Ribociclib/Kisqali with Letrozole - Any one on this combo?
Comments
-
Hi Kathylou
Welcome to the club no one wants to join, but so glad you found us and we were able to calm your nerves. We were all where you are now so know what it's like.
You got this and we're all here for you.
0 -
You got this, Kathylou!
0 -
Hi everyone,
Just wanted to share my story. I was diagnosed with “extensive” bone only mets in February this year. I’m on my 5th cycle of Kisqali+letrozole, with monthly zoladex because I’m premenopausal, and quarterly Zometa.
I just had my second PET scan, and it shows “dramatic improvements”!!!! I’m so pleased. I also have way less bone pain than I was having before, and my sore knee, which was the thing that led to diagnosis, is so much better.I’ve found this treatment to be easier than expected, and I hope to stay on it for a long time. I’ve worked full-time the whole time, no nausea or other side effects except for being exhausted sometimes. But exhaustion might just be from life and stress. Anyways, I’m just so grateful for this treatment.
0 -
Kkcita. Great news on your PET Scan! Did you start your combo at full 600 strength or a lower dose? I was hoping to start at the middle dose so the potential side effects won't be so bad....
0 -
Hi ladies
Just wanted to say thx once again. Whenever I feel sad or worried I just open up this site and read the positive feed back and know I will be ok... everyone enjoy the weekend
0 -
I’m on 600 mg. Side effects have been minimal for me. My counts are good, no neutropenia when they check me, so no dose adjustments needed so far
0 -
kkcita
Thx for your info. I will see how it goes for me. Hope I’m as lucky as the rest of you all are with the side effects. Take care
0 -
S3K5
I start my combo tomorrow. Been on Letrozole for 88 days now! Not too bad so far. Worried about side effects with the combo. I actually took time off work just to get use to it. Not really sure what to expect the first two weeks. Then it’s back to work..
0 -
Dear ladies please help!
I really hope everyone here is doing well. I saw some new entries since last time I was here!
As you all know Kisqali is now approved. I am in italy but i dont have legal rights to get medication here.
My family lives in the states and I am thinking to move there through a working Visa. I will be having UHC oxford insurance and I need the USA ladies to help me if this insruance covers this medication.
If you all have any info and do not feel comfortable talking about it here shot me a message.
Thank you very much in advance.
Best
Ida
0 -
Ok ladies its me again I just read all since I was last here!
Lauren it was a roller coaster of emotions with you girl! I am very happy there is no sign. I hope it continues like this!
Kath I really hope you are finding yourself well on the combo! I hope it works for you too!
To all the other ladies with great news I am very very happy for you all!
Meanwhile I am waiting for a couple test myself!
0 -
Hi to all,
Had another phone appointment with my onc who told me my TMs have gone up from around 30 to 57 since last test, and WC count is a bit low. She said to keep on with the combo, but she has booked me in for a CT and bone scan to see if anything is happening. Weird, I feel fantastic, and no symptoms, so hope it is just an anomaly, but I appreciate her thoroughness.
I’m not too fussed about it at this point. My markers have been up before, and the more I read from other women on this site, the more I realise there is a range of treatments out there, so I am taking a “wait and see” approach.
Ida, I hope everything works out for you, the COVID stuff just complicates everything, particularly in the States where it seems to be out of control.
KathyLou, how are you getting on? Hope you are not suffering too many side effects.
A big shout out to the rest of you, hoping you are well!
Cheers,
Jackie.0 -
Ida , your travelling residence and the way you manage to get your drugs keeps surprising me 😂😂
I hope someone gets you that info.
(On box 14 , but nothing to see here , next scans still inAugust)0 -
Hello out there! I’m just checking in. I’m on week two of my kisqali/Letrozole combo. So far so good. My side effects are minimal to date. Nights sweats and achy back sometimes. Oh and my hair is thinning... these are all things I can tolerate so far! Hope everyone of you are doing well. So nice to know you all are out there. Everyone stay strong and keep writing cause it sure helps.
