CancerCompass message board discussion started by g8orgal79 on 4/22/2008 http://www.cancercompass.com/message-board/message/all,23319,0.htm Mon, 01 Dec 2008 00:00:00 GMT Mon, 01 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am just wondering how everyone else that is going through the treatments right now are doing.My husband is in his second week of radiation (6th treatment today) and the doctor says that his tumor is getting smaller!! Definately good news to me.  He will have his third dose of erbitux tomorrow with really only a little rash on his nose.  His oncologist prescribed some clindamycin gel though we are afraid for him to use it because he had quite a bad reaction the oral antibiotic. While I realize that the topical and oral meds are different, we are still gun shy so to speak.Worst side effects so far for him are the dry mouth, taste changes, (already? he said the rice we ate the other night tasted like a sponge) and some major dizziness some times, and SLEEPING!  I knew he would be tired, I guess I just didn't expect it to happen so quickly once the treatments started, but I look at it as his healing time so I will take it.I would love to hear any suggestions of some foods that might taste a little better under the circumstances. Thanks for listening (or reading)~Brandi g8orgal79 Tue, 22 Apr 2008 00:00:00 GMT Hi Brandi,I'm 6 months out of treatment for tonsillar cancer (stage 4a), I had 3 doses of cisplatin and 7 weeks of IMRT. I'm suffering from the loss of taste and lack of saliva, too. It's better than in used to be,Steamed veggies and fish ( get those microwave steamer bags at the grocery store) work well for me, Microwaved (like a baked potato) sweet potatos are good too, I also do well with shrimp, crab and tukey sausage. I dont do well with chicken (tastes like wet cardboard) or beef ( can barely taste at all, leaner is worse). Pastas with sauce are good to me, spaghetti or lasagna with plenty of sauce, although it was a while before I could taste tomato based things again, try an alfredo sauce if he cant taste tomatos. Chinese food is something else to try, it's usually moist with lots of sauce, and I could taste it pretty much all through treatment ( when I wasnt using my PEG tube). Try a Chinese buffet to see what he can taste,Also, look for Biotene products (toothpaste, mouthwash, etc) for his drymouth, and just keep a lot of bottled water nearby. I got to where I couldnt stand the taste of our tap water, so my wife got mje some orange and mango Gatorade that wasnt too bad.I'm glad to hear your husband is responding to his treatments. I've had a PET, 2 CTs and a biopsy since December, all clean and looking forward to another clean CT in June. I hope things go as well for you two.Best wishesMike micromisterphone Tue, 22 Apr 2008 00:00:00 GMT my S.O. had his LAST rad treatment today!!!  Hurray!!!  he had 9 weeks of chemo prior to rad starting so he had already lost taste for many things.  i think by 2 1/2 weeks he was using his PEG tube for nutrition.  he is stage IV with an unknown primary so he really got blasted with radiation.  he has still swallowed water and pills throughout treatment.  as far as the sleeping goes...he has been sleeping or resting since about 2 1/2 weeks into this.  some nights he is up every 1/2 hour hacking and coughing up mucous so he sleeps whenever he can.  i think the fentynal patch he is on also contributes to the drowsiness.  i have woken him up to get nutren and water/gatorade in the tube and basically let him do whatever it has he felt up too...just getting to treatment was a huge thing.  does your husband have a PEG tube?  some people do ok without one, we found it to be a lifesaver since he was thin to begin with he couldnt afford to lose much weight.hang in there...count down the days...and don't worry about him sleeping as long as you can wake him up to get some nutrition.and dont forget to take care of yourself too! ~meesh meesh Tue, 22 Apr 2008 00:00:00 GMT hey Brandi..in reference to your husband saying your rice tasted like a sponge...early on my guy tasted a piece of banana and said  "it tastes like puppy breath"  we had a good laugh over that one...now i can't eat a banana without thinking of that!you have to find humor in all this or you won't stay sane! ~meesh meesh Tue, 22 Apr 2008 00:00:00 GMT Meesh - So glad to hear that your S.0. has finished his radiation. My husband is down to his last 5 days. It has been tough and some days are real hard to get thru but I alway's find comfort and some peace reading the messages that you and others have shared. Thank you for sharing your journey thru your S.O. treatments and keep us posted on how things are going. Deb Deb Debalou Tue, 22 Apr 2008 00:00:00 GMT Hi Deb-hurray for the final countdown!  it is the toughest time but it gives you so much hope and you can see the light at the end of the tunnel ~meesh meesh Wed, 23 Apr 2008 00:00:00 GMT My husband starts treatment today.  T1N2bM0 (stage 4a) SSC, primary in the left tonsil.  35 sessions of Tomo-Therapy M-F starting today.  He will have 3 Cisplatin infusions starting on Friday, and they will be about 3 weeks apart.  Supposed to start rad yesterday, but they called and had to push everything back by one day.  Something with the machine, I'm thinking - please let that thing be working properly!  