Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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@medianewbie

I'm sorry to hear about your birth mother and partner. You've experienced so much loss.

I just want to wish you and your 2nd mother all the best. Oestrogen positive breast cancers are usually the ones with the best prognosis out of the breast cancer diseases. I hope she'll receive good treatment and do very well.

@lucysmam

I found Ondansetron a pretty good anti-emetic. I was also on Aprepitant too. Not sure if either of those would be suitable alternatives.

They shoved Metoclopramide into my PICC line as a pre-med on Abraxane which made me feel unwell, so I think it makes people feel worse than they realise.

I didn't even get any nausea, although who knows if I would have done without the anti-emetics.

@SummerCycling thank you, I'll look them up & discuss with my oncologist on Weds. I'm fairly sure it is the metoclopramide - that and the chemo are the only recent new things. I feel fine, as I said, but obviously would rather my heart was doing normal heart things.

Do any of you find you're more hungry than usual? I'm starving a few hours after eating & I'm going to end up the size of a small horse if I'm not careful 🙄 I'm eating proper meals too - not junk/snacky things (although I have just polished off a packet of crisps & a wagon wheel while the girls had a late lunch 🙈). The only other explanation is the weight I lost needs to go back on & that's maybe why I'm so hungry 🤷‍♀️ I don't know but it's really weird for me!

@SummerCycling I’ve just had my third injection of Phesgo but because it’s still with the chemo, it’s difficult to pinpoint any Phesgo side effects. I think you are further along a very similar treatment plan. From reading, I gather that kadcyla is given if clear margins aren’t achieved after surgery, otherwise it’s Phesgo. Someone wiser may have more knowledge! There’s also talk this week from Dr Liz O’Riordan about a possible her2 vaccine being developed in the States…it’s prob years down the line but again shows the progress being made.
Thanks for your info on the node clearance …fingers crossed the exercises do the trick for you.
Hope everyone is enjoying the sunshine.

I’m based in the East Miss area and my treatment is split across two hospitals…both an hour’s trek.
I just wish I could the same person each time!

@SummerCycling I had the precautionary year of Herceptin in 2021 as I had a complete response to chemotherapy with Cancer no 1. It wasn’t too bad, just a pain having to go in every three weeks for the thigh injection. I had a runny nose and sore bottom but nothing much else that I can remember.
My DD is going to work for Pfizer BioNTech on Cancer vaccines for the rest of this year. What they are doing is groundbreaking and brilliant.

@lucysmam if you have steroids with chemotherapy they make you hungry like a wolf! I put on 2lbs with each round and am trying to slowly shed it again. Also comfort eating when you feel sorry for yourself is very easy to do.

DH is off on a cycle trip again tonight. I miss him but it is quite nice having the house to myself and eating nothing but healthy food. I am currently arguing with a vanilla crown pastry he bought this morning for me. I think I had better get it out of the way now with a cup of tea and then it can’t taunt me any longer.

We have just been to a lovely birthday party of a good friend and met up with lots of friends I haven’t seen since before lockdown. It was a nice reminder of how sociable and fun life can be the other side of treatment. 122 days to go and 820 tablets left to take and believe me I’m counting!

@TopOfTheCliff even days afterwards!? Crikey I'm going to need to be really sensible or I will not be fitting in my clothes 🙈 My tum is grumbling already but it can wait an hour or so for tea!

@lucysmam @TopOfTheCliff

Talking about weight gain, I gained 2 stone (!!!) I managed to keep it stable on the first 4 cycles despite Dexamethasone, but it gradually went up. I had a very tough time emotionally in the winter (due to other factors, not just cancer related) and put on loads. The hospital reaction was that they like weight gain - it's better than loss... even though i am now officially overweight.

Oops, didn't mean to post yet.

I am a comfort eater and have eaten a LOT over the past few months for such a short person (about 5'1")

@TopOfTheCliff

Those vaccines sound amazing don't they; how exciting your DD is involved in that!!! I just wish I could go on one after Phesgo ends, being very high risk being stage 3, grade 3, , multiple lymph nodes, HR-neg.

Oh not again!!! I wanted a new paragraph, not new post...

@TopOfTheCliff

I've also got the runny nose! It's like water isn't it, it runs out like a mini tap.

