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New treatments

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Re: New treatments

This is brilliant news just what we all need in these horrid times . I had a bad reaction to ribo but seem to be ok with the one I'm on and seeing good positive results makes things easier to cope with 💓💓👍 xxxx

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Re: New treatments

Morning kinden 

I'm still getting my treatment in not allowed to go to the hospital I have my bloods done at my local GP then phone consultation . All seems to be good my tumor marker has come right down👍 I have a ct scan booked for the 28th of May . I have been out the house 3 times in 6 weeks hard work with two young boys but we coping . Hope your getting some answers regarding appointments . What hospital you under seems some are doing things different to others . Stay safe 💓 big hugs 

Sal xxx

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Re: New treatments

Thanks Rosie. Glad to hear your WBC has improved, this Ribociclib does seem to be good stuff

Kinden xx

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Re: New treatments

Hey Kinden that’s brilliant news for you!!

 I bet that is welcomed news for you in these horrible bleak times we are all having, I’m really pleased for you, I’m praying Fulvestrant and Ribociclib has the same effect on the little blitters invading me!!!

Had bloods done on Monday and yesterday onc called to say wbc is fine again now so back on the Ribociclib today!

J x

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Re: New treatments

Hi Sal and Rosie,

Hope your bloods are behaving better Rosie. 

As for me, I had a phonecall last Thursday offering me a CT on Friday morning. I checked and the machine had not been used on Covid or Covid suspected patients, so I went for it. Hospital was virtually deserted and super clean, lots of PPE so I felt confident to have the scan. I now have the results and my lymph gland tumours can't be seen, they have shrunk away, so I just have the mets in my sternum active now, they are described as 'stable', so not growing, which is such great news and I feel so pleased.

All the best to everyone

Kinden x

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Re: New treatments

Hi ladies, feeling a little fed up today.

just had my telephone consultation with onc, bloods low again, that is with a dose reduction to 400mg too (Ribociclib) got to go back next week to get them repeated. Also given scan results (first one since starting this new treatment) slight increase in size but only by about 2mm she didn’t seem overly concerned because I’ve not been on this treatment very long plus the hiccups with the low WBC and having to keep stopping them.

She did say if it carries on dropping we might have to look at chemo which scares the life out of me!!

Has anyone else had a similar experience on Fulvestrant and Ribociclib??

J x

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Re: New treatments

Hi Sal,

i'm ok, glad you seem to be too? Are you still getting your treatment during lockdown?

i'm on the 6th cycle of Ribociclib, fulvestrant and denosumab. There is some doubt as to whether I am getting the denosumab next time but I think I will get the others. People seem to have different experiences depending on where they live, hope you get yours safely.

Was due to have a CT scan ahead of my next onc appt, but haven't had a letter even about it. chased up and was told that I am in "vetting" with the radiology dept, to see whether they are going to offer it to me or not. This afternoon my onc appt, due to be next Monday, has been cancelled, and I got the shielding letter today too, so am having a cancer-centric day, which I try not to do between appointments.

Am a bit freaked out by the shielding letter. It's a bit late now, and I have been normal with my teenagers and husband, not planning on changing now. 

How are you doing?

Kinden xx

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Re: New treatments

Morning kinden

How you doing with treatment and this horrid lockdown? Hope your well 💕 big hugs xxxxx

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Re: New treatments

Hi Sal,

lovely to hear from you, so good to hear that you're doing better. Hope you got good results from your scan xx

I am in 5th month of treatment now and think I'm doing ok still, feel anxious sometimes and don't think I have mentally processed it yet. People keep asking when my treatment finishes, they don't know it's what it is.

oh well, enjoying the sunshine and daffodils today and keeping on smiling

All the best,

Kinden xx

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Re: New treatments

Hi Kinden 

 

Sorry I didn't reply to your last message must have missed it . I'm doing ok things seem to have settled my levels are stable i started my 2nd cycle last week one week left then my week off . I have my Ct scan on Monday 😣 .I didn't react this time thank goodness just one side effect really sore hands and feet but I can cope with that it's just nice to feel like me again . How you doing with treatment ? X X X 

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Re: New treatments

How are you doing Sal?

Kinden xx

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Re: New treatments

Hi Sal,

i am feeling good as my CT scan shows that my tumours have shrunk, some by up to 50%, that's after 3 cycles of treatment, am delighted. Still can't breathe properly, seems to be some doubt as to cause now, as embolism should have broken up as I've been on the blood thinning injections for 3 months too. Lymph node going into my lung is affected , but it has reduced from 2.5cm to 1.5cm, so breathing should be easier. Am having an echocardiogram to see if that can answer the mystery, but for the moment I am just enjoying the fact that the treatment is having such a positive effect.

 

So hope that your new regime is suiting you and doing good for you too xx

big hugs xx

Kinden x

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Re: New treatments

Morning kinden 

 

how are you feeling? So far so good temp issue last Thursday night but things seem to have settled for now fingers crossed I'm ok with this back next week for zoldex injection . big hugs

 

Sal xxxx

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Re: New treatments

How are you doing on the chemo tabs Sal?

Kinden xx

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Re: New treatments

Hi Kinden 

How you feeling today? Clinic didn't go as I wanted 😫 my levels are all over at the moment think with the little growth from November to Christmas and the reaction and delay in treatment it's not helped. I'm due to start chemo tablets tomorrow 5 in the morning and 5 at night . Just hope I can tolerate it after my last two reactions I'm a little scared and very anxious. Still early days and we going to have set back I suppose until we find something that is right for us . I will keep you posted. Big hugs to you too X 💓😘

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Re: New treatments

Hi Sal,

How frustrating, but at least you know what caused you to be so poorly. Big hugs xx

How did you get on today at the clinic?

Kinden xx

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Re: New treatments

Hi Kinden

Glad your feeling good 💓😘

I'm feeling lots better still on steroids anti biotics and anti histamine! Back in clinic Tuesday it's was a Ribociclib induced reaction 😫😫😫 so no more of that for me. Hopefully next week I can get started on something that will be a little kinder to me, I hate all these set backs. I just want start treatment and get on with life 😏🤞🏻🤞🏻 for Tuesday. I will keep you posted big hugs 💓🥰

 

Lots of love

Sal X xx

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Re: New treatments

How are you doing Sal?

I'm pretty good this week x

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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

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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💓

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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

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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

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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

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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 

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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

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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 . 🥰😍💗😘

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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

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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 

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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

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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

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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

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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