Ribociclib/Kisqali with Letrozole - Any one on this combo?
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Seems like a lifetime ago. I remember finding this group here.
Then they had to do it all over again under ct in the correct hip without any sedation , it took over half hour and I can still feel it now. When they say hip , it’s that bone in my 🍑 right cheek I sit on . So how would radiation beams to it help current pain ?? *thinking out loud* Surely radiotherapy is not painless , and I’m sitting on it.
no , just no 😄
I’m desperate for that Covid vaccine , but just in case : I bought a car today !!!! No more crowded trains with kids oozing virus 👍👍👍
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You make me laugh Forza...you do whats best for you😁 i had rads to my hip and i sat ok lol
Congrats on the new car. We brought a new car after we got out of 6 months lockdown, went from a sports lowered wagon with a nice big boot to a SUV !! But i do love my new girl Tiggy😜
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Dear All,
Hope you all are doing good. Just updating my mothers update. Last time I checked in my mother was just recovering from covid still on oxygen and was off a couple of months from ribo. She is now off oxygen and has been taking 400 mg for the last two months and generally getting back to normal. Last weekend she had pet scan and other tests. its either stable or slightly regressed but not much metabolic activity. Some scarring in lungs as expected left over from covid. Her liver, kindey and blood counts are good.
She is on cycle 21 now back on normal dose. Her spirits are extremely high for someone fighting her second cancer and surviving two hellish weeks in ICU. She is baking every possible dish and back on her morning walks.
Congrats on the car , hope you get your vaccine soon. My mothers antibodies are crazy high so she should be ok till she is deemed fit to receive it. Meanwhile India is back to pre covid craziness only with masks. Better to stick with the doctor you are comfortable with, I think distance can be worked out, lot of women have to travel countries for treatment... Meanhile this group is great for soothing any panic attacks...
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Traii 🙄🙄 im going from a bicycle to a Volkswagen Polo ... very boring car
Holliwoman : your mother is an amazing example to us all !!! Such an uplifting story. Yes I’d rather stay in my first hospital because of familiarity and language. But those trains really messed with my Covid anxiety. Soon I will have a car so maybe 😑However : anybody ???? I was never operated and for a couple of weeks my naughty breast is hurting a lot. Just sat doing nothing it hurts. Onco after bone scans 2 weeks ago waived it away as nerve pains .
But looking at it closely ... my nipple circle ?! has changed shape again and now I’m really worried. Same presentation and pain as day 1 of this cancer nightmare. Should I phone and try to get an ultrasound in my old / current hospital ?? It’s hours by train (for now still) . Is it psychological ? Since the possible new onco wants to cut etcet .... I have a gynae appt booked in my new hospital in March. I was happy to be classed as stable and be left in peace for 3 months , I can’t keep that fake smile on my face.Oh 🤬🤬🤬
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Holiwoman, so glad to hear your mum is doing so well, she sounds like a real champion!
Forza, I’m sure having a car will make you feel more confident and safe about travel and will provide you with more options. Can you get a second opinion on your situation. I don’t understand why your new specialist would want to operate if there hasn’t been any new progression! Ask them what their rationale is, and if you are not happy, seek a second opinion... phone your old specialist and ask them what they think.
I sometimes get pain in my breast and my Onc told me it was probably from my biopsy site. I am into my 2nd off kisqali week and still feel tired. I need to get out and get some exercise and sunshine, but motivation is low!Hope everyone is keeping well,
Cheers,
Jacki
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hi! I’m recently diagnosed and want to make sure I’m understanding these stats right. Does this mean 5 years overallsurvival on Ribociclib, plus x years on second and third line treatments etc? Or 5 years total on ribociclib and then any other subsequent treatments.
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holliwoman glad to hear your mum is doing well after all shes just been through.
Forza, i get sharp pains often and have no idea why but scans showing nothing new there.
Kanga hope you get that motivation this week. Not sure about SA but Melbournes weather is making lots of us exhausted one minute feels like winter and 19 and this week in the 30s! All the best x
Lesannray, sorry to hear you've been recently diagnosed. I'm personally not one for stats. So perhaps someone else can chime in with info.
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lessanray ... hello
pretty sure Novartis means 5 years mean survival on their drugs only. Surely once the cancer conquers Kisqali , we just change the Kisqali. But I see your problem. I don’t quite understand any stats since covid. You can prove anything with a stat. But what Traii says : don’t listen to them , we’re all unique. I’m taking away from it we’re all just thriving longer , we are the group that will change terminal into chronic.
thanks Kanga. As always the voice of reason. I bugged my old oncology and having an ultrasound of the offensive breast tomorrow. Scanxiety is real , it worsens instead of improves. Yep , bike , trains , tram still ... and there’s snow and ice in our hemisphere ⛄️PS where is the Slovakian girl ? I miss he
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thinking of you Forza. You got this girl. I hate scanxiety 🤦♀️
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Hi Forza, I think Maaaki moved to the abemaciclib page when her treatment changed.
