Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

@LemonDrizzle10 I had the same experience as @TopOfTheCliff - EC gave me nausea, indigestion and bowel issues and stuff tasting weird. None of those issues with paclitaxel but it was that one that made all my hair fall out, and for the first few days after receiving it my bones and joints were very painful, especially my legs at night which was strange.

@dotty2 you are the first person I’ve heard about who is also weakly er+. I’m glad you are coping well with the medication & hope it stays that way.

I coped really well with chemo so mistakenly thought I would be ok with this too but sadly not the case! I’m giving it until my next oncology appointment - I will be on it 3 months by then.

The pain is all concentrated in my right foot which is making it really difficult to do the same level of exercise as I did before. It seems a big price to pay if it is not very effective but I will plough on for another few weeks! I know though that I’m probably too scared not to take it as I want to give myself the best possible chance. This whole thing is a nightmare (having a bit of a bad day today but will be fine tomorrow:)

Good luck everyone xx

@WorryMcGee the cold cap has worked for the EC - my hair is definitely much thinner though- I’m boosting it with mega conditioner. I got my wig a couple of weeks ago, going to hopefully style out the bone ache. Sigh.

@LemonDrizzle10 I will cross everything for you. I cold capped and kept all my hair, eyelashes etc on EC, it only started shedding on paclitaxel - but my body didn’t like paclitaxel at all (much to the consultant’s surprise as apparently it’s the “nicer” one!) I had a nasty rash after the first one and I felt a lot more tired on it than I ever had on EC, but all the other women having the same treatment at the same time as me found EC the harsher of the two.

@Onecattwocats - sorry you're finding it so tough. Exercise also really helps reduce recurrence risk so not being able to exercise is not where you want to be. It's not that AIs are definitely not effective for people like us, it's just that we don't know whether they are. This whole shitshow would be a lot easier to cope with if there was more certainty about it all. But I guess that's the nature of the beast. Sending strength and sympathy.

@LemonDrizzle10 i did lose all my hair on paclitaxel but didn’t cold cap and so far I do at least still have eyelashes. My skin got really dry and sore and peeling in places - what really helped with that was weleda skin food and hypercal wound salve - not hugely expensive and you can get them in Holland and Barrett. I also got a lot of crusty dried blood in my nose which I used a saline flush for. I found that food tasted weird/unpleasant but the nurse told me today that apparently if you eat some fresh pineapple before a meal it can help with that, provided you don’t have ulcers. On the plus side I have had very little bone or joint pain

@WorryMcGee my first EC knocked me off my feet for two weeks, my second and third were 85% and it was bad for week one but I could shuffle about on week two - I’m so hoping the paclitaxel is slightly less brutal!

@bringonyourwreckingball I’m adding wileda skin food and Hypercal to my next online shop….along with a pineapple.

It’s a nuisance that we all get different side effects. I’m with Top though for the phrase ‘knowledge is power’. Plan for the worst and hope for the best.

@LemonDrizzle10 I was a total anomaly in my little group at my hospital - they all found EC really awful but apart from the first one I felt pretty okay and I was surprised. I looked and felt relatively normal. Paclitaxel was the one that made me look and feel ill (it wasn’t terrible, just worse for me than EC) but everyone else was saying how much better they felt and all the staff were also saying it’s usually better tolerated than EC so hopefully you’ll be in the majority and not in my weird little club 🤞🏻

@WorryMcGee I don’t think I’ve uncrossed anything since January. I just really hope I stop wobbling about and can drive the car! I’d so love to be able to do the school run with DD. I’m desperate to get to the beach too!

Hi ladies, checking in..

@Onecattwocats I get very bad foot pain from Exemestane, a different AI. In my case plantar fasciitis, which can be triggered by AIs. But weirdly, I only get it from some brands (Accord, Mylan) and not from others (Zentiva). So monitoring which brand you are getting from the pharmacy might be useful.

My weird rash on the bad boob has disappeared after 4 days, but it's freaked me out a bit. I called my BCN and will see my surgeon at the end of next week (I have to go in for my Zoledronic Acid anyway, and surgeon can see me on the same day). Just in case. I was diagnosed in August 2020, with Stage 3 Grade 2 IDC with 5 cancerous nodes and lymphovascular invasion, so high risk for recurrence etc etc. Lumpectomy, chemo, rads.

Also found out this week that my chemo buddy from 2 years ago has just found out her cancer is back - and it's stage 4. I'm heartbroken for her and her family, and it's put the fear in me.

Well I had my first Phesgo yesterday which I was strangely excited about…so grateful to be living in 2023. And then my first Docetaxel today which I was very nervous about. Apart from sleeping all afternoon I actually feel ok…far better than after any EC round. Of course it might be the steroids seeing me through but I take it as a small win!
@LemonDrizzle10 I hear you about the school run…it’s doing the school run that has kept me going - some days it’s been my only achievement! I made it to a beach over Easter…and for the first time in my live I fell into a rock pool!! I blamed on on the chemo wobbles!

@TopOfTheCliff well done on your sailing achievement! Until about 5 years ago I crewed for a chap in his sailing dingy…I can relate to the feeling of being on the water…just magical. Along came my children and then my helm had cancer and unfortunately passed away which put a stop to my sailing days. His death (young only mid 50s) was what made my own diagnosis so difficult as that was my only experience of cancer. Shit I’m going to die! However, I know there’s, hopefully, light and life at the end of my tunnel and maybe after all this crap next summer I too can get back on the water!

@Whattodotomorrow glad everything went ok for you yesterday. Hope you're feeling ok today.

