Ribociclib/Kisqali with Letrozole - Any one on this combo?
Comments
-
I started Faslodex and Zoladex 20 January, had a lumbar decompression surgery 25 January and Kisqali 9 February on 600 mg dose. I had a horrible mix of SE & recovering from surgery at the same time. I really struggled at first. I also had xgeva on a monthly basis.
My first PET scan after my MBC diagnosis was on 1 April and it showed almost complete remission - for me this is a magic combo and I felt more eager to continue on this treatment plan when I saw the results in a short period of time. I spoke with my oncologist about SE and I’m working with a psychologist, a nutritionist, a physiotherapist and personal trainer to make a better quality of life. It’s a lot of work and a lot of money, but I hope it’s worth investing in my life right now.
unfortunately after 4 cycles - last May - my heart started feeling weird and I had to lower my Kisqali dose to 400mg. My July PET scan showed more regression so I’m still on this dose and I’m praying October scan turns out well too. In July, my oncologist agreed to take xgeva every 3 months instead of each month - I was worried from its SE on my teeth/jaw.
I hope this helps.
My love and wishes for healing and long good life to everyone here on this thread.
0 -
have been reading all the comments and appreciate them…it helps. The Onc reduced the Kisqali med to 1 pill and am tolerating well. Those taking Fasalodex (however you spell it) how bad is the injection in butt area? Had blood work yesterday and neutrophils were better than on Ibrance. Waiting on the cancer count from bloodwork and hope it has gone down some. I am kinda like the person in another comment…try to not to concentrate on all of this too much or I would probably go crazy lol. Bless each of you in this journey.
0 -
my team warm up the injections before giving them. The consistency is like maple syrup. However, after they warm it up and inject you barely feel it. They inject in the fleshy part on each side.
1 -
Someone else on the faslodex thread suggested warming each phial under your arms to help heat it. It's a very viscous fluid. It helps if the nurse injects it slowly. In my experience the nurses vary considerably in their expertise re injecting it. Another tip was to stand and bend over the chair arm, taking the weight off the foot on the side being injected and to turn that foot inwards. Sometimes if it's injected too quickly it goes into a lump and you'll need to massage it and go for a walk to get the fluid moving. It also helps to put some heated towels or hot water bottle near the lumps of faslodex on your butt!
I had a gastroscopy yesterday as onc wanted an endoscopic evaluation following my latest CT. I don't have a duodenal polyp according to Gastroenterologist. He took a biopsy from 2nd part of duedenum and random gastric biopsies for further tests. My mind is running to worst possible scenarios. Pancreatic cancer?
0 -
Hi, All
I am on Kisqali/Letrozole and Prolia since June/July. Initial diagnoses was ILC in 2008 stage IIIB. Relapsed in May 2024. Stage IV now. The combination works so far (Kisqali 600 mg). One met is no longer detectable on the CT, the other one reduced to 11mm. But on my round 3 I have some allergic reaction (very mild itching). Will it go away or become worse in time? Any one had this SE?
0 -
@laguna24 I’m sorry about your relapse, and I hope you have the support that you need. I also had mild itching during the first couple of cycles of Kisqali but it went away. SE gets milder in general by time from my experience.
I wish you all the best Kisqali can offer ❤️0 -
@radiation_cinderella Thank you for your response. Was your creatinine elevated at the time when you had itching? Sometimes this is a sign of kidneys malfunction. While 600mg dose is working for my mets I hate to think I will have to decrease it to save my kidneys. But I guess this is a part of the game: to find acceptable balance to survive. Will have my next blood work soon and check out my creatinine
0 -
@laguna24 strangely my tumor markers and blood work are quite normal, but unfortunately I had to reduce to 400mg for QT prolongation, and even got to 200mg for a week before going back up to 400mg again. So it’s my heart that is not so happy about the max dose. Best of luck with your tests 🙏🏽
1 -
Just read an article on dose reduction. Apparently it works fine and OS is not compromised by the combination of 400mg and letrozole. There are specific instructions from Novartis on going back and forth between the dosage to ensure your heart safety.
Wishing you the best0 -
Hi
The last place I wanted to be. DX stage 2 bc in left breast 2018. Had a wide excision and radiotherapy. My Oncotype score came back as not needing chemo and not a very high chance of recurrence, was on Tamoxifen for 6 years and was just starting to get some confidence back. Then in New Year I had a nasty dose of COVID, with a horrible cough,2 lots of antibiotics, tested for asthma, given an inhaler and after several months started to feel better,cough clearing up, but GP said, let’s just be sure and ordered a CT scan. The horror when it came back showing areas of concern in left lung and it was originally thought it was primary lung cancer. After more scans,PET and biopsy, it was found to be my original breast cancer that had metastasised.
