CancerCompass message board discussion started by Mediator on 3/12/2008 http://www.cancercompass.com/message-board/message/all,21915,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello friends:My husband hit the one week post rad mark today.  He is definitely a bit better but not where he hoped.  Personally, I think he expects too much but that is his typical type A personality.  He can't taste anything yet and his throat is still raw so he is still using the tube.  This frustrates him because he wants to eat so bad.  Everything he tries is so dry to him he nearly chokes.  We've tried everything from mashed potatoes to clear broth soups.  Suggestions here are greatly appreciated!He is also experiencing bouts of uncontrollable coughing.  So bad that they gave him a script and that barely works.  It comes and goes all day and is of course worse at night.  Suggestions here are appreciated too.  Thanks much,  Kara   Mediator Wed, 12 Mar 2008 00:00:00 GMT I don't know about the coughing, but I do know that sneezing was just about the most painful thing I'd ever felt.The eating will come, it takes time.  Lots of time.  At just a week out he's still cooking.  The healing won't start for another couple of weeks.If he's like I was, the dry mouth will take months to over come.  I'd go through 3 bottles of water with any given meal.  Then one day I noticed it only took 2 and then 1.  Today I can eat a peanut butter sandwich sans water :)I had my tube remove 3 months to the day of my last radiation.  At that point I could choke down some soft food and Ensure.  Most things still tasted like crap, but you get used to it.The general rule is one month of healing for each week of treatment.  I know how hard it is, but healing takes time.Hang in there,Tom ThreePutt Wed, 12 Mar 2008 00:00:00 GMT Thanks Tom.  I'll fill him in.  He lacks the patience he needs to give himself.  Sounds like everyone hear can relate.  Your ratio of rad to healing is helpful too.Thanks,  Kara Mediator Wed, 12 Mar 2008 00:00:00 GMT I had a cough after rad/chemo and the neuro oncologist at MD Anderson did a chest xray to check for pneumonia.  He said the type of pneumonia he was looking for you cannot hear just by listening to the breathing.  He said there was a type of pneumonia that aids patients get that is fatal if you do not catch it.  Fortunately there was nothing.  The cough kept on and on until I ended up at the emergency roo 2 weeks later.  They put me on an antibiotic thinking it was bronchitis.  The antibiotic worked.  I did end up with laryngitis for 2 more weeks.  I am now much better and the laryngitis is leaving.The emergency room did another xray and lots of blood work.  They did not want to leave any thing not done.  I was very grateful.Have it checked out and good luck.Mylinda Mylin Wed, 12 Mar 2008 00:00:00 GMT The coughing is horrible!! Over two years out of radiation, I still occassionally have an uncontrollable coughing fit, when I come into contact with dust, smoke or cold, dry air. The only thing that helped me at night during the worst of it was either sleeping propped up on the couch or in a recliner. I did that for over a year! That way, the secretions don't drain as much. Also, use a humidifier A LOT, especially if you are running your heat at home or at work. It keeps the air moist. I also used plain saline nasal spray and that would help some. I have been on Lortab Elixir for two years now and that helps control the cough also. But it really took me a long time to get over treatment, and I am still using a PEG tube, so unfortunately I can't speak to the eating question. I do know that it is very, very important to try so that those swallowing muscles do not atrophy. Gagirl Wed, 12 Mar 2008 00:00:00 GMT I remember the coughing, then gagging, then vomiting. I think it's normal stuff, and it just takes time; but good idea to check and make sure it's nothing else unrelated to the rad, etc. I'm 11 1/2 mos out of treatments and basically still have NO saliva and about 30% taste. There may still be some improvemtns, maybe not. Eating is still a struggle and water is still necessary for every waking moment and especially eating. A whole p/nut butter sandwich w/o water ? Wow-sounds like a dream come true! (on both counts) Gayle   gayleann Wed, 12 Mar 2008 00:00:00 GMT  On 3/12/2008 gayleann wrote:A whole p/nut butter sandwich w/o water ? Wow-sounds like a dream come true! (on both counts) Gayle   I was lucky and the radiation only killed the right side salivary glands.  My left side was "stunned", but fought back. It's now doing a pretty good job of compensating for the dead right side. I still leave a sticky slime on drinking glasses :)My docs told me it would happen like that.  70% of the radiation was targeted on the right side.  The left side just got some "just in case" shots.What pisses me off the most about this whole deal is that ice cream still tastes bad :(Tom  ThreePutt Wed, 12 Mar 2008 00:00:00 GMT Hello There,I finished radio May 2007 and I still have a difficulty swallowing, I am now on the Budwig diet. I must admit I feel so much better now that i can get some real nourishment. My wife makes fab smoothies, adding banana etc thinned with fresh juice or sometimes even champage as per the diet and they all just slide down a treat.Hang on in there, and try aloe vera juice for healing it is amazing. nineyrolfr Thu, 13 Mar 2008 00:00:00 GMT My mum had the same problem - and it is terribly distressing... the doctor gave her a kind of vapour inhaler machine which was meant to help in some way - sometimes it did - sometimes not - but she had many other complications so these were most likely causing more problems. might be worth a try. anything on his throat (including our 6 litres of saliva a day!) will probably be irritating it at the mo.... very hard times, but it does get far less sensitive. Definitely plague your GP and specialist to keep thinking of different ways to sort it - there are other ideas out there but the med profession sometimes need a push! if i think of anything else i'll email. bestlibby libbyr Thu, 13 Mar 2008 00:00:00 GMT My mother had that terrible cough.  