Ribociclib/Kisqali with Letrozole - Any one on this combo?
Comments
-
thank you ladies. I am sorry if my english is poor, I am from Croatia, Europe.
I am sorry if you misunderstood me.. I was wondering if you think those 6 weeks to start the therapy were too long.
0 -
Applepie, Your mum’s cancer is hormone positive which is the most common, and not as aggressive as some others. She has probably had it for some time, so 6 weeks probably wont make much of a difference. The combo is initially fairly fast working, so hopefully she will see some improvement on her next scan.
Hope all goes well for her.
Jackie.
0 -
Thank you Jackie
0 -
Apple we are very near geographicaly. I am sorry for your mom. Please give yourself a break from anxiety. It took me two months to start the cure. As Kanga said she has it for a while now so those weeks wont change a thing.
My doctors always say even no progression of the disease is a good news. I really hope she is the case of shrinkage. Please have faith.
And please dont be mad at for saying this: dont stay too much in the forum, dont get me wrong here are the best kind of people, like a big family. But everyone has a different story and dont compare your mother's to others.
Please keep us updated and if you wanna share anything feel free!
Much love!
0 -
Ida, thank you very much. I appreciate your advices and I undertand your point. I've been stressing quite much.
I am glad to hear that 2 months to start the terapy didnt have a bad outcome on the scans after starting therapy for you. I hope that will be her case too.
Wish you all the best!
0 -
Hi everyone! I’m new to this site and forums. I thought it would helpful to find out things that help side effects on this regimen. I started Letrozole and Kisqali 1 weeks ago. So far doing ok, no nausea. I have had insomnia which is new to me. A few specific questions. How soon did you notice thinning hair with this regimen? When did rashes start? Anyone using Cannabis or CBD oil on this regimen
0 -
I also waited about 6 weeks before starting Kisqali. Got a second opinion and wanted to take time to make the right decision for me! I was told that amount of time was not going to be detrimental and it’s important to take time with metastatic disease to make informed decisions! I hope your mom does well! :
0 -
hi ladies
Been lurking since Feb this year when I started this combo! DX Jan 2nd and thought I'd pop in to say hi! 👋 you girls have kept me sane reading on this combo as I had no idea what to expect!
I just had first lot of scans after 3rd cycle & can happily & excitedly say I had excellent results!😁
I saw my Tumor markers go down dramatically each fortnite in which scans proved it was working👌 I call them my magic pills 😉
I take pills at night. That way I sleep off my SE of nausea.
@cindyrelly I had hair thinning a few weeks after starting combo. I still wash,blowave and straighten every day (I know I shouldnt😏) but for me it's like when I have a season where hair falls out. I have little sprouts of hair growning so I really don't know what's going on 🤔
I've never had this rash others say they get but I've only just started 4th cycle on Monday.
I get a little joint pain every now & then from Letrozole and my bone injection I get monthly.
@applepie09 I started treatment 3 months after DX'd. That's after radiation to 3 spots and an operation. All the best to your mum.
@kanga roo, hi from another Aussie girl here!!🙂
Hope everyone has been well x
0 -
Hello SK35
I've been taking Kisqali and Letrozole since April 2018 and have tolerated it very well. I do have muscle pain in my arms and my thoracic back aches if I do too much, but overall I've had a good experience. A little about me. In January 2016 I had a lumpectomy and radiation for a Stage I tumor in my breast and all went well. In January 2018 I was diagnosed with Stage IV Metastasized Breast Cancer to the Bones. A month ago it was determined that the tumors are dormant. However, I am still taking Kisqali and Letrozole and will continue to take these meds until the cancer becomes active again. I've had a lot of hair loss and what's left has gotten very thin. Does anyone know if I were to shave it off, would it grow back while I'm continuously on Kisqali and Letrozole?
