4 days and two weeks after things were worse. Drinking my boost or ensure was painful - they do give you a prescription for magic mouthwash I used that for a few days at this point then I used codeine for a few days, then when it was really bad - last week from Monday to Friday - I used some oxy. Now I only use oxy at bed time - I still have a residual sore throat but it's way better and the mouth sores are almost gone. I just drool like crazy right now! That's the most irritating thing, plus my repaired tongue is very swollen so it touches my palate and that makes me gag! Everyone handles this differently - it's not easy but knowledge is power - figure out what works for you and listen to your body.
I lost my taste around about week 3 -4 - ugh! And it is still gone - Another thing that helped me over the last few weeks was switching fro me baking soda rinse (you gargle with it) to flat club soda - which I could swallow - it helps with the sore throat ( was recommended by my hospital ) and also helps with hydration.
I've been using it for 2 weeks now it helps.
I had my peg removed today.
Yipee!
It was nothing I could have removed it myself. Took 5 minutes!
Chemo is mostly nauseating for 3 or so days. They give you scads of anti emetics to help though - that was the worst of it. -My hospital keeps you in over night because they do a full dose and like to keep you in and run an iv for 24 hours because it's really hard on your kidneys - not all hospitals do this. Also because they do 2-3 full doses - you don't always get the last treatment - my WBC s were down do they could only fit in 2 - cisplatin only works when you are having rads apparently.

Hope this helps - if you have any questions feel free to pm me. It's not an easy road but it is doable. Good luck!

Thanks Cheryl for the details regarding rad and chemo. I meet a radiation oncologist at OHSU on 5/25 and now have additional questions to ask him. Problem is my surgeon is at UW in Seattle and does not appear to have good oncologist connections in Portland where I am located, so I am having to do much of the legwork myself. Any input on the kind of questions to ask would be greatly appreciated.

Also on a different note, I tend to have this low-grade fever (nothing high about 99.5F or so)each night after I have returned home on 5/11 from the hospital. I sweat a little as a result of the temperature. Weird thing is this elevated temperature comes about either in the late evening or the night. Some say it is due to the surgery. Others say it may be the body's reaction to the cancer in me. My PCP says not to worry until it exceed 100.5F. Any thoughts regarding this greatly appreciated.

Thanks very much in advance for your responses.

Well first off let's hope the dr. Got all the cancer with the surgery. So hopefully that's not a reason. Usually the reason they treat it with surgery first is to get it all. Rads and chemo in this case is meant to clear up any microscopic cancer that may have been left over.

Fevers generally spike at night - not sure why perhaps because in the morning you are well rested then by the end of the day you're a little more run down - I would keep an eye on it - it could very well be related to the surgery, or just a bug of some sort. Don't let it go on for too long before making more noise with the dr. You know what's normal and what's not. If it is a mild infection - then you don't want it to progress.

Sorry your having trouble with finding a radiation guy. I was treated at PMH in Toronto it's a cancer hospital - basically one stop shopping - I'm sure there are people here who can recommend a good rads person in Portland. Im pretty sure we have members from around there! What I did when I found out I had this - I had a friend find out who the best surgeon was for this kind of cancer - another ENT guy recommended the dr. I ended up going with. The ENT guy himself was very good so for him to recommend the surgeon I knew he was good but once I had a name I researched it and went from there. So get a few names - then do some online research. Or vice versa. or ask around - look up the hospital you will be having treatments with, they usually have a staff list with information and accolades for their Drs.

My rads guy and I had a few communication issues - but we worked them out. He was not a person I would have chosen myself - my surgical oncologist would likely have recommended someone else but the guy at the local hospital who did my original biopsy - had put in a referral with him at PMH around the same time i got the referral to my SO from my family dr. so I went to him because he could get me in sooner! I met with them both the same day - and was told to call my RO 2 weeks post op, when I met with my SO for my post op path results they'd already consulted and agreed it should go for rads and chemo, so it worked out and everything was set up quickly. That was important to me - and frankly the hospital is supposedly one of the top 2 in Canada - top 5 in the world - if he's one of a handful of rads guys working there - then he's got to be good.

I did make sure he knew that I wanted this treated aggressively. And because of this when I had a baseline scan prior to my treatments - that came back with a highlighted node showing on the opposite side of my neck - he continued my treatments for the week (i'd just stared my radiation treatments that week) then rewrote my radiation plan to include my right side - and set it up so that despite being a week behind my right side got the same amount as the left. The node could have been anything, an infection or inflammation. I didn't have it biopsied but I did want it gone. I talked to my SO, RO and MO and they all agreed that if it was cancer it would be taken care of by the rads - plus they also said based on the location- it probably wasn't cancer - it was very small 3mm - my SO couldn't palpate it - my MO said she thought she felt it a week or 2 later but it was gone when I last saw her. So my advice - always ask about your results. I asked the morning after my second rads treatment - what my scan results were - the rads guy said - if there was anything to note I would have told you - I don't subscribe to that train of though - after he sent his resident off to take look we had a bit of a go about over my chest results, (which were fine) - then I asked him about e head and neck results and he said it was a baseline scan - ok? I accepted this went home then I called my contact nurse - with some more questions - she called the rads guy he said he wanted to see me after treatment the next morning. Thats when i found out about the node - and that he was rewriting my plan. So my asking about the results forced him to take a closer look. If I had not asked him the node might have gone un noticed.

I guess I'm just trying to say that no matter how good they are - no matter how nice they seem Drs. Are human, and have a lot on their plates you need to be responsible for your care - and knowledge is power.

I'm not sure if the hospital you will be attending is a ccc but I would say try to go to one if you can they have a team approach, and work - for the most part - together.

Remember to stop any anti oxidants 2 weeks prior to treatment - see a dentist about flouride trays - and to see if you need any teeth removed - good luck.






I would say give yourself a little time to heal. But don't wait too long. I had started rads 6 weeks exactly post op.