I posted a similar message on the intro page but thought it made sense to post here as well. I was originaly diagnosed with squamous cell carcinoma of tongue Nov 2001, had partial glossectomy and neck disection confrming no nodal involvement. I just had a recurrence (or was it a new primary) March 31, 2006, had another partial glossectomy, and am scheduled to begin IMRT radiation in 2-3 weeks. Any guidance on what I should be doing to prepare for radiation is greatly appreciated. I don't want to only rely on what the nurses say as many things on this board appear very relevant to me. Is there anything I should do ahead of radiation because it just won't be the same experience post radiation? Foods, etc.. I had all 4 of my wisdom teeth extacted the other day to kick off this fun process. Thanks in advance and thanks to others who have already responded to my posting on intro page

One more question. I have 2 little girls, ages 1 and 2.5 yrs old and I'm trying to anticipate how outwardly visible the effects of radiation will be. Should I expect my older daughter to notice?

Kids are so adapting. My cousin has a 3 year old and just refers to my scars as my boo-boo. (she now says she can't see my boo boo anymore - they have faded and are still visible - but she can't really tell). She came when I was in the hospital and wasn't afraid and I had crusted blood on my neck and tubes going in me in all different ways. She was more concerned with putting lotion on her hands and mine. I'd just refer to your changes as "daddy's boo boo" and she'll never be the wiser. As for what changes you will actually go through and what you can do to prepare yourself - I'll leave that to those who have had the treatment as I do not know. best of luck to you.

Hi Warren- Before my husband started radiation
he went to the dentist and had his teeth cleaned
and got a fluoride gel, he started using this right away before treatment. I also stocked up on
Aquaphor healing ointment, it is in most drug stores, you need to start using it right away when you start treatment.
I had heard alot about dry mouth, I also purchased a humidifier as we didn't have one,biotene mouthwash and toothpaste for dry mouth.
For foods, you probably won't need these until around two weeks into treatment for when it gets
harder to eat "regular" food, but I had on hand
chicken noodle soup (no actual chicken in it, just chicken broth and noodles) cream soups,yogurt,pudding, mac and cheese, ice cream for shakes, and if you see Boost or Ensure for sale buy them! He didn't need any of these foods
for the first two weeks, but now into the third
week this is what he eats.
The best thing I have learned this far is to get pain medication as soon as you need it! We
didn't get any when his throat started getting sore, got some today and it made a world to difference. Good Luck- Cindy

Warren, At first, you won't have a lot of visible changes from radiation. as time goes on you are likely to have some swelling and some radiation burn, although how bad this is varies for everyone.

As for preparing yourself for radiation, the main thing I would recommend is use the next two weeks to eat as much as you want of the stuff you love. If you put on a few pounds, rest assured that they are likely to come off, and probably more than you put on, during the radition treatment. And food will taste awful for a while starting one or two weeks into rad and some things may not ever taste completely right again (I think this may be especially true when you get rad to a cancer site on the tongue. I have a lot of my sense of taste back but it's not 100% and I think it probably never will be).

There are all sorts of other things you might want to stock up on for use during treatment but if you are having just radaoition, you have time before you'll start having any side effects. So for now, eat and enjoy!

Nelie

Hi, Warren, altho I posted to you earlier about getting ready for rad. tx. I want to add that we have had our [now 2 yr. old] granddaughter living with us since last August. John's rad. ended in July and he had considerable swelling, etc. after she came to us. She has also been through his second surgery. She has been unphased throughout. My advice to you, tho, is to Be Sure you have a quiet place in your house to retreat to after rad. begins. Odds are you will need some down time and the kids will have to learn to respect that if the door is closed, Daddy is sleeping and is not to be disturbed. It may be tougher on your wife than you to enforce this. John tried to take most of his naps when Elli took hers and the rest of the time, I just kept her busy outside or with a DVD. By the way- Baby Einstein and Baby Genius DVDs or VCR tapes are great for quiet time and learning if you haven't tried them. GranMa Amy

I definetly agree with Nelie....eat all your fav foods now and as much as you want. Don't woory about any weight gain at this point. Actually that's a good thing since you drop weight like crazy and Docs will be all over you to try and maintain it.