0 -
Traii, wonderful news, I'm doing a happy dance for you
Hi Cinderella and Pink Pearl, and welcome to our thread. Hair loss is a SFX of both Kisqali and letrozole, so most of us are in the same situation. My hair was reasonable for the first 12 mths, just thinned a bit, but after 17 months I'm noticing more broken hair, and thinning (mainly on one side) which I think makes me look a bit lopsided.
I thought stuff it, I like to look nice when I go out in public, so I have just had fitted and ordered an easy care wig. I'm also curious if anyone has shaved their hair and how it has grown back.
I have noticed my hair does it's own thing on other parts of my body... hardly any underarm or leg hair, but could still go a Brazilian ... got to laugh or I'd cry....
Love to all, and hope you are all progressing well,
Jackie
0 -
Kanga I shaved it! Well not all of it bu I did a pixie cut and it is growing back like normal. And I have always had super thin hair!
Girls welcome I am glad you found us!
Traii I am so happy for you!
Hugs!
0 -
Hi all,
First time wearing a hair-piece, but love it! Very similar to what my natural hair used to look like. Will feel a lot happier getting out and about again. Hope you are all doing well!
Jackie.
0 -
Jackie, love your new hair. It looks just like your profile picture. My hair loss has slowed down since I'm down to 200mg, yeah!
0 -
Jackie it looks just like your photo! Was that your real haor in the pic? You look great by the way!
I have my monthly check tomorrow! Fingers crossed!
Xoxo
0 -
Thanks Opera and Ida,
Opera, so glad your lower dose has reduced your hair loss! That tells us it is probably the Kisqali rather than the letrozole causing the problem. I’ve been on 200 for a long time, and it still seems to be doing the job
All the best for tomorrow Ida. My next tests aren’t till August so I’m trying to live as normal life as possible and am really happy to say, that besides an occasional mild hot flash and lethargy, I don’t have any side FX.
Yes, my bio picture is my real hair taken 6 months before diagnosis.
0 -
you look fab Jackie ❤
Good Luck Ida, my monthly check up is tomorrow too 🤞🤞 for the both of us.Xgeva shot after appt 😏
I can't believe how quickly 4 weeks passes haha
Time flies when you're having fun! Well so the saying goes😏😉
0 -
Traii I am glad you are having fun! 🤣🤣
As per my test everything is fine! Wbc good enough to keep on with the treatment! I had a good chat with my doc about getting pregnant (I am not getting) and anxiety! And to be honest I got a lot out of my chest and I feel a lot better!
Hugs to all of you!
0 -
Jackie you looks lovely!!!
Ida glad to hear you tests were fine!!! Re getting pregnant, that's the hardest thing about this disease!!! If you ever need to talk pm me, I had my share of demons on this topic since I was diagnosed.
Traii hope your tests were great!!!
As for me, I am on cycle 18/19 I think and my reconstruction surgery went well and my recovery has been going well.
Hope everyone else is doing well
Lolis
0 -
Haha Ida yep always having fun 🤣 so happy to hear you're counts good enough to continue. So we're mine 👌 My oncologist is really happy with me so I shall start cycle 5 on Monday!
Glad you got to chat with your doc. Pregnancy is such a hard one. I had a lot of thoughts on this topic at my original DX. I'm here for a chat too if you want to PM me.
Lolis good to hear your recovering well
Hugs to all
0 -
hello
I'm about to start Kisqali tomorrow. I know the question has been asked before but interested to know if anyone is working full time while on this regime?
I could resign from work. I don't have to work. But I enjoy work. Just don't want to work if I am ill.
I welcome your advice.
Lisa
0 -
Hi Lisa
I work part time only because I pick my son up from school. I don't have to work but enjoy it too!
The first cycle I took in the morning and felt I was too tired, so for the past 3 cycles I take my 3 tablets at night so I don't feel so tired during the day and plod along as my normal routine!
You will find your new 'normal' too. But I wouldn't give up work if you enjoy it.
