Desperately searching for someone else on ribociclib, is there anyone out there?
JT x
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
Bumping x
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
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?
Hi Norrie ,there is a thread another section about this treatment there seem to be a few people on it .forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Kisqali-ribociclib/td-p/1203481/jump-to/first-unread-message
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.
Been on Ribociclib and letrozole and denosomab for 18 months now
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.
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!
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.
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?
Hi,
This was posted a while ago so time has moved on so…I’m on Ribociclib just saying hello jellytot83 x
I’m on ribociclib. I have been on it for several months, maybe a year. (Sorry, my sense of time is not good, lol)
I’m doing ok. A couple of times my neutrophils have been low so I’ve taken an extra week off the meds.
But generally doing ok.
I became tired on three tablets so my dose has been dropped to two a day.
How are you doing on it ?
Suzanne