Ribociclib/Kisqali with Letrozole - Any one on this combo?
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Forza,
Glad the scans were good!!! Try eating Greek yogurt for the mouth sores. It really does work.
Hope all the US people had a great Thanksgiving.
Waving to all🖐
Laine
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thanks Laine
The stupid things have strategically placed themselves so it’s hard eating around them. Small price to pay for keeping the cancer quiet my brain says. My heart says : aaaasaaarhhgghhh , gimme spicy foods ....
Got the flu jab in my fridge , putting it off because I caught a chesty cold (my first in years !!).
Happy advent everybody, countdown to Christmas has begun ^^
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Dear All,
Sorry for missing for a while, just wanted to report my mother scans showed 90% reduction in the breast lump and no NED on her bone and lung mets. I know its a long journey ahead but its been a good station today. The side effects have reduced. However her gums have deteriorated a bit and teeth are loosening. Apart from that she is doing good.
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Holiwoman - such fantastic news. Thank you for sharing it will all of us. Please tell her that her friends here pray and send good vibes to her everyday.
Forza- sorry about the chest cold. How are you doing now?
Laine
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hi all
It has been a while since I posted but like all of you I keep up with what you are all up to. I thought I’d let you know how I’m going. Really good! I am up to my 30th cycle. I think - it’s been so long I’ve lost count. The cancer still has not progressed and in the last month I feel I have settled into an acceptance that this is my life now: Living with cancer and all those nasty side effects we experience. But I can still enjoy most of the activities I did before my diagnosis; in fact some aspects are enhanced.
Your posts about treatments after kisquali stops working have reassured me even more - thank you. I hope my experience reassures you that the next few years will hopefully be good ones for you all.
With that in mind I hope you all have a really happy Christmas with your family and friends.
Much love from me
Annie
xxx
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Annie, what an inspiration you are. Whilst I started Cycle #10 yesterday, you give me such hope. Gives all of us hope! Thank you for sharing.
Merry Christmas to you & your family xx 🎄
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we love hope 👍
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Hi Ladies! I'm so glad I found this forum. I'm 28 and I have been recently diagnosed stage IV after a Stage I breast cancer in 2016.
I started Kisquali plus letrozole 5 days ago and so far I didn't notice any particular side effect, but I'm pretty sure something will come out sooner or later! I didn't expect mets or at least not so soon, so I'm quite in a shock, but reading about all you girls doing well is so comforting.
I'm writing from Italy and here there isn't a strong cancer community, so I feel pretty lonely sometimes (even though my friends and family are so kind and supportive). I think I just need to connect with people in the same situation because, you know, it could be so scary, especially at the beginning. I really really hope this treatment works!
Hope everything is doing great for all of you!
Hugs,
Silvia
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Hi Silvia
Welcome, sorry you have to join us here & at such a young age but so glad you did find us. All these woman are so helpful and it's a great place to pop in and have a vent, chat or just to say hi!
I'm coping quite well on this combo & find that I really haven't slowed down! So hopefully you will feel the same too with minimal side effects. Happy to hear 5 days in and you're doing well. I've started Cycle #10 day 4 so looks like we will have our 1 week break together
Hugs xx
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Hi Silvia, I also had progressed after stage I diagnosis. I wish you the best outcome of this treatment. I am also in Facebook group-Kisqali friends and support and I think there is young women from Italy who is on cycle 50 and NED. You can join this group.
Ladies I have question regarding hair. I did not noticed nothing with them yet. I am on combination with faslodex which better for the hair than aromatase inhibitors. I just finished cycle 4, but my leg hair stopped growing or grow very slow or only few.Should I expext this with hair as well?
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Thanks for you welcome girls!
@Traii I'm so glad you're going well on this and you didn't have to slow down! Let me know what you're going to do to enjoy our "free week"!
@Maaaki I definitely join that FB group, thanks for the suggestion! 50 cycles and NED is so inspiring, I hope the same for all of us!
I have just a question: did you notice a worsening in your side effects, in particular those one related to menopause? I remember that during my chemo the hot flashes were driving me crazy, but this time they are not so bad...so I wonder if they could continue like this or I should get ready to feel like 3 years ago again! I had two injections of Lupron until now and my period disappeared properly.