Can I ask what every does to try and distract themselves whilst waiting for biopsy results? Last time I had to wait three weeks for them, this time it's only 8 days ( Thurs 27th) and it's feeling like a life time. Seemed to cope much better with it last year, maybe then I could convince myself better it wasn't going to be cancer, but because I've had it, I've already decided it's going to be cancer this time round, because of what she said.
Anyway, I do have my kids keeping me busy and whilst they were at school Thurs/Fri I read a 400 page book🤣 ( it stops me thinking lol) what are your distraction techniques? ( Would normally be at work, but only 10 weeks out from heart surgery and wouldn't have been able to start again until 16 weeks post op)

Thanks @dotty2 I’ll be fine was just having a bit of a down day but a lot better today :) @KentishMama glad your foot pain eased - I heard this about the different brands & am on my second one which hasn’t made a difference so far but maybe I have not hit on the one for me yet. The pain actually doesn’t seem as bad this morning not so fingers crossed it’s beginning to settle a bit :)

@Onecattwocats I can usually feel a slight difference about 2 weeks after changing brands, and then I'll know for sure after 3-4 weeks. Fingers crossed!

@Chocolateismyfavourite I need to be outside and move with I am anxious. My friend's bad diagnosis this week has so far resulted in a freshly mowed lawn, two very weed free flower beds and a freshly painted garden wall. There's something about physical work and fresh air that's therapy for me.

I hope the time speeds up for you.

agree with Kentishmama about keeping outdoors - a walk surrounded by greenery is good for keeping the stress levels down.
start a gentle project: sew some seeds, the joy of watching tiny plants coming through the soil is always lovely. If you’ve not got any outside space get some to go on a window sill. I can send you some if you like.

Thank you both of you. You are right, I'm better being outside, in normal situations anyway, it always makes me feel better, so it wouldn't be any different now 😂 I'm going to the park with my youngest son this afternoon to meet some friends wich will be nice, and tomorrow morning, after I've watched some of the London marathon, I'm going for a walk with another friend, who I usually run with but can't yet. So I'm looking forward to that. I usually clean alot when I have things on my mind, the kitchen had a good going over this morning 🤣 I'm a angry cleaner too, if I'm cross and start cleaning, they all stay out the way hahaha

Im up early trying for Glastonbury tickets for my friends. So far theres only two of us going and theres usually 12! This year of all years honestly it would be lovely to have us all together. Im happy with my bestie though, she just gets me. Shes a bloody good nurse as well. I dont kniw how Im going to tackle the drinking bit though. I havent had one since xmas.

also my second to last chemo will be on the Monday and I really dont fancy going camping the next day. I wonder how open they will be to me delaying the last two by a week? Also how soon does radiotherapy start? I already have the appointment to see them in may. Chemo due to end beginning of July.

Im in my 4th cycle now. I have like odema. Patches in my chest area and under my arms. Is this a reaction? Ive had to undo my bra.

its a lovely fresh day in London. I have abit of a balcony but at this stage I cant tell whether the pretty purple flowers are weeds or actual flowers😃. I do need to get out there at some point. Im going for a walk through the park to M and S see if thry have any food deals on. I dont know what I fancy yet.

@Chocolateismyfavourite I'm always listening to podcasts as a distraction - not the cancer ones though!

For anyone wanting relaxation I can recommend a session of Bowen Therapy. I had a free mini taster recently & I felt like I was floating afterwards. It's not something I'm following up though as I'm in "put up & shut up" mode at the moment!

@LemonDrizzle10 I've got windowsills full of seedlings! And loads of hardy ones outside in plastic bottle mini greenhouses - an experiment in "cold sowing" I randomly read about online. After not being fit enough to do it the last two years I've gone overboard!

@Chocolateismyfavourite I've been on a wait for scan results this past week - booked in for absolutely every and any wellbeing/art/hobby sessions going. I've zero natural talent in any of them but they've done the job!

Out of interest, are the majority of posters breast cancer patients on this thread?

Podcasts, good idea thanks.

I'm breast cancer yes, sounds like you have a great week planned out whilst you wait for your results, hope you don't have long to wait either.

@EachandEveryone I had my last chemo March 2, and I start my 10 days of radiotherapy on Monday. I thought it would start up much quicker than it did. I actually felt a bit lost for a while as I hadn’t heard anything. I’m going to a different hospital for it because I wanted it over with before we go on holiday mid-May (makes the travel insurance a hell of a lot cheaper) so if I hadn’t been a pain and badgered them I get the impression it would have been end of May!

@EachandEveryone It will be about 10 weeks for me between chemo and radio but that’s longer than normal. Combination of a misplaced referral and heavy workload at the RT centre. Finally starting Monday. I’ve hated the gap with nothing happening and the uncertainty and being unable to plan work and fun stuff. Obviously not as bad as waiting for test results though. Sending strength to everyone waiting

Can't speak for anyone else but I have melanoma

@LarryStylinson BC is the commonest female cancer so it’s not surprising if there are a lot of us on here.
@Chocolateismyfavourite I am a worry gardener and an angry cleaner too. During my first diagnosis I weeded my whole allotment and made gooseberry and blackcurrant jam. I need to catch up there, obviously I am too laid back at the moment. @HauntedDishcloth I am very impressed, I shall cheat and go to the garden centre for seedlings.
I have been doing some serious thinking about my state of health. I have come to the end of radiotherapy having put on 12kg, and my BMI is now 29. I am unfit and the clever scales say I am 33 percent fat. I am at risk of diabetes too.
I was at this point in April 2021 and I clawed back my fitness. Now I have to get motivated and do it all again. I have an arthritic hip and a dodgy shoulder which makes running and weight training difficult. I’m thinking swimming and cycling will help, and hopefully I can get my hip replaced next autumn.
Maybe the chemo tablets will act as an appetite suppressant and I will become miraculously thin. That would be a great side effect! But knowing me they will make me crave midnight snacks and I’ll end up fatter.
Sending calmness to all
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