Ribociclib/Kisqali with Letrozole - Any one on this combo?
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Great news about that liver. If it’s a better combo , don’t look back 😉
Do let us know what magical drug they might put you on.
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Hey everyone. Well I’m still plugging along on 200mg. Liver counts are ever so slowly going down. Had my Xgeva shot on Friday. Anyone out there ever get a stomach ache a few days later? Mine started hurting Monday night. Thought maybe it was the shot. I’m on my week off of kisqali and feel not too terrific. Hopefully tomorrow will be better.
All you ladies take care. Hope everyone is hangin in there.
Kathy 🌻
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Monthly update. My labs today were perfect , well , everything not cancer related was perfect. My Ca is 14.5 and just scraped through on the neutrophils (0.9). So tomorrow starting box 17 (400 mg). This recovery week was not much fun as usual but looking forward to some better weeks. And I’m moving house this weekend !!!
Oncology staff here starting to panic because of the Covid that’s gone completely out of control again. Last month our politicians thought , let’s just go for group immunity. Today big panic !! The numbers don’t lie. So soon we’re back under a million restrictions. Anybody else hate Sweden ?!??
oh Kathy !!!! You have an oversensitive liver !! Not good. I’ve no side effects from Xgeva. I think there is a thread somewhere on this site exclusively about Xgeva.
I did get stomach ache from those calcium tablets in the evening so now I take those mid day and no more aches.Take care of yourself and eachother ^^ Jenn
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Hey everyone hope all's well.
Kathy, Xgeva for me I'm just a little stiffer than usual but no tummy aches. Great to hear you're still on this combo.
Forza, great news about your results. Don't go there re restrictions, We've been in stage 4 lockdown since July 1st! 5km radius curfews, you name it it's restricted next review next week, numbers coming down but who knows what our premier will be doing! I've been working from home since March! My son is finally going back to school on Monday!
On a bright note I had a bone scan and chest CT last Friday so ventured out to the hospital (haven't been there for months) phone consults are great!
So results today and all good TMs down to 33 (lowest ever) and all bloods fine. Some areas show NED. Lung still shows slight infection but stable. Onc says whilst I'm on this combo looks like this is here to stay.
My off tablets week this week and well...It's been a little off alright! I had a lymphadema flare in My right arm. Felt like sunburn. Got myself some strong antibiotics/ 5 day course done and back on the mend! Damn LE!
Emotional rollercoaster of lows and highs but I'll take these results for another month.
I guess this combo is working so well with minimal side effects, that sometimes I even wonder if I'm really stage 4!
Box #22(600mg) on Monday...I guess me feeling down and having scanxiety is all about thinking.... when does the lucky streak end....does anyone feel that way?
I guess we take each day as it comes and hope for many months even years more on this combo!
Hugs to all and hope everyone is doing ok
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Hi Girls
Sounds like Traii and Forza you two are doing good. I finally got my liver counts down and all other numbers are looking good !!! I’m staying on kisqali (200mg) and Letrozole combo for now. So glad about that. My new issue this week and last week is awful pain around lower back and hip area and sometimes upper leg and butt cheek. Seems to move around. Seeing a specialist today. Thinking it could be neuropathy. Ugh. Just need something to take the pain away during the day so I can go to work. Any ideas ladies? Love hearing from you all. Gives me hope and you girls are uplifting to say the least .
Kathy
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yay for those liver counts Kathy.
I too get pain that comes and goes in the areas you mentioned. I perservere but oncologist suggested paracetamol to help ease pain. I'm so use to it as I had bad sciatica pain prior to diagnosis. She did also mention at the very beginning of starting Kisqali that it sometimes triggers pain. This may be happening to you. Hope you get more info from your specialist today. Good luck!
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hi Kathylou and Traii (and everyone)
I too get severe pain in those areas and my oncologist referred me to the palliative care and support team who hate to see any of us in pain. I do yoga, targeted exercise, hydrotherapy, mindulness and meditation. I also have to take endone most days. I hate taking it but it makes life bearable. My cancer has been stable for over three years but I understand your emotional roller coaster Traii. Its like we are waiting for the day it progresses sometimes.