Look into Skandishakes (try ebay and buy in quantity to get shipping prices down). They are DOUBLE the calories of Boost or Ensure and trust me after drinking those type things for the period of time you will have to you will REALY appreciate that you only have to drink HALF as much to get the calories you need.

Look into getting soem Mucinex tabs (again ebay excellent source) for the mucus you'll defenity be getting in gobs. Really helps to 'thin' it out.

Ask for the Aquafor at rad treatment center. They usually have GOBS of it in the small trial size...but they will most likely load you up whenever you ask. Hey, free is better.

Think hydration...hydration...hydration because if you don't get enough...that can lead to all kinds of problems.

oops...I mispelled it.

It's Scandishakes. If you went looking for Skandishakes..probably wouldn't find anything.

Try them...they're not bad at all.

Warren, There should not much if any outward radiation damage and not knowing how much radiation is prescribed we cannot determine anything. But, since you are taking the IMRT route damage should be kept to a minimum.
Darrell

Warren, You might consider chatting with your doc about the drug Ativan. Some folks, like me, got spooked with that mask clamped to the table over my head. The Ativan can really help. Take it about a half hour before you go in - but don't drive if you are taking it.

My IMRT left me with substantial burns both inside and out. The kids will notice the swelling and peeling skin and the redness, but will be reassured if you don't seem worried about it. Kids are more likely to trust their instincts than their eyes. If they think you are upset about it, they will be too. If you seem to be yourself and can smile and laugh, they won't let your appearance dictate their reaction. Remember that each of us experiences radiation side effects differently - your experience will not be just like mine.

Radiation has a cumulative effect. The symptoms are slow to start and (for me at least) continue to accumulate even after you are through with all the treatments. My worst days were in the weeks following the end of treatment.

Keep your medicine chest well stocked with the recommended skin ointments, mouth rinses and pain meds. I appreciated having them for several weeks after I quit going to the RadOnc.

Be ready to be much more tired than usual. Radiation really taxes all your physical and emotional resources - leaving you feeling flat and tired. Drink more water. Then drink some more. Hydration cuts side effects dramatically. Fluids and calories - all you can get. You can do it. Be strong. Tom

Firstly, thank you to everybody who has responded to me as everythng really looks like great advice. I've got my mom combing through this thread as well as others to gather all the things I will need throughout my radiation process.

JAM, you will laugh but we actually have a secret room in our house that our kids don't kow about and sounds like i will be speding alot of time there. never planned on keepin it a secret for this reason.

One more question I have for everyone is the plan of radiation they gave me. I ha a .5cm tumor on back left side of my tongue which was removed with thin deep margin and in situ carcinoma on medial margin. Sloan is recommending I get high dose IMRT on left side of tongue and lower dose on right side. They dont plan to radiate my neck area on either side as they think it is very unlikely cancer spread to nodes. Do people agree with this approach or should I insist on being aggressiv and radiate the neck. What are the additional side effects of moving down to the neck. Isn't it good to save the ability to radiate my nodes in the future god forbid i need to?

Warren, I won't venture to second guess Sloan, but I will say that I am really glad you have a "secret room"- and I hope your wife gets to use it every now and then too. Are you eating alot of great food now? Please do. Amy

Warren, I'm not going to second guess Sloan either. It does sound like you had a very small tumor. I'm guessing things like the swallowing problem I have had for the last year wouldn't have a chance to happen when the neck is not radiated. Be grateful you're getting off this easily (and trust me it won't seem all that easy--so eat up!)

