Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

@breastcancerpanic Any good news is significant - it gives hope. You sound similar to me in where you are. I have two more EC to go and then need to have radiotherapy, about which I know absolutely nothing at the moment, which is fine with me as I can't cope with an information overload.

Once my radio is done I think I'm done though - as mine is triple negative I'm not having any hormone treatment but am on sodium clodronate for the foreseeable future and I had a lumpectomy so no need for future surgery. I have a follow up appoinment with the surgeon in May for him to take a look at his handiwork, but I'm happy enough with it to not want any further surgery - it's a bit wonky but definintely not worth doing any more with, not for me anyway.

Had an apt with oncologist today to discuss radiotherapy. Signed the consent forms. Now he does his bit and I wait for the team at the Cromwell in London to get in touch for my initial scan. Then I book flights and we go over for the day for this.

dr is imagining I’ll start in 2 weeks or so. Eek. But I’m glad it’s happening.

we also talked about tamoxifen. Then zoladex. Then abemaciclob.

@frostyfingers thats really good news re your dh and a little light through this awful time. How’re you doing? Are you beginning to come through the post chemo grot?

@ememem84 glad things are happening for you. Moving on a bit through this relentless treatment to get us through this bother we are in.

@breastcancerpanic that is a brilliant piece of writing and should be mandatory study for all family and friends. Glad you’ve had good news and that you can see a way through. You’ve broken the back of the chemo. I am also wondering about the recovery thread - it seemed unattainable last summer.

I’ve taken my first letrozole and will start to be treated to side effects I guess. It seems that people often find it better to take in the evening, so that’s what I’ve done. Fingers crossed, eh?

Being contacted today apparently by the team in London.

oncologist has written to gp so she can prescribe tamoxifen. Initially I wasn’t sure about this. But I’m going to do anything and everything I can to prevent reoccurrence. I’m at a higher risk apparently because of my age (only 40).

so we are moving.

@frostyfingers that's really positive news about your DH.

@ememem84 you're moving forwards in this bloody awful 'journey', the (sort of) end is in sight. I pick up my Tamoxifen prescription in a couple.of days, to start after radiotherapy is finished.

First radiotherapy was yesterday, really quick, lots of whirring machines and flashing red lights! And I'll be leaving in half an hour for the second one. Next week, as well as the five radiotherapy sessions, I've got four other appointments - it does make me laugh when people say 'are you working'! I'm bloody knackered, have lost a huge amount of muscle, and have constant appointments, I'd never be at work, and would be useless when I was!

Morning all. Hugely excited to be going to the dentist today for an extended check up and to look at mending my broken molar. It’s been like that for a few months as she couldn’t fix it whilst I was on chemo. I don’t know if she can do it today but it will be in sight!

@BatshitCrazyWoman glad to hear the radiotherapy was ok. The muscle loss though is quite something else, isn’t it?! I’m wondering how the letrozole will affect building it back up in my case - I know it makes weight loss harder, although you have had a hard time on that front in the opposite way.

Sorry you're going through this. I was in your place a year ago, the radiotherapy was a breeze - just a small rash. I've been on hormone therapy (I hate that term - makes it sound relaxing!) for over a year (Zoladex and Letrozole) and it's rough, I won't lie. You'll get through this though, break everything down into small steps 💗

Had a call from hospital in London this morning. Provisionally booked me in for a planning scan on weds.

they need insurance to confirm it’s all covered though. So can’t book flights until confirmed.

insirance said they’d come back right be today. Have they? No.

frustratjng.

So frustrating @ememem84 Sometimes the admin around all of it really pisses me off! I hope you here from the insurance company soon

currenrly at Heathrow waiting for my flight home. Glass of wine in hand.

been to the Cromwell today for my planning scan for radiotherapy. Red eye flight out, apt at 930 done by 1030.

had a nice brunch. Swooshed around Harrods. Picked up some duty free stuff.

winning at life.

treatment should start on 10th. Eee

That sounds a great day @ememem84 Wowsers to treatment starting on 10th - the end of treatment is coming closer!

I’ve been on letrozole for a week. So far not as bad as I had feared. More hot flushes overnight and achier joints and muscles in my legs. I need to build up movement and strength after such a long illness so I’m hoping that improves things.

managing ok with my own hair although it is thin and half grey. Picked up my nhs wig this morning and it’s ok! Not sure how much I’ll wear it (random fears about it falling off) but it’s good to have the option.

Good news @ememem84 . How many radiotherapy sessions are you having? I had my sixth (of fifteen) today. So far so good. I'm normally in and out in 15 minutes (that includes undressing and getting dressed again). Maybe less! I have physio tomorrow, and I've been doing my exercises, so hopefully rebuilding muscle. And doing more walking.

I felt.like that about my wigs @dancingwhilstfacingthemusic but even on a windy day it's stayed put. I do use a wig band, which helps anchor it. I'm glad your letrozole side effects aren't too bad. I collected my Tamoxifen prescription, to start after I've finished radiotherapy.

15 sessions in total. I’m wierdly looking forward to it.

dm is coming for the first couple of sessions and DH the rest.

we’re booking in some things to do in London - saw a Tutankhamen exhibition advertised today as well as a pirates one so will def get those booked in.

I also want to go to Kew Gardens. Never been before so really hoping we can do that.

making a list of nice places for lunches too.