We treated it with Hycadin ( a cough syrup) and used a nebulizer.  She also had acupuncture twice a week, and many of her symptoms, like the cough, did clear up. Rosalind Thu, 13 Mar 2008 00:00:00 GMT Hi Kara,A friend of a friend had radiation on somewhere in the throat area, not exactly sure where...anyway, post radiation, he would cover his food with gravy (mashed potatoes with brown gravy, vegetables with chicken gravy, etc.) and that made eating much easier for him. Hope this helps.God  bless you and your family.    andie Thu, 13 Mar 2008 00:00:00 GMT things will get better I am 5 months since last treatment still sore throat but getting better. I did drink alot of ensure when it was to painful to eat good luck hank in Md grob798 Thu, 13 Mar 2008 00:00:00 GMT HiI'm Sue in the UK.after intense radiotherapy with cetoximab, by husband too could ne eat, drink or swallow and was fed through a tube.  He coughed insesantly but after a few weeks he was able to start eating and drinking,  I think the coughing is caused by excess fluid in the areaof the radiotherapy, whilst the salivary glands in the mouth tend to dry up..  After 3--4 weeks.things started to  improve a little and he could take small sips of the same feed as he had been taking from the tube - he could also take finely seive soups and thin porrige.  I found he was better with these than with things like juices and water, which because of the damage caused by the chemo and radiotherapy, tended to "go the wrong way" and make him cough even more.  Many things you wouldn't expect like citrus drinks,would burn his throat so you have to use trial and error, and as things improve introduce thicker feeds (mashed potatos are very cloying and difficult to swallow) try baby foods which are quite bland. Nothing even slightly spicey, as this too will burn his throat.good luckgetting into he lungsgradually - jabez Thu, 13 Mar 2008 00:00:00 GMT Hello, I am 2 years post radiation.....I am also a type A person....Your husband will learn patience....he will get better, but, it takes a while, he will feel a lot better in a month. Don't get in a hurry to remove the tube, he can survive on liquids and he must give his throat a chance to heal. One day at a time at this point.He will never be the same and the quicker he realizes this is the "new me" the sooner he can go on with his life.Keep your head up and remain positive, things could be a lot worse. May God be with you, Ronny Raines Ronny Thu, 13 Mar 2008 00:00:00 GMT Hi KaraFirstly, let me say I wish you and your husband well in his recovery. My husband finished his radiation for throat cancer on Dec 8 2006 and now 16 months later has just had another clear checkup with no return of the cancer which we are very thankful for. We identify with the problems in swallowing for he had great difficulty also. We got around this by blending many things for him in a regular blender. At first it was just bananas with a little added water and some other fruit and gradually he ate a little more. He loves bananas so that helped and after a while he got to where he could eat soft foods and then regular foods. Hang in there. It gets better. God bless. Carol-Newfoundland, Canada Adjca1 Thu, 13 Mar 2008 00:00:00 GMT Oh my gosh!  You guys are all so wonderful.  I really appreciate all the responses.  I'm hearing a common theme with the coughing: get a nebulizer.  I was already pondering this because his cough is often so dry and deep.  It sounds similar to me when I get bronchitis.  The other common theme with eating seems to be: it varies greatly, except taste.  I've decided to just give him a bite of everything soft I eat.  It really doesn't hurt going down, but just irritates.  What makes him crazy is wanting to eat when he can't taste.  Supposedly, his salivary glands weren't damaged in his rad fields.  Supposedly, this is temporary.  Call me skeptical as I read thru all of your postings!  So, I'm going to implement a lot of your suggestions, one at a time.  Trial and error with each of them wll let me know what works for my hubbie I suppose.  As always, thanks.Kara Mediator Thu, 13 Mar 2008 00:00:00 GMT kara, I am 4 months post rad for cancer base of tongue. I still have some difficulty swallowing and I cough a bit. Soda water is constantly at my side. it takes a good deal of time to recover and with that, a great deal of patience. Most of all patience. yu cannot judge improvement based on "how am I today versus yesterday". You hve to look at where you were a month ago. Eating will improve. I eat soft wet things mostly - eggs, French Toast, stews (though meat is difficult often). I had the tube for 3 months and it was a good thing. I am now on 3 or 4 Boosts daily plus about 100 calories by mouth. it's true that most food tastes bland at best( often like sand or wood or string) and that salivation is a problem that will likely remain so. but I am told the taste will improve. The mucositis will dissappear but the mouth remains very sensitive - no spices! Kepp up the tooth care and mout washses with baking soda. Best to you both. Laurence laurence Thu, 13 Mar 2008 00:00:00 GMT Laurence you are so right on the nose.  