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Ribociclib - Anyone??

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Re: Ribociclib - Anyone??

Hi,

I'm doing ok. I haven't been keeping count of my cycles, but I started in September 2019. 

After some Low blood count issues, i'm now on 400mg and Blood counts are much better. I had a scan on 30 June and the results were good. (I have mets on Thoracic spine and both hips). Oncologist told me cancer is stable. 

Wishing you all the best for your scan. 

 

 

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Re: Ribociclib - Anyone??

Hi Anrit,

 

Have spotted you on the Kisqali Facebook page. Its a great group, so glad I found it. Really helpful and I find it reassuring. Hope your doing ok. Dee.

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Re: Ribociclib - Anyone??

hi jellytot83 im also on ribociclib. Presently on my 3rd cycle . Doing ok with it.managing side effects well. Getting a ct scan next wk so will know when I get my results fro. That whether the treatment is effective for me.i have mets in both lungs, liver and nodes in my neck .hope you are doing ok?

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Re: Ribociclib - Anyone??

Hi Dee,

thank you so much for the revert.

Much appreciated

i have sent the request .

Regards

anrit_k 

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Re: Ribociclib - Anyone??

Hi,

Link for  Kisqali Friends/Support facebook page below.

https://www.facebook.com/groups/311795415918091/?ref=share

I've found it so helpful. 

All the best.

Dee.

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Re: Ribociclib - Anyone??

Also would appreciate if I can be given lead on Facebook group as want to be part it to learn more about this 

regards 

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Re: Ribociclib - Anyone??

Hello everybody, 

thsnk you for the thread , was searching for similar post. 

I was detected with  BC in 2009 ER PR + ve, had radical mastectomy , reconstruction ,8 cycles of chemo 25 cycles of radiation , faired well , was put on tamoxifen, which I managed pretty well without any serious side effects . 
There was relapse in feb 2020 with metastasis and cancer was detected in my spine , ribs collar bone .

I have started Ribociclib 600 mg since March 2020 .along with leteozale ,2.5 mg I also have to take Zolderonic Acid inj once in 4 weeks and luprodex once in 12 weeks 

I have sailed well with my white blood count improving in last report, however RBC has reduced , had severe stiffness in my neck as lesion was pain pressing the root never on cervical bone , was given a cycle of radiation and now after 5 months the pain and stiffness has reduced a lot 

but I am experiencing blisters on my arms and legs and skin around my ankles is also peeling .

any body has experienced the same and what is the solution , will appreciate responses for the same 

regards 
amrit_k 

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Re: Ribociclib - Anyone??

Hi Deanna,

So far so good for you too! I had 2 treatment delays of one week before they took me down to 400mg for cycle 5. Apparently no evidence that the lower dose changes outcomes xxx

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Re: Ribociclib - Anyone??

Oh thank you Anne52. I’ll look it up. 
That’s fantastic news re your results. 
Kisqali has reduced the tumours on my bones, and my tumour markers are down to 52 since being way over 100 a year ago. 
I’m having issues with white cell count low again in my week off Kisqali. Just a juggling act but I will get there. 
Thanks again and keep up the good work! 
Deanna. 

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Re: Ribociclib - Anyone??

Hello!

I joined the Kisqali (brand name for Ribociclib) closed face book group when I started taking It in November. It has worldwide members with lots of questions and info from others on the drug. The good news stories are really encouraging. I posted my own on Wednesday when I got my PET CT results and the mets in my liver are stable!

Anne x

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Re: Ribociclib - Anyone??

Hi jellytot83,

Oh boy was I so pleased to see your and read your post! I’ve been searching the internet for anyone taking ribociclib for any personal experiences. 

And reading the replies I’m feeling very relieved. I live in Brisbane Australia
I’ve been on Ribociclib since September 2019 after being diagnosed with secondary breast cancer on pelvis and spine in August 2019. 
I had 10 radiation treatments September 2019. I’m now taking ribociclib and exetemestane (Aromasin) along with Zoladex and Denosumab (Xgeva) injections every 28 days.  I’ve had 2 incidences of low white cell counts since then and I was originally on 3 tablets per day, (which made me very nauseous) but now on 2 tablets per day and I’m managing that ok. I’m in my week off at the moment and I’ve found that never to be pleasant, especially the first 3 to 4 days but it’s easier since taking the 2 tablets. 
My skin seems so much drier and I’ve got splotches all over my arms and legs and I’m very pale. I’ve always had pale skin but it’s paler now. I get outside daily to get some sun but don’t stay out too long. Bone pain increases a little in this week off too. 
My original diagnosis was in 2012,

IDC left breast, hormone receptive.

