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

[FcukBreastCancer]

Hello 👋

Sorry to hear this @Ventress. My day went a little haywire as had an allergic reactions to paclitaxal and couldn't breathe! The other treatments were OK.

@Sbmpp @Ventress

That all sounds really tough 💐💐

@Pieceofpurplesky sorry to hear it didnt go quite to plan. Hopefully now they know next time will be much smoother.

I came away fron my appt with higher dose steroid cream and antibiotics for the rash.
Though I've now spoken to 3 consultants who don't want to think about it being the Phesgo, even though its listed as a side effect, and I've been quite clear that it happened after my second injection, it was doing much better until I had injection number 3 when it flared up again. So in my view its the Phesgo or the combination of the two which my body doesn't like.

@ventress - sorry to hear you have to have another chest drain, did they discover this from ct scan or your appointment yesterday?

@Sbmpp I am sorry to hear there are more tests for you to go through too, they do love a test - can you say no thanks? Surely the PET scan has given them enough information.

@Pieceofpurplesky sorry to hear that you had a reaction - I had a bad one on my second chemo but different one to yours, at least they know now to be cautious with you, so it means they are extra careful and sometimes slow the infusions down.

@Ted27 I am not surprised that they are trying to say its not phesgo. While you are on chemo and phesgo they can try that line but once you are on phesgo alone they have to admit it is phesgo - I have seen other women say this too.
I hope the new medications work for you.

Bless you all its such a slog at times, wish we could all get a break,

Thank you all. I’m okay. Worried about you guys though. Sounds like you all have some horrible side effects. I’m sorry you are going through this.

i completely agree with evey@cantbelieveIamhere says - she’s very wise.

i got the diagnosis yesterday @cantbelieveIamhere. I had a call with the bcn nurse in the morning and told her about the drop in oxygen levels and tightness in my chest/breathing. When I went in to have my Zoledronic acid infusion the bcn listened to my chest and messaged the pleural team. They have called today and I have booked in for Tuesday. I really can’t fault the hospital team , they are fantastic 🌟

i.do hope the new medications work @Ted27definitely sounds like it’s the phesgo to me. I hope the medications can be balanced for you. 🤞

@Pieceofpurplesky- oh no, that’s horrible! How awful for you 😢 are you feeling better today ? When I had the paclitaxel I did see a man have an anaphylactic reaction - poor thing. They did deal with him brilliantly though. I hope your team was just as good.

oh @SbmppI’m sorry to hear your update 🤗 as @cantbelieveIamheredays, can you refuse the additional tests?

@ventress thank you for the wise compliment - actually I think we are all getting pretty wise here and I value everyones contributions - we all help each other which is lovely. Best wishes for Tuesday I hope it goes smoothly, I am in hospital on Tuesday for phesgo, so let the extra itchiness begin!

The team were amazing @Ventressin five minutes I was ok again! Breathing and BP stabilising. Scary for a while though

I’m pleased to hear that @Pieceofpurplesky. So scary! I’m glad you are feeling better now.

you are wise @cantbelieveIamhere. I tend to agree that we are all getting wise now. Rather a bummer given our situations but inevitable I guess. How was the phesgo?

I’m back on about 30 tablets a day but pretty good otherwise. Yesterday was odd - I felt lousy during the bulk of the day but felt much better in the evening. It’s usually the other way around.

I hope everyone is enjoying the fine weather we are having. Isn’t it glorious?

DH and I had a fall out with 18 year old DS the other day, but yesterday we cleared the air and are good again. That’s a relief as I hate falling out with my son.

@ventress good luck at the hospital today, hope it all goes smoothly and not too much waiting around. I am at hospital too today for phesgo, have already taken extra antihistamine in anticipation of this evenings itch festival.

Glad you have made peace with your son, I hate arguing with mine too, it makes me feel awful.

how are you @Sbmpp ?

I hope phesgo goes okay today @cantbelieveIamhereand the itching isn’t so bad.

I’m back from hospital- they had air con so I could have stayed all day! Anyway the drain is in and the district nurse will come on Friday. They are going to come twice or three times a week until the suture’s are out and then , hopefully, they’ll train DH to do it.

how are you all doing? So hot here - apparently it’s 33 degrees here today ☀️

https://www.mumsnet.com/talk/am_i_being_unreasonable/5533843-making-memory-books-after-poor-prognosis?utm_campaign=thread&utm_medium=app_share

this is a lovely thread which has inspired me to do a book for my son. I have realised I don’t have memory book either so I may get one 💐

@Ventress no air conditioning at my unit, long long wait and very hot, - they had dyson fans that were useless.
the memory book sounds like a lovely idea I did one for both my boys when they got to 18, just a six by six book with a photo of them in each year of their lives and some nice sentiments etc.
DH's come in handy for all these new tasks dont they.
Too hot for me, coming home from hospital it was 32 degrees outside at 4.15pm, my skin seems to be ultra sensitive to sun now since chemo.

Oh wow, @cantbelieveIamhere, that temperature sounds unbearable 😱 I hope you manage to cool down a little now that you are at home.

Yes, dh’s are so useful and helpful. I have got a scrapbook and photos of DS and I - it was a bit emotional choosing these!

