Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

Thanks @LemonDrizzle10 🙂

Thanks Lemon.

Good luck at radio today Each!

Hi, hoping I can join you all? I’ve recently been diagnosed with BC and hoping (well, that’s sort of what I mean) to start chemo in the next week or so. However, it’s all new to me so I don’t really know what needs to happen between meeting the oncologist and starting treatment etc.

I wonder if you could tell what you wear for chemo? I feel like I need to be doing something and this is about all I have control over at the moment!

@FairyWren7 read the end of the last thread and remember staying in Cradle Mountain NP and seeing the wombats. It was mid summer when we went and it still snowed one day (we had to get ski gloves for the kids, it was that cold).

Also, reading your experiences with hot flushes etc, I’ve had to come off HRT and it’s all coming back to me!

Hope you all have a good day.

Just jumping on to mark place

Hi @BreakfastClub80 so sorry you have found your way here, welcome. I started my chemo last week - ec for 4 cycles to begin with. I had surgery first (mastectomy) back in June and then again in July for a wound issue. For my first chemo session I wore a dress with short sleeves - short sleeves so my picc line could be accessed and a dress so it was easy to lift up and have a wee whilst being connected to the drip thing. I would take a cardi or something to put over your shoulders and it was a bit nippy sometimes.

I've been struggling after my first chemo round with side effects. The steriods (assume it was them) bunged me up quite badly and a week on, although I am going every day, there is a lot of blood too - fresh and I'm not concerned about what it is - it must be piles - it does hurt and the blood loss makes me feel weak for quite a while after. I have found now that if I eat something sweet after I get some of my energy back, otherwise I am useless for the rest of the day until after dinner when I perk up again - presumably due to food intake.

The first lot of anti sickness tabs did nothing so now I am taking the "topup" tablets which seem to be doing the job. My main issue is the weakness which I think might go away if I sort out the bleeding toilet issue. Our supermarket only had fibrocalm available, can anyone recommend something I can buy online that will help pretty quickly? I am going to ask at my next Onc appt that I miss the steriods going forward.

Hope everyone else is coping ok. Glad the weather has cooled considerably!!

@nappybrained good luck at chemo today, @EachandEveryone good luck at radio.

@Scandimandy sorry to hear that. No useful suggestions for meds sorry, but are you drinking LOADS of water? Ought to help with both the bowels and the faintness. Also I believe antiemetics bung you up too so those probably aren't helping you. Drink drink drink!!

@BreakfastClub80 I am in chemo as I type & wearing jeans, a vest top and a hoodie. I have a portacath (injection site in my chest) so a vest top allows easy access to that. If you find out where / how they will deliver the chemo then that is useful for planning clothes. Can't go wrong with layers though.

Also on our previous thread I had posted a list of things to bring just near the end, I'll find it and repost if you want something else to tackle while you are waiting.

My other useful pre-chemo-especially-if-you-have-kids tip is to try and get ahead with your household chores! I told DH yesterday that I felt like I was preparing to go on leave from work. You know that feeling when you try and get reasonably up to date or at least with a clear to-do list, so that when you hand over to colleagues you're not leaving them a shitload of stuff that needs doing 🤣 that's how I feel pre-chemo, trying to minimise how much I dump on DH while I lie around feeling crap and watching Big Bang for a few days.

I'm in chemo no.3 now with the bastard fucking wanker cold cap on. But still have a full head of hair even on EC so it's working!!

I asked my consultant this morning if I could reduce any meds and got told suck it up buttercup, they're all necessary and next time there will be even more. So that went well 🤣 he put it more nicely than that obviously!!

List of things I take to chemo:
Paracetamol (advised because I'm cold capping)
Warm shawl & cardi & socks, most of which I haven't needed so far but you never know
Book they've given me to record symptoms and side effects in
Pen and paper so I can take down my medication instructions
Hairband
Phone charger
Book
Snacks
Bracelet which spells "Fuck cancer" in Morse code!

