Stage 4 cancer... ? incurable? Thread #2 is here. In memory of our inspiring, lovely mowly77

[Tilllly]

New thread
All welcome, reluctantly

@Florsilvestredelcampo fingers crossed for you that bloods are all OK and you can start your treatment next week.
And yes it is like wading through shit backwards.
I actually feel like I'm drowning in it at the moment.

@TwigTheWonderKid fingers crossed for you too that your treatment won't be cancelled again.
It's awful the fear we feel when worrying about bloods or other things that could cancel our treatment.
Sending positive thoughts xxx

@TwigTheWonderKid you need a commode! I have one for wees only, it just looks like a chair.

I have started the short course of steroids I requested to cover our family holiday next week. So I'm starting to feel invincible! Still lying down most of the time though.

Is there still space in the 'worried about bloods for Monday's chemo' group? Cause I would like to join. Normally I just worry about my potassium (although that was 3.5 last Monday so I think I have some leeway), but now Hemoglobin has Entered the Chat and I worry constantly. That was 78 last Monday but onc went ahead with the understanding I would probably need a bag of blood this coming week. Ive been tired since Friday and resting mostly, but honestly I wouldnt be surprised if I got cancelled for Monday, got blood instead, and then maybe treatment on Tuesday? I dunno, it just messes up my whole weekly schedule.

I just want to work on getting this chemo done, not get stuck on some alternate paths!

Plenty of room @HerbalRefreshmentt

Not sure what is happening for me on Monday.

Had bloods done on Friday morning. Doctor was supposed to call me if blood results weren't good but didn't. I had a nagging feeling no news might not be good news so I called them. Doctors had gone home but lovely nurse said my results were the same as last week so not sure what's happening. I need to call at 9am on Monday to see what they say.

I start my treatment tomorrow and I hope it goes well for us all.
I've spent today in the gardens of Penny Brohn I feel so lucky to live so close, if I could bottle the serenity of the place for us all I would.
Enjoy the photos instead

@TwigTheWonderKid ah the ambiguity game, isnt it fun! /s

Those are some lovely gardens, especially in todays weather. I wish I could get out and go sit under a quiet tree in a park somewhere. Maybe after this leg is drained later this week. I hope.Thanks for the photo @Florsilvestredelcampo .

@Florsilvestredelcampo beautiful photos, thank you for sharing.

I went to have my Picc line cleaned and dressed earlier.
No bloods as it's my week off chemo.

I have one of those PICC lines that has the orange thing with pincers under the skin that hold the line in place.
Suddenly felt a horrible pain as the nurse was removing the old dressing.
The pincers ripped out of my arm as the dressing came off.
Unfortunately it also pulled out the PICC too far so the whole thing has had to come out.
I have to go back for a new one next week.

On the bright side at least I'll be able to get a lovely warm relaxing bubble bath this week .

Dear God @GoldenDog1 that sounds horrendous.
Get thee in a bubble bath pronto.

Lovely pics of Penny Brohn @Florsilvestredelcampo , I would still like to go on one of their retreats.

@HerbalRefreshmentt how's your hb level? Mine has plunged to 66 but I didn’t notice because I'm on my short course of holiday steroids. Got a transfusion booked for Wednesday anyway so I just need to lay low and not do too much tomorrow. I know it messes up your chemo.

@TwigTheWonderKid did you get yours?

@GoldenDog1 omg that's awful! But do enjoy fully submerging yourself in a bubbly bath. I still have baths with my PICC line but it's not the same when you have to dangle your arm out the side and getting your shoulders wet is a distant dream...

@WrenNatsworthy hope you can just rest up until your transfusion.

So I called the chemo unit at 9am and was utterly surprised that they said chemo was going ahead.

All a bit of a nightmare when I arrived as my temperature was all over the place and kept going over 34.5° so they did more bloods which also weren't great but eventually (3 hours after I was due to start) the consultant gave me the go-ahead so fingers crossed I don't have a raging hidden infection and it is "just" the cancer as I think.

The infusions were fine but I've come home on a 46 hour pump for the 5FU and although it's a very slow release I'm not entirely certain it's working...

