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Ribociclib Stories

17 REPLIES 17
Timmycat
Member

Re: Ribociclib Stories

Hi joannen66, 

Thank you for your kind reply,  yes it was a ct scan full body. I too was really worried. I wish you all the best and good news for Monday. This drug seems to be really good, it's been a year for me now, how long have you been on it?

Let me know how you get on, sending hugs 💖 xx

joannen66
Member

Re: Ribociclib Stories

Hi Timmycat

Thats great news about your scan results, was it CT scan you had, I get my results on Monday,  feeling a little anxious at the moment xx

So pleased you got good news

XX 

Secondarysister2
Member

Re: Ribociclib Stories

Hi Timmycat

That is fabulous news!!!!! So so pleased for you!!! 😃 these meds can do amazing things!!

Thank you for letting me know! I really appreciate it. Its made me feel more hopeful for my mums results in Feb!    

Wishing you all the best! Xxx

Timmycat
Member

Re: Ribociclib Stories

Hi secondarysister,

As promised, I'd let you know how the scan went. I've just now received the results of my scan. 'Stable' I was so worried all week, but this shows that the drugs are working so far, so good news.

Apparently I do have a gall bladder problem, so I'm to have an ultrasound scan, but my onc said not to worry about this. Really good to know that these drugs do make a difference and give us hope.

Wishing your mum all the best, and all you lovely ladies too,  love to you all 💘  xx

joannen66
Member

Re: Ribociclib Stories

Hi Secondarysister2

i was diagnosed straight to secondary, mine is also ER positive and her2 negative, My primary tumour is in the right breast and I have a patch on pelvis and also in lymph nodes in both axilla.

im just hoping and praying that the ribociclib and letrozole are working.

i will let you know, my scan results are on the 25th so not to much longer to wait. 

Wishing your Mum all the best. X

Secondarysister2
Member

Re: Ribociclib Stories

Hi Joannen66

 

My mum’s primary was back in 2010 and secondary diagnosis September 2020. I think she has “pepper pot” spread. So she has mets in her skull, spine, one rib on the right side, pelvis and right femur bone. All her mets are on the right hand side which I find rather strange as it was her left breast originally!! Her femur bone was quite bad, so they have put a pin in it to stabilise and used medical cement to the lumbar area of her spine. It sounds horrific when I type it out, but....

She feels fantastic and goes about her days the way she did before. A part from the occasional ache she is great. She is tolerating the meds well too... they have lowered the dose of the Ribociclib  due to low white blood cells. 

This forum has given me so much hope and strength !!! It allows me to be stronger for her. My mum doesn’t use social media much, so I feed a lot of the information I get from here back to her. We don’t know anyone else with secondary breast cancer to talk to or relate to.

My mum is oestrogen positive, PR and HER2 negative. It’s also lobular which is more rare. 
What type of BC do you have and where?

Good luck for your scan results!!! Please let us know how you get on ! 😊 My mums first scan is next week!! I’m so anxious about it. 

Xxx

joannen66
Member

Re: Ribociclib Stories

Hi Secondarysister2

Do you mind me asking when your mum was diagnosed and where she has secondaries, has she had any scans yet?

She is lucky to have someone like you, who asks all the questions and you sound a really positive person.

i had my first scan last week and get results on 25th.

Trying to stay positive but finding it hard at the moment.

Sending love to your mum x

 

 

Secondarysister2
Member

Re: Ribociclib Stories

Thank you so much for your kind words !

I think Ribociclib is a very new drug, so it may have been a trial drug as little as a year ago. I think it has become standard first line therapy for estrogen positive secondary breast cancer now. May be this is why there are few stories with regards to it.

Good luck for your scan results!! xx Wishing you all the very best ! xx I would be grateful if you let me know how you get along with it as it seems my mum is in a very similar situation to yourself ❤️ Thank you xxx

Timmycat
Member

Re: Ribociclib Stories

Hi, my secondaries are in my ribs, pelvis and I think spine, although I don't get as much information as you all seem to. I haven't had a scan for 8 months, but I'm due to have one on Saturday so I'll ask for results. I thought your mum was on the same drug as me which is Kisqali (also called ribociclib). This is the trial I'm in. As far as I know the secondaries are stable at the moment, I don't know if they've reduced. I will definitely ask my onc a lot of questions,  he's phoning me on the 19th Jan so after that I'll let you know what he says.

I say spine because early on I had horrific pain in that area as well as ribs and hips.