Kath0 -
hi Kath
For me the hair thinning got a lot worse for a few months and then stabilised. Nobody even notices. Pic of my hair after 14 months on the combo.
My top tip : take care of your fingernails “before” they split and crumble away. As in ? keep them short and slap lots of varnish on. Took me a long time to get them presentable again , because I failed to do that. The strange thing about this : my toe nails are just fine.
stay alert x Jeb0 -
forza
Your hair looks great! Thx for the tips on fingernails. I will take care of mine today. They aren’t looking too good at the moment!.
Kathy
0 -
Hi ladies. I am not here so often, but I found great info on this site, so I just want share positive news. I am starting 12 cycle. My marker droped to 20. My neutrofils are bouncing to almost 1.5 after one week break. I was for months around 1. My hair stoped falling down and I feel great. I run 3 times a week, do nordic-walking (I am instructor), do yoga and pilates. So live a life of healthy person. I wish this to all of you. I will have mri scan next week, so I post update later.
Kkcita I was diagnosed same age with stage 1-39 and with mets 43 as you. I wish you and all of you the best and looong run on this great dru
0 -
Hello to Everyone
Just checking in. Hope everyone is doing well. Maaaki nice to hear you are doing so well! I just finished my first cycle. Feeling pretty good. I’m fortunate so far to not have many side effects. Hope it stays that way. Hoping I get a scan soon. Would like to know how things are going. My margins went from 27 to 18! I’m thinking that’s good. Everyone stay strong.
0 -
Audrey checking in here. Just started cycle 19 and had a PET/CT scan which remains NED. Hallelujah. I was really nervous because my tumor marker has increased since Dec from 48 to 192. It is higher than it was before I started Kisqali. My doc nor I can explain the increase.
I still feel really well except for my week off when I get really tired. I do mild exercise such as Tai chi and have an antioxidant shake of greens and fruits about every day. My hair is not falling out as much as it was and my nails are a bit stronger. I take 400 mgs plus letrozole.
Take care ladies and I wish you the best!
0 -
Maaaki, KathyLou and Aksmorrison, so glad to hear you are all doing well! Hope the rest of you are Ok too. I know many of you check in, even if you don’t post (I do the same thing)
Got my results back today... all good! CMs have dropped back down to 35. CT and bone scan didn’t show up anything new so this combo is still working for me💃🏻💃🏻💃🏻💃🏻
Jackie.
0 -
good to see lots of positive news !
Results today from 3 monthly scans yesterday ...
still “stable” 😃 That 1 stubborn bit of bone met really hanging in there. But I know where he lives so he’s quarantined !!! Neutrophils fairly low so getting some extra rest days , but next week starting cycle 15. People who’ve seen my writings before know that my tumor markers are pointless because they have never been abnormal so this time they were 15.2 , what can I say ?
Be well my Kisqali sisters
0 -
Hello to Everyone
Nice to read that you ladies are doing well. During my second cycle my liver enzymes decided to skyrocket so my oncologist has me taking a break from kisqali. It’s been about a week now. My second blood test shows the numbers are a bit better but I’m still holding off on the kisqali. I go in Tuesday for another test. Guess we’ll see then. It’s weird how I was scared to start the chemo and now I’m scared to not be on it. I’m sure we will get it all straightened out in time. I am feeling good so that’s something. Was told my marker numbers are still in the normal range so I’m happy for that. Everyone sounds good which makes me happy to hear. You all take care. I’ll check back in next week. Be strong and happy.
Kathy
0 -
hi kathy
i was exactly the same . Not wanting to start box 1 but then because my bloods were off and I got postponed a week for box 2 I wasn’t impressed either 😂😂
liver playing up ?! How strange. Is it in the side effects booklet ? I’m going to look that up.I have kidneys that sometimes give up but are always back to normal after an extra few days (that one is somewhere at the bottom on the side effects list)
Since last cycle I’m getting more dizzy spells , I should have told them but I want to stay on this combo seeing it works a lot better than I expected.