Diarrhoea and peripheral neuropathy are my other Phesgo side effects. I'm 2/3rds of my way through the year of it now. I was wondering whether anyone else got neuropathy from it.

Do you think the vaccines will be any use once HER2 returns as stage IV? I am so worried mine will, I can't seem to imagine it won't. My prognosis was originally 'poor'

@SummerCycling I'm shorter than you (4' 11"!). I need to come up with a sensible plan to handle this - I'm not really a comfort eater but am particularly fond of pretty much anything sweet 😋

@TopOfTheCliff I'm on a trial that is using a vaccine / targeted therapy. They will inject me with the cold sore virus into one of my bulky lymph nodes and the hope is that it will help the immunotherapy attack the cancer cells.

I will admit I'm surprised at how quickly I have progressed between lymph node dissection and now, I've developed about 15 new tumours so frankly anything that will give me more time!

I'm so desperate for the immunotherapy to work!

Hope you're all doing ok. I went to Edinburgh last weekend as a final trip before treatment and it was so nice to get away

@Whattodotomorrow

That's great to hear we're on a very similar treatment plan, I haven't met anyone in person on a similar plan. Everyone I meet with BC seems to be HR+ ...

Yes, they told me the same, basically that after surgery if there's any invasive cancer left then it's Kadcyla, while with pCR it's Phesgo. I got pCR, at least they didn't find any invasive I just hope they didn't miss it because my original mass was enormous (over 10cm) and in too many lymph nodes to even count.

I've heard about the HER2 vaccines. I think there's a really good one in phase 3 now, but due to Brexit they aren't doing the trial in the UK, only across the USA and EU. Brexit apparently made it too complicated for them to do the trial in the UK (American company). I would have met the criteria and the timing is right too, shit Brexit 😡

But yes, absolutely, the progress is amazing. Top's DD is involved in another vaccine development, different to the one I'd read about.

Are you also HER2+++ and HR negative?

@lucysmam

Oh yes, so you're even shorter 😃

I need a plan too because I can only squeeze myself into a couple of clothes, while the rest of my wardrobe is all too small.

How long will you be on steroids for?

@FangedFrisbee

I am keeping my fingers tightly crossed for you and the immune therapy. Please keep us updated xxx

Good you had a nice time in Edinburgh!

@SummerCycling only the once a week, before the paclitaxel, which is why I was wondering whether it was likely to be that or not. This amount of hungry seems extreme if it is!

@SummerCycling I decided that as none of my nice clothes fitted me I would just buy some for fatter me to wear this summer and hopefully by autumn I will fit my usual clothes. I’ve gone for lovely floaty linen trousers and loose tops with a gorgeous broad brimmed hat and sunglasses. I’m getting lots of compliments. Also I have bought some Hey Dude soft shoes which are recommended for sore feet on Cape by the US brigade.

Thanks for the cat compliments Pinch and Summer

Re the weight I managed to not gain weight during treatment though still have bought quite a lot of new clothes - some because of mastectomy so need different swimming costumes, bras etc, also I had to get a lot of tops rather than dresses as you have to undress top half so much at hospital. I calorie counted to 1600 each day (plus any exercise) and seemed to stay stable at that - I found little and often was best way to stop cravings. I also have a sweet tooth so I ditched a lot of savoury in favour of Haribos so hoping the sugar causes cancer aren't right. Though I think its totally normal and understandable to comfort eat during treatment and to find steroids increase appetite, it was the thought of needing to lose it after which put me off. Though its best not to lose weight in chemo or get too thin if you want DIEP. There's an upper limit of BMI 30 at my hospital but also lower end requirements of enough fat needed.

DH has spent weekend in France and just got back. One thing would recommend to anyone starting is visit the dentist, probably private these days and the last thing you will feel like doing. But mine really helped with extra fluoride toothpaste and sorting all before treatment and advice and it helped me not have dental issues. Though Tamoxifen can cause them too so not out of the woods.

My hair is definitely not that attractive, its thick and part curly but not long enough still and the curls can go a bit crazy. Its getting there though, mainly just needs to grow now. Its about twice as thick as pre chemo.

