Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

I saw the oncologist today and he is going to book me in for an ultrasound after 6 or 7 cycles of paclitaxel, so in 3-4 weeks time, to see how everything is going.

@dancingwhilstfacingthemusic how are you feeling now after your last infusion? Hope you're doing well.

@Rockschooldropout sorry to hear about your allergic reaction but glad they dealt with efficiently. Genuinely that makes me feel loads better that you had a cry on your first one, I know I'm going to be the exact same already. Hopefully I'll have the same experience as you and will come out feeling a lot calmer!

@BatshitCrazyWoman wow haha let's hope something works! Reassuring to know there's lots of options for side effects though. I really hope you're able to find some food you can tolerate soon. My chemos are the other way round to yours so am kind of dreading phase 2 EC before I'm even started on the pax/carbo. It does sound rough. But you got through it!

Definitely get you about doing stuff for yourself once active treatment is over. There's no way everything will just spring back to being how it was! And I'm saying this as someone who's not even started their chemo yet 😂 definitely serious self care after treatment is very much warranted.

Thanks @Mintymood Generally ok although tired. It took me a little bit to work out what works best for me and how to manage things like claggy mouth. I’m on day 4 today which I’ve learned is my grottier day so I’m keeping on top of the anti nausea drugs. I was fine for the first few weeks and didn’t need them but it must be building in my system. Next paclitaxel is my halfway for that drug.

Do you have a way to manage the claggy mouth, @dancingwhilstfacingthemusic ? I have mouth wash and the gelclair stuff which helps with soreness and ulcers, but I still have a really dry and claggy mouth that makes it hard to eat and it isn't pleasant.

Ugh it’s horrible isn’t it @BatshitCrazyWoman I’m deliberately drinking a lot of water / squash as I feel very dehydrated after chemo. I reckon that doesn’t help the mouth so keeping hydrated even if I don’t feel thirsty helps.

i have the benzydamine hydrochloride which seems to help and keep up with that and the gels. Sucking ice cubes, mini calippos and more recently, freezing slices of banana with peanut butter and honey on also helps.

infusions of fresh ginger in warm water helps cut through too.

some people swear by fresh pineapple but that just brings my mouth out in blisters.

when it’s particularly yuk I mix Greek yoghurt in with my food and it helps, along with having a glass of water to help wash it down.

Thanks @dancingwhilstfacingthemusic Pineapple is very painful to eat! I drink loads of water which doesn't seem to touch the sides. Lots of stuff is just impossible to eat with such a dry mouth - bread, potatoes, meat ... 😔 I've started to just eat bowls of cereal with lots of cold milk, as that's palatable. It's at its worst the first two days after chemo, so should improve a bit now. Nine more paclitaxel infusions to go 😬😂

In other news, the oncologist prescribed something for my sore nose, which seems to be helping, and two separate things for the splits at the corners of my mouth, which have finally started to heal. All the fun!

Hopefully the “kinder” paclitaxel will help things ease up. I need to talk to my lot about nose bleeds and stuffy sinuses. I don’t think being inside with the heating on helps that. I’ve been putting Vaseline up my nostrils but it feels weird!

Does anyone have thoughts about turkey tail mushroom supplements? They’re supposed to help with some kinds of cancer and also with fatty liver.

My oncologist is adamant that I don't take any vitamins or supplements except vitamin D, so I would run it by your doctor @dancingwhilstfacingthemusic

Thanks @BatshitCrazyWoman I’m also only taking D and very cautious about anything else - I’ll ask though as I’ve heard a lot of discussion.

I’ve just had another huge hair shed. Although I think it’s because I hadn’t washed my hair for about a week and have kept it up in a ridiculously straggly ponytail.

bloods tomorrow and apt with oncologist ahead of paclitaxil no 4 on tues. Tuesday will be my 8th “chemo” session. Bringing me to 8/16 in total. So 50% the way through total.

still feeling ok here which is an absolute blessing.

I’ve booked a haircut for January to even things up a bit. Something to look forward to.

I checked with my oncologist re supplements and he said I’m ok to continue with my multivitamin, my probiotic and my skin and hair supplement. I took the packets in with me so might be worth doing this.

Just checking in and sending strength and support to everyone. Off for my first triple infusion tomorrow and I'm beyond terrified! But there's a lot of useful stuff posted on here. I'm wondering if the nurses will be able to help me change my iced boots and gloves halfway through treatment. So many things to take and think about!

Oh and I've been wondering about supplements too - I've also heard that vit D ok but others to check. I think I'll just bring them in with me tomorrow. I take magnesium too and not sure on that one.

