Ribociclib/Kisqali with Letrozole - Any one on this combo?
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Yay Kanga! Great news.
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yay Kanga awesome news!👌
My TMs are slowly getting down they're 40 as of last week.
Ida good to hear from you. We are about 3 hours from Victorian fires. Very hazy today and smelly. Hot and humid winds.
Hope everyone is well as can be to start off 2020 ❤
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Great news on the scans Kangaroo x
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Boring update. Nothing to see here. Starting box 8 of K (400) tomorrow. My bloodwork was perfect apart from the usual suspects.
Being urged to really start the monthly Xgeva. And my whingeing about possible side effects got me nowhere. Pfff. Apparently I’ll just feel a bit achy for 1 day ?!? These doctors have no idea.
I’ll have a not so boring update next month. February is the month of a nuclear bone scan , an echo and I asked for a brain mri. They’re happy to zoom in on that brain because I’ve not been happy with progressive headaches since before dx. And on ct there is a little doubt over 2 areas. Yes , paranoia kicking in sometimes. However , radioactive dye + mri contrast in 1 day seems a bit much ... I’ll be glowing in the dark. They’re avoiding too many petscans for me because I’m allergic to the jodium ? contrast.I hope everybody is doing as well as can be expected , I’ve lit some candles for all of us in stage 4.
^^ Jeb
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Boring is GREAT! So is box 8!
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yes I guess it is Lauren
I'm suffering blue Tuesday today .......
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hello everyone!
I am so glad to read for good news in here! I too have good news. Stable scans. I will be doing a mamo next month to see how the mass in my breast is doing.
Traii I am so sorry for the hell your country has been put through this summer! I hope it ends as fast as possible.
Has anyone of you ever done a Hialuronic Acid treatment for bone regeneration? I was suggested from my doctor yesterday but I have to do a couple of tests first.
Hugs to you all!
Ida
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Ida
Great news on stable scans. My scans are mid Feb. Tumor markers down to 36! Can't believe this time last year they were in the high 200s!
A nurse at my hospital lost her family home in the fires. It was so sad hearing her story yesterday.
Hope everyone is well as can be and everyone that has scans coming up this month are good ones for us all xx
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Hi all,
Just a update, i finished my 14th cycle and had X ray. All good, CA153 is down to 22.
I am so glad to be able to live a normal life on this combo. People can't even tell that I'm fighting.
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Ida, so glad your scans are stable!
Traii, that’s an amazing drop in your markers! Kisqali must be knocking out those little cancer suckers!
That’s wonderful news Operahouse!Correct me if I’m wrong, but I was thinking no one on this thread has moved on to another tx, so I suppose we are “pioneers” on this combo. The only downside for me atm is getting back into an exercise routine... but I put it down to laziness rather than kisqali😂
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Goodmorning. My name is Robyn, I reside in Australia. This post is difficult to write, however my sister and I feel it would have been valuable information to us if we had it late last year. Our gorgeous mother was diagnosed with Stage IV mets that had spread to her bones, Aug 2019. Completely out of the blue. We were advised that once the initial rounds of radio were complete a regime of Kisqali/Ribociclib would enable a diagnosis of 10 years. Only 10 weeks later mum was transferred from rehab to emergency then ICU with sudden onset of lung inflammation in both lungs. After 12 days, we had to make the devastating decision to turn of life support. 4 days later, whilst researching Kisqali/Ribociclib we happened upon an FDA warning directly identifying sudden lung inflammation as a side effect of this drug, and as such patients should have their lungs monitored. Our mother began Kisqali/Ribociclib on Sept 19 2019, 3 days after her 70th birthday. This FDA warning was released on September 13 2019. Our mother was an otherwise healthy woman, with a rich and loving life ahead, she did everything she could in ICU to give herself a chance, "i want to get better" was her anthem between oxygen masks. Eventually mum was intubated whilst her ICU and Infectious disease specialists tested for all possible types of infection/diseases/pneumonia possible. We have lodged documents with Novartis and they are requesting follow up. In no way do we want to deter women from this treatment, we were so happy mum had this option, Kisqali/Ribociclib would have let her and her children and grandchildren say hello each day and goodbye on our own terms if we had the chance. We only think it should be a safe playing ground and so have decided to share this information. we also believe it should be a fare playing ground and are at a loss as to why these alerts are not sent out globally, given they are used globally. We are heart broken, we are completely devastated as she was everything to us. Nothing can be done to bring mum back but we so do not wish upon anyone else. Just ask the question, is all.
