I got over the black pudding thing 
Ohhh Iām so with you on the honey nut cornflakes @millyk!
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I get cravings for unsliced bread and cheese and beef dishes are the only meat that tastes the same as pre-treatment, so itās my go-to meat (if I were vegetarian or vegan Iād have lost so much weight by now as most other things the taste has been messed up by chemo mouth).
Any dish combining chicken, cheese and some sort of tomato makes me nauseous now (never did before), not sure why. My sister made a gnocchi dish that had all three and I nearly gagged, didnāt want to hurt her feelings so had to play up my aches. Just the thought of it now makes me feel ill. I hope that goes away.
Spaghetti bolognese had always been my favourite meal but I canāt stomach the thought of it now. Canāt cope with melted cheese either which devastates me as Iāve always loved a good cheese toastie 
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Horrible isnt it. 
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Iāve been lucky (as a cheese fiend) that itās just cheese with chicken. Can eat cheese with beef (before only ever ate it with chicken or beef) or with no meat, itās just the combination with chicken that makes me gag. I used to like it on pizza but obviously have to avoid that now.
Can only stomach chicken without sauces (except meat gravy).
Iām usually a bit of a sweet tooth but this chemo mouth is making me far more inclined to seek out savoury food when it hits. Canāt even tolerate sweet drinks like fortisip (which I sometimes end up having to resort to as I canāt bear to eat). When I have chemo mouth and Iām thirsty all I want to drink is water or orange juice and even they taste foul.
I have my favourite meal of a meatball sub sandwich the day before every treatment (while I still have working taste buds). Already looking forward to Tuesday when I have it.
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Oh thatās a good idea, I might start doing that the day before treatment day, scoff something I really like. Yeah chemo mouth is awful, Iāve really struggled to find something to drink this time round, every just tastes wrong 
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Well Iām sure one of you said red wine was good for you so Iām having a small shot glass full ! cheers everyone ! Happy Sunday and hereās to another week ticked off xx
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Iāve just opened a large tub of quality streetā¦ā¦
I canāt say Iām craving anything and my chemo mouth seems to be different to everyone elseās. My teeth feel like they want to leave my gums and my gums go wrinkly and feel like they retract from my teeth. Having said that I only have that for the first 10 days after my chemo.
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Morning September neighbour group. Catching up on your posts. Sorry some of you are having a tricky time, though i suppose we all are on and off right now. I see a few of you asking about move from EC to docetaxel. I had first docetaxel last friday. No dodgy reactions, which was my big fear, and Saturday i felt fine. Yesterday not so good. Aches, pains, sore throat and weakness. I have pegfilgrastim so could be that. I have finished all meds for this cycle now so I will see what side effects drop. On EC, i felt ok mostly, but i feel crappy on docetaxel.
Hope youāre all feeling great and that fellow parents get through halloween half term holidays. Xxx
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*update
Absolute jokes! Went to hospital as advised by A&E for 9am this morning. They took my bloods again. Asked me to wait 3hrs later been sent home again as no slot for me to have a scan. Someone will ring me with an appointment and Iāll have to go back in again for it, God alone knows when.
Iām on the yreatment ie blood thinners so they arent concerned.
But what if its not a blood clot? Then Iām not on the right treatment am I? And if it is, by the time i get a scan it may have been dispersed by the thinners and well never know.
So frustrating 
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Omg @luckyduck1 what a shambles! The blood thinners are serious medication and you donāt want to be on them unless you really have to (speaking from experience!).
I have a question for you as obviously Iāve been thro the same thing - when I went in for my blood clot on my PICC I went to the hospital that put the PICC in (which is over an hour away) - they wanted to send me to my local a&e but I wanted to go where I knew they knew all about PICC lines! Is this an option for you or does your local hospital do the PICC lines?
If not can you speak to your GP and get them to advocate for you? (My GP has been passed my prescription for blood thinners after the first month to do them on repeat and really isnāt happy about it)
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I have my chemo at Mt Vernon which is a small hospital with a Cancer treatment centre but no A&E so i was sent to Hillingdon. Same borough/ trust. I was sent to Lister in Stevanage ( also same trust but 2hrs away for my flush as again they couldnt accommodate at Mt Vernon ) so i really dont understand. They do have the facilities for scans and xrays at Mt Vernon and iām seeing my oncologist on wed so maybe she can push for this to happen there. I dont understand any of it. Itās quite ridiculous. Our NHS is broken 
They said the picc line seems fine, they have flushed it and used it to take bloods several times now, so if Iāve a clot itās not on/ on the line
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Wow. Surely you shouldnāt be on blood thinners if you donāt have anything to thin???
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what do i know!!
I mean Iām sure they wouldnāt do it if there was a risk but this must be so frustrating for you! All this back and forth isnāt ideal when youāre not at your best to start with 
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I would push your oncologist for the scans at the cancer centre. There are so many bugs out there, the last place you want to be is a busy A&E dept.
