Forum Discussion
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
Wow, that was a great list SQ! I knew about most of them, but soft serve ice cream was a surprise (though I have to avoid ice cream at the best to times due to mild lactose problems, so at least I was safe from that.) Just got home from hospital, my temp went up to 38 on Tuesday and I trundled myself off to the ER. Expected to come home in a couple of hours but, ha, I just walked in the door. They didn't find any infections but jeez, who knows, maybe whatever hit me over the weekend sent me on a downward spiral. Anyway, home and feeling better than I have since Chemo! Yay, I love home!
Yes! Yum! LOL!
Hi Mishie, Inner Health Plus Dairy Free, from the chemist is what I took right through chemo, and indeed still do 7 months down the track:)
I was given the same advise as scorpionqueen. Gives me an excuse to order slow cooked pork when I go out. ?
Bi carb Soda mouthwash after every meal since starting chemo.....
My GP says the coating is the bodies reaction to try to protect....the chemo kills all fast growing cells..i.e hair, nails and mucous.......so your mouth, ears, nose and even "down there" will dry out and feel gluggy......she said it all should return to normal soon after chemo stops....
Always ask your Dr about any changes you may experience....and it certainly is no picnic!
Xx
In addition....while on chemo my Oncologist recommended I avoid take away, pre packaged fresh foods...i.e salads, fresh cut fruit., salad bars, food in bain maries...soft serve icecream! ..pre cooked prawns, soft cheeses, unpasteurized dairy goods, avoid bean sprouts....eggs, especially raw.. i.e Bearnaise sauces etc......NOT to take any supplementary goods...i.e vitamins, herbal treatment .....if I did choose a take away or a meal in a restaurant it had to be extremely well cooked......so if I go out, which during chemo has been rare, it was a dried out steak.....blah.....you must wash your fruits and veg extremely well then again after peeling....the enemy here is LISTERIA......Chemo kills everything in your immune system so youre at a greater risk of getting an upset tummy or worse....at first I was terrified of eating certain things, but I have relaxed a bit now, and have eaten out a few times, you just have to be choosy...but if prepared at home you can assure that all precautions are taken that your food is properly prepared and fresh....It's all abit frightening when its all pointed out to you but it's a small sacrifice to ensure you don;t get any more sick while having treatment...
Xx
I guess it might have been timing of your mouth becoming over sensitive and eating those foods. I know I can't eat really spicy foods now as it not only burns my mouth but stomach and all the way through. I was advised no live bacteria yoghurt due to risks to us...do check with your team about yokult. It seems to vary a lot what is recommended. I have to take nexium twice daily to assist with the upset stomach for at least 10 days. Hope things improve soon. Kath x
Hi what a unpleasant experience. I didn't have that but my food cravings changed some things I just couldn't dream of eating - other things I hadn't eaten for years went down well in the end I just ate what I could. I lived on gargling bi carb of soda - stopped any mouth ulcers but took away my craving for salt. I now after stopping chemo early Feb eat even better than before lots of vegetables salads fish prawns chickpeas - lol and I can't stand chocolate or sweet things. I never was unable to have a wine though at times it did lose its appeal!! Best of luck for completion of treatment
Thanks Brenda. I asked the oncology nurse before chemo if probiotics were ok and he said yes. I am a bit lactose intolerant but can have a small amount of dairy. I might give the Yakult a tenative careful try as my tummy is really not happy still. I've been on the BRAT diet the last few days just trying to get through this. Baby food! that sounds horrible, but sensible :D