I've just lost a bit of filling 🙁 I don't think I can have dental treatment while I'm having chemo, can I? Bugger ...

Definitely check. Here's some info from the Royal Marsden https://patientinfolibrary.royalmarsden.nhs.uk/document/download/1340

And some more info here https://www.breastcancer.org/research-news/supplements-before-and-during-chemo-risky

That’s a pain, @BatshitCrazyWoman I think you can but you have to be careful if you’ve had the osteoporosis drug if you’re having extractions or other more invasive work. Give your nurse a call to check.

@Mintymood hopefully this time tomorrow you’ll be one down or on the way to one down. We’ll all be there will the virtual cheering on.

I have pax 6 this week, bloods allowing, which will be halfway through that drug. I had an odd consultation this morning with a member of my consultant’s team - seems to be one every few weeks. Having been given a phone appointment (which I confirmed when speaking with my nurse about another matter), the registrar said he had been expecting me face to face and then proceeded to say “so you’ve finished paclitaxel”. Erm, no! It all got even more confusing to the point that I asked him to stop to ensure they were my notes on his screen. We got straightened out and finished the consultation but he didn’t seem terribly sure about any of my questions. Fortunately the chemo nurses and dr on the ward inspire more confidence.

I’m told that my Christmas chemos are Christmas Eve, followed by NY Eve. That helps with planning the festivities.

Thanks @dancingwhilstfacingthemusic I spoke to my nurse, and she said I can have a filling, and painkilling injections (!) at the dentist. She's sent me my latest blood results in case the dentist wants to see them. I'm not on any osteoporosis drugs. First appointment I could get is next week, but it's booked. Thank goodness.

That doesn't sound a very satisfactory phone appointment - I'm glad the nurse and ward doctor are better.

Phew good to hear that @BatshitCrazyWoman my dentist is good if I request a cancellation and often come through with something sooner. Hope you’re as comfy as possible whilst you wait for the appointment.

Thanks @BatshitCrazyWoman for the info. Looks like keeping stuff to a minimum is best. Glad your dental work can go ahead. I'm a bit worried as I wear plastic retainers at night, and I'm wondering if with the mouth issues that will be possible once I start treatment.

@dancingwhilstfacingthemusic thank you so much. Be nice to have one under my belt and be on the way to getting them done!

I wear a bite guard @Mintymood (oh the glamour!). It’s been fine. I had a good session with the hygienist before chemo and bought an oral b toothbrush with sensitive setting. If need be the chemo team can prescribe mouthwashes and gels to help with comfort - I’m swilling the gel regularly to keep on top of things. The mouthwash helped with my sense of taste.

@dancingwhilstfacingthemusic oh that's really reassuring to know thank you!

morning all. Off for pax 4/12 today. And according to my oncologist I’m over halfway through my treatment in total. Hoorah!!!

Hey all - I had my last my chemo nearly two weeks ago and it’s been a roller coaster - 1 x antibiotics for a UTI, IV antibiotics yesterday in a&e for chest infection and two lots more take home antibiotics for said chest infection later….. today I have realised its CAKE DAY!

For me cake day is the first day after chemo when I crave cake. My taste buds and stomach have settled enough for me to crave some kind of sweet, crap, buttercream and brightly coloured sponge…. after each round at about day 12 I have found that I can’t stop thinking about cake……. 🍰

anyone else had weird cravings?

I LOVE the idea of cake day!!!!!

im all about the tangy flavours. So sweet and sour stir fry’s, salt and vinegar crisps.

yum.

i

My life has just been turned upside down, I know you lovely lot will get it more than others so please forgive me for the self indulgent post.

My DH was admitted to A&E on Sunday night with stomach pain and is looking at a probable diagnosis of pancreatic cancer. The growth is obstructing a duct from or to the liver and he is jaundiced - he's been scanned again and just had another MRI to see if surgery is possible. It has completely wrecked me, he's being so brave and positive and all I can think about is being without him, we've been together over 30 years and I can't imagine life on my own. I know I'm jumping the gun, but the reality is that it's a bugger of a cancer.

I really thought that I was getting somewhere, I've tested negative for the BRCA genes which is good and that chemo and radio although hard were going to see this off and we could get back on track next year. All I know now is that life is never going to be the same again and it's truly shit.

I know I have to cope but I really don't feel up to anything at the moment, nights are awful and unless I'm at the hospital I'm floating about the house achieving nothing.

I wish each and everyone of you the very best, I'm not sure whether I'll post much here now, and for goodness sake - if you want to do something, do it, don't put anything off for another day.