CancerCompass message board discussion started by Dorisa on 12/1/2006 http://www.cancercompass.com/message-board/message/all,8072,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband has just finished his second cycle of Sutent. The last month was the worst as he doesn't want to eat saying everything taste like cardboard,can't taste any kind of food except for sweet things. Does anyone have any idea as what to fix for him that would be nourishing for him. It is so frustrating trying to get him to eat anything. Doris Dorisa Fri, 01 Dec 2006 00:00:00 GMT hi doris...my husband has just finished his 2nd cycle of sutent and he experienced the same problem..his mouth was also very sore... l make him 2 sustegen drinks aday..with whole milk..3 large scoops in 300 mls milk contains 400 calories...he also has 2 glasses of v..8 veggie juice..and a must is 2 liters of water..fresh oj for breakfast then alot of little snack through the day...this has held his weight and some weeks he even puts on half a kilo..after his op he was only 59 kilos ..now he is 72 kilo's and is saying he is getting to fat ..hehehehehehe..twice a day l also mix powerade with his water... he has found that baking powder mouth washes before and after every meal has helped alot..l heaped teaspoon of powder to 300 mils water... when does your husband go for his scan doris... Lisa w Fri, 01 Dec 2006 00:00:00 GMT Thanks for giving me a little advise. What is sustegen, I never heard of that. He does drink v-8 juice, never gave him orange juice as I didn't know how that would effect his stomach, thought maybe it would have too much acid in it, like grapefruit he can not have due to depression meds he takes. My husband doesn't say anthing about his mouth hurting, just that he can't taste anything. Not sure when he has another scan, he does have an appointment with our Dr on Dec.5 so will see then I would imagine. So do you have any idea if the Sutent is helping your husband? Good luck to you and husband. Doris Dorisa Fri, 01 Dec 2006 00:00:00 GMT I don't beleive that we have "talked" before but my screen name is Bunker and I went through 6 treatment cycles of Sutent. I would like to share my experiences on taste and food. First, it really helped as a RCC patient to have a caring and engaging spouse. My wife really fit that role well and you appear to be of a similar mold. The reason I mention this first is that we don't always give our spouses the recognition that they deserve. During my first two or three treatments cycles I really noticed what I would call a salty taste regardless of the food type. I have heard others describe it a little different but always non-appealing. I also need to admit that I'm not a healthy food eater like some on this message board. What worked for me were taste extremes. You already mentioned sweets. I was not a big chocolate fan before but it was one of the extreme tastes that overcame the saltiness. I also got to enjoy Chinese and Mexican food but some folks have had trouble with the spices so be careful if you go that route. One other "trick"--we did a lot of buffets---not so much for the quantity but for the variety. It gave my wife a break so she didn't have to guess what might taste good that day. Eating out can get a little expensive but here in Minnesota, USA usually the buffets are pretty reasonably priced. Hope this helps and good luck to you and your husband. My wife and I happen to believe that Sutent is a "Wunderdrug". Bunker Fri, 01 Dec 2006 00:00:00 GMT my husband will have his scan on 5th decenber so we will know the results a week later..mel had his kidney removed 5 months ago..he had a large tumor on it..also small spread the nodes and he has a met on his lung... must say though l have never seem him looks so well...he is enjoying his time of work..and is doing some renovations to our house...he works away in and oil an gas feild..so it is 2 weeks on 2 weeks off..his doctor says it is best to have another 2 treatments before returning as it is an isolated area and they have to rely on the flying doctor..he has 18 months sick pay in hand...so he is enjoying the break.. sustegen is a protein powder..most likly called something different in your part of the world... mel has also turned into a chocoholic..really into desserts like pie and crepes and creme caramel..he is a great thai cook also... like bunker we believe in sutent..willard and bunker are insperational guys that keep us going... please keep in touch doris...we can all support each other... Lisa w Fri, 01 Dec 2006 00:00:00 GMT I am on my 10th month of sutent. It is a wonder drug!....Food tastes do change. Try watermelon, icecreame, lemon cake, salads with italian dressing, mexican rice, rye bread and you will love spaggetti and meatballs. Keep experimenting and you will find a good mix of foods. Good luck with your treatment! Michaeljoel Fri, 01 Dec 2006 00:00:00 GMT g'day from australia mike great to have ya here...woooo 10 months on sutent... your right about the spaggetti and meatballs my husband loves it...