Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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The Kit Kats are lovely the sandwiches are terrible- I’ve worked out I need to put crisps in with the filling so there’s a bit of taste!
last 5 injections (hopefully) start on Sunday - it’s an ordeal isn’t it.

Not a sniff of any biscuits on my unit not even a dry cracker!I asked a nurse for a cup of coffee once and she had to go to the hospital cafe and buy me one. She then refused to let me pay her back I was so embarrassed 😳 I never asked again!

@ClashCityRocker sorry to hear about your blood clot, good thing you went in and got it seen though.

@spiggydit and @MagicVanillaBeans waiting is utterly utterly utterly shit. My sympathy.

@LarryStylinson good news is always good ☺️☺️☺️

@TopOfTheCliff hope your DD is looking after you!

@AllotmentTime fat chance! I made coffee, prepared lunch and made tea for DD. Thankfully they have borrowed my car to go out this evening so it’s all peaceful here. I must be looking too well for her to realise how exhausted I am. It’s lovely having her here though, I won’t see her again till Christmas so I’m not complaining.
I seem to have reached a steady state on these drugs.( Cape) I have reduced my expectations of what I can achieve in a day and am coasting gently. The mild nausea is a great appetite suppressant so my weight is going the right way at last but I am eating healthily too. I think I can probably bear to keep going for another three months if it stays like this. But you never know what is Round the corner with cancer.

@ClashCityRocker it's not too bad really, a bit nippy but it seems to pass quite quickly. It's definitely easier to lie down for them!

Ive got big face lumps just below each temple, is this part of the journey? Having a weird face shape is bad enough!

I didn't get that Each though face went puffy on chemo maybe steroid moonface and is still a bit puffy on Tamoxifen. Need my hair all back. Joys of cancer.

On plus note the blue bin is already 3/4s full, winning at binning. And 100 lengths swam tonight. Awful meeting with LA, no school for a second year just home ed grrr.

And also winning at ranting. My Tamoxifen 30 tablets limit rant won me 120 Tamoxifen tablets. Go me. And my toothpaste complaint 3 tubes.

Anyone know if we move areas to a different region can I stay under current hospital as I'm on operating waiting list and about another 6 months to year to go but if move could go up to 3 years. Might need to move for DS. Could possibly keep 2 addresses for operation including current whilst rent other one.

@Silkierabbit are LA able to organise teaching out of school? Some countries can provide teaching in your home or other setting.

Cheers. Some treatments: transfusions, chemotherapy, bone marrow transplants. None of them seem appealing tbh. Fortunately my blood counts aren't yet poor enough to require any of these yet. At the moment I don't really fancy going down any of those paths. Transfusions would improve how I feel, but the effects would be temporary and I'd need to keep having them. The other two are really just to keep you going for a bit longer once you've dropped into AML, which I don't really see the point of - if I had children perhaps I'd feel different. As it stands, might still be here about the same in 5 years. On the other hand might be gone in 5 months.

Not working now - just don't have the energy to be reliable. I'm lucky in having a supportive partner. Just completed an MSc in AI so hope to try and do something with that in the future.

First post here, hello!
I’m on my 3rd cycle of EC chemo (ER+ breast cancer) and have been experiencing awful heartburn. They prescribed Omeprazole but it hasn’t done a thing, and Gaviscon doesn’t help either. Has anyone been prescribed anything else that helped?

@OrangePippa hiya, I also had atrocious heartburn on EC. You could try lansoprazole but I’ll be honest, that didn’t help me either. It went away as soon as I switched to paclitaxel (I had 4 EC then 4 taxol) I was kind of used to heartburn though as I suffered badly with it in pregnancy and DD was only 16 weeks when I was diagnosed 🤬 used to glug gaviscon out of the bottle, sleep pretty much upright on pillows and count down the days to my last EC. If you don’t find anything that works I hope you’re like me and only have one more EC to go.

Thanks so much for the reply. That’s really good to hear that it went - yes I’m the same, only one more EC to go so I guess I’ll just have to suck it up! I’m nervous about moving on to Paclitaxel, EC has been grim but at least I know what to expect from it now. How did you get on with it?

