Cancer Support Thread 98: support for those diagnosed and going through treatment

[FcukBreastCancer]

Hello 👋

Ps did you like the French olympic opening ceremony ? I was so proud of them and thought it was mainly a great job .The UK one was really brilliant too. I think the next one is Los Angeles ?

@Nonamelass Lolol. I love English history.. we are Church off Jesus Christ of Latter Day Saints. America’s history doesn’t go anywhere near England’s I guess.

@Nonamelass I did see them! I loved the French Olympics. I’m hoping I’ll be here for the LA Olympics. My dh went to them in 84 but has no desire to go in 28 (boy we were young!).

I do love the history you are exchanging @Sbmppand @Nonamelass. I love British history (although DS is the real one for enjoying this type of history!) I do remember enjoying the ‘84 Olympics very much 😊

Thank you very much for telling me about your trip @samlovesdilys it sounds fantastic. I might have a look at these trips. I’ve not thought of a cruise before but DH is anti flying and I like the idea of watching the world trip along from the end of the boat.

I’m sorry about the side effects you are having @Sbmpp. Can you mitigate these in any way?

The weather is lovely here so I think I will take my book outside and do some reading . DS seems to be ingoring me again so I think I’ll just let him get over it. He gave us a big lecture on religion and Tudor politics the other day (lucky us!)

We do have some sheep back in the field next door which is lovely 🥰 and I am supposed to be going out for dinner tonight. DH is going to give me and my friends a lift to the restaurant. We have also booked “steak night” at local pub on Tuesday. I just want do things while I can. Treatments, as you all know, are so difficult.

I’ve just realised it’s Friday (and pay day -
hooray!) so DS is at school and won’t be frowning at me 😊

Totally recommend a cruise, there are lots you can get on at Southampton, do as much/little as you want and a wide choice of food etc. just make sure you have lots of insurance! I’ve used ‘insurewith’ this year but there are several companies around.
irs treatment day again here, but drugs are delayed so o am all hooked up and waiting. Thinking about a snooze whilst I wait!! Happy Friday everyone - and if you’re in south UK hoping you have the milder almost sunny weather I have!!

Thank you! I like the idea of getting the cruise from Southampton too. That’s really helpful, it not that far from us and is close to DS’ bestie who is at uni there and he could drop us off 😊

Good luck with treatment day. I hope it doesn’t take too long to get the drugs on board. I was trying tell my parents about the delay with treatment drugs but I’m not sure they understood.

i hope you get that snooze 😴 you deserve it!

@Ventress yes treatments are so difficult. It’s good to do things when you can, seize the moment (which really we all should do anyway it’s just we don’t realise it until we are ill.) I spent this morning in bed with a coffee and the cat next to me. I went out for lunch on Tuesday then for a walk/ chat on bench with a friend on Wednesday then a good walk yesterday and today I am pooped. So frustrating. Have also suddenly opened my eyes to the things needing doing in the house ..dusty shelves and stuff… we need a cleaner as we really CBA but then it gets under our skin soooo.
Hooray for pay days !!
@samlovesdilys hope you get your treatment asap and it goes smoothly
@Sbmpp hope you’re feeling better ! We visied the immigration museum on statin island which was really interesting.

@Nonamelass Thanks I do feel better! It’s a beautiful spring day this morning with temperatures. supposed to be a high of 87f (30c?). @Ventress I’d love to talk with your son! I’m also anti-flying so I suppose I won’t be off to Europe anytime soon. @samlovesdilys i think I’m 8hrs behind timewise but hope treatment is over and se not too bad. I feel like it sometimes takes me a week to recover from the chemo days so it makes it hard to plan trips etc. we are planning a trip to No. Calif next month to attend a Cheese festival somewhere around San Francisco. We went last year but I think I was on a different chemo regimen that wasn’t as bad as this. There is much to do around there even without going to SF (not on our list ever as not a nice place imo). I’m jealous when I read about holidays to other countries you all go to. (Sorry, this post was too long but sometimes I can’t edit). Hope everyone is hanging on.

Thanks everyone, I was sorted, came home and slept - definitely feel better!! I was wondering why some sessions seemed more taxing than others - apparently although o am on a 3 week cycle there is one drug I only get every 6 sessions, and that’s the one that knocks me. Hoping everyone has a good weekend with some spring weather and tempting food!!

Jesus. Christ.

my new treatment started today, I’m now doing EC amount other things. I hadn’t even left the hospital and began feeling so unwell, dizzy, and nauseas with stomach cramps, amoun( other things. Constantly feel like I’m going to throw my guts up. Have had every anti sickness tablet going and nothing is doing it.

thanks to the kind soul that checked in on me a few days ago, I saw it but I’ve been hanging on by a thread so I didn’t have much energy to check in, but thank you.

has anyone been on EC or currently on it? What is this fresh hell.