I'm anxiously waiting to eat up but unfortunately stil recovering from the 4 wisdom teeth they made me have extracted the other day. i still have a few weeks and have made lists of everything i plan to eat

warren

Warren, I'll guess the Sloan folks know what they are up to. If they do a 'boost' or 'field' as part of your IMRT, your neck nodes will get a pretty good dose. Your tumor was/is small and that really helps the IMRT plan be really focused. Don't forget to do the tooth fairy thing with those wisdom teeth . I had all mine pulled and didn't get to keep a single one. I'm guessing my oral surgeon scored big on that deal. Be strong. We are with you, Tom

So tomorrow is Day one with i think the dry run session. 33 sessions to come high dose to left tongue and lower dose to right tongue. thanks to everyone for helping me to ge physically and mentally prepared for this. gained 7 pounds since i first read to bulk up finishing up tonight at peter lugers. you will be hearng from me soon

we'll be thinking of you......

Warren, glad to hear you have gained some weight. Get your "secret room" stocked with liquid goodies for when rad starts. Best luck. Amy

OK....get ready to strap that 'mask' on and take the ride. The rad treatments are a piece of cake..it's what will they do to you that side effect wise that will make it interesting.

Everybody gets most or all of the usual stuff like Mucus flow, nausea, pain, fatigue, etc. It comes down to the DEGREE it will affect YOU and EVERYBODY IS DIFFERENT!!!!!! Just can't stress that enough. You just flat don't know until you go through it.

Good luck.....

From Warren - always seem to be logged in under my wife

1 down 29 to go (they chanhed it to 30 bec notgetting my nec radiated). Gary, learned quickly you are right on in that the physical aspect of getting zapped will be the easy part. Also, surgical gloves for aquophor application a brilliant idea.

Any thoughts from everyone on how quickly i might start losing taste and feeling fatigue

Now its actually me, not my wife.

One thing I wanted to share as I have amused myself lately is my new party line to friends and family. Recall I am 32. We all deal with a similar thing in that we have many concerned friends, family and co-workers and I find myself constantly reassuring them everything is going to be just fine.

My new line is that "unfortunately, most of us at some point in our lives have to deal with a health crisis. sometimes its 40, sometimes its 80. I'm ust getting mine out of the way early"

Warren,

Regarding your question about how quickly you might lose taste and experience fatigue -- as you know, there's a range of responses among different patients, but since I was also in my 30's at the time and otherwise in good health, I thought I'd weigh in.

I had radiation without chemo (it sounds like that's what you're having as well). The first 2 weeks or so went pretty well -- by the end of the second week I had slight amounts of change in taste sensations, but not much in terms of real mouth pain. What I remember about fatigue at that stage was this: I had a chance to play in two different golf outings on the same day, and I was fine for the first 18 holes but didn't have enough strength to play the second 18 (and I was angry at myself for not being able to push through it)! It was around the third week when my taste buds got noticeably worse, and greater levels of pain and fatigue set in. The effects that, up to that point, had been creeping up on me, suddenly seemed to hit like a hammer.

Take the best advantage of every day that still feels close to normal -- eat as well as you can for as long as you can to try to keep up your strength.

Cathy

As Cathy said...excellent advice...eat as much as you can as long as you can. In about another week or so you will get hit with the taste bud thing. In my case..I wish it were that I 'lost' taste. It was worse. Everything tasted HORRIBLE (really salty in my case and still does). It was like you take a nice piece of apple pie and take the salt shaker...take the lid off...and dump the whole thing on the pie and try and eat it. You just flat can't do it. I'm just getting by nutritionaly with my scandishakes (I can get about 3 of them down a day, wich is about 1800 calories or so). Fatigue should hit you after about 3 weeks or so. Then it may hit like a ton of bricks. Be ready for some serious sleeping (if the Mucus will let you).

You'll see once you really get into this thing, everyday will be a bit different and it will be 'what's if store for me TODAY'.

Deal with it and move on down the road to recovery.