Wish I could see some of yous in real life for a chat and a laugh . Stay safe my Kisqali sisters ^
0 -
Hi Forza
Still waiting for my liver enzymes numbers to go down. My oncologist says not to worry. It’s one of the side effects. Going to get yet another blood test Monday. She says they are going down just not where she wants the numbers to be at yet. I’m wondering if she will lower my dose when I do go back on it.... other then that I’m feeling pretty good. Hope you and the rest of the kisqali gang are doing well.
Kathy
0 -
Hi Kathy
Hope the liver function is back to A*
If they were to lower your doseage, I wouldn’t stress about it. Quite a few people here still have great results on that. Me too.I got reduced from 600 to 400 after ??? 3 boxes where I consistently needed extra recovery time (mostly because of low neutrophils). Been on 400 ever since. Usually just pass the required blood count. I didn’t during corona but then they gave me the K anyway.
Those darn kidneys of mine. I feel like punching these smart doctors when they say : “do you drink enough ?” when they know it’s clearly the K !!Happy wearing facemasks so I can pull nasty faces at them 😇😇
hello everybody else here 😄 Hoping you all lead a great life still with lockdowns , sanitizers , staycations ... I’m ok with it all , at least I don’t have to invent reasons to not see people that annoy me. Looking forward to autumn !Stay safe ^^
0 -
Have felt soooo tired the last few days . Was hoping to feel on top of it before starting the next box of K tomorrow ... clearly not zzzzzz
Also , no XGeva to be found anywhere , not fussed , just means an extra trip to the doctor once they locate some
Not been the best of days.
Hope you are all keeping wel0 -
Forza, so sorry to hear you are fatigued. I usually feel a bit that way at the end of the K cycle. There have been 3 times along my journey I have gone off it for a week, just to have a break and reenergise. Maybe you could discuss that with your Onc. Hoping u feel better soon!
0 -
Forza, I feel tired on my off week too.(which I'm on now!) No idea why, as I thought I should feel energised! Once I sit down for the night after being in the go all day I'm always fighting to stay awake on the couch! I'm normally a night owl every other week!
Rest up & hope you feel better soon x
0 -
Hello to all you wonderful ladies. Sorry to hear about the tiredness Forza. Hope it’s better today. I was off kisqali for three long weeks. My liver numbers finally are better. Not perfect but better. My oncologist has me back on kisqali but only at 200mg. Sure hope that will be enough. Pretty nervous about it but at least I’m on something right! Hope you all are doing well. Again I just want you to know how much you all help me out with everything. It’s comforting on the hard days but mostly it’s just nice to talk with those of you that are going through this too... You all take care. I’ll check back in in a couple of days.
Kathy
0 -
thanks my Australian drug buddies ... that sounded better in my head ! They don’t call it a recovery week for no reason that’s for sure. Once I’m on day 2/3 of a new box I ‘ve perked up again. I suppose making new neutrophils is hard work on the body hence the 💤 💤 I’ve given in to it and had 2 afternoon naps. I’m an insomniac so have rules on not napping during the day but that’s gone out the window now.
I really shouldn’t complain about side effects. I’ve found some Kisqali users on Instagram and some really do get every possible side effect and more 😳😳 I‘m still on an icecream and cake diet , why not.
Also reporting again on the hair loss. I thought it stopped thinning last month but now I’m sure I stopped shedding (box 16). My hair is looking perfectly normal to strangers. The awkward nails are still awkward ... but I have hope.
Waving at Kathy !! Hope you get the best possible outcome on 200
^-0 -
Hey there everyone. Well I’ve been on kisqali 200mg for ten days now and my liver enzymes are getting higher again.. Damn! One more blood test this Monday and we shall see. My doc says we will probably have to change combos. Not happy about that because then I can’t stay on this site. I would miss talking with you ladies. It makes me sad. All the other numbers are great though so I’m pleased about that. I’ll keep you all up to date.
Hi to Forza and Kanga_Roo!
0