Think I have to wait a couple of days for a bath until the skin closes over or something.
It's ok I can wait and I can't wait to have a shower without the bloody plastic sleeve on my arm.
My daughter has got all excited saying we should book a spa day.
I'm not sure about that though as I'm still on chemo lol.

Hope you are getting plenty of rest x

I'm so glad they gave the go ahead for you to receive your chemo.
The chemo I was on last year involved a 24 hour infusion at home.
I was sure it wasn't working as it didn't look like it was going down.
However when I woke the next morning I could tell it was lighter to carry around.

Thanks for the reassurance @GoldenDog1 Any tips for sleeping with it or should I just stop stressing?

I sort of used to tuck it near my armpit.
It was still a bit uncomfortable though.
Try not to stress too much (easier said than done) and see how it feels in the morning.
If you don't think it is any lighter you can contact them.
Your infusion is over a longer time than mine was so it might take longer for it to start feeling lighter.
Let us know how you get on x

Well I only managed 3 hours sleep ( thank you steroids) so I didn't have to worry about the pump too much. I was convinced it wasn't going down but it is, so back tomorrow afternoon to have it disconnected and then PICC clean on Friday then I can hopefully have a full week off of hospital.

After yesterday's anxious 3 hours of "will they, won't they" I've had chemotherapy, only slept for 3 hours last night but feel more energetic than I have in weeks! Think it's the psychological effect of finally getting on with it, plus the steroids!

How's everyone else?

@TwigTheWonderKid I'm glad it is working, it's a pain in the arse to sleep with but as long as it's infusing that's the main thing.

I saw my Oncologist this morning and made him laugh when I asked him to reassure me that the lump in my stomach isn't my bowel about to burst through it like something from the Alien film.
We talked about my headaches and ear pain.
I've told him I still have ear pain but the headaches have calmed down.
He said if they come back he will arrange for me to have an MRI on my brain.
I think it was stress to be honest.

I have my CT scan on Friday and won't be seeing him again until after my next cycle so it's going to be at least 3 weeks until I get those results. As you all know the waiting can be the hardest part.

I've been in a surprisingly good mood today.
I went out for a lovely meal this evening then came home and danced to the Crazy Frog song for my 3 year old and 8 month old grandsons.
They were staring at me like I was absolutely nuts 😂.
I found myself dancing around the bedroom on my own after they had gone home.
I think I might have overdone it as my stomach hurts now but it was good fun 😀💃

@GoldenDog1 ugh that is like my worst fear come to pass there! I have that orange thing too and every once in a while during the week i bump it and get reminded I have something stuck in my body. I cant imagine it coming out with the dressings being pulled off too! Enjoy your time without the shower sleeve - even though its easy enough to deal with, its somehow a huge faff too! It really messes up my soaping routine.

@WrenNatsworthy Actually my Hgb went UP to 80 from 78. Im gonna say it was the half breast of chicken Id had the night before for dinner. And my K was good at 3.2 so I had chemo on Monday. Still....I do wonder if a bag of blood wouldnt help a bit, Im so tired all the time, but I guess a lot of it may have to do with trying to get around with lymphadema leg weighing as much as it does. Im really hoping tomorrow they can start draining it and I get some compression, if I waited three goddamn weeks for this appointment, after dealing with this and mentioning it for the prior 6, and nothing substantial happens I am going to be pretty angry lol.

Couldn't get to sleep too early but when I did I slept through the night! No steroid-fuelled 3am internet shopping. Excellent result!

@GoldenDog1 that sounds like a lovely day!

@HerbalRefreshmentt really hope you get some leg treatment today.

@HerbalRefreshmentt 80 is still anaemic. My cut off is 80 generally. Ask em for blood. I nagged and cried and got a bag when I was 80 a few weeks ago. Got told off by a nurse and then she sorted it. Very odd that was.

66 today so booked in for transfusion at 11am, cross match done yesterday.

Steroids are definitely helping. I wish I wasn't just on a short course so I can have a nice time on holiday. Hey ho though, at least I can go.
I made it to the end of DS's GCSEs (he finished yesterday).
I'm hitting all my goals. 🥰

@TwigTheWonderKid Hello! I have been taking a break from stage IV related forums for a while. Currently on my 2nd cycle of Olaparib, giving me the joys of swollen tops of my feel/tops of my wrists. Have been guzzling 400 mg Ibuprofen and have started on Floradix (iron liquid supplement) as per the consultant’s instructions. And have been slathering tops of my feet with Voltarol gel.