Secondary is hormone receptive too. 
2012 treatment was lumpectomy, SNB, six clclearance, 6 chemo treatments and 30 radiation treatments. Hormone therapy for 5 years. That finished in 2017. 
Then It came back in August 2019. Such a shock then, but doing ok now. I have my good and bad days emotionally. Hubby and kids keep me going. 
Hope your all doing ok too, take care. 
Deanna. 💖

 



First diagnosis was in 2012. 

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Re: Ribociclib - Anyone??

Hi Lynnie

Thank you for the good luck wishes. It's been a long journey for me as I was first diagnosed with BC in 2013 so seven years in total but still going strong. I believe in enjoying the now and I am sending positive vibes your way 😇

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Re: Ribociclib - Anyone??

Thank you Kinden 😁

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Re: Ribociclib - Anyone??

Hi Nicky

Nearly 2 years now and feeling great😃my hair is now so thin I have purchased a wig which looks fabulous. Side affects are quite mild for me a little nauseous when I take the tablets my new thing us to take them with fresh orange juice and then have a piece if fruit. I am good for the rest of the day then. I still work although because of this  coronavirus I am working from home.(the commutes a doddle) Stay well cheers Di

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Re: Ribociclib - Anyone??

Hi Kate

I live in Australia so not sure where you are. However the topper brand name is Jon Renau and yes real hair. If you Google the name they well all come up. 😀🥰

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Re: Ribociclib - Anyone??

Hi, Kinden X, wow what a long journey, you are a fighter! It sounds like you might be gaining ground now that is so asome. I love reading these storys, not only am I glad for you it gives me hope that we are all on the right track.Good luck I hope things  keep geting better.😀 

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Re: Ribociclib - Anyone??

Hi Deebs, really good to hear that you're doing so well so so long, it so helps those of us in your slip-stream. I have been in this boat for 6 months and recent CT scan showed that tumours in far away lymph nodes have all shrunk away (1 was 3cm!) and bone mets are stable, so not growing. I'm on fulvestrant and denosumab as well.

Hi Lynnie, my primary was 2008, had surgery, chemo, rads and tamoxifen for 10 years, and secondary came along a year later, so pretty similar to you in terms of disease. 

Good luck both

Kinden x

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Re: Ribociclib - Anyone??

Hi Deebs,

Could I ask you where you got your topper from please, and is it a real hair one? I have a friend who is really suffering with hair loss, not cancer related, who wants to get one.

Thank you,

Kate x

 

 

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Re: Ribociclib - Anyone??

That is great news, Deebs I am so glad to hear that you are doing well.Good luck to you also,it is good to have others to talk to who know what I am going through I wish none of us did,but together we can get threw this. hold Gods hand he will lead out of the darkness,be well and take care. 

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Re: Ribociclib - Anyone??

Hi Lynnie,

Still here and still progression free. Still on Ribociclib, letrozole and denosomab. So 22 months now...recent scan showed further reduction in right first rib😀 Disease is stable at the moment. Feeling well some joint stiffness and my hair is super thin. I have purchased a very expensive topper which looks fantastic lol. Still take my medication in the mornings before breakfast then eat half an hour later, this works for me with the mild nausea I feel when I have taken it. I feel confident that this combination is working well for me. I don't think about when it might stop working, so I focus on the now and feel more secure as time goes by and I continue to slowly improve. Good luck to you. I know everyone says stay strong and that can be hard sometimes, but try anyway and do whatever you can to be happy 😀

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Re: Ribociclib - Anyone??

I start tomarrow thank you for writing, I hope your blood count is back to normal, and you are feeling good.I am so scared it is good to find others who are taking this drug,I felt so alone.I had breast cancer in 2009. surgery chemo for 6 months and radiation for 6 weeks and all was good, until march of this year.I now have stage 4 bone cancer. My doctor is saying  to take for the rest of my life. So united we stand and we will get through this together. My thoughts and prayers are with all.