Forgot to say Summer my arm with node clearance felt weird too think it's the nerves but not got lympoedema a year on and swimming has made it much better over time. Got a swimming prothesis. It now only feels numb under armpit rest feels OK, full movement, full strength. I would guess any exercise using that arm again might help, seems to be building strength in it that's helped. I was worried about radio and lympoedema but they said 8% risk, 92% chance OK. And been since last August now still OK.

I really wish MN had a 'like/support' button...I haven't been commenting too much but I read the thread every day and laugh/fume/weep along with everyone.

First day of chemo for me today. I've been awake since 2am and not really too sure how I'm feeling. Certainly a bit anxious but mainly I think it's more WTF disbelief. Exactly a year ago today, I was walking into Santiago de Compostela after completing a solo 6 week, 800+km hike on the Camino Frances across Spain. The previous few years had been really hard, I'd lost my amazing Mum to motor neurone disease disease, I'd moved countries (reluctantly), I'd been made redundant from a job that was stressful but I adored, and then successfully set up my own business and finally found work/life balance. Home dynamics had also changed with both my daughters leaving to go to Uni, where they were flourishing (after a few tricky teenage years). So walking the Camino was a huge rite of passage for me and a chance to do something completely selfish after years of prioritising being someone's wife, mother, employee and I relished every second.

So now to find myself googling cold capping, nausea meds, chemo bone pain and cancelling all the things I planned for the summer is hitting a bit hard. And I'm trying not to even think about the 'I need a toilet immediately' card the chemo Center have given me incase I think I'm going to sh*t myself in WHSmiths.

After my initial diagnosis I had my head round the surgery and radiotherapy and was feeling v fortunate and positive as I'd recovered really well but the recent decision that chemo is also needed has thrown me. I guess the last few years has taught me I can be super resilient so I just need to get on with it all but I am super pissed off. Even the support cats aren't helping this morning.

@Atreus sending you lots of support for today. Chemo is a big emotional hurdle even without the physical challenges. I am almost halfway through my 12 week course and have found the symptoms I was worried about (nausea and vomiting) haven’t really eventuated but others have popped up that I wasn’t anticipating- like sore feet! I am being treated for bowel cancer so I understand the stress around possible accidents. Thankfully I’ve never had one in public, only once at home and many post surgery in hospital. I also have emotional support cats. They are mostly helpful except when they absolutely must sit on my stomach when I’m lying in bed feeling sore and sorry for myself.

Cancer and chemo have had a positive effect on my weight because I needed to lose a few kg and I’ve lost 15. Am still in the healthy weight range so it hasn’t raised any red flags yet. I’m on a pretty limited diet while my body works out how to function without a colon so it’s challenging some days to eat enough.

@Atreus it felt like waiting to jump out of a plane with no parachute for me 3 weeks ago, if that makes sense. I was bloody terrified! Honestly though, it isn't what I'd built it up to be (probably didn't help that I got a call rather than f2f "we need to see you to start chemo NOW!") and everyone at the chemo centre has been lovely. I hope today goes smoothly for you 💐

@Atreus I’d love to do the Camino! I went through a phase of reading lots of books about it a few years ago but what with with Covid and cancer, it hasn’t happened for me yet. Yeah, pre-chemo emotions are horrible, you think why am I poisoning myself, will life ever be the same? I had paclitaxel and carboplatin, and it obviously wasn’t great, it wasn’t as bad as I expected.

@AGreatUsername I seem to have lost the outer edges of my eyebrows again, I didn’t think about the growing cycle, I did wonder though, whether the chemo had done something to my iron, B12, or thyroid levels, but a Google on eyebrow growing cycle length indicates it could be that.

I changed my diet quite a lot and took off weight after I was diagnosed and I haven’t put it back on again, I eat quite a lot, but it’s mostly plants. I love my new body shape, it’s the best I have been as an adult, one benefit of cancer (!) but the downside of it is that I’m constantly thinking I eat a lot but I’m not putting on weight, have I still got cancer?

@Atreus thinking of you today. Chemo definitely takes an emotional toll regardless of the side effects. It's about the only time I feel like a 'cancer patient'.

@Atreus good luck today - it’s daunting waiting to get started and not knowing how you’re going to cope physically but you may find once you get started you feel a bit better - it becomes more about the process of treatment rather than the bigger scarier picture of ‘I’ve got cancer’.