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Goodmorning. My name is Robyn, I reside in Australia. This post is difficult to write, however my sister and I feel it would have been valuable information to us if we had it late last year. Our gorgeous mother was diagnosed with Stage IV mets that had spread to her bones, Aug 2019. Completely out of the blue. We were advised that once the initial rounds of radio were complete a regime of Kisqali/Ribociclib would enable a diagnosis of 10 years. Only 10 weeks later mum was transferred from rehab to emergency then ICU with sudden onset of lung inflammation in both lungs. After 12 days, we had to make the devastating decision to turn of life support. 4 days later, whilst researching Kisqali/Ribociclib we happened upon an FDA warning directly identifying sudden lung inflammation as a side effect of this drug, and as such patients should have their lungs monitored. Our mother began Kisqali/Ribociclib on Sept 19 2019, 3 days after her 70th birthday. This FDA warning was released on September 13 2019. Our mother was an otherwise healthy woman, with a rich and loving life ahead, she did everything she could in ICU to give herself a chance, "i want to get better" was her anthem between oxygen masks. Eventually mum was intubated whilst her ICU and Infectious disease specialists tested for all possible types of infection/diseases/pneumonia possible. We have lodged documents with Novartis and they are requesting follow up. In no way do we want to deter women from this treatment, we were so happy mum had this option, Kisqali/Ribociclib would have let her and her children and grandchildren say hello each day and goodbye on our own terms if we had the chance. We only think it should be a safe playing ground and so have decided to share this information. we also believe it should be a fare playing ground and are at a loss as to why these alerts are not sent out globally, given they are used globally. We are heart broken, we are completely devastated as she was everything to us. Nothing can be done to bring mum back but we so do not wish upon anyone else. Just ask the question, is all.
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Hi Robyn,
So sorry for the loss of your mum.
I know when my mum died suddenly, it was like a spring was broken somewhere deep in my heart. I also experienced the horror and sadness of the look of my own children when I told them of my own diagnosis.
I think we are still guinea pigs with these new drugs, and new side fx will emerge as more of us undergo this treatment. Novartis needs to take responsibility for the safety of these drugs.... they seem to be more interested in keeping their shareholders happy!If anything good is to come out of your experience, it will be that the warnings are put out there, and will potentially save other people’s lives. Thank you so much for the warning.
Gentle hugs to you and your family at this sad time in your lives.
Jackie.
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Hi Robyn
Sorry for the loss of your mum.
Like Jackie said, we are all guinea pigs when new drugs come out re side effects.
I know that CT scans are requested every 3 months as standard for me and I think for this regime in general to monitor lungs etc.
I for one had shadows coming up on both lungs now for the last 6 months or so. I've had a bronchoscopy to see for cancer or infection but nothing was reported. So docs think this could be a possible side effect from Kisqali. I'm still monitored every 3 months via CT scan because I'm not showing any signs of shortness of breath etc but do need to advise them if anything changes so they reduce my dose (im on highest dose) or stop this drug altogether.
So far last 2 scans are the same with no increase or decrease in shadows
Thankfully my oncologist is aware like myself of side effects.
Thanks for sharing your story and may your mum RIP x
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So sorry for your loss Robyn , I can't even imagine having to turn off life support.
Decisions about treatments are so hard when you're stage 4. I have postponed Xgeva for months because of all the red flags but what are we to do ?? So I've started it anyway last month. I'm scared of the Kisqali too, apart from monitoring blood there's not much more checking they do on that one (where I live). Here the lung complication isn't even in the leaflet yet. I learnt about it from Kangaroo ... And my occasional heart flutterings they're ignoring. But the tumors shrunk !!!
Next week scans
already in full blown scanxiety mode. There's only so much chocolate one can eat for comfort ...With you all in thoughts xx Jenn
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Dear Robyn
I can only concur with what Jackie and Jenn have so eloquently posted. I am truly sorry for the loss of your dear mum.
And to all of you as well, you know I have been so lucky with the kisquali treatment keeping my cancer at bay for 20 months now. I recently had a scare with my blood tests showing some minor kidney dysfunction. But after all the worry and angst that it caused, once again my scans are showing stable disease and normally functioning kidneys. Who knows the whys and wherefores that these things happen. Just a part of the roller coaster.
And thefatigue has finally got to me and I have now stopped work in order to give my time and energy to my family and friends. A difficult decision but the time is right and I like not having that feeling of ‘so much to do...’
Good luck with your scans Jenn and anyone else who has them coming up. Take care and keep well everyone
Annie xx
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Robyn sorry for your loss *Not sure what happened with my deleted post) but mentioned I do have chest scans every 3 months and monitored closely as Kisqali can be damaging my lungs. 6 months no changes do hoping Mondays scans are same!
Forza I have scans Monday. Scanxiety will kick in Sunday night for me🤪 but we got this girl.