0 -
Hi all,
I am writing on behalf of my mother. She just came out of 5 years cancer free after getting urinary bladder cancer, when she was diagnosed with non malignant entrometrial hyplasia( heavy uterine bleeding) and breast cancer with mets to bone. HER - and ER/PR +. She was suggested Letrozole with Ribociclib. The responses in this forum gave her a lot of confidence to start the treatment. She is on 4th month of letrozole and 3rd cycle of Ribociclib. Her uterine bleeding has completely stopped and she feels her lump is softer. Side effect wise, she has a little hair fall and some skin itchiness. She seems to be dealing well with it. Reading the forum helps her a lot... thanks for the sharing your experiences
0 -
Good to hear from you Holiwoman. Sorry to hear your mum has cancer back after 5 years. I am 73 and take Anastrozole and Ribociclib. I am taking it because my lump is under the breast in the chest wall so it has advanced into the skin and muscle. It was around my 5th cycle that I felt my lump was changing and softening. I am about to start my 6th. I am on 200 grams of Ribociclib and have not noticed any hair thinning although maybe it is growing slower. I have few aches and pains and do not feel excessively tired. My oncologist reckons my tumour is inoperable but my consultant/surgeon told me back in January she could operate but would prefer it to be smaller so I do not know who to believe. I am seeing my consultant next month so should know more then.
0 -
hello everyone
I have been reading your posts for several months and surreptitiously have gained information and support from you all and would like to share my story now.
I was diagnosed with a small lump (stage1) on the left side in March 2016 and had a lumpectomy and six weeks of radiotherapy. My surgeon said after that it will be like I had never had cancer. So I was feeling pretty optimistic about that. But...
At my 1 year mammogram they found a new cancer on the right side stage 2 this time but as it had only been a year no one was too concerned and again my surgeon was nonchalant saying there’s no need really as it’s only been a year but we will do a PET scan just to tick the box. It picked up multiple lesions in my ribs, shoulder blades, thoracic & lumbar vertebrae, sacrum and extensively through the pelvis. As you all know - devastating. I was 56 at the time and looking forward to our retirement, free to do whatever we wanted, holidays, hobbies etc and our 3 daughters’ career growth, weddings, grandchildren. Just our future.
I had a wide excision and removal of the lesson and also an axillary clearance; then I was treated (and continue on) with a denosumab injection monthly and daily letrozole and ribociclib (3 wks on/1off). Initially on a compassionate program until it was put on the PBS. So I have had 23 cycles now. I have been lucky enough to tolerate it at 600 mgm until 3 months ago when the side effects were too debilitating. I now am taking 400 and feeling a bit better.
For those of you just starting out or been on it awhile I thought you might be interested in how it has gone for me. My skin is itchy on and off but it’s not a problem for me. My hair was ok for the first few months, staring thinning and falling out after that and not growing back until I was about 18 months into it when it started growing but still very fine - and curly! I have had dead straight hair all my life. So now people are wondering why on earth I have gone off and had a perm put in when I am so unwell with cancer! Haha. It’s funny observing their expressions if I run into someone I haven’t seen for awhile. They don’t know whether to ask or comment. It’s so different from what I looked like before, someone has to bring it up, so I usually make it easy for them and mention it.
Some of the side effects have progressively become worse for me. for the last three or four months i have had to have an anti-nausea medication (maxalon) at the same time as I have the ribo and letrozole whereas before it was bearable and only occasionally I’d need it. The fatigue is pretty debilitating and I have to have a sleep every day for an hour sometimes more. And sometimes in the morning too. I only get up early if I have to be somewhere early. This was previously unheard of. I never laid down during the day. My blood pathologies haven’t really changed. They are usually just below or just above the minimum required but never enough to delay the beginning of a new cycle.
My biggest complaint is pain. The cancer in my pelvis is extensive and the pain has increasingly become worse. I see the palliative care team at my cancer centre and they together with my oncologist are very supportive of me. It upsets me though as I didn’t think this would be an issue until much later in the disease. I am assured that we are all affected differently and the body reacts differently to all the activity happening within the bones and also to the various drugs.