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Re: Ribociclib - Anyone??

Just had bloods again today white cells are back to normal, this time she explained it can be a usual adjustment period.  Back on ribo but my liver reading is borderline now so she's warned me I may need stop in a fortnight if they don't return to normal.  I've started drinking lemon water today as a little research online suggests it helps lower the ALT level and it can't do any harm to try.  Hoping for a good or better results for you too Rara.

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Re: Ribociclib - Anyone??

I have a nurse that comes from the drug company to do the preliminary ECGs and she said said that other patients have bounced back.

I also did some reading and it seems like it is very common but I always think I will be the one where it doesn’t work.  I was diagnosed straight to stage 4 so already beating the odds there!!

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Re: Ribociclib - Anyone??

I feel a little more reassured that your oncologist says this is normal body time adjustment, my team didn't even say that or how low they are.  My other half was fuming he said she had one foot under the table and the other out the door, they never seem to have the time talk to us.

I also posted on the nurses forum, the reply said although this is a worrying time no treatment again, the dosage can be adjusted or like someone mentioned another treatment found.  We try not to stress as we know this is bad for our bodies but boy do they make it hard sometimes. 

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Re: Ribociclib - Anyone??

I started cycle one but had to stop after two week as bloods were low like true2wish. 

They told me it is common and my system is getting used to the drug.  I am of course panicking like mad!

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Re: Ribociclib - Anyone??

I had to stop ribociclib after two weeks.  My bloods were just about okay but I was sick nearly every day an hour or so after taking the pills despite taking antisickness meds.    I had a couple of weeks off and then started on Abemaciclib.  If it isn't right for you there are other options.  They can also lower the dose.  Good luck with it xx

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Re: Ribociclib - Anyone??

Hi I've been on it for 3 cycles. First scan results were today. Mixed news. 2 spots have grown and 2 small ones still there. A small one from last time doesn't seem to be there anymore. All in liver. They have decided to keep me on it for 3 more months as it may be too early to make definite conclusions. Good luck! 


@jellytot83 wrote:

Desperately searching for someone else on ribociclib, is there anyone out there?

JT x


 

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Re: Ribociclib - Anyone??

Had second blood tests yesterday (every two weeks), so had ribo for one cycle but I have stop as my white blood cells count is low.  Has anyone else had this, is it just my system adjusting or a sign it's not right for me. 

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Re: Ribociclib - Anyone??

Hi Ndean

Tolerating very well. I take Ribociclib and letrozole in the mornings as I don't normally eat breakfast it does make me fell slightly nauseous so as soon as that happens I eat a piece of fruit usually a banana then I am good for the rest of the day. I have a very mild headache which I ignore and my hair has definately thinned out. I am still working and living life as always. My last scan showed a decrease in the 'hot spots in my ribs. I have metastatic BC to the bones. First diagnosed in 2013 lumpectomy, axilla clearance, chemo, radiotherapy, Tamoxifen. Could not tolerate Tamoxifen so stopped taking it. WAS very well for 5 years but when I went for my five year check up this showed a suspicious lymph node so back for more pokes and prods and scans which showed the cancer had metastasized to my bones ribs spine and pelvis. I had some pain in my ribs which disappeared once the ribociclib and letrozole kicked in 😁I am also on denosomab which is an injection every 4 weeks I have had no side effects from this. The only side effects so far is the hair really and some tiredness I have changed my job and cut down my hours because of this but mostly I am happy and healthy pain free and very positive...Good luck to you my advice would be don't read the possible side effects list lol xxx

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Re: Ribociclib - Anyone??

I've been on ribociclib for two weeks now and so far so good. I freaked out after reading leaflet but feel like my life is getting normal again. Have first blood test on Tuesday so will see how it is affecting my blood. 

On zoladex an letrozole too plus calcium an vitD. Glad hear 18mths gives me hope. 

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Re: Ribociclib - Anyone??

Hi Deebs

ive been searching for someone on Ribociclib and just found this thread.

how are you finding it, 18 months means that you are tolerating it ok?

I am on the 3rd week of my first cycle and am really feeling the side effects now. My head is really itching today - did your hair thin? I’ve read a bit about people taking with food, I’m going to do that tomorrow as I’ve been nauseous some days. And the fatigue is awful at times!

i basically need a positive story! 

