Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

@HerbalRefreshment ahhhh ha. how long were you on it in total? And what side effects did it give you? And your final question, for an extra ten points, is what are you on now? Ribociclib??

From reading FB groups etc it seems most women with MBC crash out on that combo after a couple of years … & yes I have heard of some who have been stable on it 5 years or 7 years or more but they seem like outliers.

I saw the oncologist today. I've got to have a CT scan, they said this was because it was a little larger in the MRI and they'd thought and anything over a certain size gets a CT scan. I don't know if that last bit is true but thats what they said.
I'll be having 12 weekly sessions then 9 weeks of one every three weeks.
Alot of information was given to me today . Bit overwhelmed

@Chocolateismyfavourite this stage when the team are gathering information feels very scary. My wise DD who is a trainee oncologist says it's like playing a hand of cards. Every test gives them more information about what cards you hold and helps them plan the best treatment. Knowledge is Power!
Once you know everything you will feel better.
It sounds like you will be having Herceptin or one of that family like Phesgo or Kadcycla. These are game changers for HER2 positive tumours. I had a complete pathological response to treatment and my tumour disappeared before surgery.
Just be kind to yourself and get through the days. The information will gradually settle with you and you will understand what is happening. It all goes so quickly it makes your head reel.
Sending strength and love
Top xx

@TopOfTheCliff that is a very good way of thinking about it thank you. I just don't want them to find it anywhere else on the CT scan. It's triple negative. I can't remember all the names but one of them is Fec something or other.
So glad you had that response to your chemo.
You are right, knowledge is power, and I've always been of the mind that I can deal with anything as long as I have all the facts, it's just this is the scariest stuff I've had to deal with. Thanks for the advice I appreciate it very much x

@Chocolateismyfavourite im right there with you on the scan anxiety. You want to know exactly what you’re dealing with, but actually, you’d really like the luxury of being ignorant. I feel the same. I know we need to see if it’s anywhere else but the dread and horror or hearing those words is out of this world!

I found I had to block out the prospect of secondaries and even thinking about why they were doing the scan was horrific. Gradually I got used to the thoughts and could let them in. Now I am cool. Mainly because my scans were clear!
My first tumour was triple positive so I had FEC x3 three weekly first then HPT second with docetaxel x 3 three weekly followed by 15 more Herceptin.
Now I have a triple negative tumour so I am having ECx 4 and Paclitaxel x4 2 weekly which is a newer kinder regime with just as good results.
It takes time to let the scary thoughts sit comfortably and blocking them is normal until you are ready to deal with them.
I am feeling a bit better now on day 3 but tonight the bone marrow injections start 😖

@AGreatUsername that's exactly it! Thanks for explaining it better than me, I get my words mixed up sometimes. @TopOfTheCliff so glad they were clear . It's something I have to get use to. Ah now they sound like the chemo I'm going to have. If I can explain this right. The 12 weeks is four cycles of three weeks, the first dose is the two drugs together then the two following weeks are just one of the drugs each time. Then it repeats. The 9 weeks, once every three weeks is the fec.
Glad you are starting to feel better. Good luck with the injections💐

@mowly77 I got about 20 months before primary started to regrow, and it was 24 months when a single spine met decided to grow significantly, so I got a little less than the mean response time. Not surprised as my cancer trends outside statistical norms. I was moved to olaparib as BRCA1, which I have been very happy with as I have much lower fatigue compared to palbo. Aren't you BRCA2? Unfortunately I think NICE standards state you have to go via the CDK 4/6s first.

@Silkierabbit Man, two years of abemeciclib - thats a stronger version of the palbo/ribo but same drug class. You may want to ask if its truly necessary and if you have to have blood tests monthly on that regimen because its required for the other two. Seems like quite a bit of overkill - I know its given to high-risk Stage III ladies now, in addition to Stage IV - but my beef with the CDK 4/6 inhibitors is that it just suspended the ability of cancer cells to replicate, not actually kill them. Look at it this way, if you recur at Stage IV you'll get that drug anyway, but you may not have a recurrence. Ask about percentage benefit and decide if you really want to take the drug - you can always say no and stick with the hormone therapy!

ahhh thank you @HerbalRefreshment yep, BRCA2 so Olaparib is in my future. Bloody NICE guidelines -- just give us the stuff that works!! All this 'you can't have Abraxane, you have to try this CDK4/6 inhibitor first' is doing me in, slowly but surely. Glad it is working better for you, though. There's hope. I need to research what the CDK4/6 inhibitors actually do, the oncologist's 12-year-old registrar told me they still killed cancer cells but now you've said that I don't believe him...

Lots of love to everyone else going through everything else ...

It's the difference between the cancer stem cells and fast dividing cells as I sort of understand it, the drugs kill the latter but not the former. But when I asked an oncologist about this they said that they (everyone I presume not just him) didn't really understand the how it all works (or doesn't). The more you ask, the less you find is actually known.

Well here is the post in my heart of hearts I probably knew I would have to post at some point. (Terrible female family history)

Told yesterday I have breast cancer and in for surgery quickly. Pre op begining of next week.

All a bit overwhelming really. Only picked up on my family history yearly mammogram as it is to deep in the tissue to have been felt.

Looking at a lumpectomy with lymph nodes to start with but have been warned they may very well have to go back in. Depending on what they find I may have genetic testing, due to my age and the family history.

My dedicated breast care nurse was an angel yesterday.

DH and I are still in shock, tbh.

Welcome to the thread @Anothernewoneagain I’m sorry you are hear. Of course you’re both shocked, it’s such a blow to the stomach isn’t it? Going from normal to Cancer Patient in minutes. I’m so sorry. We are all here to listen and offer support so if you want to rant or ask questions feel free, there are a lot of very knowledgeable breast cancer ladies here. (Not me though, I’m OC)

@Anothernewoneagain so sorry to hear your news. I understand the shock. Good luck with the pre op.