I am lucky enough to be still working. Just 2 days a week but it gets me up in the morning and it’s a social outlet for me too. Also I need to keep earning as long as I can. There’s still a few places to go and things I’d like to do. So I’m saving for them.
Andthat’s my story - long winded I know and I’m sorry. The good news is that the cancer has not progressed since treatment started 2 years ago; so I am very grateful. I look forward to hearing more of your continuing stories.
Love and hope to you all
Annie
0 -
Hi all, So much good news;
Ida and Traii good counts!
Louis' recon went well!
Holiwoman, so pleased your mum is responding well to this combo!
Dragonfly, hope the combo reduces your tumour and your next scans bring you good news!
Annie you are amazing! - fighting the pain barrier and still working! It's so good to hear some positives from someone who has been on the combo for 2 years! There's not a lot of info out there, so the anecdotal stories we share here are so important to all of us!
XXOO to all
Jackie.
0 -
Annie, LisaPizza and Holiwoman - We want to welcome you to our Community. We're so sorry for the circumstances that have brought you here, but you've come to the right place for support. Please, let us know if can be of any help. We're here for you!
Best wishes,
From the Mods
0 -
LisaPizza,
I have been working full time since my first and recurrence diagnosis. I am on the 600 mg and it is doable. The first three months were a bit hard from the side effects perspective as my body was adjusting to menopause (I get monthly Zoladex shots) and new meds. after that though the side effects slowed down and now they don't affect as much other than the hot flashes.
Annie thanks for coming back and sharing your experience with us. it certainly is encouraging. I am hoping the hair regrowth happens for me too, I just cut my hair short as this is the least hair I had (other than when on chemo) and it makes it hard to do anything with it.
Holiwoman, wish your mother continues to have many many more successful cycles.
Hope everyone is doing well and enjoying these days of summer!!
hugs,
Lolis
0 -
Hello again from another Australian - as Ribociclib is the first cdk 4/6 inhibitor on the Aussie pharmaceutical benefits scheme probably not surprising that many of us are revealing ourselves.
So Lisapizza - yes I still work full time on this combo - I took a few cycles to settle in - A bit of gi stuff to begin with - however starting to feel as fit as ever apart from my hair - phooey .very thin and impossible. I am about to start cycle 12 - with tumour markers still dropping I am really hoping that I will stay on the combo for a very long time. However I am re-thinking that work might not be the best place to be spending my healthy time - it really helped me deal with a stage 4 diagnosis to begin with but nearly 12 months in family friends , things I can do to make me strong - these are the things I want to spend time on . As a consequence working on an exit plan - I am 56 but planned in the past to work forever because I loved my job, however who ever said I wished I spent more time at work - we have 3 lovely sons and gee I want to support them. So 16 weeks to go - I want my bonus before I leave - tee hee
Idajakoc - loving your posts -always caring - my husband is Italian and we travel to Italy regularly to see family. So glad you are doing so well.
Kanga roo - you have inspired me on the wig thing - thank you
Best wishes to all
0 -
Hi to all,
Just stopping in to report that my first scans since dx were favorable. My MO said I get an A+.(whatever that means) I enjoy reading each of your posts and am thankful I found you all.
0 -
hello ladies..
Thank you everyone for your kind words of support. Hope- Im so happy for you! Kanga- your wig looks great! Im glad you feel more confident wearing it.
As for my mom.. she did CT scans and TM.. results of TM tomorrow and od of CT next friday. She went through 3 cycles on 600mg. I feel very scared and anxious and cant help.myself since I have noone to talk to about this.. Im being brave in front of her, ofcourse.
I just really hope her TMs will be at least a bit less than before therapy. She had CA 15-3 : 54 that time. Her markers were rising very slowly before they decided to take Petct when she found out about MBC.
Im sending you best wishes and hope to hear some comforting word because I feel very scared really. Tha k you and best to all of you..
0