Scandi It's likely it's the anti sickness tablets causing the constipation and bleeding, they give far too many of them. If you ask chemo team they have more tablets to sort it but I also cut the anti sickness back to 1 a week. Though obviously if you are having sickness issues may need more. But that is what I had with the 6 ondasetron first week, plus massive indigestion. Solved it myself by eating lots of fruit and stopping the ondasetron until it went then 1 a week pre chemo and then 1 more a week after if needed.

Hi Scandi, I was given some lactulose which helped massively, I don't know if you can ask about them? Those anti sickness meds caused me bad constipation so I stopped using them after chemo 1 as I didn't have nausea. But I still had constipation from other tablets. Another thing that helped was lots of walking which loosens things up. And of course water.

Sorry to see you here @Breakfast, I used a shawl to wrap myself during chemo as I could take it off and put back on easily. I took a book to read but ended up watching mindless stuff on Instagram. You will find that the time goes by very quickly and you are out in the sun again. You can even take some eye masks and have a cheeky nap if you want...but then again this might make the nurses nervous as they like to keep an eye on you especially chemo1. In addition to what others have recommended I will add take a little something that reminds you of a very lovely time.

@AllotmentTime Interesting to hear how well cold capping is working for you! I have been cold capping and going in for my 4th round of chemo tomorrow. Different chemo regimen (TC), but I have shed loads.. From the front I look ok (my partner says he can't tell from the front), but at the back I have massive bald patches. Also on top. This may be due to bad contact with the cap in those areas and/or due to rubbing against the bedding at night (the back). Basically, I think I am down to about 30% of my hair at best. However, as it is quite wavy/curly, I can maintain a certain illusion of having volume if I wear a hat or very wide headband, that goes to the back. This is indeed what I have been doing and I don't think anyone on the street would notice I had very little hair. I got a wig at the start but have yet to wear it. Fingers crossed I won't have to, though this last round of chemo may well finish me off hairwise.
For those of you who are finished with chemo, how long did it take to start to see some regrowth?

Thanks for the new thread @LemonDrizzle10

Welcome @BreakfastClub80! You will get loads of helpful advice on dealing with the practical side of chemo here. So many people have been through your treatment and will be able to help.

Has anyone been in the situation where they get conflicting advice on treatment from their team? I know this is very minor compared to what many are dealing with here. My BC was early stage and grade one. It is a rare subtype of IDC called tubular breast cancer which has a fairly low recurrence rate (around 8-10%). My oncologist says that the benefits of hormone therapy for me are small compared to the potential side effects. So far so good. But I saw my surgeon for a 6 month post surgery check yesterday and she is strongly advising that I take HT. In her opinion although my risk of recurrence is low taking the HT reduces that by 40% so I should do it. I'd rather not take the HT but am now conflicted!

Welcome Breakfast I just wore comfortable things to chemo as it's just sitting round in a chair for hours, often velvet so could stroke it if nervous but people wear all kinds of things. They may need access to arms for cannula but otherwise anything you like. Its also worth thinking about what you will do after hair loss and getting something like a chemo beanie, loads on Amazon or a wig if not cold capping. It tends to go around day 19 or so though can vary. Worth going to dentist pre starting as well and telling them, getting any work done and some extra strong toothpaste, mine did a prescription. Had to go private due to the state of NHS dentistry here like a 4 year wait.

Kefalonia If you Google Predict Breast and put in your data and click on 10 years it can give you exact benefit from hormone treatment. Benefit is being alive rather than dead when I asked. 😂I am on them, would prefer not to be but mine is at 10% so big benefit and they aren't that bad for me. Wreck your teeth and insomnia but otherwise nothing much. It really depends 40% of what. Oncologists generally advice and also there are a few risks like blood clots and I think rarely a different cancer.

The dental thing can be managed with a good dentist.

The other thing to bear in mind is when they talk about reoccurrence it's stage 4 they mean. I initially thought they meant another new cancer at stage one or two.