So be kind to yourselves and stay safe and well
Love
Anni
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Anni, that's wonderful to hear 3 years being stable. It gives all of us hope. Thank you for sharing. Xx
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Hello to Anni and Traii and all you wonderful ladies. Finally got my pain under control with Gabapentin. Hate having to take more pills but it’s working. Started out with 300mgs a day and I’m down to 200mgs a day now. One more week left then I have my week off. Looking forward to a glass of wine or two!!! I guess my scan turned out ok. Oncologist hadn’t looked at it too much so hopefully this Friday I can get more info. Although she did say it looked good.... Gotour first snow fall here in Alaska today. Everything looks so clean and bright. You all take care and I’ll check back in after my appointment on Friday.
Kathy 🌻
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Waving
sorry I’ve been busy with the move. And I stopped working years ago (been written off because of my MS) so I’m so not an organised person.
Just wanted to add my TMs have never been bad. Hate having scanxiety, it’s such s stupid emotion that for me gets worse every 3 months. Already counting down 2 more weeks before the next lot.
Great to hear those words stable in this thread. Wish I could give you all a hug.
New corona restrictions here : cafes are closed again for 4 weeks and we are now under curfew from midnight to 5 am .... I’m in bed then , who comes up with these things ??
^Jen
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Stay safe Jen. Covid has changed everything hasn’t it. Are you feeling extra anxious with all that’s happening. You always appear to be able to stay upbeat. I finally admitted to myself that my anxiety levels have really crept up to the point where they are affecting my quality of life. All things considered I should be fine but I can’t seem to get my act together. My lovely oncologist Natasha has me booked me in to see the psychologist next week. She will also do some scans and review all my meds just to cover all bases about possible causes. She is very thorough and worried about me.
Is anyone else feeling more anxious, even depressed in these trying times. I feel like we are in limbo, waiting for things to go back to normal.
I’m sorry to be sounding like such a sad sack and I hope I haven’t made any of you feel extra sad with my whinge (it’s helped me to have an offload - thanks)
Love
Annie
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I know it sounds weird Annie, but COVID actually took my mind off my own situation for a while. It made me anxious in a different kind of a way, and I felt a bonding with everyone else wearing masks, using sanitisers etc Given most of us have compromised immune systems it was strangely reassuring to see so many people using good hiegene habits. I am lucky, living in south Australia where we haven't had any new cases for about a month. I've found a nice little game called villagers and heroes, that is cross platform (I play it on my pc and iPad) that allows me to escape when I need to.
I must admit, I have had a couple of days when I have felt quite depressed... dissolved into tears and had a good howl, but I think that can be cathartic too!Jen hope your move was a success!
Cath, so glad to hear you have your pain under control and wonderful that so many of us are stable.Sending gentle hugs out to you all
Jackie
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Hello my friends. I am sad to say that my lIver counts are back up so I am being taken of this combo.... I will be starting Verzenio / Letrozole in a week! I know nothing about this new combo except that it causes bad diarrhea!!! Yikes. I sure will miss talking with you ladies. You've all helped lift my spirits and gave me hope. Wish I could stay here but I shall be strong and move along. I wish you all the best and please stay happy and safe out there.....
Maybe it would be ok to check in every now and again. Take care
Kathy 🌷
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Kathy, we need you to come back and tell us how you are getting on! I’m thinking all of us will move on to other treatments eventually, so you are our pioneer 👍
I read the Verzenio thread, and I know they have ways to treat the diarrhoea and also get excellent results on that combo.
Wishing you all the best with new combo!
Jackie
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Hi Kathy, I agree with Jackie. Please stay with us and give us regular updates. It’s not just the physical issues we discuss here but the psychological and emotional issues will be similar surely and we need each other for that. I don’t post very often but I get so much comfort reading the comments and discussions that arise. You have a lot to offer us and hopefully we can still offer you something useful.