@FlorenceOrTheMachine what an interesting topic to study. I think if I were in your position I would need a lot of psychological help to get my head round it but I guess living for the moment is key. I’m doing the opposite taking every treatment going to try to extend my life expectancy. It means putting my summer on hold and just pottering through the next few months avoiding anything taxing. There is a quiet pleasure in the small things of life I have found.
@OrangePippa welcome to this friendly thread nobody wants to join. I had EC twice without any heartburn. As neither the anti acid treatment nor the barrier has worked I might be wondering if it’s something else like gallstones. Have you had any tests? Did you have heartburn before starting chemotherapy? Does it help to drink milk?

DH has come home from his travels, had a quick shower and change and gone off again to do another challenge. He seems happy enough if a bit sunburned . I’m taking care of his DPs and SIL for him and gaining brownie points. There will be payback 😂

Thanks for the wig information everyone:-)
Woke up feeling so nauseous and had abit of a bad stomach this morning. Your mind can't help but wonder can it? Has it spread? Or is it just the sheer fear of what is going on that is causing it ??

Thank you. No I’ve never had heartburn before except in pregnancy. I’ve only got one more of this chemo to go (then four of another), poster above said hers disappeared when this particular one was done so I’ll wait and see, hopefully I’ll be the same.

Hi there, I had 4xEC followed by 4xPaclitaxel I had heartburn while having EC. I got lansoprazole & it stopped it in its tracks. I didn’t need it for Paclitaxel which I found easier to tolerate generally.

Hi, yes that’s the same regime I’m on. Only got one more EC so I’m glad to hear it stopped with Paclitaxel - another poster has said the same. Fingers crossed. Can I ask what side effects you got with Paclitaxel? I’m nervous about getting used to a new drug, especially re neuropathy.

I had paclitaxel for 12 weeks but had pembrolizumab at the same time so hard to tell which side effect was from which drug. I think I was quite unusual in tolerating EC far better than paclitaxel, I think most people find it’s the other way round. I had nausea, diarrhoea, skin peeling off my arms and feet, lost my toenails, dreadful face rash, anaemia, loss of appetite and neuropathy. But - however bad it was, I made it through, didn’t miss a treatment and most of the side effects resolved (with the help of a cocktail of drugs) fairly quickly. And I worked, admittedly fairly patchily, throughout. The main thing is not to suffer in silence - if you tell your team what’s wrong they can often prescribe something to help or at least give you some tips on how to manage the side effects.

When I had heartburn in chemo (on Pax) it was actually caused by the anti-sickness tablets, ondansetron, they gave me 6 a week and actually needed 1 or 2 I found in the end then heartburn stopped.

I didn't have much nausea or sickness on Pax at all and that's apparently the norm. I have a sickness phobia but actually took far less of the anti-sickness tablets than they told me to as had so little. I had no issues with nails but I put packs ice cubes on my nails / ice gloves each chemo - took in a coolbox from a camping shop each time and my nails were same as before. I also took ice lollies and no mouth issues. Got stronger prescription only toothpaste from dentist which helped, it was harsh on teeth and eyes for me. I did get bad neuropathy and had to take gaps and go down to 90% after 4 but got through all 12, symptoms worsened 3 months after chemo but then subsided and minimal neuropathy one year on, eyesight worse, teeth worse but still all there and dentist said good. Steroids were worse for me than the actual chemo, massive moodswings, extreme depression, ranting, though they can cut those and they did when I asked. I didn't do EC before and I found with Pax some effects after finishing so it could be EC effects continuing if similar to before. I had weekly Pax x 12.

Gosh can I risk wearing a wig in this weather? I’m going to my nieces art exhibition at St Martins then spending the day in London.

@OrangePippa I found paclitaxel a walk in the park compared to the EC! Hopefully it’s the same for you. I find eating polos or extra strong mints has helped a lot. Lady next to me in the chemo unit said her oncologist mentioned eating mints to help: might be worth a go?
I’ve had sore fingers and dry skin, aching bones, dry eyes with paclitaxel far more tolerable than the total head scrambling that the EC brought.

Thanks so much everyone for sharing your pax experiences. It’s so different for everyone, I guess I’ll just have to wait and see 😬