Dread is the word of the day today. Babzilla Wed, 23 Apr 2008 00:00:00 GMT Hi Babzilla,Try not to dread what is to come (easier said than done). You are now actively taking care of the problem. This is a positive thing. Sure there will be challenges but you guys can do it. Just follow the tips that your med team and folks on this board give, put your dukes up, get ready to rumble, and you should get through this. BTW, here's a tip for the nausea that Cisplatin will cause; put some orange peels in a baggie and have your husband sniff them when he gets queasy. Also try dried ginger candy or ginger tea. Those things worked better for me than Zofran.Good Luck!Joe  Defjoeb Wed, 23 Apr 2008 00:00:00 GMT Thanks!  Once again, another great piece of advise!  Thanks so much! Babzilla Wed, 23 Apr 2008 00:00:00 GMT Thanks for all the responses! It is so nice to see people hanging in there and the sucess stories are my favorites to read. Progress is good.  I have learned alot from the board about what questions to ask at the doctors (or have my sister in law ask) Unfortunately, my husband is a roofer which with erbitux and radiation combined means absolutely no working espcecailly in that hot Florida sun.  Because we have lost his income, its all on me so unfortunately I miss most of the dr appointments because I have to be at work and espeically keep the ever important insurance going.  I had seen all the talk of the stages and realized that I had never been told what stage my hubby was.  Come to find out he is stage IV (blah!) but the dr did say if HE had cancer, he would glad to be seeing himself.  Talk about patting yourself on the back.  That was scary to me, but as someone above said, coming here always seems to relax me a little.I definately feel horrible about not being able to be here for him all day long, so I am trying to learn as much as I can, anything that will help him.One last question, is smell something that is effected from radiation? He is not on chemo, only erbitux so I dont think issues would be from that but over the past few days he has been complaining about things not smelling right and he just said the smell of my soup was AWFUL and it never bothered him before (he just had to step out on the porch until I finish eating it).  Is this something anyone else has experienced??Thanks as always,Brandi g8orgal79 Wed, 23 Apr 2008 00:00:00 GMT Oh and I forgot to add, yes he has a PEG tube but he is going to try not to use it until absolutely necessary.  When does that usually happen? g8orgal79 Wed, 23 Apr 2008 00:00:00 GMT I never had any problem with my sense of smell. Things always smelled good, I just couldnt taste them. But, things affect different people in different ways.I got a PEG tube before they would start treatment on me. It was about 3 weeks before I started using it. When he does start using it, make sure he swallows something ( water or Gatorade....anything) every day because it is possible for the body to "forget" how to swallow. If that happens, he will have to go to a therapist to relearn how. micromisterphone Wed, 23 Apr 2008 00:00:00 GMT i think my S.O. was about 2 1/2 weeks into it when he started using the PEG tube.  he never stopped swallowing his pills or sipping water all day.he saw a speech therapist at the very beginning and has swallowing and stretching exercises that he does everyday.  he also saw the therapist 1/2 way through and will see her again in a month (he just finished treatment yesterday). meesh Wed, 23 Apr 2008 00:00:00 GMT Hi Everyone, Well, 6 more radiation treatments and one more chemo next week for my husband. At this point everything, even water, tastes salty to him. He tries to have milk shakes, soft eggs, or some soft pasta. He doesn't have a Peg tube. His doctors felt that he was a big enough guy so some weight loss would be o.k. He lose about 18 lbs but the last week he has been maintaining his weight. He also can't take the smell of some things I cook. I made a simple turkey burger the other day and the smell was terrible to him. I too work. My boss is very understanding when I need to come in late in order to take him to radiation or if I have to take off when he has his chemo (he needs hydration the week of chemo because the dr is worried about kidney damage and and few days after chemo he sweats profusely and needs to be hydrated - seems to be a side effect for him) between my daughters, my brother-in-law and myself we manage to take him every day. I know it's difficult not to be with your husband every day but working is a necessity. Hang in there. Tyhere is a light at the end of the tunnel. Carol capp519 Thu, 24 Apr 2008 00:00:00 GMT Hi Brandi,Yes, I had terrible problems with smell. Everything smelled bad, even thing I normally like. My poor wife had to leave the house to eat. I couldn't stand the smell of laundry being washed and even 2 years later I sometimes flashback to that feeling on laundry days. Thankfully I have regained the proper sense of smell. Not everything smells good, but I now know the difference. Hang in there.Good Luck!Joe  Defjoeb Thu, 24 Apr 2008 00:00:00 GMT Hey there, Brandi. Just wanted to let you know, I'm also the insurance carrier and have to miss quite a lot of my husband's treatments.  I've been fortunate enough to make it to every doctor's appointment though.  Anyway, I wanted you to know I understand how you feel, but you're going to get though this.  Just hang tough.Surround yourself with friends and family.  Don't be afraid to ask for help - no matter how big or small you think it is.  Stay strong, take time out for yourself now and then.  Take care - Babzilla Thu, 24 Apr 2008 00:00:00 GMT