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Hi
@ Maaaki - my hair is growing slowly everywhere and it is thinner. I had thin hair start with but now my ponytail is more of a pig tail. hope yours doesn't thin out!!
@ Silvia - really sorry you have to deal with stuff at such young age!!!! I am on Zoladex the menopause hot flashes were worse than when I was in chemo. I think mine started a couple weeks/1 month after the first shot and lasted for a few months in that intensity. I still get them now but not as bad as before. hope this treatment is gentle on you.
Hugs to all of you!!!
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Hi everyone, I am so glad I have found this forum , I have been following for some time but never posted until now. it helps to see there are others like me stuck dealing with this dreaded disease.. Annie, its great to hear how well you have done, it gives me hope that my treatment will go as well. I was diagnosed March 2018 at age 66 with Left, 6cm+, Stage IV, metastasized to lungs, ER+, HER2- and started on Kisquali and Letrozole and am now just finishing my 15th cycle. Left breast remove in April 2018 and a follow up scan had showed mets to both my lungs. All but the one largest 11cm met are gone and it has shrunk to 6cm. I have the bone and joint pain in both my legs and feet and lower back but its tolerable, the hair thinning is what bothers me most, it has gotten pretty bare on the top, the eyebrows are almost nil. The hot flashes and night sweats were wicked but finally found a medication that worked (Mint-Clonidine) and they have pretty much gone provided i avoid heavy use of caffeine. I have a hard time sleeping, it seems I drift of for 1-2 hours then am awake laying there for a while before drifting off for another couple of hours. For the most part life goes on as normal as possible although I wish i could find a way for it not to be on my mind constantly. My latest bone scan showed a spot on the lower spine but the dr I saw described it as something we wanted to see and called it a healing lesion.. not exactly sure what she meant by that but will see my regular oncologist early Jan and can ask for a better explanation since nothing was there the year before. I to wonder what is next for me when this combo stops working, I guess time will tell as when I ask the Dr's I just get told we will cross that bridge when it arrives.
I hope everyone is doing well.
Meg
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Hi Saskatchewan ^^. I try to remember people by location , I'm weird like that. And yes on the "healing lesions" , sometimes referred to as "scar tissue" , "dead" or "inactive" tumors here in Belgium. All depends on which doctor writes up the reports. I only found out I had a tumor on my thyroid when I read the report that said it was "healed" :O Had to take several deep breaths after reading that. And I back tracked and couldn't find it in my previous reports. So the notes between doctors clearly not the same notes they show the patients. I've given up trying to make sense of it all.
Still finding it strange nobody here is interested in doing a lumpectomy or mastectomy on me ???? I mean , I love my boobs and would prefer to keep them obviously. Still. I do seem fairly unique in the breast cancer world. Bit confused when I got asked by another patient today which breast was the reconstructed one ?!? Euh ... neither. Not sure who was embarrassed more after that conversation.
Just checking in here to read up and do my own little update. Bloodwork today good enough to start box 7 already !!! (400) Actually the white blood count gets a little higher every month. Highly excited to see 1,8 !!! I wonder if I'll reach 2 one of these months. I'd feel better in myself knowing I have more power to fight off infections.
However , suddenly one of those oncologists realised I'm still not getting Xgeva shots. And why. Well I'm the patient , so don't ask me. Anyways so grrrr ... more paperwork. Need to get the application to my national healthcare , they then will send me an approval letter back , then I can take that to the pharmacy to get the free Xgeva. No idea why these people can't just sort it out amongst themselves electronically.
Other health matters ... arthritis in my lower back is seriously keeping me grounded. Quite low on my list of illnesses but currently the one to really swear about
I tried numbing it with lots of Tramadol which made me throw up and Belgium doesn't do codeine , great. Ibuprofen it is then. Happy Holidays to all who celebrate. I'm thinking of a quiet week just with my pets , here's hoping
My creativity bug has returned so I have *all the hobbies* to catch up on.0 -
hi all
I’m feeling rebellious and don’t want the Xgeva. Monthly looks like overkill. My bonemets are slowly shrinking on every scan anyway.
