July 2024 chemo starters

[pipspops]

Good to hear everyone’s news, holidays, achievements and other life doings! Garden party at BP wow!!

I had a good holiday and it recharged the batteries for us both, with a great change of scenery. Much needed. Managing to up the energy levels and deal with the side effects of extremely stiff joints in the morning, especially my hands, and ankles in the evening. Made a start on decorating the house and progress is slow but gainly……going to be a long affair!! Not quite a midnight walk or a Sister Mary Lazarus (well done ladies ) but energy progress.

** if you don’t want to read a whinge and a moansville stop reading now, I’ll understand, it’s true but a little self indulgent and I’ve had a seriously hacked off kinda day!**

I’ve been doing my best to take stock of my current situation and get on with life as though I’m “normal” and in doing that learning what my new normal is.

Getting rather cheesed off with dealing with hospital. Had appointments due with gynaecologist and oncologist today. Gynaecologist didn’t show up after an hour’s wait and clinic was cancelled, then waited 2.5 hours past appointment time for a 5 minute chat with oncologist. What a waste of a day, left home at 8am and got back at 2pm. And I’m back there Thursday for Zoladex injection, which will knock me sideways for about 36 hours usually. Anything I ask the oncology team about improving my aches and pains are met with a ‘don’t know’. I want to shout ‘but that’s your job to know isn’t it?’ Even side effects clearly marked on the contraindications sheet are met with ‘never heard of that before’. WTF?

Had my mammogram on remaining boob last Monday but no appointment with anyone set for getting results. Great. As if the first mammogram after treatment wasn’t stressful enough eh?

Need to try to lose some weight put on last year, in spite of physical limitations. Again, oncologist helpful suggestion was ‘it’s difficult’. Cheers for that Sherlock .

I did try a Penny Brohn Menopause with Cancer online session to gain suggestions on dealing with effects of chemical menopause. Good speakers and, as a pre-cancer diagnosis menopause information talk would have been fantastic, but 100% honestly not for my current situation. Really felt quite demoralised with my side effects after this session as I realised just how far from ‘normal’ living I was, even though I was pleased with my progress. Lesson learned, I’m staying off any cancer help groups for now and just measuring and trying to help improve my progress by myself.

Sorry it’s a bit of a cheesed off one, but as the saying goes, if you know you know, and you wonderful ladies do know and won’t fob me off with some silly “at least you’re still here” and “the medication causes that” reply .

Love and big hugs to all - it so nearly one year since we met, thank you everyone for making this the space to be ourselves xx

[kerrylou1]

Hey @pipspops
I know what you mean about speaking with the oncologists now - they can’t really help anymore I don’t think. Mine are only interested in the abemaciclib side effects as they can reduce the dose I suppose.
I’ve noticed the zoladex this month does make me feel ick for a few days which I have never really noticed before.

I had a male doctor ring me last week for my
Monthly check-ins and tried to blame everything on the menopause (palpitations) - I was like I’m not having any side effects.

So then I asked about having ovaries out as don’t want to go for zoladex for the next 5 years. After asking the question 4/5 times he eventually stopped fobbing me off with ‘you have it for five years’ and said you’ll have to have a face to face appointment next month to discuss.

On the plus side my hair is really starting to grow back again on my head despite the abemaciclib (see photo that my hairdresser took whilst she was cutting it.

Much love everyone - working/living after a cancer diagnosis is hard. I sit there quite often and think what the f*ck have I just gone through and have a little cry. Xxx

[kerrylou1]

Hey you only regret the things you didn’t do I truly believe that

I’d go for it. X

[pipspops]

Rapunzel looking good babe!

Yes, my oncologist is kinda disappointed I haven’t had diarrhoea off abemaciclib- must be her only talking point!!! Good on you for pushing a discussion about your ovaries, don’t blame you either if you’re on 5 years of Zoladex. We must be improving generally if we’re only noticing now how shit it makes us feel. I’ve got my 8th jab this week and I was only certain it was that knocking me sideways last month. But if I know it does I can plan for it.

Apart from looking like a reverse Hunchback of Notre Dame, I genuinely have days where I almost forget about it and I’m so looking forward to being flattened/evened out so I can think even less about it. So much has been quite straightforward I just feel a bit bleh when I actually ask for guidance or shared experience and get zip… especially after hours waiting it’s 3 months since my last appointment and 3 months til my next one, so I’m not exactly a pain in the arse to her.

