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Mishie's avatar
Mishie
Member
10 years ago

Something I wish I'd known

Well this is my first blog, so a little background info. I'm 51, diagnosed with stage 2 invasive lobular BC due to my first routine mammogram followed by core biopsy the next week, in February. I had no symptoms or lumps so it was a shock! Lumpectomy w/ sentinel node biopsy done in March, no node involvement and they think they got it all. Yay! Then found out two weeks ago they were recommending I go through 4 rounds of TC chemo due to a high Ki67 index (>40). First chemo was a week ago and I'm so blinking grateful I've made it through that first week after infusion, it was gross. Radiation upcoming after chemo finishes.

So that's me.

Something I thought I'd mention was an experience I had this weekend. I really wanted a family activity together with my partner and our 2 children so we made homemade Chinese dumplings accompanied by a really nice lightly pickled salad made from cukes, gr onions and other veg. I love making this dinner, we all sit around the table making dumplings and talking, it meant a lot to me to do this while I'm feeling so down at the moment. Dressed the salad with soy sauce, rice wine vinegar, garlic, oil and diluted with water etc etc, added soy to the dumpling mixture. Ate the dumplings with hoisin sauce. I thought these were all fairly mild acceptable foods, avoided all the usual chili additions. Hahaha. About an hour after dinner I noticed this horrible furry feeling in my mouth, and pain like it was scalded...it got progressively worse despite everything I could think of to stop the burn lol. Babied my mouth along with gentle care over the next two days but it was misery!Thrush was setting in The Day After the Dumplings and I spent most of that day swishing baking soda and moaning. It seemed to have a top to tail effect, too...I'd had problems with a touch of constipation since the steroids but lets just say that was now resolved. I finally managed to get it all under control by last night, but I so wish I could have avoided that whole miserable experience!

Maybe the rest of you were aware of this, I'd read the recommended foods lists but somehow missed that we should avoid fermented foods! Like soy sauce, pickles and vinegar...while on chemo (suddenly struck me I reckon that would mean wine as well). I've still not seen this info on most of the lists I've looked at so I thought I'd throw it out there. Anyone else have this problem or a different sensitivity? It seemed like such a safe thing to eat at the time but it really almost tipped me over the edge, even noticed a significant rise in temperature (though not high enough to go to the ER), cramps, muscle aches and other symptoms. Such a small thing, such big consequences.

18 Replies

  • Since chemo kills older cells and brand new cells grow in especially in the oesophagus and stomach I changed my diet to that of a baby's. Not so much that everything needed to be pureed but just basic cerials, meats and vegs, just like you would feed say up to a 2yr old. I also took Yakult to promote a healthy stomach bacteria as that sort of went a bit wonky as well.

  • I got that heavy white coating the morning on my tongue after the dumpling fiasco and my tongue, mouth and salivary glands hurt like crazy. Have you tried the baking soda rinse at least 4 times a day? I was using that but it wasn't helping a lot at first, then I started holding the last mouthful of rinse in my mouth for about 10-15 minutes just to see if it helped to soak it and it seemed to clear it up. I feel sorry for you, it was extremely painful, especially brushing my tongue with toothpaste hurt like crazy . I hope yours clears up, it's really no picnic :(

  • I thought I was being so careful :) Oh well, live and learn! I knew about soft cheese, raw veg, undercooked...well anything undercooked (so sad, no runny egg yolks) It's a bit confusing tho, I've seen several sites that recommend yogurt to sooth your mouth, but doesn't that fall under 'live bacteria'? So I'm avoiding it in case. Sigh, bland and boring it is...

  • U poor thing... that sounds horrid....

    I did read nothing with live bacteria (fermented foods, kefir, soft cheeses etc...) is to be eaten during chemo but cannot remember where as I have gone to so many medico sites in hope of preparing for Chemo so nonidea what I read where any more...

    Also need to be super carefull with veg to ensure you wash them then peel them then wash again before chopping. Apparently normal.veg and fruit can also cause a havoc as what is usually acceptable bacyeria to us can cause a problem now ??

    I have to admit I went and bought up 2 large boxes of kim chi 2 weeks ago and Brie plus bought milk kefir several.times including this weekend knowing they are all off limits to me now. Going to be bland and boring 3 months now ??

    Jel.

  • I still can't taste my food! I have an awful heavy coating on my tongue all of the time and no it's not thrush! Tested many times.... The docetaxel has made it worse.. Even toothpaste is like ive eaten 10 chillies!  I try to eat normally but the furry covering makes it disgusting so I pretty much

    live on Weet bix and toast .... 

  • Wow, that's interesting, neither of you had this problem. I do have a lot of food sensitivities (lactose, sulfites, blue dye) so maybe I'm more sensitive than others? After my experience I read that fermented products should be avoided and thought it was for everyone on chemo. Hmm, guess I should just be very cautious! Thanks for your input, interesting how it wasn't an issue for you!

     

  • What a horrible experience.  I have not had anything like it.  I have lots of food sensitivities normally but have been a bit better on chemo, maybe the steroids have helped.  Good luck Karen 

  • Goodness you poor thing!! I didn't have anything like this while having chemo,but it is SO important to let the others know,as I feel sure that there will be many ladies who love the same foods as you do.All the best for the rest of your chemo:) There is an end,and you WILL enjoy things again!!Cheers Robyn xox