Those possible side effects look really bad and I’d just gotten into a fairly happy routine on my current drug mix .??? Has anybody else refused offered drugs ??????
sorry for posting on Christmas EveLove Jenn
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Hi Forza,
You can get the quarterly injection instead of monthly. Ask your MO about it.
After 1 year my MO said we will go to quarterly. I think that's the standard in the US.
Hope you and everyone else had a wonderful holiday!
Laine
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Hi Laine !! I read that Xgeva leaflet ... , well , it’s almost a book . I’m not convinced at all. No I’m not a doctor but pfff.
I’m seeing an oncologist in training end January (labs + box of K). He’s fairly useless and can never locate my file , he just tries to act cool. But seeing the main man half February after 2 *scans* so going to need some convincing. Unless that bone or liver scan is 💩 .
Hi everybody !! Hoping you’re all having a pain free old to new year X0 -
Happy and healthy new year to all. Forza, what about zometa (zoledronic acid) instead of xgeva? There are some scientific papers that except osteoporosis prevention it can have antineoplastic effect and also it is immunostimulatory. I am having monthy to 6 weeks (depending how I go for blood work) infusion. First infusions caused flu like symptoms next day but not now. Osteonecrosis of the jaw is also possible side effect, but it is rare and you can go quaterly after one year.
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!!! Happy new year to everybody !!!
Hello Bratislava
happy new year to you too. Thanks for that , I noticed Americans seem to get that one often.
I’m still having phantom pain in 1 of the craters after the trauma of wisdom teeth pulling. So that osteonecrosis of the jaw ?? If it happens to someone , it’ll be me. Rare things always happen to me. Maybe I should try to get a dental apppointment to have it looked at again.
Actually not bothered about the osteoporosis ??? My mum (68) has that and she’s still not broken anything. I’ll never get that old. I know I know ...Anyway , oncology was going to phone me about it before Christmas and I’m still waiting. I have healthcare approval and prescription ready so in theory could have it done today. Just don’t want to think about it. I’ll wait until the next labs for advice. In 2 weeks AGAIN. Time flies !!
Trying to smile here ) Jenn
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Happy new year to everyone!
Thanks for the info Forza, saw my onoc today , finally on my 17th round of ribociclib after 2 weeks off due to low neutrophils , she wants to start me on Zometa once every 3 months, Not sure if the back pain i have been having is due to that "healing leason" or possibly the the degenerative problems I have with my back. She ordered a new scan in the next couple of weeks to see if anything has changed, she did say my markers have gone up some and that she had hoped the ribociclib would work longer on me.. I guess we will see in a few weeks when I go back.. I was able to talk to both the ono and pharmacist and neither saw any reason I couldn't try cbd oil for the pain and maybe even help me sleep some so going to try that. I hope all are doing well,.
Meg
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Hi everyone and Happy, HEALTHY New Year to all...
I had my first set of scans post-dx - 3 rounds of Kisqali/Fulvestrant - and all looks good. I had some tumors disappear, some shrunk by 50%. She was very happy with the response, but confirmed my concerns about my FGFR amplification reducing the time Kisqali will work for me. I doubt I'll get to the median of 2 years. I'm guessing more like six months from others' stories, but who the heck knows. Trying to predict this stupid disease is an exercise in futility...or at least crazy making.
The other thing that freaked me out was a spinal area they said was "indeterminate" in the last PET was completely resolved, meaning it must have been mets. I was under the (hopeful) assumption it was just more arthritis, so that came as a bit of a blow. I had been thinking all this time that the mets were just nodal, but SURPRISE! Good news that it's gone of course, but still freaked me out enough so that I went on a bit of a food binge. I had been doing great on WW - lost 11 lbs first month! - but whoopsie doo...just blew my points out of the water today.
Tomorrow is another day and I'll get back on it. I also plan on starting my workouts tomorrow as well. I want to get as strong as I can as fast as I can so I can handle whatever treatments come next.