I spent every day in tears, huge anxiety, had to have sleeping pills and Diazepam. After a horrible wait of about a month my oncologist said I would be treated with letrozole and Ribociclib 600. Scared stiff the whole of first cycle and had another Ct scan. Saw my oncologist only two weeks ago and everything stable, but had minor mets in my right hip, which he said would not affect my outcome. He was pleased with how I’m coping with treatment. I’ve had a mild skin rash and aches in joints from Letrozole.
But just as I was feeling a little better and being given hope by onco and bcnurse, saying you can get many years of good quality life on this treatment, earlier today, I had a call from the hospital saying my creatine (?) levels had been creeping up with each blood test and I have to stop the Ribociclib for a week, go for more blood tests on Monday and I’m scared stiff again. Has anybody else here had this? I’m so worried that I’ll have to stop treatment before I’ve hardly got started. I’m also cross that this wasn’t mentioned when I saw my oncologist only two weeks ago, and I’ve lost count of the blood tests I’ve had, so why wasn’t it picked up earlier and maybe nipped in the bud. I’ve been told to drink a lot more as it could be dehydration and also I was told it was fine to take Ibuprofen for aches in my joints. The nurse today told me I shouldn’t be taking Nurofen as that can interfere with creatine too.
I’m sorry, this is my first post and I’ve gone on. I’ve lurked fora couple of weeks and you all sound such a lovely, knowledgeable group of people,I thought I’d sign up and I’m hoping I can get some reassurance please.
Love to you all x
0 -
Hi @rafiki3 , and welcome to the club nobody wants to join.
Side effects can creep up over time and taking a temporary break from meds is (in my experience) a typical step when drug toxicity becomes a potential concern. It well could be that in earlier tests creatinine level was still acceptable and this is why it was not brought up to you by your MO.
I hope that a break and measures recommended (hydration, staying away from certain medications that can affect kidney function) will address the issue. If not, perhaps a dose adjustment will do the trick. A change to another CDk4/6 might also be an option as they have slightly different toxicity profiles. As you can see from my signature,I had to stop Verzenio due to liver toxicity and my MO wants to give Kisqali (Ribociclib) a try in case I tolerate it better.
Sending you strength!1 -
Hi Lacombattante
Thank you so much for your reply. I’ve calmed down a bit and am waiting for a call from my bc nurse to discuss it with her as she works with my oncologist.
I am drinking a lot more (and peeing a lot more!) and have stopped the Nurofen and am really hoping that will really help. Now I’m drinking more, it’s become really obvious how little I was drinking previously, so I’m keeping my fingers crossed that bloods are better next week. You are probably right about why my onco didn’t say anything before but they’ve obviously been monitoring it and it’s tipped over into a level they want to do something about. I was so upset and angry yesterday, that I now feel bad about doubting and getting cross with my oncologist, as he’s really on the ball, a lovely man and very thorough, so hopefully acting on the side of caution.
I’m sorry you had to stop Verzenio and hope you do well on Kisqali. What a horrible roller coaster of emotions this journey is. Sending much strength and good wishes to you too and thank you once again.
1 -
I am going on the lower dose of Kisqali now after three episodes of low ANC/neutrophil count. I'm hoping the 400mg works just fine, since right now I feel really good and my tumor markers have been steadily dropping even within normal range. I hate to change something that's working, but I feel ok about it since it seems many folks do fine on the lower dose.
1 -
@tougholdcrow I was reduced to 400 mg for low neutrophils. I still saw good results on the following PET Scan. I was put back up to 600 mg once my neutrophils came back up and have been on 600 mg since then. I do not think you will see any difference on the 400 dosage. Wishing you all the best.
1 -
Hi tougholdcrow
Thank you so much for replying, sorry I’m late to reply, blooming appointments!
My bloods have come back with a big reduction in creatinine numbere, I wasn’t drinking enough fluids apparently. Now back on the Ribociclib 600 again and keeping everything crossed. That’s great news about your pet scan, it’s still only my second cycle so I really hope I have the success that so many ladies on here are having on this treatment. My bcn said also the dodges aren’t that big a thing, the Letrozole does so much of the work, and they start everyone on 600 so they’ve got wiggle room as they seee these things so often especially in the early days.
Thank you for your reassurance and sending best wishes for continued success and all the best.
