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

[FcukBreastCancer]

Hello 👋

@cantbelieveIamhere gosh I get terrible itching too. I’m on letrozole and another stronger tablet but I reckon it really dries skin out. Any estrogen has just left the building basically..Plus the water where we live is very hard. I’m prone to a bit of psoriasis anyway . My hands and feet and shins ( for some reason) are awful. I stick hands and feet in hot water with salt when it’s unbearable , it’s probably not recommended at all ( haven’t mentioned it to the dr haha) but it calms it down enough to sleep in my case. No amount of moisturizing really helps but I do it anyway and take antihistamine every couple of days which doesn’t help with fatigue. Do ice packs calm it for you? I remember doing that when i had loads of mosquito bites one holiday and it did help..It’s weird how it flares up at night isn’t it? it can wake me up too . Oh the joys of treatment
sending everyone best wishes and thinking of @Ventress in particular
Hang tough everyone

Hello everyone, hope everyone is doing as ok as they can be.
I stepped away from the cancer threads for a while, I got a bit overwhelmed about being the 'cancer patient' . Im a very impatient patient and I had other stuff going on.
So I guess my mental health was taking a bit of a hammering.
My son was home from uni for the summer which has been lovely. We had a short holiday to the Isle of Wight where we go every year which helped a lot.
I'm still struggling with the changes to my life but am going to do some courses put on by Macmillan.
Im also in the grip of scanxiety. I had my end of chemo scans on 26 July but results not back yet.
Physically my fatigue is off the scale and Letrezole is starting to take its toll I think.
Anyways- onwards and upwards (hopefully) because what else can you do.

@Ted27 good to see you back here, glad you had a trip away, the tiredness is definitely worse on these tablets, I am on exemestane which I have been told is more tolerable than letrozole but you still have to juggle brands as some are worse than others.
I too am in scanxiety, its relentless. Best wishes to you - has your itching eased now?

@Nonamelass definitely try icepacks, they are the best for calming down the itching, I use dermexa cream and fexofandine antihistamines and the combination of all three usually works.

@cantbelieveIamhere

I will be talking to the consultant about the Letrozole when I see her.
I am increasingly cross about the manner in which a consultant (male) told me I was going on to this medication. Ive since done my own research and understand the science but I do want to discuss the alternatives.
Like chemo I have pretty much the whole set of side effects.
My skin wasnt itchy as such before, I had a very angry bright red rash up my arms, thats gone but my skin can get very itchy. Neuropathy is a lot worse and I get cramps in my hands.
I barely sleep, put the fatigue and brain fog on top of that and you have zombie Ted

My hair is growing back though and my eyebrows are back with a vengence so Im going to have them waxed tomorrow

Ted I had neuropathy after my last chemo in 2017 ( I’m on my third primary for my sins) terrible pains in legs too. GP gave me vit D ehich I swear helped plus got adapted ( expensive) trainers and did alot of walking and it did get better. My feet are still sensitive though probably not helped by current treatment and I dunno if that’s psoriasis or neuropathy or just age but I’m careful about shoes.. no more herls for me!

Thanks can’t believe. I’ve been taking over the counter antihistamine and try not to every day for fatigue reasons , I’m still hanging on to my job somehow ( part time) so it’s a pain when my brain is too scrambled . Thank heavens I have the loveliest boss ever and her boss is just as nice. Phew.
will ask the consultant to prescribe some antihistamine when I see him next

Oh God scanxiety . Mine was picked up last October, then had a petscan in December ( boxing day 😵‍💫..) so I suppose there’ll be more checks soon gloops. I haven’t got anything left to put through a mammogram but consultant mentioned chest MRIs.to check stuff.. sigh it’s the bane of my life. A roller coaster of fear .

@nonamelass I got the gp to prescribe the antihistamines and they dont make you drowsy, put the cream in the fridge so its cold when you put it on, and icepacks of course are the last resort but they do work, dont put up with it!

Am just bringing this thread to the top of the board for another mumsnetter to see.

Just checking in, how are we all? Old and new friends?

I finished my 3 week course of radio over a week ago, been awfully out of breath just walking up the stairs. There’s concerns I’ve either got inflamed lungs or a blood clot. Got an urgent referral for a scan at the end of the week. Had a bad week this week so treated myself to a giant bottle of coke to drown my sorrows!

Just clinging on to the rollercoaster still.

Sorry to hear that @Bangersndmash
Had my last chemo but still not having an op as although it's shrunk they are in the lining of the stomach. So maintenance for me. Have my big meeting coming up. Just been really exhausted, fuzzy hands and feet and brain fog.
Thinking of you all.

@Bangersndmash and @Pieceofpurplesky bless you both its relentless isnt it, i hope you both feel some improvements soon, exhaustion and brain fog are my regular side effects and have been up since 4am with itching. I think it was @Nonamelass who said its a rollercoaster and thats exactly how if feels.

good luck with your meeting @Pieceofpurplesky and hope your scan doesnt show anything to be concerned about @Bangersndmash
also sending good wishes to you all and @Sbmpp

@Pieceofpurplesky well done for finishing chemo, you got there! Big pat on the back from me, it’s a huge achievement. And good news that it’s shrank. Do you know what maintaince looks like or are you waiting for that? I know somebody who had BC (I know it’s not the same) and whilst it shrank a small bit remained so they contained it, and she’s still here 20 years later like it never happened. I’m sure there will be lots of suggestions, fingers crossed for you.

@cantbelieveIamhere exhaustion isn’t great is it, I hope you can rest where you are able and have a nice treat by your side.

