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New treatments

13 REPLIES 13
Community Champion

Re: New treatments

Hugs kinden

I know what it’s like as my Dad died about 14 months ago, very unexpectedly and so we have been through the emotions that the day of the funeral bring. Happy and sad. Well done for delivering the eulogy, I just wrote the one for my Dad and let the celebrant deliver it. All 6 grandchildren had written their own poem which combined all their fond memories of their Poppa, that did bring a tear to the eye as ut was all about his mannerisms. However it was in all a lovely celebration of his life so I do hope you got great comfort  from all the family and friends who came to your Mums funeral.

Take care

Nicky x

 

ps on a separate not to Sals, so sorry you’re struggling, not what you need at all, hope things pick up soon xx

Member

Re: New treatments

Good morning kinden .

 

So glad everything went well for you yesterday .😘  I'm not currently having a fun time I started my 2nd cycle of Ribo Tuesday and been in hospital since Wednesday night very server rash and temp 😱😵😵 not knowing if I'm coming or going it's like having really bad sun tan and prickly heat and in turn sent all my levels deranged yet again so after my first up just after Christmas this is another step back 😩😩😩😩 I hate this feeling not knowing what's happening and all the waiting . I will keep you posted my lovely you take it steady and get some rest talk soon 😘 xxxx💓

Member

Re: New treatments

Thanks Nicky, and hi Sal,

 

Well, Mum's funeral was yesterday and it went as well as could be expected. There was an excellent turnout, and my eulogy was well received - I choked up a couple of times but got through it, there was so much love in the room. The celebrant said that he had never heard a better eulogy, in terms of content and how I delivered it, which was nice , although he probably says that to everyone. My 14 year old daughter sang beautifully and my siblings read well, so all in all we did Mum proud and the sun even shone as we laid her to rest.

Hope all are having a good day today

Kinden xx

Highlighted
Community Champion

Re: New treatments

Hi ladies

You seem to have a nice little support group going on here between you! I only just saw this thread and have read back on it and seen what an awful time you have both had recently. With treatments and with what the ‘normal’ world throws at us all. Sending hugs to both of you and especially to Kinden who so recently lost her Mum - I hope the funeral, and eulogy, goes as well as it all can on Friday.

Take care

Nicky x

Member

Re: New treatments

Oh my goodness Sal, what a whirlwind of a time you've had in the last 18 months.

Hope you're having a better week this week

Kinden xx

Member

Re: New treatments

O my gosh I'm so so sorry for the loss of your wonderful mum 😭😭😭 I lost both my mum and dad with in 6 months of each other mum August 2018 again due to secondary cancer and dad 30th of Jan last year so had no time to think reflect and take it all in before my news . I will be thinking of you always massive hugs being sent your way take care 😘🥰💓💓💓 X X X X 

Member

Re: New treatments

Oh my word Sal, what a horrid time you've had, hope you get all your treatment this coming week and you feel better xx

So know where you're coming from re kids, it's all so tough for all of us.

My Mum died between Christmas and New year, funeral is Friday. Have a 12 hour journey to get there and am giving the eulogy, so hoping for some energy to do that, have written it already. 

Scan showed mets in sternum too. Next CT will tell me if the treatment is working xx

Love and hugs, and same, rant, cry scream whenever you need to xx

Member

Re: New treatments

Evening lovely , sorry your having a rough time hope your feeling better soon.  I'm not having a good one I went to clinic new year's eve and my Mets had grown a bit and levels were up he sent me home with oramorph at this point I didn't need it and thought that was wired by Thursday night I was in so such pain and then admitted on Friday morning last week. It was so painful I honestly thought that's it for me. I'm on steroids now for another week but these are making me so hungry and my mood is shocking. I'm back on Monday for my ECG and bloods then clinic Tuesday for my next Zoladex injection and next lot of Ribociclib. I'm not feeling me at all I hate not feeling in control of things . My energy levels  seem low and that's tough when you got kids and back to normal after Christmas . Fingers crossed we both start to feel some sort of normal soon big hugs to you here for crys rants and raves anytime . 🥰😍💗😘

Member

Re: New treatments

How' s the roller coaster treating you Sal?

i am on 1st week of cycle 3 of Ribociclib, with fulvestrant and denosumab injected on Monday. Knocked me for 6 a bit, and by Wednesday morning I had bronchitis, so was exhausted. Penicillin seems to be dealing with that, but I am still a bit weak, and very tired. I didn't go to work for 3 days this week, not like me at all. 

Hope you're ok

Kinden x

Member

Re: New treatments

Hi kinden

Yes same as me 600mg i have no other symptoms so all good so far . My hair has just started growing back after my chemo so hopefully won't mess with it too much . I've just got hospital appointments I have to have my bloods and ECG done Monday ready for Tuesdays appointment . I had a CT scan last Thursday so again little scared on the results . My Mets are in my liver I was told back in June it's advanced and chemo was started within a week . I was diagnosed with my primary new year's eve 2015 just after the birth of my Alfie . I feel so angry that's is come back but so soon and with no symptoms or warning !!! I hope you get some good news on your results . Take care and thank you for talking to me I've felt kind of alone in all this feels like a none stop rollercoaster and I'm stuck on it and can't do any thing . Big hugs 

 

Sal X X X X 

Member

Re: New treatments

Hi Sal,

I am on 600mg a day. I did have a bit of a problem with blurred vision and some unexplained vaginal spotting (not enough to call it bleeding) but both resolved on their own after a few days, and the hair thinning seems also to have stopped as my brush is no longer full after I have used it!

I had a nurse come to see me every 2 weeks for the first 6 weeks on Ribociclib as it is so new that it is still subject to monitoring. She did an ECG and blood tests, all ok so far though my neuts are predictably low (this is an expected side effect). She came to see me at work, which I think was a new experience for her.

My mets are in my lymph nodes, all over throughout my chest and abdomen and groin area. Where are yours, if you don't mind sharing? Had a nuclear bone scan on 23rd as looks like it is in my sternum too, await results.

all the best

Kinden x

Member

Re: New treatments

Hi kinden

 

Hope your having a lovely Christmas crazy one this end with a 9 and a 4 year old 😁😁 . I'm on week 2 and a half of my first cycle all seems ok no major side effect, just I've noticed a slight change in my heart rate I wear a fit bit and I've noticed the changes since I started taking them. I phoned the hospital and the oncology nurse wasn't to concerned !!!! I have my next appointment on new years eve so will mention it there. I was told to take them at night as they can make you sleepy !! Who dosage are you on I'm on 600mg . I seem fine otherwise ..

Thanks for replying

 

Sal xxx

Member

Re: New treatments

Hi Sal,

I am on Ribociclib (and also Fulverstrant and Denosumab). I am on week 2 of cycle 2 and so far only side effects seem to be a little thinning of my hair and nausea which is easily dealt with by Cyclizine. I find that it is better to take the Ribociclib after breakfast. I am able to work full time and do everything I usually do. Have teenagers so that means quite a lot of taxiing!

Merry Christmas to you  Sal and to everyone 

Kinden xx

Member

New treatments

Morning all I was wondering if any of you are on the following combo

Ribociclib ,Anastrozole, Zoladex I've been on them a week now what are your experiences/ side effects on them .

 

Merry Christmas to you all too 🎄

 

Thanks 

Sal