Glad you are getting an ultrasound done, hopefully it will give you some peace of mind. I’ve finally got some energy back, day 12 off the kisqali and ready to go again!
Traii, crazy weather here too! Monday I was wearing tracky dacks and today I’m in shorts! Tomorrow is supposed to get up to 40C, then thunder and rain and back down to the 20s! At the other end of the scale I see Europe is going through a freeze!
Hope you are all safe and well, wherever you live!.
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Kanga : hasn’t been above freezing where I live for a week now. Which is good , I love wearing my knitting.
1) the emergency ultrasound of my sore breast didn’t show anything different from the one in November. Yes , they can see where the original lump was but that’s it.
Fantastic news !!! I nearly fainted I was so relieved. I phoned my mother to please please please look after my cats (she told me before she’s not having them). In my head I was choosing a coffin. I’ve never had so much stress since all this started.
In 3 weeks I’m having another breast ultrasound, it was already planned and because I’m in hospital anyway I’m having it anyway.They think 🙄 it’s a breast muscle infection deep down in said breast. I had no idea my tits have muscles. I should take anti-inflammatories. I’ll just sit it out.
2) old/recent onco ... even he was concerned because I never complain about any niggles . Went through the treatment plan the new hospital is offering . He stands by earlier decisions made. No lumpectomy because it was in my thyroid , bones and lymphatic system already. He thinks the primary tumor sending out more cancer cells is a theory from the past. Ovaries out vs shots : my decision. Radiotherapy bone mets : my decision. He’d only do it when they grow or when they hurt badly.
3) my possibly new onco with the harsher treatment plan is Slovakian , that’s why I’d liked to talk to Maaki
have a great weekend all^Jennifer
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so happy for you Forza great news and happy you're mind is at ease.
Laughing at your mum not looking after the cats... she knew you'd get a good outcome!
You have choices to make and only you can decide what's best for you.
We are in a 5 day lockdown! We did 6months last year but the weather was crap now its nice we are locked un until Thursday hoping its only 5 days! All because hotel quarantine 🤬
Maybe send a PM to Maaki shes active U see on the Ibrance thread as she moved on from Kisqali
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we’ve gone full circle with lockdowns , it’s almost a year now. We are a transit country so no way to stop flights or close borders. And a stubborn population so we’re never getting rid of this virus.
Yes I found Maaaki via pm.
My mother !!!
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Forza... I was holding my breath waiting for your news... I feel I can breathe easy for you again!
Traii, not to get too politic, but I think it’s time Morrison and the LNP took some responsibility for international travellers infecting our local population and sending us all into lockdown again... meanwhile, nobody here has been vaccinated! Up to the states to clean the mess up yet again!
Hope you all happy and well,
Cheers,
Jackie
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thanks Kanga , hoping to never stress like that again .
Here they vaccinate 100 people a day 🤷🏻♀️ No vaccine deliveries 🙄🙄
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Hello,
Anyone on a Kisqali and exemestane combo? I'm just finishing my first cycle--after 8 rounds of paclitaxel was getting to be too much for me, my onco and I decided to try this oral chemo. Noticing my hair thinning, which is extra upsetting as I cold-capped with the paclitaxel expressly because I did not want to lose hair a third time.
Thank you
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Hi guin8,
Sorry to hear you are having hair thinning problems. All aromatise treatments seem to have a similar affect because they reduce our hormones leading to an “aging” affect. Most of us have experienced hair loss initially, and then it seems to slow down.. I haven’t heard of anyone on this combo who has lost all of their hair.
Initially my hair loss seemed so rapid, I bought a wig.. but then it slowed down, and is just ‘thin’ now. Many of us have other side effects you may notice too, dry splitting nails, and joint pain. On the up side, it does knock the cancer on the head, and slow down progress.
Keep in touch here, and let us know how you are going. I’m sure other members have got tips and ideas on how to cope on this combo.
Kindest regards,
Jackie
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Thank you Jackie, that's comforting to hear 😊
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My combo is Kisqali & fluvestrant, but I seem to be alone, so thought I'd pose my ? to this group. I'm so lethargic mid afternoon that I crawl in bed for hours. Then I'm depressed rest of the day because I did nothing. Initially I took Kisqali at bedtime, but switched to noon as my stomach seemed upset all night. When do you take it and have you experimented with times to find what worked for you?
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nopink2019 i tried all sorts of times mid afternoon felt too tired to do anything, morning before work I'd want to sleep at my desk🤦♀️ and the best for me was at night around 10:30pm. I make sure i have a dry biscuit just something small as i feel like it takes away a weird kind of tummy feeling/nausea🤷♀️ Maybe try putting something in your tummy and see if it makes you feel better if you'd prefer taking at night.
