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

[LemonDrizzle10]

Last one filled up quickly!

That's interesting about the anti-histamine Sierra

Hope it goes OK tomorrow LucysMam At least it will be over this time tomorrow. I was so happy to finish chemo. but a bit shocked to finish.

Thanks for the replies @Silkiebunny and @TwigTheWonderKid.

In terms of PREDICT, the benefit to me of taking HT is under 1%. That’s why my oncologist has advised against me taking it. But as you said PREDICT is looking at how treatments reduce the risk of death. I think what my surgeon is saying is that there is a further risk to consider, of the cancer recurring and needing treatment but not being fatal. She says that my risk of recurrence can be reduced from 20% to closer to 10% by taking HR. I can see that’s quite a large improvement and so don’t now know what to think about it all.

Morning all 🙂

I'm just seeing the girls out then getting sorted for chemo 18. Still nervous!

Hope you all have a good day 😊

@lucysmam best of luck today. Finishing Chemo comes with a new set of emotions. Do you get to ring the bell?

Hope today goes smoothly @lucysmam. I remember being convinced something was going to go wrong on the day of my last brachytherapy!

Today is not going smoothly 🙈 Dad's taxi is late 😱

☹️hope he has turned up now and chemo is going smoothly @lucysmam

🤣 sort of! Cannula in after 3 attempts. First went in but wouldn't flush at all. Second bled all over & they weren't happy with so removed it.

This one's high up my wrist & they're obviously not happy with it's placement & checking more than usual. I'm under strict instruction not to move my hand too because the machine keeps beeping about pressure being high...hope I don't need a wee! I also have pillows piled high to keep it where they want it.

Think I'm going to have bruises today 🤔

(It's also really hard to type with my left hand ...I'm having to correct loads of mistakes)

@lucysmam I hope everything is going smoothly now.

@KefaloniaKid its difficult when doctors have different opinions. Is it worth trying the HT for a little while to see how it affects you? I always try to keep my options open as long as possible!

I met my oncologist this morning and should start chemo next week (hopefully). It was a bit overwhelming and I’m quite a calm person and have worked in this area so am used to the terminology so I’m a bit thrown. I really haven’t got my head around any of it yet. I think there’s a big fear of the unknown at present.

We discussed me getting a port, probably in time for the second cycle. Is this a good idea? I’m quite thin on my chest and I’m a bit worried about that.

The oncologist also said I should be able to do 80-90% of normal life during the next 6 months (I’ll be having EC x4 every 3 weeks then paclitaxel x12). Is this optimistic? Or does it vary completely between people?

And should I get a wig? I’m hoping to try the cold capping but obviously it might not work out?

All opinions appreciated x

Hello everybody and thank you for the new thread. I'm through my main treatment for BC - my surgery was almost exactly a year ago, but on ongoing drug treatment. While that might seem to make me a graduate of this thread, I feel more like my DH when he had officially 'finished' his PhD but still had a year's worth of niggly corrections to deal with which still required fairly frequent attendance at the hospital department to use the special machines there.

@doublec- you asked on the last thread (I think) about abemaciclib. I am a couple of months in to taking it and happy to share experiences. My hospital takes an unusual approach of starting people on 100mg and stepping up to 150mg if they are tolerating it. (It's normal to do it the other way round.) I'm just about to step up, so I haven't had the full experience so far. I haven't had any diarrhoea as such so far, but have had looser and more frequent poos (sorry, TMI) and have to be careful not to eat too much fibre. I can only eat small quantities of pulses, for example (a pain as I'm basically veggy). I have been a bit more tired than usual and have been finding exercise tough - I had done couch to 5k after chemo and during radio, but can't manage 5k at the moment. But overall it hasn't been too bad. I've just been to the USA with my DD and coped fine with heat, sightseeing and jetlag. I had a large aggressive tumour and 4 positive nodes, so I am at v high risk for recurrence (and was only 49 at diagnosis), so I want to throw everything at it. Happy to answer any other questions.

Had a nightmare day yesterday. I had taken the day off work to help DD with uni packing and just had a routine blood test first thing. My veins are totally shot post chemo and it took 4 different people 12 attempts to get a sample, including me driving to the Big Hospital (a 4 hour round trip). That all took until 2.30, which was a bit miserable. I just spoke to the oncologist who said if I keep having issues, I could have test taken on the chemo unit in future. I wish I had pushed for a port or a line instead of having chemo via a cannula, so that's something to bear in mind possibly?

Sorry for mammoth post! Loved the wombat pics...

@BreakfastClub80 80-90% of normal life sounds a bit ambitious. Everyone is different but EC knocked me off my feet completely. Paclitaxel was easier. I stopped working at the end of January and I’m not yet back. I’ve done some light duties - that’s it.