Anyway, I’ll be carrying on with my minimising sugar intake to see if it helps with the joint inflammation. Might help my weight too, if I don’t kill anyone with my lack of chocolate xx

[kerrylou1]

Ah you’ve made me smile that we must be feeling better if we noticing the zoladex makes us feel like sh*t
Did you say you’ve remained on 150mg of abemaciclib. I actually think it’s the easiest one of the drugs once the d has settled down (for me anywa now I’m on the 50)

At my monthly abemaciclib / zoladex and they ask you all the questions like do you have tingling in your hands or do you have hot flashes - I asked the question ‘what would you do if I said yes’ the nurse just looked at me. I’ve started saying no now as they don’t/wont/can’t do anything anyway

Xxxx

[pipspops]

I agree about the abemaciclib being the easiest med. Yes I’m on the 150 still and I’ve been lucky not to have any dramas.

I’m laughing at the futility of being asked about side effects when we go for the injection. I’ve mentioned from weight gain to trigger finger to walking like an old woman… tumble weed I’ve one more next month at hospital, then it’s coming to GP, with abemaciclib being issued 3 monthly.

[kerrylou1]

Bet you’re glad about only going to the hospital three monthly. How long have you go to have the zoladex for? Have you asked about three monthly zoladex or do you think that would tip you over the edge?

[pipspops]

And going to hospital for updates will only be for as long as oncologist has something to say🫤 I’ll be asking for telephone consultations after yesterday. 50 mile round trip for hours of waiting and a few minutes of nothing.

Exchange for 2 mile round trip for monthly Zoladex and 3 monthly tabs at GP surgery. Gimme that!! I’m on for 2 years as I’ll be 56 then and assuming I’d have naturally gone through menopause. As I managed a period during chemo it’s anyone’s guess!! Late finishers in my family Abemaciclib plan to finish then as well I think. Letrozole 10 years.

I asked about the 3 monthly Zoladex a couple of months ago- they do not recommend 3 monthly for breast cancer at my hospital. It’s done 3 monthly for prostate issues apparently, but thats it. I wanted it and just have a shit time every quarter, but no can do. Has your place suggested it to you? I know some people are on it, but not sure of the prerequisites.

[kerrylou1]

I think they vaguely mentioned it about the 3 monthly thing but that was when I was on chemo and she said all sorts they’ve not mentioned since.

I asked about getting the zoladex at GP but the info said because I’ll be going every month for abemaciclib I might as well keep it at the hospital for now… so I assume that’s every month for the abemaciclib (and no chance of three monthly) .

I’m 45 so that’s why I want to know if I can have ovaries out - because at 50 (after 5 years of zoladex) I might go back into Perimenopause and then what happens (does this put me at higher risk) and I certainly don’t want to do that or get periods again .

[idcand49]

@kerrylou1 @pipspops
You’re so resonating right now re the appts, no real guidance on this shitty chemical meno and more

I’ve also asked about getting my ovaries out as can’t face 4ish yrs of the Zoladex (and onco said that’s a guess as I just turned 50 in Sep)

Apparently im meant to think about it and discuss it at the next appt but have been given no information, sign posted about it etc

So relying on facebook groups and it’s 50/50 on women saying it’s the best decision or not.

Not sure what to do

Zoladex gives me a week of severe joint pain and insomnia and again relying on FB to supplement the hell out of the side effects

Silver lining was I had my 2nd bisphosonates (Zometa) and only felt crap for 36 hrs

Winning lol

The unit was heaving and I was there for 3.5 hrs as needed bloods & results done first, then the infusion and Zoladex

I was fed up so went to the local m and s with my cannula in as couldn’t just sit around - they had to tag it with so many details in case “I was found “

And have decided to go for the final round of this contact job

Sod it

Have nothing to lose and so much to gain mentally

Do you two ever feel like you’re stuck? I’m trying to move forward but unsure to where

I don’t want breast cancer to be my new identity but also can’t ignore it has changed who I will be going forward …

As for the hair, wow @kerrylou1 really filling in

Also very wavy (mine it too)

@pipspops where did you go on hols?

Bet it was bliss xx

[idcand49]

Gosh imagine having to go through 2 menopauses!!!

[pipspops]

@kerrylou1 I’ve had to complete a minimum of 6 cycles of abemaciclib before being moved to GP.
My monthly blood tests will go to 3 monthly too which is another ball ache less to factor in

[pipspops]

@idcand49 you definitely sound like you’re having a shitty time with everything knocking you sideways. Wish I could just give you a big hug . You’re reminding me that there’s always someone having a more complicated and frustrating time.

I can understand your wish,same as @kerrylou1 for the ovaries coming out. Its hard to get a carbon copy of you who has done it to talk to and see if it something to really consider, or if its going to open up a bigger can of worms in the long run. Wish I could help with an answer. I’m grateful not to have the infusion to go through.

I think in the great scheme of things, the phrase “if not now, when?” applies to just about everything in life. If you want to and can, definitely do! Go for it!!! I agree about not being defined or controlled by the side effects and finding an acceptable version of ourselves to take ourselves forward and thrive is what we have to do. Some days are easier than others. Little victories in fewer hours feeling crap after meds

As my energy increases I’m feeling less stuck, but still very frustrated with chemo brain, can’t flow in any conversation. And physically I definitely would like to look more normal. The prosthetic is awful, hot and uncomfortable, so I very rarely wear it. I do forget what I look like when I’m out and about, until I catch someone staring or I catch my reflection.