Guin8 I second Kanga, I had more thinning at the start and it's really slowed down. I'm much thinner but not too noticable to others
Hope everyone is doing ok xx
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Heya Nopkin,
I think we all have to find the best time for us to take our meds. I too have experimented but have found the best time for me is around 7.30pm which is aboutan hour after my dinner time.
I’m a bit of an insomniac, so I usually settle down around midnight. I also find the best time for me to get things done is before mid-day, when I have more energy.
I recently had an extra week off the kisqali, and it has really energised me again... I do this about every 6mths. I’m not sure what dosage you are on, but many of us have gone from 600mg to 400mg with great results.
Whenever I complain about getting tired, my Onc always reminds me that kisqali is a very intense chemo therapy. With that, I think I’m much happier taking a couple of pills each day, than the alternatives.
I hope you find your comfort zone with this combo and let us all know how you go!
Cheers!
Jackie.
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Jackie , you really are the voice of reason
Thanks for being here !
nopink : Early on I had 3 onco people talking me down to take the K in the morning 🙄 so I do. And actually in my case it’s helpful because even with 2 alarms I can still forget. Since my early days I discovered people taking them at whatever time they like , so “you do you” once you find that right moment. It’s a lot to deal with , be kind to yourself , you probably do a lot more than you realise. This covid lockdowns alone are throwing everybody off balance on work / contacts / hobbies and they don’t even have our struggles on top of it.^jennifer
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I took my first cycle early afternoon as I'm a late sleeper and off work for now. Switched to late evening and that seems to work better for me. I gather you just have to feel out different times to see what suits you best. Lots of luck 🙂
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hi all
I'm unexpectedly scheduled for a vaccine Tuesday (leftovers in hospital from staff that don't want any). After putting the phone down I realised I will be on day 19 in my cycle. Nobody here knows if I should quit the Kisqali for a week or two or if it doesn't matter.
Any wise words ??? (Ofcourse I’m not letting the vaccine slip through my hands , but I do want it to be efficacious)
I’m very very lucky , they are still messing around with 85+ and medical personnel here 🙄🙄🙄
^Jennifer0 -
I take 600 mg Kisqali+letrozole. I got the Pfizer vaccine, my oncologist had no concerns with the timings. She just said “get a vaccine as soon as you can”. My labs are usually normal-ish.
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I am also on 600 mg Kisqali+letrozole. I just met with my oncologist a couple days ago who said I can get the vaccine when my group comes up. No concerns about timing
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I had moderna. Side effects mild and typical. MO said get vaccine whenever you can.
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thank you all 🤞🤞
I’ve reduced my Kisqali to 1 instead of 2 tablets for a few days . My own initiative, felt like a logical thing to do to keep my white blood cells a bit reasonable. I know I’m crazy , but I’m going with it. Not asking onco , don’t want them to step in and stop my vaccine 😳 I’m skipping 2 groups. So so lucky to get on a reserve list for leftovers and tomorrow
So with 🍀 luck from the Irish 😂😂😂😂
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Hi ladies, I just finished reading the whole thread and you have all been such a comfort to me and given me so much hope. I started Kisqali and Letrozole at the end of January. I just started my 3rd cycle a few days ago and was reduced to 400mg this cycle because my nuetrophils keep going down. I was at .7 on Monday and they like me to be above 1.0 so hopefully this helps. I'm a bit nervous about lowering my dose but I've read that so many of you are on 400mg and doing well.
I'm eligible for my covid vaccine pretty soon, just waiting for sign ups to open for my group which should be in the next week or so. My oncologist said that it doesn't matter at what point in my cycle I take the vaccine. They did say that the efficacy might not be as robust as in a healthy individual because of our compromised immune system but to still take it.
Lesannray, I'm in Calgary too!
Like everyone else I've had a really hard time with this diagnosis. I've just turned 38, diagnosed at 37. I'm pretty devastated but feeling much better this week after reading all your experiences. I think my side effects have been pretty minimal. I have all the menopause side effects from the letrozole and lupron injection. I have nausea every day but I suspect it is from my clodronate pills that I take in the morning for my bones. I take my kisqali and letrozole in the afternoon because I can't eat for 2 hours after the clodronate and I like to sleep in. My nausea starts hours before I take K and I still have nausea on my off week. So I'll take that as a good sign that I'm tolerating K well except for the low nuetrophils. My energy level is down too.
I hope everyone is doing well and I look forward to your updates!
Julia
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Hi ShyViolet,
I’m sorry that you have found yourself on these boards, however you have found an understanding group. The shock of diagnosis is brutal and everyone here can relate.
I have been on this treatment combo since September 2018, and for the time being it is working very well for me, with my last scan showing no measurable disease. I feel pretty good most of the time, other than the usual side effects of fatigue and minor joint pain. I also did have some hair thinning early on, but that seems to have levelled off a bit.
All the best with everything. There will be some difficult, anxious days, but in time you should be able to find your “new normal” (don’t always love that term, but it works) and enjoy a lot of the things you did before your diagnosis and before Covid.
Anna
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