@BreakfastClub80 Yes, 80-90% normal activities sounds a bit ambitious. In my experience (TC) it depends on the day. As to cold capping, I got a wig but have not yet used it and am sitting in my last chemo as I type. I did loose a lot of hair though, but can hide the bald patches with hat/ head band. I found getting a wig just in case took the stress out of seeing the amount of hairloss. It started quite badly on day 20, so am quite surprised that on week 9 now I still have any hair at all!

@BreakfastClub80 sounds similar to what I'm on.

I've just finished EC x 3 every 3 weeks. I've found:
Cold capping is not fun but I still have basically all my hair - the nurses are very surprised as apparently that's uncommon.

I'm finding the first week after each chemo crappy and although I did work through the first cycle, I only work part time from home and it still wiped me out. I would say three days after chemo I'm lying around doing nothing, the next two days maybe manage a few bits, after a week I'm pretty normal. I'm on filgrastim injections too which give me a lot of tiredness and bone aches. So I'm at about 60-70% functionality if you count it as two weeks normal one week not. Chemo was yesterday (Thurs) and I'm back to work on Wednesday which I think is about right for me, I could probably work more but it's a quiet time so I'm playing safe.

(Also that's with a 10yo and 7yo and a very supportive DH- younger kids would be harder!!)

I'm also finding the chemo is really mood-altering which I hadn't expected. I'm quite depressed for a few days. A bit like PMS where you feel inexplicably shit and then the hormones lift and you think "oh THAT'S what it was" and feel better!

I'm pretty thin up top and I don't think that's affected my port. It was very bruised when it was first fitted but then it's no trouble actually having the chemo. Pros and cons for different approaches I guess.

Next up for me is Docetaxel, 3 every 3 weeks again. So I am half way through - can't decide if that's a glass half full or half empty 🤣

Cant edit on the app but - I say I have all my hair- it's definitely been falling out, I was expecting to need hats by now, but the shedding seems to have slowed right down again. So for now I look normal. The effects of round 3 are yet to be determined I guess...

@dotty2 Thank you so much for sharing your experience of abemaciclib, it is hugely appreciated. So envious of your USA trip. I was supposed to be in California this summer but well, cancer had other plans for me. Oh the irony that my tissue is now there for oncotype DX.

The diarrhoea was a huge concern, so this is very encouraging. As it happens, I cannot digest pulses, nor a myriad of fibrous fruit and veg due to FODMAPS, so for once, this might actually be an advantage with regards to this treatment., more so as I have always been a bit on the constipated side! (How's that for TMI?!) I might well ask if I can start at a lower dose and work up as that seems more sensible rather than overloading one's system and having to cut down.

Even before post-surgery fatigue set in, have been suffering with exhaustion for months now, so hopefully, it won't get too much worse. Thankfully, am not working at present so can take time out and rest as much needed.

Am 48, and although my sentinel lymph node was clear, it's aggressive and multi-focal, three times larger than anticipated. Because of this, I have been told I do need radiotherapy after all, something I hoped to avoid by having a mastectomy. Currently waiting on the verdict re. chemo, but given the letter I received yesterday listed zometa as part of my plan, it leads me to think that I need to prepare myself.

Either way, and whatever happen, like you, I would rather throw everything at this now, so will try everything they suggest. I just want know as much now re. side effects add how they could effect my life, so I can make peace with it and prepare myself.

Thank you again,

On another note, it's a new thread - and it's Friday - happy Fry-day everyone! 🍟

Hi @doublec I had Zometa after BC1 starting in 2021. It’s given IV every six months with calcium and vitamin D tablets. It prevents osteoporosis and reduces the risk of bone metastases. The first one made me ache all over but the rest were okay. I finished them in March. BC2 hasn’t qualified me for any more thankfully. Your plan will depend on the Oncotype result probably.

I am back from my adventure on the moor. I stayed with my sculptor friend and we talked for hours. He is a lovely eccentric hippy type and just what I needed.
We walked round Foggintor quarry which was beautiful. My soul is soothed.

Have a lovely weekend folks.
Top

@TopOfTheCliff Thank you for sharing, it's very much appreciated.

Had my primary been 1mm larger, I wouldn't have qualified for oncotype DX. Using the Nottingham prognosis tool, my five year is only 37%. And this, coupled with the fact I'm an ashkenazi jew with a family history hell a lot of breast and pancreatic cancer, (the former of which killing my aunt and grandmother in their 30s and 40s respectively), plus a little ovarian cancer too, makes me think that my oncotype score won't be great due to to my genes. (Have undergone genetic testing too. Additionally, this isn't my first time, I had a near miss a decade ago and the primary was actually on the site of my previous lumpectomy). But, that's all by the by. If there's one thing I have learnt with cancer, not only my own, but both my parents' too, that one just can't predict anything. Either way, would rather prepare for the worst and be thrilled that I am wrong. Gosh, how I want nothing more than to be wrong!

My consultant is wonderful. However, she has a habit of omitting things when we talk, and then drip feeds information in a letter. I can't help but feel that she's included zometa because she knows I do my homework and research, and the next time we chat and she confirms something, I have questions ready to ask.