And constipation has made a comeback again 2 days ago. Which has sent me into a tailspin because about a few weeks before my latest CT scan I had similar. Consultant didn’t think it was due to progression but I am pretty terrified this current constipation means yet another crap CT scan (booked for 16 July). I read Ibuprofen can cause stomach/gastric issues, hoping it’s that. Olaparib itself causes loose stool so I am thinking constipation cannot be caused by it.

I have been taking Dioctyl since last night and necking prune juice, it did have an effect this morning and lunchtime. Lots of farting this evening. Gurglong stomach. That kind of thing.

It is curious that constipation has started happening right after I got a date for the next CT scan. I was told it cannot be anxiety. Somebody just wake me up at the start of August when I am meant to find out results!

I have started counselling with the secondary breast cancer CNS, didn’t even know they can offer this service, too. And have also been referred on the waiting list for the clinical psychologist (oncology). Still going to Maggie’s as well. Just taking everything that has been offered to me. Anxiety is really sky rocketing at the moment. Even though apparently my bloods are fine and all my liver enzymes are back to normal. I have heard this one so many times before and then each subsequent CT would show the opposite. So I cannot get excited about that one again.

Quite a ramble from me! Oh. Yes. I will be taking early retirement from work.

Thinking of you all! 💐

It's BRILLIANT to hear from you @balkanscot.

I'm literally falling asleep but I couldn't read and run.

@HerbalRefreshmentt I don't think the Orange PICC line thing coming out with the dressing is a common occurrence.
The nurse was pretty shocked when it happened.
I also have to say it didn't hurt for long. It was a bit tender for the rest of the day but I can't feel it at all now.
I hope you get some treatment for your leg today and get some relief.

@TwigTheWonderKid that does sound like a result, although I do like a bit of 3am internet shopping 🛍️

@WrenNatsworthy well done your son for finishing his GCSEs.
When do you go on holiday and where to?
I'm sure you've already said but my brain is just fog these days.

@balkanscot nice to hear from you.
If you can manage them I've found eating the actual prunes more effective than drinking the juice.
I'm glad you are having councilling for your anxiety and hope it is helping.

@balkanscot Ive been told to take laxido for constipation. You can buy it otc, or get it on prescription
I put it in orange squash and drink it quickly
But it does work

I can’t honestly remember if I posted - but my niraparib was stopped because deemed not to be working. High grade ovarian ca Stage you know what!

Now on letrozole- stops the body making oestrogen. Doesn’t seem to be used much in my type of cancer.

Anyone else have experience of this drug? Any advice? X

@balkanscot sorry things not great with you but so very grateful you've checked in with us and lovely to hear from you. Sorry so much is going on for you. It's so overwhelming, especially when you feel out of control and don't know what's causing what.

The iron supplement could be causing/exacerbating constipation?

How's your boy doing?

@WrenNatsworthy hope the transfusion was helpful and you are holiday ready. Sorry you have got enough steroids. I was like superwoman on mine yesterday. I tidied the house, had a work meeting, a hospital appointment, did a bit of gardening and still had energy to tidy up again and have an argument with DH! Such a change to last week when getting out of bed to go to the loo felt like a struggle.

,@RedRosesPinkLilies so sorry the niraparib isn't working. Fingers crossed for the Letrozole. Bit like you, it feels like there are no real protocols for treatments on the same way there are for theore common cancers and it's so hard to get relevant, useful info online. I've no experience of that one myself, sounds like side-effects are pretty minimal, at least?

@RedRosesPinkLilies Letrozole is very commonly used in estrogen positive breast cancers for women who've been through the menopause. I'm on it because tamoxifen didn't work for me (the equivalent for pre menopausal women) but I have to have a monthly injection of something or other to switch off my ovaries.

Side effects vary - for my mum it gave her a heavy leg feeling. I seem to be ok other than hot flushes at night, but then I'm on a real cocktail of drugs so hard to know what causes what.

Most people tolerate it well.