0 -
Hi dah925
I won’t repeat myself, as I replied to tougholdcrow above.
Thank you for your reply and reassurance. Bloods are all good now and big reduction in creatinine so am back on 600 dose.
Hope everything stays stable this month, I’m an emotional wreck. Great news that your neutrophils are back to normal and everything is going well. Sending best wishes to you.
0 -
Sending you All lots of hugs. We are routing for things to stay stable, and sending all good energy your way @dah925
1 -
@dah925 Thanks so much for the reassurance. I don't think 600mg is in the cards for me anymore, but it seems people have gotten many years on the lower dose of the sister drug Ibrance, so knock on wood. It's all a crapshoot anyway.
@rafiki3 My creatinine numbers have occasionally gone high but no one has ever made anything of it. The numbers are always nerve-wracking, but I always think, my body is not just numbers
1 -
Thanks to all for the good thoughts. Wishing you all the best. We got this ladies!
1 -
@tougholdcrow, thinking of you. You are right lots of members have had great success with the lower dose. It is great that you are feeling so well and I understand the desire to not change a working combination. You are right about it being a crapshoot.
0 -
I was just notified by my pharmacy that Kisqali should now be refrigerated until it is delivered to patients. Once received we can store at room temperature for two months. Check with your pharmacies to ensure they follow the new guidelines.
0 -
hi all !
thanks for all your comments since.still the same , for people that remember me : I still haven’t had a follow up to my follow up petscan (thyroid and lymph nodes both armpits lit up and a spot somewhere close to my shoulder).
So against medical advice I paused the Kisqali for 2 months over summer to go on holiday.
I restarted now and already finished 1 cycle. Now I can differentiate which side effects are Kisqali and which are the forced menopause etc Life was good without K even though I tolerate it well.Had my flu jab yesterday and my Covid shot is next week. Still haven’t had Covid , I must be the only person in the world 😂
Where’s @kanga_roo ?!
I’ve nothing of interest to say really , just reading through these pages x
1 -
@forza Nice to hear from you and congratulations on walking the Camino de Santiago. I have always wanted to do that. 500 miles! Wow! A real spiritual quest. All good thoughts for staying stable.
1 -
@forza, the Camino de Santiago - wow - people tell me that it is the most amazing experience. I, also have not had COVID (of any strain). I count myself very lucky. @kanga_roo was declared NED early in the year. I think she is enjoying her life. In everybody's pockets with support and gentle hugs to those who need a little tenderness.
1 -
@tougholdcrow and malleemiss
Thanks !! I’m feeling a bit flat after the Camino , post Camino blues is a thing. For soul searching you need to suffer , a cruise doesn’t give you that clear head and soul imo. I cried a lot , something I haven’t really done in +5 years.
Us in Europe have it easier to go to and from obviously , we already have the euros , our phones just work and our health insurance tends to stretch within the EU.
good to hear Kangaroo is doing ok , I think of her regularly because she’s been on the same drugs longer.0 -
Hi all, just wondering does anyone know how long people have stayed on kisqali for or what is the minimum time kisqali has worked? I've been on it since April, 600mg initially, but had to reduce to 400mg because of low neutrophils. My cancer markers had been going down from 210 (!) to 41 but they're rising again now - 42 last month and 46 yesterday. I'm stressing about what's next. Also since I've been on kisqali I've been losing weight, nearly 18 lbs, and I've been full of wind. I feel my stomache is bubbling away constantly. I can't find this as a side effect anywhere but my onc. doesn't seem to be concerned. Does anyone know what is the next treatment after kisqali?
Sorry about all the questions but I know so little about the new drugs.
0 -
@aiobheann
I am still on Kisqali/Letrozole since June, but had my blood work done yesterday and from Kisqali I developed anemia, while from Letrozole spike in glucose. As for CT scan one small met in liver shows retraction. But I feel something in my lower abdomen around sigmoid (right below belly button). I feel gasses, some rumbling, constant movement back and forth. I have another small met in my appendix and want to get rid of this part of my body. I think this is the one that is to be blamed. Will see my doc on the 12th to discuss
0 -
@aoibheann The clinical trials (Monaleesa, Natalee) with Kisqali can show you the average PFS depending on things like where the cancer spread, whether it's recurrent or de novo, etc.
0 -
update..now on Kisqali 200 tolerating well..had a progression to my shoulder and at the beginning in 2016 had a met in lung with fluid…they decided not to do anything on the lung issue…my new ONC has decided to use radiation on the shoulder and lung Mets…just started will let you know if it worked…everyone stay positive and have a great holiday
1