Anyone heard from @Ventress? I hope you are doing OK as can be. Thinking of you all.

Thanks @BangersndmashI have the meeting next week so will find out then. It's ovarian for me (Low Grade Serous Carcinoma) so notorious for hiding in places where it's can't be reached.

@cantbelieveIamhere I’m on maintenance also. For various reasons though I have had to skip chemo for 3-4 weeks. I did not realize how good I felt to not be on chemo until yesterday when I started back up. Well it’s back to old grind. It was nice for awhile.

@FcukBreastCancer @Ventress @ForestFlowerFairy @BatshitCrazyWoman - and others - hello again - sorry but I'm back. This thread seems rather quieter that last year.

Me? - briefly - Dec '25 in remission - March '26 check scan, all clear - July '26 check scan, 'Oh gosh what's that', sent for a PET scan (look it up yourself!) , found a small cancer nodule at the top of my left lung near my heart.

As it's quite small I'm having SABR Radio Therapy (Stereotactic Ablative Body Radiotherapy) twice per week - it seems a lot better that the Chemo regimes I've had - it's quicker (only 30 minutes) and the side effects are reduced, mainly tiredness so far.

So - what side effects has anyone else had after Radiotherapy? - Dan

Oh sorry you're back @DanFmDorking . Mostly I found radiotherapy made me very, very tired.

Sorry @DanFmDorking that's shitty news.
I did get burns from radiotherapy but mine was very much close to skin. Yours will be different.

Myself I have routine mri next week.
I'm struggling with fatigue. Possibly from hormonal treatment, but I think I've felt shit for ages anyway pre cancer. Even tried an iron infusion at cost of £900 and not much difference

@BatshitCrazyWoman - Thanks - I've had two (of eight) sessions and starting to feel tired now.

@VividDeer - burns? crikey, I'll look out for those - good luck with the MRI.

So sorry to hear @DanFmDorking. It's a never ending ride.
I am also now on maintenance but only Bevacizumab, for 18 cycles. They cannot operate so it's trying now to keep a lid on and prevent it growing (shrank with Chemo)

Hello! 👋 Please can I join? I feel quite alone despite having the lost wonderful family and friends. Getting cancer in my 30s with two primary aged kids has floored me.

I am being treated for colorectal cancer although I’m really not sure where the primary cancer originated - possibly from my appendix.

My main symptoms were caused by ovarian tumours that were dealt with by surgery in August and now I’m left having chemotherapy (FOLFOX) and target therapy (bevacizumab) to deal with extensive peritoneal disease, which wasn’t thought to be operable at the time of my first oncology appointment.

I have a lot of terrible thoughts and I am now being treated for anxiety for the first time in my life. I’m hoping my CT scan tomorrow shows a really good response to my treatment (I’ve had four cycles so far) and opens the door to the possibility of surgery to remove all visible disease.

I will catch up with this thread over the next few days - I’ve just been disconnected from my chemo pump and although I’m on dexamethasone, I can feel the tiredness creeping in.

Wishing you all well.

@lightanddreamy I dont know what to say to you even as someone who’s had cancer but I just wanted to acknowledge your post and say I understand and that I’m sorry you are in this situation. People ask if the person with the diagnosis has anyone to talk to but truth be told I wasn’t capable of talking sense to anyone and even when I did speak to someone I still felt lost, lonely and terrified. I’m sorry if this doesn’t help you but I really am at a loss for words. Xxxx

Oh @DanFmDorking sorry to see you back here
I'm not sure I'll be much help on the radiotherapy front, I had 30 sessions across 6 weeks (5 days a week) plus weekly chemotherapy so I have no idea which caused which side effects.
My radiotherapy was predominantly my neck, on account of head and neck cancer!
Obvious immediate things:
Burns - honestly horrific, with any luck yours won't be as intensive but I was given a gel to use and I would say use it religiously. Even if the worst happens and like me the skin blisters and peels off, it does heal relatively quickly. Think of it like extreme sunburn. I found a silk scarf useful, anything touching or rubbing near the area was uncomfortable, loose or low cut t shirts, shawls so I could slouch it away from the area etc
In 2 days it'll be a year since treatment stopped and I now I use factor 50 suncream everyday, even cloudy windy days like this weekend.

Pending where the radiotherapy is/ burns - natural materials as well, cotton, silk and let it breathe as best you can.

Longer term:
Again, this is likely because of the area for me, but I have to use a high fluoride toothpaste and mouthwash as well as nightly mouth guards to soak my teeth and prevent bone decay.
It also severely damaged my saliva glands, so dry mouth and I drink like a fish...

Extreme fatigue and brain fog has been a killer, thanks to the chemo we now play "cancer or menopause" every time I get a hot flush, forget things or can't sleep I tell myself it's just perimenopause NOT anything sinister, I'm guessing that's a game you won't need to play

@lightanddreamy - welcome to the crazy world of chemo! - I've been successfully treated for colorectal cancer - I had Folfox (it's a combination of three chemotherapy drugs) as well as surgery - you have my sympathy - it's a bumpy path. Chemo knocked the stuffing out of me as well - keep resting - keep snacking - keep yourself hydrated - it is very difficult.

How was your CT Scan? Sorry you're having bad anxiety - hope the tablets manage help you.

It spread to my liver as well - that's been sorted out with Chemo and two surgeries.

Now it's in my lung and session three of Radiotherapy is this morning. I'm also taking Dexamethasone (two tablets in the morning on days of Radiotherapy).

No chemo so far thank goodness.

Remember peeps - Chemotherapy would be so much more rewarding if Cancer screamed whilst you were destroying it.