🤷🏻‍♀️

Anyway, and more importantly, that horse 😍

Chemo 18 went well, eventually! Very fast in and out today (I say fast, faster than it has been most weeks since they've been a steady, moochy kind of pace). Was bursting for the loo when they removed the cannula though.

Have to say I'm not a fan of being restricted to my left arm though! & I'm developing some fetching blue bruising where the first cannula went in.

Oh, yes, almost forgot! @LemonDrizzle10 I wore the lashes you sent today, and was complimented on my application! Not something I ever thought I'd be proud of but I'm taking the "win". Thank you again!

The girls want to do something to mark cheerleading for 18 weeks, tomorrow. Not sure what though. Any ideas?

I've just ordered my chief hand holder & appointment attender a thank you charm for her nomination bracelet too - it's actually a friendship knot, but it is meant as a thank you.

& I'm in charge of picking the venue for our next boozy get together at the end of half term. I have no idea where to suggest 🤔 puts too big thinking cap on

@TopOfTheCliff that view on your first photo looks like somewhere to get lost in your thoughts, all wrapped up, with a travel mug of tea 😊

Do any of you have any experience of Prolia and Ribocyclib? From previous conversations, I think they're where I'm headed next (will need a better system for remembering, they won't all fit in my morning cup so I take them while the kettle boils at this rate!)

That was a slightly chaotic post, reading back 🙈 My brain appears to be in fast-forward 🤣

That’s interesting about the antihistamine @SierraSapphire. I am a hayfever sufferer and it is spring in Australia so I take one almost daily. Have taken loratadine in the past.

@lucysmam congrats on getting through 18 rounds of chemo! Onwards and upwards!

Glad the wombats were appreciated!

Welcome @BreakfastClub80 so much to get your head around at the start. I’ve found this group so valuable for information and for knowing you aren’t alone.

I’m going ok. Enjoying exploring Hobart. Wallabies in the garden of the place we are staying. Hopefully will see some Tasmanian devils and will post a pic if I do.

Love the pics @TopOfTheCliff sounds like a healing place.

I’m hoping this trip sort of marks the divide between all the major treatments and surgery and the future me where I hopefully feel a bit better. Immunotherapy and a reconstruction to come - for which I am going into the public system. (Told the surgeon’s rooms - cost and travel time, rather than I wasn’t feeling the care from the surgeon.)

However it’s apparently thunderstorm asthma season in Melbourne again so that’s one to keep an eye on when we get back! (I’m a hypochondriac these days.)

Be lucky! (Pic is view of Hobart and the river Derwent).

I’ve got a relative who does the Sydney-Hobart yacht race every year after Christmas @FairyWren7 - I’d love to be in the race village in Hobart when they come in! He nearly won the handicap a couple of years ago but then the wind dropped in Storm Bay (ironic!) just at the mouth of the Derwent and they just sat there for ages. They then stay on to hike and the scenery looks amazing.

@lucysmam well done with the excellent application - those lashes went to the right home! Well done for getting through number 18!

Thanks for the new thread Lemon.

I had my PET scan yesterday to confirm recurrence. I won’t know the results until next Wednesday but I am sick with dread. Picturing it everywhere etc.

Thank you all for best wishes for first dose D. It's been ok or much better than expected.. But I suppose only d3 so let's see but feel like meds doing what they need to do and steroids keep me awake at night! self injection interrupted by lovely silly adolescent pooch..too interested in what was going down, but dodge but note to self, shut door he loves anything that sounds like it's opening! He has just found and polished off a packet of rosemary thins crackers he found..grrr was looking forward to a nibble

@lucysmam well done on 18 and lashes whoop

@TopOfTheCliff love pics , they looksvery Celtic and so soulfully fulfilling
@AllotmentTime glimmers re hair ( I'm grabbing all glimmers currently whilst can tomorrow is another day is it the roids?) sounds like cold capping helping.
I couldn't face extra time there at hospital
Am doing a 2 or 3 buzz cut with 12 year old DS who is developing dreads and he need to start again! So double win and he wants to be involved somehow.
@dotty2 thank you for speaking about veins as it has supported my get that port in now feeling at first session as have baked arms ( bakers but liked my first version too,) hope you're feeling ok today.

Horrible wait for you @AGreatUsername hope there’s nothing much to see. It’s so weird the thing about having cancer when you don’t even feel particularly ill.

Here’s some information about Loratidine @Remaker - shows an effect for various cancers, including breast (but not all in this particular study). I was advised (privately) to take it after my hysterectomy, something to do with cancer cells using histamines to travel around the body. There are loads of off/label drugs and supplements that have evidence in medical journals, but the NHS seems largely unaware of them https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7868613/#:~:text=Loratadine%20use%20was%20associated%20with,to%20a%20statistically%20significant%20degree.