Had two calls today. One for a date for the picc line to go in and another for the ct scan. Both on the same day seven hours apart.

Oh hoooooow annoying!

Very annoying!

That’s what happened to me on Tuesday. 7.30am and 3.30pm but I took a book and had a cake and coffee fest! Tomorrow is MRI head scan and Tuesday is tumour marker day. I’m glad I’ve got my car park permit sorted.

@Anothernewoneagain Greetings and welcome to the thread nobody wants to join. Take a breath and sit quietly. It’s a whirlwind at the beginning and too much to take in but gradually makes sense. Ask us anything as we have been through most of it. In my case twice in two years! I’m special 😂

Love to all - I’m enjoying my steroids today! Xx

@TopOfTheCliff 730?! Bliming heck that's early 🤣 coffee and cake fest sounds good. I've been toying with the same idea as it's a 25 min drive each way to the hospital. Hope it goes well for you tomorrow and Tuesday.

Can I ask a question. When I saw the oncologist nurse, she said I had to be careful not to pick up a fever, to be careful but don't go over board and be to over cautious, like it's ok to get a cold, but obviously don't go to anyone's house who is ill type thing, because my immune system will be down. Two people I've spoken too, one who had breast cancer and the other who's dad had cancer, have worried me because, they're saying I basically must not go out, have to avoid people incase I pick something up . What do you all do? I was thinking I should take the advice off the nurse. Also I have four kids so I'm likely to get something from them anyway, never mind other people

@Chocolateismyfavourite it was a lot different during Covid when nobody really knew how chemotherapy patients would get on if they caught it. I stayed at home or in the fresh air, got my shopping delivered and only saw people outside in the garden all summer and autumn. Fortunately it seems as a group they did better than expected, especially breast cancer patients. (This I know from my oncologist DD who did some of the research in Wales.)
If you didn't have children and don't have to work in a public facing job this advice is easy to follow but your circumstances mean a compromise. If you can avoid crowded or confined places you should, and within your house when your kids get sick you could probably stay a few feet away and not cuddle them so as not to get sneezed over. Hopefully they are all old enough to understand you need protecting. Can you stay off work throughout?
The other minefield is dietary advice. I argue a lot with my chemo nurses because the neutropenic diet is not evidence based and is full of holes. Basically it is similar to the pregnancy restrictions with some added stuff about avoiding probiotics such as live yoghourt and kefir and kombucha. This makes no sense as we all have to maintain a healthy biome. There are lots of cranks out there pedalling low sugar or dairy free diets for breast cancer and advocating broccoli and sprouting things. None of this has firm evidence. Keeping off alcohol and exercising as much as you can manage will do more good.
At the end of the day we all have to do what it takes to get through chemotherapy. If you need a glass of wine and a box of chocolates to get you through fill your boots!
Wishing you all the best and hoping it will be smooth for you
Top xx

Thanks for all of that top. No unfortunately I can't stay off work, the whole time, I can drop some of it though, I'm a self employed cleaner and if I don't work I don't earn. There's usually only one other in the house more often that not, none. I'd only be going on days where I don't feel like complete s*. Also they've all been great about me moving their days about when I need to and cancelling when I need to. Yes they are old to understand, the youngest is 7.
The only thing that has been mentioned about food was when I told them I'm vegan, and they want me to take a calcium supplement for my bones. I do take magnesium and a vegan vit d already.

Thanks Herbal I also think it's overkill as well and they have said very little benefit. I am quite borderline on criteria for qualifying and it did say was high risk of stage 4 but its more likely after 5 years and could be 20 or never and there's no long run data on this that I can see.

I have a question about neuropathy @Silkierabbit (or anyone...) but I know you had it quite badly ... I'm getting more and more pins and needles in hands and feet, definitely the beginnings of neuropathy. What was your experience? Did you have pins and needles first, or did you feel numb straight away? It's yet another worrying thing. Agh.

Yes it was like pins and needles like a milder longer lasting slightly burning one but I got that pretty much straightaway. Ah the joys of cancer treatment. I would let chemo team know though they normally don't do anything until you have trouble with balance or doing up buttons. It's hopefully just a temp thing

Thank you all for the kind messages.

Hello everyone and especially to you, @Anothernewoneagain . I started my own thread a couple of days ago, and was advised to pop in here. I have BC and I'm in a very similar position to you - lumpectomy and full node clearance this weekend, and likely to need chemo as well as radio, as it's grade 3 and in at least one node, and I am pre-menopausal.

It's such a weird time, waiting for surgery. I've been trying to look after myself properly since I was diagnosed 3 weeks ago, and actually feel really well. Better than I have all year, in fact, as it's been a shocker of a year with loads of difficult family stuff. My DH also has a serious chronic illness and I have been neglecting my own health a bit lately. But since diagnosis I haven't had any chocolate or alcohol, and have done loads of exercise, so have been sleeping better etc. So here I am, feeling well and full of energy and about to embark on a course of treatment that will leave me feeling rubbish for months, possibly with serious long-term side effects for the rest of my life. Don't get me wrong - I know it's necessary. I just can't quite get my head round it.

@dotty2 With some cancers the patient is ill - maybe very ill - before diagnosis and treatment. With BC - that's generally not the case so it's the treatment that makes you feel ill (of course that varies a lot - bit unpredictable). I sometimes talk about 'when I was ill' but what I really mean is when I was having treatment. It makes for a very different approach and relationship with treatment as it really doesn't feel as though it's making things better.