In Australia this weekend we have had a festival of football and in my household that means the tv has been on non stop with analysis and discussions about the best plays and teams and footballers. Not my idea of entertainment but I allow it once a year. Hope the rest of you have done something more interesting!
And the week is a good one
Annie
xx
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also (sorry for so many posts) Thank you Jackie for your kind words in response to my virtual tears to you all. You gave me a different perspective and it was very comforting, perceptive and empathetic.
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Kathy you make sure you keep coming here to check in and let us know how you're doing. We girls love a chat and vent! Wishing you all the best on the new combo & hope it works it's magic with minimal side effects! Xx
Annie, I have my moments of feeling depressed but my 10 year old snaps me out of it! But when it's all quiet I sit and think of these past months and time wasted doing nothing exciting but being in lock down I think times passing me by and I wanted to do things, get away etc but then I think well it's made me slow down and just enjoy the quiet times without the hectic rushing around etc. It's all a bit crazy and emotional. We've been in lockdown here since 1st July so I'm a little nuttier than usual 😜 curfews been lifted but no where to go anyway!! I guess this shall pass too and we can go onto a 'covid normal'! OH and it's footy all round in this VIC household! My son loves it and plays for our local team! ( well not this year if course!)
Jen hope the move went well and you're settling in nicely. We'll all be in your pocket for your scans
Hope everyone else is good that we haven't heard of in a while
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Dear all,
Mom was doing well on the combo... But unfortunately covid was so rampant in our city that even with all the precautions she got tested positive. She dint have fever or cough, but her sodium level crashed, for which we took her to the hospital, her lung ct showed the infection, she tested back positive. She was in the icu for a couple of weeks requiring a good amount of oxygen, but luckily dint need intubation. Anyway the virus is off her now and she has been shifted to the ward and is requiring oxygen.
She is still requiring minimum oxygen. And is very weak but in good spirits,. She is off ribociclib for now but is still taking the letrozole. Will have to see when she is good enough to go back on the combo.
I dont know whether the low sodium was related to ribo, or covid but better keep a look out for it.
For now she is taking one day at a time and improving slowly
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wishing your mum a speedy recovery holiwoman glad she's in good spirits and hope she's back on this combo when she feels better.
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Holiwoman, hope your mum is recovering and feeling better.
I saw my Onc yesterday and my cancer count has dropped from 39 to 22! Bloods etc are good, so I’m feeling positive heading toward Xmas. Won’t be doing any tests now till mid January.
Hope you are all doing well,
Jackie
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oh Kathy , Vernezio might be the one for you !!! I wouldn’t take much notice of any side effects before you get them. In my hospital I seem to be the only one on Kisqali that doesn’t vomit or feels sick. But then I get double vision that nobody else has. Small reference group I know. Post us a line here , don’t disappear.
The mom there ... I’m impressed and it gives me hope. Strong woman to get through covid on K !!!
It has happened, we’re back in lockdown 2 but the people aren’t very compliant. Seeing most police are off sick or in quarantine themselves, they can’t enforce it. Belgium has the highest infection rate per capita in Europe and our hospitals are over capacity right now. Some patients are taken over the border to Germany where they had available beds. But now Germany is spiking too.
My scans happened as planned. Ultrasound of boobs normal but I had someone new who had no idea why I was even there. Results of nuclear bone scan tomorrow. I’m a bit stressed because 4 women were having an animated discussion over my bone scan whilst I laid parked on the thing. Then 1 came out to tell me that the doctor decided the extra ct wasn’t necessary. This could be very good or very bad news. I hope it’s good news and they give me 3 boxes of K at once tomorrow !!! I have plans on hibernating
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Yes I’ve moved away from city living to a village and I now have a garden !!! How many bird feeders can 1 person buy
Very much enjoying the country life so far. I was hoping to integrate here and enrolled in some social groups but seeing everything got cancelled after 1 go and officially I’m a bubble of 1 so allowed only 2 close contacts but not simultaneously!!! I now can’t practise/ learn my french.