The drain is a little “hurty” now that the local anaesthetic has worn off . I’ve taken some paracetamol 😊

We’re going out for lunch with my parents tomorrow. Not been to the pub I’ve booked before so fingers crossed it’s good!

Has anyone been started Tamoxifen post-menopause and how did you find it? I’m 65 and oncologist has said to try it rather than AI, because tumour so tiny and no lymph node involvement. Also my mum and sister both have osteoporosis, so less risk with Tamoxifen. I sailed through my first menopause with minimal problems, but am aware this time is unlikely to be the same!

@cantbelieveIamhere The side effects from phesgo sound horrific. I hope everything will be taken care of. @Ventress nice to have the drain in. My dh has done more things for me than we ever imagined when we first took our vows forty years ago.
Sorry to hear about your heatwave. Is 33c about 93f? We regularly deal with 90’s and don’t really worry til it hits 100. I hope you have ways to cool off. One of the reasons I’ve wanted to go to the UK was because it looked so cool and green (we live in the south west, lots of cacti and dry shrubs).

I saw my oncologist today and had unexpectedly good news.
Ive felt so ill with fatigue and all the side effects, pile the heat on top and I wasn't feeling hopefully.
Anyway, my PET scsn shows a reduction in the primary breast tumour and the secondary in my chest wall is not visible at all.
Its more than I could ever have hoped for, Im not out of the woods yet. I still gave 4 chemo cycles to go. After that I will continue on the Phesgo every 3 weeks with 3 monthly scans.
For the first time since February I feel there is a future and I won't be leaving my son behind too soon

That’s great news @Ted27😊 I’m thrilled to hear this!

I’ve been feeling rubbish with the weather and difficulty sleeping so I know how you feel and it’s not ideal and not related to the cancer (hooray).

Yes, we are whinging poms @Sbmpp😂 the slightest few days of extreme weather and we are moaning! Our houses have been built for hundreds of years to retain heat. Which is a mixed blessing because in winter we are warmer (or use less gas anyway!) but in summer we boil 😂

My sister has been taking tamoxifen for about a year @Anonymousfivetrillion. She’s not post menopause though - she’s peri-menopause at 48 I’d say. I’m seeing her today so I’ll ask how she finds it and report back 😊

Thank you, that’s kind. As I said, I think menopause kind of passed me by, bar the occasional hot flush. I was lucky. I’m curious to know whether I’m likely to be similar if Tamoxifen throws me back in, or if I’ll have a different experience.

@Ted27 thats fantastic news, its good to know the treatment is working well for you and worth all the side effects.

Good to only have 4 more chemo to go, the phesgo injections on their own still take ages hanging about hospital but easier to get done than the infusions.

@Anonymousfivetrillion I'm post -menopause and on tamoxifen (family history of osteoporosis). For the first five months or so, I was absolutely fine, noticed no side effects. Then gradually I started getting cramp, joint pain, lack of any motivation at all, low energy, fatigue... oncologist said I could have a break, So had about two months off (during which time I also had a hysteroscopy as I'd had bleeding. Had three polyps removed - caused by tamoxifen). I'm back on it but on a half dose, so 10mg a day. So far, I'm okay 🤞🏻

@cantbelieveIamhere

At least the phesgo will be every 3 weeks, not every week !

@BatshitCrazyWoman Thanks for your reply. Oncologist has advised I’m at a low threshold for stopping the Tamoxifem at the moment due to v small size IDC. But … I’m due to have radiotherapy and it’s touch and go as to whether I’ll be healed in time - had a therapeutic mammoplasty and have had a few problems. I suspect that ‘low threshold’ will change if I can’t have the Rx. I guess I’ll just have to wait and see.

@Ventress Now I understand! I think our homes were made the opposite: they’re made for the heat (oh boy does it get hot!) I’m at home watching “Price is Right” instead of chemo because once again my platelets are low. Last time the nurse said they needed to be over 75,000 (they were 66,000). This time they were 88,000 so I thought it was ok but received a call canceling. At least they called me before we drove out there. I really didn’t want to go anyway but I worry that the cancer will get its claws into me and take off. I don’t have many options (actually just one) if the taxol stops working. Sorry for the rambling. You are always on my mind. Hope you can stay cool. Hang tough!

Oh @Sbmppyou poor thing! I’m surprised they have cancelled. That’s rubbish when your platelets seem so good. Was there something else you were low on? I’m glad they told you before you left home though.

I have my portable air con machine so I’m sorted and hanging tough 😊 I hope you are too. They will not be cancelling the taxol if they think it would affect you.

DH has just popped out for some more paracetamol and some bacon (I have a craving!) Thank the lord for DH’s/DP’s they are wonderful ❤️

@Ventress I love the paracetamol but especially the bacon!! My dh also goes out and gets me whatever it is I crave. Doesn’t matter what time it is or how far. He wants me to not lose weight. I am grateful.
I can picture you with the are cond. I hope it’s a right powerful ac so that you can have a blanket over you at the same time. We have central and a portable unit in order not to use central unit so much (our electric bill during the summer is close to $500/mo.)
Is the drain still in? Is that what the paracetamol is for? It’s never worked for me nor has ibuprofen. My dh thinks it’s great.
Stay cool and comfortable and enjoy the bacon (love, love love bacon 🥓, especially extra crispy:).