Tunisia was our hols, been going for donkeys years and the staff we know there were amazing. To sit and watch the sea just restored so much. We were last there a week before my surgery so it was a real reflective moment. And dead good

[zaran]

Hello ladies!! Sorry for the radio silence. You’ve all been on my mind for sure!! Im trying to catch up with everything I’ve missed.
I’ve been in a really strange place mentally and almost wrote myself off of anything cancer related. Really went into a shell and couldnt get myself out. Couldnt watch anything on tv that even mentioned it. Couldnt see a breast cancer advert without freaking out. Its been exhausting!! But I’m finally coming out the other side now thank goodness!! Been going to the gym, eating right, trying to get as much sleep as poss at night and not fall asleep in the day. Also got an allotment plot and i kinda hide out there most of the time but im getting better!
Sorry for not coming on here to check in. I hope youre all doing good

[ldm]

@kerrylou1 your hair looks amazing - mine has grown loads but is really curly - as in small tight curls🥴. I keep thinking it’s at the length now that people will probably think I chose this awful style - it’s nuts!!
Interesting to read people’s comments on Abemaciclib- for me it’s been a nightmare - major issues with white blood count levels dropping way too low, blood clots, fatigue. After a number of delays I’m on 50mg and this seems to be better so I have everything crossed I may have reached stability

[kerrylou1]

Thanks @ldm
Yes defo growing back well - a lot of the photo is the hair I didn’t lose from cold capping but I look a bit like lord farquar from shrek. Flicked up at the ends and a big pile of short hairs on the top (not a good look either) . I’m a nurse and I can’t tie it up very well in a pony (it falls out constantly so I look a fright when I’m having a uniform day and have to wear it up.

Sorry to hear you’ve had a bad time on the abemaciclib - I’ve seen lots of people suffer on the abemaciclib on the Facebook support page- I’m on 50mg and still have the diarrhoea but not quite as bad so prob going to stick to this for a while and maybe go back up to 100 . Xxx

I’ve just booked another trip to Italy with. Friend so that’s two trip this summer

[booklover1]

Hi Ladies!

The side effects of these drugs sound really tough. I hope its getting more manageable for all on them I had triple negative so no drug to take. I was wishing there was something but it doesn’t seem easy when there is.

Good to hear from you @zaran. Your allotment sounds amazing. I have just planted a few tomatoes and peppers in the garden and it made me happy:) I hope you are feeling ok and you are enjoying your allotment.

How are your feet @Cf640? I hope the blisters have cleared up. My friend had similar on cape & was recommended something called udderly smooth which helped.

I am back at work on a phased return. Finding it quite tough tbh. I wish I didn’t care but I am very self conscious about my hair which is a mix of tight curls and sticking up madly lol I have bought half of Superdrug trying to tame it. Your hair looks really lovely @kerrylou1!

How is the search for a new job going @idcand49? Fingers crossed its what you are looking for.

Is anyone trying to lose a little weight & get a bit fitter? My plastic surgeon had I should try and lose half a stone as it might ease the scar tightness on my tummy (Diep reconstruction). Also at the next appt at the end of August he is going to assess to see if I need any adjustments to balance new boob to other one. As the new boob/foob is made from tummy tissue it flucuates with weight gain/loss . I am not keen on having more surgery so trying to lose a couple of kilos…

There is a lot in the news atm about exercise being helpful to protect against reoccurrence. Its a great idea but its finding the energy. I am going to try & start swimming and try & build up to a few times a week (as I type this I am sat on the sofa not at the pool but you have to start somewhere)

How did your appt go @debi1, did the seroma need draining? Hope its more comfortable now.

Sending everyone love & best wishes x

[debi1]

Hi ladies. Sending love to you all . @zaran Sorry you’ve had such a bad time. Hopefully the allotment is helping . @booklover1 my appointment went well last week thanks. Saw my surgeon again he is so caring. He said all the liquid had now gone so it was just scar tissue i could feel. And also thats its normal to still be tender with the op then all the treatment. So he managed to reassure me and said it was nice to see me looking well. Ive the same problem as some of you ladies. My hair has grown enough for me not to feel everyone knows it was cancer but not a good style even if everyone says it looks nice. Well compare it to my bold head and it does . Im just waiting for my amazon delivery in the next hour ordered some pencil hair straighteners. So ill have a mess later. Wish me luck. Take care lovelies. Oh almost forgot I’ve signed up to organise an afternoon tea for breast cancer now.

[debi1]

[pipspops]

Short hair suits you well sweetie