Warren, Great line about "getting your medical issues" out of the way early" With that attitude, you will be able to meet, head on, whatever comes next. By the way, how is your family doing? Amy

Update 1 - 10 treatments down / 20 to go

Update 1 - 10 treatments down / 20 to go

oops, meant to add following to previous post:

In following in Gary's footsteps I've decided to post periodic updates on my progress. Just finished my first 2 weeks and so far only real side effect is the very beginning of a soar throat (started yesterday) and given its the weekend will wait until Monday to ask the nurse for something to deal with it. If anyone has any suggestions for soar throat relief I'm all ears.

Separate and unrelated from the radiation, I've had a nasty case of what I thought was the stomach flu for 10+ days and lost 7 pounds my first 2 weeks of radiation. It turns out I have a bacterial infection called C.Dif which was caused by the 3 rounds of antbiotics I had taken from my surgery and recent wisdom teeth removal. Its been good practice on making sure I ge lots of fluids in me. The end is near on the C.Dif as I'm now taking Flagyl which should take care of it. Digging in for week 3 and will post soon.

Pattif, I'm nearly at your point in treatments, too. My ENT told me to "bulk up" before they began, so I'm eating like a locust! Would you let me know how your rad treatments progress? Frankly, those don't scare me as much as the "few" chemo treatments they plan on doing.

Sharon

just to avoid cufnusion Warren F nd Patti F are essentialy the same. WE are husband/wife and often post forgetting who was logged in. It I Warren who has the easiser of our two endevours of going through cancer treatment while
Patti has to care for me and our 2 daughers, ages 2.5 and 1 through this ordeal.

So I'm (Warren) a bit latein posting my weekly update post. 17 down / 13 to go. So far sideeffects are minimal. Taste is mainly neutal bu can taste some things and noting tastes bad yet. Some sores and a soar throat kicked in about a week go but thye seemed to have healed thmselves. Maybe the excess mucous coats the throat easing the pain. haven't needed any pain meds yet and am eating OK and getting plenty of liquids in me. this weak will get me to 4 down, 2 to go. not sure what to expect for these nxt 2 wks. i have been working this whole tme but getting tired late week and sleepin most of saturdays.
Chad

sharon - for somereal insiration read garyocks updates as wedid chemo/radia with a great attitude and great treatment sucess

just finished week 4 of treatments to 20 down, 1 treatments to go. things seem to be going well. lost my taste recently but its really just neutral so eating a spft diet of lots of creamy pasta that seem to work well as i am mainaining weight. That sore throat from a couple of weeks ago went away on its own and hasn't been a problem since. i sense the soars on my mouth getting worse but not yet bad enough to need magic mouthwash for eating. i takng everyone's advice and drinking alot of fluids. prob 6-8 bottles of water a day and a shake in morning. ot a bit tired last fri/sat and now today (friday). looking forward to going to the us open gof tourney on sunday as i scored a ticket and live very close. will be avoiding sun at all costs. haven't shavd since i started and have a few spots where beard stopped growing or hair fell out. funny looking. overall I feel good. followng in gary's footsteps. will post soon

my keyboard stinks and skips letters

meant to say 20 down, 10 left so 2 more wks

Warren, it sounds like you are doing great- Hope Patti is surviving as well:) Amy

Warren....you da man and sounds like you're doing about the same as I did thru the 1st part. Just goes to show you that a good attitude and a bit of good luck and this can be handled in a somewhat reasonable manner.

It's about a month now since my last treatments and it's been some very good days and some so so days. No really terrible days. Biggest issue for me lately has been the fatigue thing. I can't hardly make it from my bedroom to the kitchen without a sit down break...lol. Kinda on the weak side. My mouth seems to be healing up very nicely and my lips (which were a mess thru most of the treatments) are almost 100%.