(:))also addicted to bacon sarnies... he is at end of second cycle ..looking forward to that ...can enjoy a beer for 2 weeks ...hehehe Lisa w Fri, 01 Dec 2006 00:00:00 GMT To whom ever sees this, my husband has pancreatic cancer that has spread to his liver, he is on Tarcevia and Gemciabein, he eats but says its not to tasty. patspank. John Spank Fri, 01 Dec 2006 00:00:00 GMT I can relate to food as "cardboard". I would force myself to eat 3 times a day. I would snack on raw veggies, carrots, cukes, green beans etc. Something about cold in my mouth was better than hot food. I would sometimes eat them with a dip. Cold fruit as a snack is also good. It is important to eat. You have to keep telling yourself that you are going to win this battle. Think positive thoughts, your family friends, do something for yourself everyday. I lost 30 lbs on the "chemo Diet" It has been a year since my chemo, and there are still foods that do not tast good to me. Eat small amounts of food at each meal. Good luck Vette Vette Fri, 01 Dec 2006 00:00:00 GMT Hi Doris I've just begun my third cycle of Sutent and also experience the sore mouth and taste change. I've lost 15 lbs since I began the Sutent. The only thing I can taste is sweets. I don't recommend doing a diet of sweets. My cholestrol and sugar went up according to my blood test. Because of the mouth soreness, anything acidy was painful like spaghetti sauce or anything tomatoe based. I couldn't eat anything crunchy or hard because it hurt my mouth. I do want to try Lissa's sustegen drink. I have heard about the baking powder and plan to try it this time around. Any other helpful advice from anyone out there would be so much appreciated. My scan is due after this cycle. Good luck and prayers for all of you. Janet Janetrose Fri, 01 Dec 2006 00:00:00 GMT great tip about water melon mike...my husband had some after lunch and said it was very soothing..vetta my husband is also having trouble with hot and cold food...you are right we have to stay positive..this forum is great..helps us so much hearing from other people.. jane rose my husband has his first scan on demember 5th so he will know the results a week later..keep intouch and let us know how yours went...mojo's to all... Lisa w Sat, 02 Dec 2006 00:00:00 GMT Here is a twist. Before sutent my hubby loved spagetti and meatballs and never finished a meal without a sweet. Since sutent his taste buds have left and now he is eating quite blandly. One thing he find works for him is potatoes. He likes them boiled plain. Go figure. It helps his mouth as well as his stomach. He has a small piece of fish or chicken but it is the potato that he is craving. Sweets aren't as appealing to him at all. Crazy how things work. So keep the tips coming. He had a scan after nexavar and there was an improvement and showed shrinkage in the lesions so we can't wait to see what the result will be after sutent. He will have a scan after this cycle. In early January. So we are hoping he finishes this cycle. Yes Bunker the caregivers do deserve a round of applause as food is definately a challenge. We should start swapping recipes. Keep up the good work. Mazzy Marymaz Sat, 02 Dec 2006 00:00:00 GMT I have glioblastoma multi form #4 and food had no taste for months. I was told and shown that eating a few pickels before and during meals would help me get my taste buds back. It took about month. My taste buds did come back. Just watch your appetite,I have to break mine down to many little meals. My tumor is still with me, thing is I don't think Dr.s really care. They only give out prescriptions and and do not follow up on patients. So keep up your delantin and steroids. My sesiures started because of low doses. My dosesare way to help slow the swelling down. I have had the first part cut out,then the next I had the cyber lazer performed. I can be reached at mtn1954@yahoo.com If anyone wants to to talk on this subject,I will be very happy to give out all my knowledge. Lets get this rolling for us and not the so called Drs. Cabinfever Sat, 02 Dec 2006 00:00:00 GMT Thanks for inf on pickles, told hubby about it and so he says he will try it. Anything to be able to taste again!!!! I kind of agree with you about the Doctors,although ours is pretty good but as you say they just want to hand out prescriptions. Can't keep up with them all. Doris Dorisa Sat, 02 Dec 2006 00:00:00 GMT hehehe l think bunkers likes pickles..deep fried ones...dont think we have them in oz..we do have great polish pickles...mel loves them..another nice dessert that is easy to eat is antioxident jelly..{JELLO}we buy the frozen berry mix...balckberries red currents blue berries mulberries..then l get packet of jelly apple flavor..sprinkle castor suger over berries leave for 3 hours then pour jelly mix over the lot and leave to set..mel eats alot of that when he is on the pill... Lisa w Sat, 02 Dec 2006 00:00:00 GMT