Patience is not my husband's virtue.  He has NONE.  This is something I was blessed with but him, not.  I will say this stubborness has helped him thru treatments.  He faired so much better than the majority.  He was never ill from the chemo and barely ill from the radiation.  He dealt mostly with sore throat and skin damage, both which are healing.  If he would just be patient now that he is done, he would be okay.    Thank you.  Kara Mediator Thu, 13 Mar 2008 00:00:00 GMT Kara, when I started eating again the thing that helped me were buffets.  Yes, buffets.  Especially the breakfast type (soft food, eggs and whatnot).  I didn't eat my moneys worth, not even close, but it did give me a chance to try different things. It helped me figure out what tasted good and what types of things I could or couldn't eat. At first we experimented fixing meals at home, but if I didn't like or couldn't eat something, we have to throw it out.Well, at first we didn't throw it out, Joyce would eat it.  I'd take one bite of something, not like it and hand it to her. After she gained a few pounds, that practice stopped :)Now, I know people are going to freak out because going to a buffet is like jumping in a germ pool. I was very careful.  I tried to take things from "fresh" pans and used gel hand sanitizer after each trip. I never had any problems.Tom ThreePutt Thu, 13 Mar 2008 00:00:00 GMT Hi: Congrats for getting past the rad it seems so benign at first but catches up with you. I am one year past my op and had my tube removed two months ago after nine months of use. For coughing, I too spent a long time sleeping in the upright position in order to drain my mucus while using a humidifier and a power vacuum. Unfortunately your husband is going to probably have to give it time as its been said that radiation is the gift that keeps giving and thats unfortunate. As to saliva, I still am not fully able to keep my mouth moist especially when eating or talking-water helps if he can swallow if not I suggest Biotene both the rinse and the toothpaste. I still use both of these items especially the rinse at night as my mouth just dries out. Once again, tell him to take his time this too shall pass. Good luck. Ed Ejw00100 Thu, 13 Mar 2008 00:00:00 GMT I didn't have the coughing, but the eating problems still linger 7 months after last rad.  I am finding that things are improving, but know it takes time.  I found that salads or foods containing moisture such as tomatoes, beets, most vegetables are easier to swallow.  I long for a peanut butter sandwich!  I used the tube for 3 months and added "Boost Plus" to keep my weight up.  jessanddonna Thu, 13 Mar 2008 00:00:00 GMT I often thought of the buffet idea-perfect way to try and find what works and what doesn't. Tired of shopping for food that "looks good" but doesn't cut it. Or wasting a cooking effort that turns out to be for just one. Lots of waste, for sure. I cannot eat meat at all; maybe a bit of tiny bits of chicken, tuna or salmon. It's the taste AND the texture-a bit odd. I wasn't a big meat eater BC (before cancer) anyway, but a good, juciy hamburger,.........if only. Maybe someday. Gayle  gayleann Thu, 13 Mar 2008 00:00:00 GMT You might want want to check to see if your husband has "thrush". My mom got it while on radiation theropy. It was real bad. She said it felt like razors in her mouth. She was also very dry in the mouth as well.  She coughed and was totally miserable until she was put on medication for it. A nebulizer treamtent also helps. He will cough a lot more after and produce a lot of phlem, but that is what you want. Scandishakes are like ensure but much better. They have 600 caloires per serving, and 45 grams of fat. It is great becasue it helps keep the weight on so much better than the "ensures" and the like. Scandishakes can only be ordered by phone or email. Got them info. on them from one of the nutrtiionist at the radiology place. You could "google" them too as well. i do not have the info. For a while, it would take my mother all most 3 hours to drink 4 ounces of the shake, and 4 ounces of gatorade. (another product highly reccomended). Good luck and hang in there. zcj69 Fri, 14 Mar 2008 00:00:00 GMT Kara, your message is exactly what I would say about my husband- type A personality with coughing and mucus and has all the same side affects but is eating on his own because he refused continuation of additional therapy after the first 7 weeks of planned treatments (radio and chemo).He has lung cancer stage 3B.  The tumor is now gone and the pneumonia is gone but the cough and mucus are still taunting him.  His back hurt so bad and the coughing was putting him in pain.  The doctors did a vertrebralplasty to help cement his T9 vertebrae which for some reason collasped since treatment (in the last 5 weeks).  Have any of you heard about this as a side affect of radiation and chemo?  Your post has helped me with some ideas for my husband...vaporizer, etc.  The pain he is going through is horrible.  Thanks everyone for the info. PhyllisDiane Sun, 16 Mar 2008 00:00:00 GMT Hi Kara, Charles coughed and coughed after treatment. It took him about 4 months after treatment to really be able to eat and not struggle through a meal. He's still coughing, a year later - but not that often. Sometime when he's eatting he feels like all the sudden he can't swallow and then it passes. I think it just takes a while to undo what's been done. Julie21 Sun, 16 Mar 2008 00:00:00 GMT