One other issue has just popped up that has me a bit concerned....it's becoming harder and harder to swallow all of a sudden!!! This is something that didn't bother me at all all the way up to just a few days ago. It's not that it's painful at all.....just HARD to do. It may be MY fault since I've avoided solid foods now for almost 3 months ( I just flat couldn't stand the taste). I should have forced myself to at least eat some solid foods...no matter how bad it taste.

So..if anybody out there is about to tackle this thing. East something everyday if you can.

Keep up the good posts Warren and it will be over soon.

update -
25 treatments down, 5 to go so tommorrow starts my last treatment week. this last week was the first tough week with the mouth sores really turning the pain corner early in the week. felt like someone was stabbing my tongue all over the place. oxycodone and lydocaine wash doing ecently and i plan to insisit on patch tommorrow. pain is only baqd whe trying to talk lot or when eating but i've got the meds times pretty well now and its manageable.

i accomplished 3 major goals last week which were 1) to continue working and i plan to work the last week as well (somewhat shortened days) 2) went to golf US Open for last sunday's final round and most importantly 3)had a great 1st birthday party yesterday for my younger daughter Devan - i was feeling really good. i have found that working throughout this process has really hlped me mentally eve though i'm clearly less productive than usual.

had a handful of severe nausea bouts which to me are the worst of the side effects and am on zofra to help with that. it was really only 2 incidents and when i was in a car for an extended period of time. my taste isneutral at worst so i am still able to eat soft foods and get shakes down no prob.

can't believe i only have 5 more treatments, wnt faster than i thought it would. my wife is holding up like a champ taking care of a 1 yold, a 2.5 yr old and me.

will post after last treatment.

Gary - sorry to hear about your swallowing issues. occasionally i am having issues where i want to swallow and it just doesn't want to work. can easily swallow liquids, its only when i have nothing in my mouth. taking your advice and tring to avoid a 100% liquid diet.

Warren,
It sounds like you are doing very well under the circumstances. It also sounds like you are really pushing yourself. Nearing the end of radiation I began to feel tired and although I would buzz into the office for a little while and check mail, etc., I certainly did not work too hard or try to accomplish too much. Unfortunately I began to feel really worse and hit my lowest spot just after radiation treatments ended. I don't mean to pass on depressing news, but most of us had the same experience of feeling our worst in the first couple of weeks after treatments ended. The good news is that, in time, this passes as well.
I just finished playing in a three day golf tournament in the hot Texas sun with temperatures in the 90's...and did pretty well. So, there might be some bad days, but you have a lot to look forward to. Best of luck with your recovery.

Regards,
Danny G.

Warren-Kudos to your wife and "great going" to you. But p;ease do pace yourself for the final treatments. John hit his lowest point after rad was over and needed lots of sleep for several weeks. Amy

Gary
Have you had a video swallow yet...you may have a stricture which can be dilated.

thanks for the advice on pacing myself. my treatment and work are in new york city, about an hour from my house. lately have been going to office given i have to be in city anyway for treatment. plan is to power through these last 4 days of work/treatments then take off afterwards for as long as necessary when i don't have to leave the neighborhood.

haven't had any swallowing tests yet.

Usually swallowing tests are given about 6 weeks or so after end of treatment to allow worst of the inflammation to subside, and for raw tissues to heal somewhat. Ask your ENT about thie scheduling...these are very important, really helped my husband get his eating back on track quickly -- he had a number of exercises, some of which were very hard to do at first, even though he had eaten all through treatment and perhaps might have been considered "good to go" if it had not been for the swallowing exam. (He was aspirating food silently, also muscle weakness and minor epiglottal malfunctioning.)

Gail

Have my 'swallowing test' tomorrow (along with catscans) so should find out what's what. Also have scehduled visit with ENT on next day. So next couple days should prove VERY interesting and hopefully productive as far as the recent swallowing issues go....not to mention the results of the catscans.

YEP...very interesting couple days coming up.