Hope all is well in your worlds -
Lauren
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oh Lauren !!! There is good news in there , K is doing it's job ! 6 months looks like a ridiculously short time , I refuse to believe that. I decided yesterday these medians mean absolutely nothing.
ETA -Admittedly I can’t find anything in my notes about FGFR ?!? This is why these doctors don’t want us on in the internet.
Another thought : that spot in the picture. I was sooooo convinced it was just another bone met. It hurts badly and I had to quit my favourite hobbies. At diagnosis 6 months ago they wrote “probable met". Made sense to me. On my last (nuclear) scan 2 months ago they looked more closely, 20 more minutes on that table ! And they wrote “obvious arthritis". Even I can see those discs bulging. And I was actually disappointed ☹️ So no shrinking of the spot that bothers me most. Living with cancer is ironic.
Gentle hugs
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Hi Forza-
Yes ironic is a good word. Back pain is the worst so hope you are getting some relief in some way.
The FGFR amplification showed up on my guardant 360 liquid biopsy. It’s not a good one to have as it makes the cancer resistant to cdk46 treatments and there are no approved bc drugs to treat it. There are a few clinical tests but I think afinitor would be my next one. I’m trying not to let it in my head too much and just riding K as long as I can but it’s there.
Anyway much to be grateful for at the moment. Looking forward to a Cubs game at Wrigley (baseball) in April - my first time! Another trip planned -to Omaha in May, Idaho in July, and NC & Memphis in October. I’m ready!
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Ach. Cancer just sucks. I googled a bit on the fgfr matter and my brain went boom.
Those trips sound amazing. Good for you. I have a shortlist myself but too anxious to book any flights yet before my next scans. Doing the outward “whatever” but the inner panic is definitely there.
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Hello ladies!
I hope everyone is doing good! I havent been in here for a long time! I am doing good! Nothing new on my side to be honest!
I really wish you all a good and stable year! May God bless you all with happy days for you and your loved ones!
Many hugs to you all!
Ida!
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Anyone ever break out in hives or a rash with Kisqali? I’m on my 4th round so I’m not sure that’s it but I think you can develop an allergyat any time. I don’t have any Claritin so it will have to wait until tomorrow. Fingers crossed it’s not the Kisqali.
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Hello I have rash from time to time! But it goes away eventually I use prometasine cream if it gets really bad. Buy I never used anything else. According to my doctora its a combinatoon of the pills that makes it happen.
Has anyone heard of the ladies from Australia? How are you ladies, are you effected by the bushfires?
I am hoping not and that you all are safe!
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Gday all,
I was holding off posting till next week when I get my bone scan/bloods results, but good news yesterday from my CT shows one of my liver Mets has gone, and one spot in my breast continues to shrink, so I am feeling optimistic atm😀
Ida, thanks for asking about bushfires. I have found myself crying several times, for the animals, the people who have lost everything, the communities burnt to the ground, and our precious flora. I live in the city, but there is no escaping the acrid smoke. People with asthma, heart conditions etc are at great risk.
Our idiot prime minister and his Neanderthal troglodytes have been denying climate change for years, promoting the fossil fuel industry, and ignoring the warning signs. Keeping my fingers crossed they get voted out at the next election and the adults take control of the nursery again. With this lot, and Trump in the White House, it has been a crazy start to 2020...
I take “telfast" for skin rash and any other annoying inflammation. One of the few meds that doesn't make me drowsy.
Lauren, amazing results, good news always makes us happy👍
Forza, hope your back pain improves. I ruptured a disc in 2002 and know how painful this can be. Pain meds helped, but I felt like I was on another planet. I love reading your posts, they make me laugh “brain went boom"😂💕 to all, will report back when I get more test results
Jackie.
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Quick update,
My cancer markers were down to 16 (half of what they were)😀
Bone scan was fine... no Mets
My onc is very happy with my progress, and will extend my scans to 4monthly and told me to cancel the mammogram I had scheduled as I don’t need it! 🖐🤛💃🏻💃🏻💃🏻
Happy
Jackie.
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Congratulations kangaroo. Hope we are all stable for a long long time.
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