Mazzy Husband on Day 2 of Sutent

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glad to hear your husband is doing well on sutent mary.. mel develpoed a sore mouth on day 17 of sutent ...l made up baking powder mouth wash for him..which he used before and after meals..says it helped alot...his mouth remained senitive till 3 days after he stopped the first course of sutent..also had to change his toothpaste...to a more sensitive kind as that was stinging his mouth...

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Mazzy

Ha Lisa thanks for the tip. Yes it is all trial and error and I appreciate any tips we can get. If sore mouth is as bad as it gets then it will be awesome. We were in trouble at this point on nexavar and hubby was admitted to hospital and taken off the drug. We are hopeful with sutent. Thanks again and take care Mazzy

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Mazzy

How are you doing Melissa? So kind of you to respond. We are thinking of you. Mazzy

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Mazzy

Man I keep hitting continue sorry. It is nice for us wives to have positive feedback from each other. I appreciate where you are coming from. I email with a couple of other wives so let me know if you want to connect. We do have a different perspective on things. Mazzy

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Willardnl

Thanks Bunker for replying to Willard. This is his wife contacting you now and it's my first time chatting with you...you are such a wonderful inspiration to my husband and we both appreciate your comments more than I can express. Yes, my husband will have his C-scan mid November and this will be his first one since taking Sutent. It will be an anxious time for both of us, but I'm just wondering how your scan was the first time round. Did you also have one during your second cycle of Sutent? This is day 10 now for Willard on 2nd cycle and he's doing fine with it. Only problem now is to keep the encouragement coming and I know any advice you can give him will definitely be welcomed, more than you can imagine. You mentioned about the PET scan and we will ask his doctor about that, but his next appt with him is not until Nov. 30th so it will be awhile yet. By then, he will have his C-scan report. Did you have a good report on your second cycle or did it take longer? Yes, he also has that smaller tumour behind his ear which is now once again almost completely disappeared, although it did reappear only two days after ending his first Sutent cycle. Bunker if you can relate to us once again just how long it's been since you first started Sutent it would be appreciated. I know we did read your comments about that many messages ago, but now cannot find them. Thanks for the chat and please keep in touch, as you do inspire all of us more than you can imagine. Dee

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Bunker

50mg. is a nice round number!! Day 11 is almost halfway through the cycle. Little to report is excellent news. I didn't notice any mouth soreness until about my 4th treatment cycle but I did notice a difference with taste. Sometime during my first treatment everything started to taste like salt. It made it tough to eat until I started to play a little game (in my mind). I tried to eat a lot of variety to get diffeent tastes and stayed away from salty foods (chocolate was the best). The odd thing was that a food processed with salt (potato chips for instance) did not taste salty but food with salt added did. Once we were at a resturant and I ordered something odd. My wife asked me why I ordered such and such and I said since everything tasted like salt I just ordered the cheapest item. I knew that I had to keep my nourishment up and the mind games seemed to help. The poor tech for my CT/PET though. I drink the contrast (which normally tastes pretty bad) all at once and she just looked at me----I never told her that all I could taste was salt and that was a lot better than the normal contrast taste. It's those little victories!! Please stay in touch and tell your husband he's on the home stretch.

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Bunker

Nice to meet you Mrs. Willard (just kidding, Dee). It's good to chat with the patient's spouse---sometimes it's easy to forgot that key person and all you go through. For me, I could not have done it without my wife to keep me grounded, keep track of my appointments and "slap" me back to reality when I got too mouthy. She's a saint. Onto your questions: I had my first CT/PET scan after my first treatment. This scan showed a 35% reduction in my tumor's size (which was on my liver). This really gave me a boast as it told me that we were definately on the right track. You may not have known this but we were participating in the Pfizer trial program and there really wasn't anyone before us that we could talk to and see the positive results. A 35% reduction made all of the side effects that much easier to take and believe me, I thought about that number every night when I took my next pill. Because I was part of the funded trial and since Pfizer wanted to collect all of the data on me that they could---we had CT/PET scans after each treatment cycle. Probably a bit overkill but it was nice to have ongoing and regular feedback. My results were not a lot different than many of the patients on the trial per my doctor so please pass that news on to Willard. The CT/PET scan after my second cycle showed more shrinkage but more importantly it showed that the tumor was dead. This is the point I made a few postings ago about the CT scan vs. the PET scan. By itself the additional shrinkage would have been good news but the dead part was really exciting. If someone would have asked me that day I would have said what side effects??? I first started Sutent in late August 2005 and finished my last treatment on 4/30/06. Hopefully I got all of your questions addressed. Say hi to Willard.

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Bunker

Good morning to all---Willard, Dee, Lissa, Mary. I wanted to lighten up our converstion a bit by wishing all of you a Happy Halloween. After many, many years of sitting quietly at home I've decided to actually go door to door this year. My costume you ask? Why, I'm going as a VERY BIG Sutent pill, what else????? Believe me though, I'm a little concerned about a 49 yr. old male running around in tights with all of the youngsters---do you think I'll stand out too much? It's going to be around 32 degrees less the wind chill. I sure hope I don't freeze my "capsule" off. Brrrr. And THEY wonder what the long term "mental" effects are of Sutent!! Just ask my wife.

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Mazzy