Warren...you hang in there. It's almost over!!!

thx gary. good luck tommorrow

and thx gail on the color regarding swallowing. i now definitely plan to get tested post treatment no matter how i am doing

So I am officially done with my radiation treatment and it sure feels great to say so. Friday was my 30th and final treatment. It went much faster than I thought it would go. I realize I'm far from done yet but still thrilled to have completed the treatments and know I won't have to go to Sloan as part of my daily routine anymore.

I want to thank everyone on the OCF who helped arm me with such amazing information and such support. I had decided to post a diary of my process after reading Gary's and appreciating how helpful his was for me. Thanks to Brian Hill of course, for making this all possible.

In summarizing my experience I would say so far I found it easier than I had expected based on what I've read on this site and others experiences. No question that everyone has a unique experiene dealing with radiation and its side effects. I was able to work throughout my entire treatment process and glad I did. I am taking this week off to recover and excited I won't have to travel to new york city everyday as I have been doing for work and treatment. I know this week is supposed to be the toughest but so far its been about same as the last few.

Before I review my side effects thought it would be helpful to remind everyone my exact treatment. In order to treat a recurrence of SCC to left lateral border of my tongue (first primary 4 years ago) i was given 30 doses of radiation at 5 angles toward my tongue, stronger dosage on the left side where both tumors were, one angled straight at midle of tongue and 2 angled at right side of tongue. Because both of my primaries were stage 1 in terms of size and i had a neck disection confirming no nodal involvement at time of original tumor and this recent tumor was small and removed with decent margins and i had a clean pet/ct scan it was decided i did not need my neck radiates at all given minimal likelihood of nodal involvement. Goal of radiation was to really get at my entire toungue to make sure there were no micrscopic cancer cells floating around.

As far as side effects went, I had excess saliva for weeks 2 and 3 then went back down a bit. Never had major issues with mucous, just enough that it took me a while in shower to clear myself out in morning. I started losing some taste 3-4 weeks into process but now my taste is just neutral and in fact i can taste chocalate, coffe and vanilla. I've been able to eat a soft diet throughout and haven't lost any weight. Fatigue has yet to be much of an issue. Did get nauseous a few times and that was definitely unpleasant but got drugs to take care of that.

Mouth sores have been my biggest issue and they really started to hurt the last 2 weeks of treatment and still do. Had a sore throat for a couple of days that just went away. Patches and oxycodone and lydocaine rinses have really helped and I have it pretty well under control. Constipation is my latest issue and i'm doing all the normal stuff to mitigate that. Still having issues.

All in all I think it went great. I listened to everyone's advice and went in with a positive attitude and set mini-goals for myself along the way. Best thing i did for myself is avoided being horizontal as much as possible. Going to work helped alot. So did having such a localized treatment with no chemo. I drank tons of water and other fluids.

To those yet to go through this process know that its tough but very doable. the rewards far outweigh the temporary quality of life issues.

Now I must deal with what I think will be my most difficult challenge yet. Making the most of this new lease on life i am lucky enough to have received. I am 32 and the proud father of 2 little girls (age 2.5 and 1 yr old) and proud husband of one amazing woman. My career is just taking off and in the midst all of this I just survived cancer for the second time in my young life. I must learn from this experience just how precious my life is and become that much better of a father, husband, son, friend, employee (hopefully partner soon), etc. I must constantly remind myself not to sweat the small stuff and enjoy life for what it is. I know I am going to be a better person having gone through this experience and will look back at my life one day and appreciate that this experience was meant to be and helped shape me into the person who was able to reach his fullest potential in all important aspects of life.

Everything happens for a reason and while I'm not deeply religious I'm a believer that life has a way of balancing itself out over time. I know in the end I will have been better off having had to deal with this. (hard to think that at this specific moment nut i just know its the case just like i knew i was going to breeze through radiation)

Thanks again to all my new OCF friends and I will be in touch soon. My follow-up entails meeting once every 2 months with my surgeon and once every 2 months ( alternating) with my radiation oncologist such that one of them will be doing an oral exam each month for at least the next year. I need to research what scans I should expect and insist on getting as well.