I’m in my recovery week (an extended one because of doctors on autumn holidays) and it was a very ok week this time. Strange for me but not complaining , must be that fresh air.
Strength and resilience to all my stage 4 sisters xx0 -
scan results 👍👍👍 Big relief. Long day.
Got 3 months worth of K in one visit , I call that a result. I lost count but I think that would be cycle 18-19-20
Bone + liver scan planned.
side note : I can stretch out the XGeva injections. Always thought 4 weekly was a bit much. Because my 1 stubborn bone met is not doing too much damage ?!? Don’t quote me on the phrasing of that. So I can stab myself with the zoladex and take my time to find someone to do these Xgeva shots.
Can concentrate on living life again for a couple of months 🍀🍀0 -
yay great news Kanga & Forza
Glad to year you have your 3 months of meds and can relax until next lot of scans. My next lot should be after Christmas too 😁
I chat with my oncologist today my blood work looks good waiting on TMs this morning.
We are finally out of lock down here. 0 cases 5 days in a row. Still wearing masks around. Can't wait to l go shopping today on my day off! Its been wayyyy too long ! Still working from home for now and loving it!
Hope everyone is Well and that's why not many are popping in. Would love to know how Ida is going and all the other wonderful woman are
Take care xx
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Yea I’ve thought about Ida too 💭
I’m lucky : I hate shopping 😂😂😂0 -
Hi ladies, I am sorry to say, but I will be leaving you. PetCT in October showed two new lesions on the vertebra TH12 and TH9. My original is TH10 (there the activity is decreased). Mri confirmed the new lesion as mets. All other organs clean. I wil have SBRT radiation and than will see, doing some liquid biopsy. May be MO will put me on abemaciclib to give CdK4-6 a try it is stronger and continuous not breaks like with kisqali. We shall see. It came so fast, in summer, I had everything ok. May kisqali works for you long time
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hi Bratislava 😉
I’m so sorry to hear you have to go through those bone mets radiation again.
Is that Verzenio ? Stay strong , you shall beat this again , you’ve done it before , you can again
^^ Jen0 -
I've been on Kisqali 1yr. In last couple of months have noticed hair thinning. Guess it will progress?
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Hi Maaaki
, sorry to hear you've found 2 new lesions, fingers crossed your new treatment will kill those nasties and is gentle for you. Come on and say hi and let us know how you're going xHi Nopkin, My hair has slowly stopped falling out now but is much thinner then when I began in Feb 2019. Not sure if it's the Kisqali or letrozole or combo of both!
Hey Forza, I asked my onc if I could go quarterly on the Xgeva and she said let's do every 2 months starting Jan! I'll take that 😁 My friend who also is Stage 4, has the horrible ONJ that you can get from this jab and I hear her pain 😪 mind you she was only on it for 6 months but was undergoing dental treatment so not sure if it caused it🤷♀️ hope country life is treating you well! Enjoy the fresh air x
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thanks Traii , love love loving the countryside !!! I can already tell this move will add years to me 👍 I’m thinking 2 monthly might be perfect so I can stab myself with the zoladex myself (I’m right handed) on the right and doctor can combine the xgeva and zoladex on the left ... it’s a plan.
Nopink : I’m on 1,5 years now. Half my hair started falling out steadily but it stabilised after a year. Definitely stabilised !!! As I’ve written here before , I had so much hair to start with that nobody notices. My main problems on that level are my fingernails . They are determined to split splice crumble and fall out. I’d rather lose more hair instead. I’m a crafty type person so need my fingernails 😌
stay strong ^0 -
Dear All,
Thanks for wishes, my mom is back home, needs supplemental oxygen now and then but improving. Her spirit is crazy great. Covid is seriously nuts. There is small group for Ribo people in India. Couple of them also had covid.. and they also recovered.. both of them had milder symptoms...So that's promising news.
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