Aargh I posted and lost it!

Welcome @BreakfastClub80 you will see a chemo nurse who will explain everything before you start. They may offer a PICC line which while mildly scary to have fitted is really useful to avoid trashing your veins.

@Scandimandy i got colitis with EC and had to have a colonoscopy afterwards but it had gone completely. The best laxatives I think are Laxido or Movicol although it’s like drinking a slug. Down in One!

@doublec I see you. I haven’t had abemiciclib ( yet) but 40 months in after two different primary BCs I am world weary with the endless stream of new treatments . I have 280 tablets left of Capecitabine, 42 days to go and counting down. I can feel little bubbles of joy fizzing up but don’t trust anything.

@Silkiebunny that explains a lot. I could not understand the discrepancy between overall recurrence rate and the Predict stats. This stuff is not good for nervous people.

@fairywren thanks for the wombats. Just what we need! I will try to capture some Dartmoor wildlife on my mini adventure with the Sculptor. Off to pack up now.

Chemo tips - I took extra strong mints and ginger biscuits to eat when I felt nauseous while the chemo juice was going in.
I used the cold cap - nurse wet my hair and put conditioner on before putting on the tight fitting cap. I lost about 50% of my hair but still looked ‘normal’!
My micro bladed eyebrows are still looking ok - glad I had those done.

I wear a poncho for chemo - if I’m cold. Actually sat on it once, because the chair was so cold.
I take Books, but tend to watch Netflix on my iPad.
Elasticated trousers were the tip that I found most useful- if trying to go to toilet - easier one handed.

Snacks/ drinks/ spoil yourself a little.

Ive bought a fair amount of headscarves from Amazon, and match or contrast them to what I’m wearing. I don’t like the wig as I find it too warm on my scalp.

At least with chemo we feel we are fighting back. X

Next time I'm bringing a packed lunch. I just fancy my own food, and actually, what's anyone going to care if I turn down their food and eat my own. I want sandwiches made with my favourite bread and I want good crisps, damnit.

Yes I am grumpy sitting here with the shitty cold cap still on ☹️

If you’re talking an antihistamine Loratadine has research showing it can help reduce recurrence, as can melatonin which is pretty easy to order from the States. I’m on both and I sleep really well.

Regrowth starts straight away IME, but if you’ve cold capped you’ve got the problem of multi-length hair. I’m now 10 months out and I have a few inches of curly grey hair and then the remainder of my highlighted chin-length bob. I reckon it will take another 6 months to finish growing out. It’s pretty messy but I’m still glad I cold capped.

Thanks for the new thread @LemonDrizzle10 I've been spending more time hanging out on the thread for us Stage 4ers but I have been reading and lurking here too.

@KefaloniaKid @Silkiebunny has it right, the Predict tool is very helpful and you can ask your oncologist or surgeon to go through it with you too. From what you say, the difference is 40% of an initial 8-10%? What does that mean in practice when balanced against the possible side effects/risks of the hormone therapy?

@isaxx I've only got as far as your question about regrowth but today is a forgetful day so I'm answering now 🙈 I've had regrowth since we shaved my hair off after week 5. There's a patch at the front that must not have fallen out at the same time that's spiky, but the rest is maybe 1" ish long. So fairly slow growth but then again I don't know how fast hair grows 🤷‍♀️ so you may see some regrowth before the end.

Thank you so much everyone, you’re so lovely and kind. I still struggling to get my head around it all.

For those of you having treatment today, I hope you get home soon and can count another one down.

Why am I nervous about 18/18 tomorrow!? Impressed I've got here, considering just how rough I was and the "we need to get something into you now" phone call, but still nervous. And very thankful for magic poison that has had a positive effect! Fascinating really, what chemo/other drugs can do for a person!

@Lemon thank you for the new thread!

As for hair regrowth, my surgery was delayed so there were 9 weeks between my third and fourth chemo, during which time my hair had already started to noticeably grow back.