I hope you get some answers soon 
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Hi everyone, I have been catching up as I havenāt been on here for ages. As always, lots of super helpful information and plenty of laughs too
Hope you are all doing ok and for those who arenāt, sending hugs and strength 
I had another rough ride with EC #2 and ended up back in hospital to get the sickness under control. In week 3 now and feeling like I can function like a human again, even went into work today.
Oncologist is reducing my dose for #3 by 15% to try and reduce the sickness. Has anyone else had a dose reduction?
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Sorry to hear you ended up in hospital. I had EC #2 last Thurs and am starting to feel a little more human this evening after being completely exhausted for most of Sat, Sun and today. I havenāt had a dose reduction but they did suggest it might be necessary if my liver didnāt play ball. Cycle 2 was deferred a week then my LFTs were ok again so I got the full dose. I guess everyone responds differently but Iāve had barely any nausea and Iām wondering are we all on the same anti-sickness meds? Whatever theyāve given me definitely seems to work. I donāt know if you have an option of trying different medications next time rather than reduced dose?
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Me too, I ring loads. Iām glad I have as a couple times Iāve been 50/50 on whether to ring, and then I did, they called me in, and it turned out to be something serious. Do ring ladies, they are so lovely and they donāt mind at all if it turns out to be nothing!
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Hi all,
I finally managed to catch up with all the messages again.
@lizk Iām on a different regime to you - Docetaxel, Carboplatin and Phesgo - but I had a dose reduction of 10% after Round 1, as I had been in hospital for a week - main issue was being neutropenic but I also had almost every other side effect in the book that time round. Like someone else said on here, my body seems to hate Docetaxel (I think itās that one). Hopefully my cancer hates it just as much! Round 2, after the dose reduction was better on all fronts except the nausea which was out of control. What was yours like? I could barely eat, and on my worst day, even threw up water. I think I managed about 1 piece of toast or some instant noodles per day for about 7 or 8 days - and vommed every day. So rough. Anti sickness wise they put me on Ondanestron 8mg 3x a day and Metoclopramide 3x a day. Iāve tried cyclizine too. I would say they donāt help, but I took one dose a couple of hours later and then couldnāt even keep water down so I guess they do help. Iām now nervous they will want to reduce the dose further, cuz I do want to zap the cancer. But I asked a friend who is an oncologist and he said he was comfortable with anything up to 20% reduction, and my oncologist said something similar, so I think itās OK. Good luck, I hope it helps you feel better! If nothing else, it is nice to feel a bit more human - I didnāt have any āgood weeksā in Round 1, but Round 2 has been a bit better and like you I even managed a bit of work finally!
And yes, I have been having weird hot flushes and red face. Iām not on any hormone treatment except that monthly injection (Zoladex) so not sure what is doing the flushes.
The one side effect I didnāt get in Round 1 was the tingling in hands and feet, but that has just started in Round 2 - hoping it doesnāt get worse!
@sunshineandunicorns how are you feeling now? The ācanāt keep it togetherā feeling is SO UNDERSTANDABLE. We are being poisoned to save our lives - no wonder we have some tough days/weeks!!
@sharlou youāre the first person Iāve read/heard who had the same experience with the cold cap as me! It was the same as what you described both times for me, and i have hair still! It was just awful, and Iāve decided to give it up - I only managed twice but I canāt take any more suffering. Iām so sorry you had that experience - itās awful.
@luckyduck1 Iām so angry on your behalf - so sorry for your awful A&E experience! I also had a bloodclot scare, they told me I could go to A&E or to the cancer hospital. I chose the latter and was in there all day, but not too bad as its comfy chairs and quieter than A&E. Turned out to be low magnesium, low potasssium, and some kidney issue (maybe just dehydration?) causing cramps. They did tell me no doppler scans on weekends and that the blood thinners ādonāt do any harmā so if they hadnāt found the source and thought it was clot would have just put me on them. But it sounds like they still arenāt doing the scan and you are just being pushed around! I hate that we have to advocate so hard for ourselves, but we do - the NHS is just so under-resourced, itās really sad.
Iām also sorry to hear some of you havenāt had very helpful assessment lines. Every trust seems to be so different. Iāve got no shame about ringing the line, I think Iāve rung maybe 3-4 times each cycle. Admittedly Iāve had a whole run of crazy symptoms but still, I figure theyād rather have a 30 second conversation with me and know that they have made the assessment as professionals than have me second-guessing on the other end and they know nothing about it. Thatās what I tell myself anyway! But if they just kept sending me to A&E Iād give up ringing, for sure!
Iām procrastinating going to sleep - Iām in the spare room as hubby is sicky mc-sick-face and is trying not to get me sick before my next chemo on Thursday. Iām dreading the next round. I finally feel a bit more human (apart from the blasted fatigue) and I canāt bear going back into that nausea.
Well done gansta gangā¦wait thatās not it, is itā¦what was it we were called by someoneās husband? Iām losing the plot now!
Night all.
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