Oh my goodness sweetheart yes I had EC and no tbf it’s really not nice BUT you are getting towards the end of chemo now aren’t you? Is it four EC you have to do? I ate alot of extra strong mints for nausea and that nasty taste and for some reason builders tea or that soft drink lipton tea seemed to settle my stomach . Hang on in there you are not far from the op now and things will get easier. Sending you a huge hug and strength , make sure you tell the drs how you are feeling and that they give you anything they can to help , xxxx

Eurgh E C. Did that! I let the team know about the extent of the side effects and they reviewed the dose which helped, as well as giving me pre-EC top tier anti sickness tablets. I’m sure you’ll be in touch with the team to tell them how grim it is. Solidarity.

@Bangersndmash yep definitely talk to drs as @dancingwhilstfacingthemusic says solidarity !!

Hi @Bangersndmash
I had EC in 2020 and 2022. The best anti nausea drug is Aprepitant/Emend, which costs a lot but makes it all bearable. Domperidone and the others just top that up. Ask for it!
The truth is that EC makes you feel awful for about a week, then you gradually recover and feel fine just in time for the next dose. It is brutal but very effective! My tumour completely vanished with it. You just have to get through each dose surviving hour by hour sometimes, and it will pass. I felt like I had swallowed a whole litre of gin each time. I gave up alcohol as a result!
Sending strength xx

@Topofthecliffs thank you, this has really helped. I was going to ask if they could maybe reduce my dose as I know I’m on a high dose but reading how affective it was for you, I’m going to try and perceive a bit longer.

im actually on aprepitant, also cyclizine and another two as well. Nothing seems to be working.

I sadly had a panic attack after my treatment yesterday before I left as I just felt so unwell and so scared to leave the medical professionals and go home feeling so awful. This is definitely a lot harder than the other drugs.

@Nonamelass @dancingwhilstfacingthemusic thanks. I know I don’t know you all but you’re really a support network to me. It’s silly but really needed and helpful.

@Nonamelass yes, you’re correct, 4 doses in total, one done yesterday so another 3 to go, if I can manage…

Sorry for all the awful typos don’t have the energy to correct 🫣

@Bangersndmash god that sounds awful, you sound like me i get all the bad effects, i was given akeynseo for the sickness pre chemo by tablet and lasts 5 days - actually 4 but does help as i was projectile vomiting., none of the sickness stuff worked for me.

dose reduction? yes solidarity as @dancingwhilstfacingthemusic says its grim.

have just had my last chemo and had four cannula attempts before could get going, shortage of staff, always something, high on steroids today but next 12 days i am out of it. good luck with your recovery hope you can get drugs adjusted for next time, plead your case and they will deliver the more expensive drugs that help.

@Bangersndmash just read you had cyclizine that made me vomit on first tablet.

Oh god I tried it first time last night and almost brought it up. I had to clamp my mouth shut it was horrendous. I thought these things are meant to help not hinder 😩 at least my little ones are in nursery today so I can spend the day in bed.

I actually had FEC 6 times 🤢🤢 back in 2002 which was a whole 24 years ago @Bangersndmash so it does work ( I didn’t have taxol then though but things have changed since) . as @Topofthecliffs says ask for the best antisickness tablets, you are a young mother with children at home to look after! You need good antisickness tablets !!!
You are one quarter through , next one is half way through holding your hand from afar and sending you hugs xx

@Bangersndmash I had the three weekly EC first time out, which gave me one bad week one medium week and one good week. That killed off the BC completely along with docetaxel, no cancer cells seen. Second time round I had dose dense EC two weekly which was really tough, followed by paclitaxel.
At one point I rang the ward and spoke to a lovely consultant. He pointed out that I had actually got through the worst symptoms, I think on round 2, and was coping really well even if I felt I wasn't. (I had got dehydrated from vomiting and had an awful headache). He persuaded me I just had to keep going and take all the drugs and I would get through it. In the end I didn't have a dose reduction and finished the treatment without missing any doses. I am actually quite proud of myself. They treated me like a 30 year old because I am quite fit and strong usually, and I somehow coped. Now five years on, I am fit and well, apart from numb feet and a deaf ear.
Keep going, hour by hour, listen to music or watch crap TV or whatever works for you. In a week you will be better. It passes!

I would 100% prefer to continue take palci every week than this 😩

if you can do this; so I can!! (I hope. PMA) 💪

thanks so much ladies, your words have helped me more than you know. And I really mean that.

Can anyone advise on their experience of timing and delivery of prognosis results.

I was told my tumour genetic results would be available 4-6 weeks after surgery. 6 weeks has now passed with no news but just had an appointment through for a standard post radiation follow up for 30 March with oncologist. Should I expect to wait for another 4 weeks to be told at this single appointment rather than if they come in earlier. My anxiety is that risk of spread is either 10% or 90%.