Glad you got them @ake & hope you managed to get some sleep. I managed 5 hours continuous sleep which I was fairly happy with. Been wide awake since 5:46 tho. Hope today goes well for you & keep us posted how you get on xx
Has anyone been told what we canāt eat? Iāve read yoghurt, live stuff but not actually been told anything by nurses. I take an Actimel
In the morning and Iām slightly worried itās the wrong thing. Anybody got any lists, info, guidance? If not Iāll contact the chemo nurses. X
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I got given a list but I canāt find it now, typical! From memory - no shellfish or soft cheese, no raw nuts, no probiotics like Yakult etc, no soft eggs, and meat should be well done. Oh and no takeaways! Well, no rice based takeaways anyway as we canāt be sure the rice is freshly cooked. I think that was about it 
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Magic thanks for that. Iām guessing Actimel is the same as Yakult so a no then!
Ooo Iām interested in this too. I had a vague idea of some to avoid but that list is helpful. I didnāt get given anything. Bit gutted about the rice takeaway thingā¦I can see why but oh no!
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You do need to watch it with stuff like Brie and ensure salads are washed thoroughly too do check with your team and follow guidance thereās also spices I was advised to refrain from during chemo too but check with your team and follow their guidance 
Shi xx
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I would love to see a list if anyone has one! All my info like this has been self-sourced off these types of sites. In my head pregnancy-type rules apply on the food side of things. However, I bought some fancy grapefruits from a fancy greengrocers at the weekend before starting chemo, randomly googled about eating grapefruit on chemo before consuming one yesterday & found that you shouldnāt! So I wonder what else there is Iām missing!
Similarly I found out thro info id found myself that you shouldnāt exfoliate but no one has told me this either! The self-care piece is a minefield!!!
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Iiāve been eating raw nuts - almonds. I wasnāt told anything either.
Oh my goodness I didnāt know about exfoliating. I did know about grapefruit only through my husband having a hernia and it affects medication. Iāll see what I can find out thatās definitive and not woo woo. Although I do find medics a bit uppety when it comes to holistic stuff.
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I bought the Royal Marsden Cancer Cookbook by Dr Clare Shaw, Consultant Dietitian at the Marsden. The only forbidden foods she mentions are raw eggs (a source of salmonella), liver pate (a source of listeria), cheese made from unpasteurised milk and sushi.
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She also says āNuts (salted or unsalted) and dried fruit make a nutritious snackā.
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I feel like I have peripheral neuropathy in one hand 
it feels horrible. I used the suzzipad cold gloves & socks but just reading now I should have used them 15 mins pre infusion & 15 mins post. Has anyone else noticed any of this? 24 hours post treatment feels a bit soon.
Iām so sorry I canāt help at all on this, Iāve not heard anything of what youāre talking about. I didnāt do anything with my hands and feet. Iām slightly alarmed!
@nicnac17 Itās only on certain regimes that itās a potential side effect so Iām sorry if Iāve freaked you out. Iām sooo freaking cold. My temp is fine but I am going to have to call the line in the morning if Iāve not warmed up.
Thanks so much, I managed 7 hours sleep the first night on steroids, I think I was just so exhausted. Last night, second night, I was crashed out at about 10.30 or 11 but then up at 2.30 and up at 6.30am. Very unusual for me, I am not a morning person! I only take steroids for three days every cycle though I think - day before, day off and day after chemo - does the sleep get better?
I had an allergic reaction to Phesgo so havenāt had chemo yet, back in today to try again. Iāll post another reply about that.
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Hey sunshine and unicorns, I just wanted to let you know I had an allergic reaction too, so solidarity. Mine was actually to the Phesgo and was much milder than it sounds like yours was. It started with a slight temperature, but my temp has already been abit high at baseline so they werenāt too worried. You are monitored for 30 mins with Phesgo loading dose and I was actually past that (just) and chatting to nurse about cold cap when suddenly I started to feel unwell. Blood pressure up (only a bit I think?), maybe other things too Iām not really sure, hot flush, especially in my face, struggled to concentrate, spreading of fluey type aches and pains from lower back up and down, and I had one flash of my vision. I am due on my period too I think so was already a bit achey but this was suddenly worse. Just felt generally and suddenly fluey/unwell, but quite mild. They put antihistamines through my IV immediately. Then I was a bit lightheaded but it might have antihistamines. Then sore throat and very slight headache but they went away quickly. I had some local reaction too.
Dr (I think??) who checked me during reaction looked at my notes and said she didnāt want me waiting any longer for chemo, as that has its own risks - she was willing to risk the allergy to get the chemo into me today - I was happy to consent, but other medical professionals were unhappy with that, and the nurses (I think? Havenāt sussed all the uniforms yet!) reassured her that they could squeeze me in tomorrow. Not ideal to separate chemo and Phesgo but they have reassured me it will still be effective if only decoupled by one day.
I was monitored for four hours - every 5 mins, then every 15, then every 30, then every hour. By time I went home my obs were back to normal but I was still flushed. Temp been a bit up and down overnight but nothing major (I rang to check).
Because I am in a big mess with consultant oncologist I am not sure who they are going to talk to about what next but I am very glad they will at least continue with chemo today. Really hope I am not allergic to the docetaxel though! Never had an allergic reaction to a med before.
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On the upside, nurses seemed horrified about my experience with first oncologist (I kept finding out more things that had gone wrong) and while they canāt do anything they encouraged me to advocate hard for a change. So I am not sure what that looks like but it was validating.
Oh Iām so sorry to read this, do you have an electric blanket type thing, one that goes on top or one you put under your sheet. That could help and you can control the level of heat. I have one for the sofa which Iāve had on each night since Monday itās kinda set me up as by 9pm Iām off to bed and read then sleep. Although I was up at 4.30am this morning went back to sleep at 5.30 alarm woke me at 6.40am. My temp is fine but my husband says I feel like Iām burning up, a furnaceā¦.
I hope youāve slept well and good luck if you need to call the line x
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My first chemo was Monday and I slept on the sofa for 2 hrs in the afternoon was in bed by 9.30 and asleep at 10 woke at sometime in the night for a wee then went back to sleep. So I was happy with that as they did say steriods would buggar it up. Tuesday night pretty much the same and last night woke at 4.30 back to sleep by 5.30 and alarm woke me at 6.40 this morning. Yesterday and this morning tho I do feel very lethargic, dopey, space cadet like.
Sorry about your reaction but good luck today with chemo, let us know how you get on. X
Oh I am so sorry to hear this. How strange it took 30 mins to come on. So you are back for a do over again today? I know exactly where your head must be right now itās super shite. I tried so hard to be super positive and go in fighting for my first one, a curveball like this is not good for our mental state! I was also due on when I had my reaction (and will be due on for my next chemo ) which isnāt a nice feeling with all the other feelings at that point! My only positive from my allergic reaction is it was clear to me all staff on chemo ward extremely well trained & I feel incredibly safe in their hands. Crossing my fingers for you today love
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