PS. thanks to all my doctors and i look forward to working with those on this forum in pursuing oral cancer issues. theres alot more for me to learn.

Chad

Well said, Chad[it's nice to know your 1st ? name}With that attitude you will be a very sucessful husband and father and will excel at whatever goals you set for yourself. I hope one of those goals is to contribute and give back to this forum in whatever way you can. Way to Go. Amy

Yo Chad:

Congrats on finishing treatments. It is amazing how fast they go, isn't it? Making that trip...day in and day out....is sort of a pain though. Imagine you're really glad that part is over. I know I was glad I didn't have to make that 60 mile round trip 10 times a week, every other week for 5 weeks just to lay on a table for 15-20 minutes any more.

It also amazes me how different people are affected by all this as far as side effects go. I had zero pain and zero nausea but did have fatigue and swallowing problems. And you had mostly the complete opposite.

But, the one thing I think we BOTH had going in was the positive attitude which has brought us this far.

Now is the time for you to get a bit of rest and let the body catch up.

Chad,
Is sounds as if you have had a relatively easy time compared to so many of us on this forum. I hope that things keep going just as well in your recovery and that you will one day enjoy giving those precious girls away at their weddings and be there for the birth of their children as well.

Keep up the good work.

Danny G.

Update - 10 days since last treatment. This las week has been by far my worst week but think i reached bottom. biggest issues are side efects of the pain meds. the severe constipation has really messed up my system causing bloating, nausea, sweats and just general horrible feeling. was able to go finally and that helped but still constantly clogged up and i tried lowering pain med dosage but underlying pain still too much. now its a balancing act of taking laxatives to keep things moving but not taking too much which makes you feel ad too. i had been able to eat throughout and only in last week hae i gone to liquid diet and not because of swallowing or mouth pain probs but because am so constipated i ve no desire to eat and get more bloated, guess i just have to wait it out untl i can ge off these awul narcotics

The Hopkins oncology nurses have the following advice for constipation associated with pain medications: "Smooth Move" herbal tea (based on Senna, they say more effective and gentler than Senakot -- though this can also be used) PLUS (and this is important) the stool softener Colace. We found the tea at lots of different health food stores including GNC. It has a mild minty flavor and is very tasty! It can be given by PEG. It is also important to drink drink drink!

If you go three days without "action" use a enema as bowel impaction can be a real problem (we heard of couple of folks getting this, needing "lavage" which was not very much fun, per their reports!)

It WILL get better, just hang in!

Gail

Yo Chad:

You still hanging in there??? Haven't heard from you in awhile???

I'm back. Doing well. Today is one month out from my last radiation treatment. Went to work this week after 3 weeks off. prob 85% right now with only probs being a bit of fatigue (although that might just be from going back to working 10 hours a day), lack of taste, and a bit of mouth pain, although i just let my last patch wear out and didn't replace it so hopefully done with the heavy narcotics. was away from internet last week so didn't get a chance to post. hope everyone is well.

this site kept me so prepared for everything. thanks to all.

things i wish i did differently were using more patch and less oxycodone when pain peaked to avoid such severe constipation. using lactulose laxitive right away when i started heavy narcotics as opposed to waiting until it was too late.

For sore throat/mouths, ask your doc for some Barcus Solution. Needs to be compounded by the pharmacist. Mostly numbing agents, doesn't taste too shabby. Does best maybe a half hour before you try to eat something (swish around in your mouth, then slowly swallow it so it coats the throat too). Makes a HUGE difference to me!

And a teaspoon at night just before you go to bed will help you sleep too.

The (something)codone was making me nauseated (or adding to my nausea), so I've been using the Barcus in lieu of pain meds.

Sharon