Annie yay to 20😁 and congrats on your decision to stop work even though it would have been a difficult decision for you no doubt. I find myself getting tired towards end of week as I'm go go go and will be even be more now with my 10 year old starting footy season again 😳
Hope everyone's doing well as can be xx
Tracey
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Greetings Ladies,
I'm a new oldie here. I had signed in in 2004 when I was initially diagnosed with BC so that somehow messed me up on posting to this forum. Finally figured out I had to use my old username!!
I was diagnosed with MBC to the bones in Nov. 2018. I am now on my 13th cycle of Kisqali and Femara which I started Feb of 2019. My Pet scans in August and again Dec of 2019 were NED. My oncologist decided on Kisqali advising that it was less dangerous for blood clots than Ibrance. I have lots of side effects with the main one of fatigue but so grateful for the medicine and to find others taking it.
Audrey
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Seems I need to ask for a lung scan.
yay , a ned person , hello Audrey
I've bid on a house that needs serious renovating last week :O News on that in 2 weeks. I've completely lost my mind , that's for sure !!! My scans better be ok
// love and light from the ever crazy Jenn
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Having great scan results. Some bone tumor left (the big one they biopsied) , the little ones are all gone. And nothing in that brain or liver !!!
In 3 months lung X-ray and yet another nuclear bone scan. There’s currently a Kisqali patient with that particular lung inflammation in my hospital. But apparently I shouldn’t worry :O
Starting box 9 (400 K) tomorrow
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So good to hear some positivity news, Audrey NED and Forza with your reduced mets!
Hoping the rest of you are doing well too!
Jackie
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Great news Audrey and Forz😁
Results for my lung inflammation next Friday!!🤞
Hoping all is well with everyone x
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Traii
That seems a long time to wait for results of a lung scan ? Isn’t it just an x-ray ?
My oncologist thought he was being clever ... “remember it’s flu season so no need to panic when you start coughing. We see you every 4 weeks anyway”
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forza, CT results are in, it's just my oncologist appt is next Friday but for once I'm not nervous or anxious I guess because I don't 'feel' any different. She said if I cough or get short of breath then I'm to call her immediately!
I mean hey, I'm no marathon runner but if there's a good sale on at the shops then I'm running there 😉 & I'm sure to get put of breath 🤣
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hi, I’m newly diagnosed with bone mets. Starting Kisqali 600 mg and letrozole tonight! I had the goserelin injection this afternoon. Any tips ?
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kkcita,
Sorry to hear about your bone mets, but keep positive about the kisqali... most of us here have had good results. Some, like me, because of side fx have reduced to a 400 mg dose and still doing well.
It’s worth reading through the posts to see how we got on when first prescribed the combo, and how we have progressed along the way. Keep us updated on your progress, we love to compare notes and support each other.
Sending gentle hugs,
Jackie
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Hi there!! I'm a little scared right now. All had been going great on this combo until this last scan. I had a pet last week and it shows new masses in liver and also new bone lesions on spine and sacrum. New compared to last Pet in August(have CT's every 3 months). The last ct showed more masses in liver and growth in the largest that had been shrinking. My appt is on the 13th and my doctor was suspicious of these results on my ct and the pet just confirmed. I know my treatment will be changing here soon. I guess I'm more disappointed and want to know if anyone else has had progression, if so what's next since this was the first long term treatment since chemo and being diagnosed with Mbc a year agonot sure if “long term” is the correct wording sorry if it’s not. Trying so hard not to freak out
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Hi Pepper, this drug is so new that the “what happens next” question is not clear. Reading other threads I have picked up that once kisqali or Palbociclib fails, other CDK4/6 inhibitors, such as Abemaciclib have been successful.
We are all holding your hand through this, and know we will be faced with the same dilemma at some point. Let us know how you get on. The 13th seems a long way off, and probably indicates your Dr is not overly concerned about the next step and is hopefully weighing up the pros and cons of any new treatments. You may even be eligible for some new whizz bang drug trial.
Sending hugs,
Jackie
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Hi,
I don’t post often, but read daily. So happy to see so many of us doing “well” on this combo.
For those new to this post and looking for tips, I have found this combo very manageable, with minimal side effects. Everyone is different, but for me, the combo has been effective, (NEAD as of August and QOL is very good (except for this little cancer problem).
All the best with treatment and positive vibes for a great response.
Anna
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Hi Pepper,
Sorry to head about your progression. I have been there and it’s a scary time.
Looks like this is your 2nd line treatment for Stage IV. I think in discussions with your MO you’ll find there are options available for you. As Jackie said, Verzenio may be an option, or an oral chemo (Xeloda) could be next. It worked for me for a year with minimal side effects, before I started this combo, which is my 3rd line treatment. (Tamoxifen for 2 months as 1st line, so I don’t really count that one.
)Sending you positive thoughts
Anna
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