Nicky x

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Re: Ribociclib - Anyone??

Been on Ribociclib and letrozole and denosomab for 18 months now

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Re: Ribociclib - Anyone??

I've just started on it in combination with Letrozole.  First BC in 1997, lumpectomy/radiation - second BC in 2002 - mastectomies - 2016 metastatic (lung/bones), 2018 omentum.  Xeloda (capecitibaine) working well in 2016 with Tamoxifen.  2018 further metastases in omentum - Xeloda not working - Tamoxifen replaced with Letrozole.  Ribociclib introduced this week.  Feeling very tired, heavy legs, aching, sleeping a great deal.  Responded to xeloda very well for 6 months - pity not working now but still taking Xeloda on top of ribociclib.  Hoping the side-effects get better as i'm wiped out when I take it.

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Re: Ribociclib - Anyone??

Hi Norrie ,there is a thread another section about this treatment there seem to be a few people on it .https://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Kisqali-ribociclib/td-p/120348...
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Re: Ribociclib - Anyone??

I started on Ribociclib yesterday. After about two hours I feel so heavy and can hardly move my legs so I have a lie down. I know it’s early days but so far feel ok. I also take Letrozole. I wondered if anyone has been told that they will be on it for years? My Oncologist says it’s a new wonder drug (I hope it is). Anyone else on it?

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Re: Ribociclib - Anyone??

Hello Cricklemoon,

 

This is my first post on this site - was looking for comments on Dexamethasone when I saw your post about ribociclib.  I am no longer on it because it stopped working.  Started in about March this year on 3 tablets and all was fine for a couple of months then my white cells were depleting so I dropped to two tablets, eventually dropping to one and having a break of a week or so in between.  I pinned way to much hope on them working for me and all the back and forth to the hospital for blood etc was really a strain as I have my head in the sand a bit about the whole situation and of course being there is a reminder.  Then in August or September the blood levels for my liver were too high so I had a break from ribociclib for 27 days, went up to the wire becasue 28 day break is the cut off but the levels went down enough to have it for another month. Had bone scans and CT scans in between and had the news about three weeks ago that my liver is now affected so I'm off the trial as it has not worked for me - it did occur to me that the ribociclib made the liver more prone to being affected but who knows? I signed up willingly for the trial.

Finally, to your point of feeling ill on it - I never really did - only at the time of taking them would I feel a bit queasy and as if I had a hang over - that sort of feeling but that was it. No other side effects. I would rather take things before bed but there were insistent that it had to be about 11am in the morning so I had to take them at work (I work in a secondary school and have got two children so am on the go the whole time).   Sorry to hear they are making things so difficult for you.  I haven't had taxol, was on letrozole with them but that was it, apart from adcal which I carried on taking after my last trial.  You say they knock you out, what do you actually feel like?

I've written a lot, may or not be anything that helps. Just a thought - I was wondering if you have asked if you can take them later? and have you reported that they make you feel so bad?

All the best, Liesa x

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Re: Ribociclib - Anyone??

I've just started my third cycle of ribociclib and letrozole on the compleement trial. The tablets really knock me out but I usually start feeling better after 6 or 7 hours. Most of day gone, still trying to decide whether to have tablets later and walk the dog/ try and do jobs first, or eariler and hope for some recovery time after. Varies day to day though. Week off much better.

Anyone else in similar place?

I had Taxol for nearly a year before starting this.

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Re: Ribociclib - Anyone??

Hi Jellytot.
I've recently started ribociclib and letrozole trial beginning of August. Feeling not too bad on it but my white blood cells have been hit hard. Are you on the trial? Is so, how are you feeling?
Red dragon x
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Re: Ribociclib - Anyone??

Bumping x

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Re: Ribociclib - Anyone??

Hi jellytot83,

 

I'm sorry to see you haven't received a response yet.

 

In the meantime you can always post any questions you have about ribociclib on our Ask our Nurses board or call our helpline on 0808 800 6000, who will be able to talk you through any questions you have and offer a friendly ear. 

 

Best wishes,

Bonita

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Ribociclib - Anyone??

Desperately searching for someone else on ribociclib, is there anyone out there?

JT x