Good to have plans, as the radiotherapy isn't going to take up much of your time!

I think the Cartier exhibition at the V&A starts on 12 April, if that's your thing?

I’ve actually never been to the v&a so that’s on the list!!!

started taking tamoxifen today too.

booked flights and hotels for the radiotherapy. Fuck me that’s expensive shit. Becaude of the dc were coming home weekends. Flights for the Easter weekend are spendy. £900!!!! Economy (only BA jersey to Heathrow so only an hour)

but need bags for the week. Eek.

Evening all, can I officially join ?

Invasive Ductal, can’t remember the rest. Believe to be grade 2.

I need to have a lymph node biopsy next week, followed my surgery and radiotherapy.

Dependant on the outcome of the lymph node biopsy, there may be more to the plan but these are the definite as of today.

@AlwaysALargeSauvignonBlanc I'm sorry you find yourself here, but welcome! I've found this a really supportive and helpful place.

Sorry you find yourself here @AlwaysALargeSauvignonBlanc It's a very supportive thread, for venting, fretting and celebrating the small victories.

I have the Cartier exhibition on my list, @ememem84 I've never been to the V&A either, and I bloody live in London! I'm starting Tamoxifen (my phone wants to capitalise that, for some reason) after radiotherapy, so in a week and a half. I must admit, I feel a bit anxious about it.

RT number 8 just done, currently in the waiting room for an appointment with the oncologist.

I had my fifth docetaxel two days ago (Wednesday). So just one more to go in 2.5 weeks ... the end is in sight! Am weirdly slightly enjoying the steroids - feel a bit wired! Last ones are this lunchtime and if this time is anything like last time from that point onwards it will be aches and pains for a few days and a tiredness like nothing else... but at least I know now that it is temporary so I hope I can get through it again.
No sign of hair growing back yet... possibly it is shedding a bit less but it's not obvious.
I had to have my picc line removed at my chemo appointment, and it went in via a cannula instead. Apparently there has been a picc line recall - not sure if it is just our area/batch. It was handy having it in for treatment/bloods, but I must admit I feel glad to be shot of it. I can shower without a sleeve - it just feels more normal!
After chemo it should be radio, so I'm looking forward to being where you are at @ememem84 and @BatshitCrazyWoman . I got a letter for another appointment in a different place where I don't normally go - ridiculously my first thought was that there was some other cancer spotted elsewhere and this is what this new appointment is about! My dh has persuaded me that it is much more likely to be a radiotherapy planning appointment or something like that.

I was supposed to be having 5 of 6 this Monday but for the 3rd time have had it postponed due to low white blood cell count even though I'm on the reduced dose. It's so frustrating I could cry, I really thought I was nearly there, the last one was due on 28th April and the psychological thing of chemo finishing this month was huge, and now it's slipped into May. That's 3 weeks I've lost altogether now. I have a radiotherapy planning appointment booked for 22nd.

I feel really down about this, not helped by a couple of people saying "it's only a week", they mean well but there's nothing "only" about it.

Oh no @frostyfingers I know they must feel so hard, because you are so desperate for this part of treatment to be over. It will be over soon, hold on to that thought.🫂

Thanks @BatshitCrazyWoman, how are you getting on? I've just looked back at all my test results since I started and my neutrophils/white cell count have been low from day 1 - I asked today if there was something that could be done to boost them and was told nothing, just time but I thought filgrastim could do that?

I'm also developing an allergy to the picc line dressings, they've tried 3 different sorts now and it's all red and sore underneath no matter what, so it also means another week of putting up with that. Grrr.

I read the Times article on the Cartier exhibition, it looks amazing. You must report back if you go @ememem84 , and Kew at this time of year is beautiful.

@breastcancerpanic Hope you power through this session and your last - light at the end of the tunnel, finally!

@AlwaysALargeSauvignonBlanc sorry that you find yourself here but it is a good place to share all your fears and frustrations. The beginning is the worst, hang in there.

@frostyfingers so frustrating to have these delays. I had the start of chemo delayed because of the implant infection, and I found it so hard to accept. I really hope your count goes up and things get moving for you ASAP.

I've lurked on here throughout my chemo but only just realised I hadn't posted since just before my first cycle. And I've just had my last one! It's been brutal- I was on TCHP and seemed to cherry-pick new side-effects every time. I had 2 blood transfusions as some catastrophic nosebleeds resulted in appalling anaemia. And my lovely, lovely Dad died when I was too ill to go and see him, nor attend his funeral.

But I'm done with chemo. And my latest MRI showed complete radiological response so the long grim slog has been worth it. Therapeutic mammoplasty at the end of the month. As I am rather large of nork, my surgeon plans to remove the tumour footprint and lift my right boob up a bit. Then she'll balance my left boob in a later op. I'll need radio and more immunotherapy but not clear what exactly until after the pathology.

Even without me posting, this group has been a help. Knowing you're not alone is so comforting.

@frostyfingers that's exactly what filgrastim does, treats low white blood cells. I've been on it since the start and while it does cause some bone pain, I've never been neutropenic.

@eminem Definitely go to the V&A. When DH and I lived in London many years ago, I loved a good wander round there. I'm not exactly a fashionista but the clothes!!!

Best wishes to everyone else. Might try and get back to sleep now - bloody steroids!