So sorry that her trial won't benefit her, I must say I didn't know about blood trials. Thinking of you and your mum, sending hugs ❤ xx

Secondarysister2
Member

Re: Ribociclib Stories

Hi Timmycat,

Where are your secondaries ? Have they remained stable or reduced at all? 

My mum is on a trail, but it won’t benefit her as such. They are just taking more bloods as part of research into finding more ways of doing less scans or something. She is on no trail drugs or anything.

Thanks for your help! Xxx

Timmycat
Member

Re: Ribociclib Stories

Hi Secondarysister2, I've been on ribociclib for a year now and have been mostly ok, I haven't had to stop it unlike your poor mum. I'm also on Letrozole but not Donosumab. So very sorry to hear of her horrible side effects, I think with all these drugs there's always side effects, so do hope she recovers from the low platelets/low blood count. One question, is she on a trial?

Sending hugs to her and you xx

 

joannen66
Member

Re: Ribociclib Stories

I was diagnosed straight to secondaries in August was such a shock, I dint have a physical lump it was a sore under breast, so main tumour is on bra line and I have involvement in lymph nodes in both axilla and a low grade patch on pelvis. I feel fine in myself just mentally hard to get head around it, Thank you for your kind words. Xx

Secondarysister2
Member

Re: Ribociclib Stories

Hi Joanne66

I have everything crossed for you that your scans are stable. Sending all the positive vibes your way! Let me know how you get on with them. Do you mind me asking where are your secondaries? 

All the best! Xxx

joannen66
Member

Re: Ribociclib Stories

Hi there

im also on ribociclib, letrozole and zoladex, I’ve just started my 4th round, my neuts have been low the past 2 round but oncologist happy for me to proceed as long as they are above 1, last ones were 1.3 she has reassured me not to worry and if they were to be below 1 which they havent yet she would reduce dose from 600mg to 400mg. I don’t have any side effects other than hot flushes got my 1st scan next week since starting treatment and I will be honest I’m so scared. Just hoping and praying medication is working.

 

Secondarysister2
Member

Re: Ribociclib Stories

Thank you both for your replies!

That’s brilliant news about your cancer markers Ruby2016! I think I slightly panicked when they took her off the treatment for a second time. I’m just so desperate for it all to work and go smoothly, but I guess there will be little bumps and big bumps along the road in this journey! 
read beef liver helps get white blood cells up, so I’m going to get her some today even if it is vile stuff. 

All the best for the New Year !! Xxx

catokitty
Member

Re: Ribociclib Stories

Hi, I was started on Ribociclib in September 2019 but had to stop due to vomiting and low bloods after three weeks.  I was switched to Abemaciclib, the same family of drugs, and have had not problems apart from stomach upsets which are standard on this drug and have been stable since.   They are powerful drugs and the list of side effects terrified me but all drugs have side effects. I am on Fulvestrant and denosumab as well.   Hope things settle down for you mum and wishing you all the best for the New Year.  

Ruby2016
Member

Re: Ribociclib Stories

Hi SecondarySister2,

Hopefully someone will come forward soon with their own experience of Ribociclib. You can enter the word next to the magnifying glass icon which is to the right of ‘This board’ and see previous posts on Ribociclib.

I have been on Palbociclib which is in the same ‘family’ of meds as Ribociclib. Re the side effects, it is a scary and daunting list of side effects but on a previous post, someone wisely said that for aspirin or paracetamol, over the counter tablets, there’s a list of side effects. 

I’ve been on Palbociclib for a year now and have had my treatment delayed by an extra week for at least a third of my cycles due to low blood count.   It is a side effect of the treatment and just seems to affect some people more than others.  My oncologist is pleased with my CT results which have all come back as ‘stable’ and he’s told me that my cancer makers are now within normal range.

I do hope that your mum is able to continue with Ribociclib and she also gets encouraging scan results.

Best wishes.

XXX

Secondarysister2
Member

Ribociclib Stories

Hi there 🙋‍♀️ 

I feel like I ask too many questions on this forum, I don’t want to clog it with questions, but it’s the only place I know to draw information from others personal experiences!!

My mum is taking Ribociclib (since Sept) and this is the 2nd time in 3 months they have stopped it due to low platelets/ low blood count. I got reading the list of side effects and it actually scared me that my mum is taking this stuff at all...

Who else is on Ribociclib? How long have you taken it for? Any problems or success stories please ? My mum also takes Letrozole and Denosumab. Thank you !!! 

Wishing everyone a safe and peaceful holidays!! Xx