Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Ribociclib/Kisqali with Letrozole - Any one on this combo?

1…2122242627…48

Comments

  • forza
    forza Member Posts: 150

    hi Kanga , ouch ... more possible side-effects to look out for ?? I have 2 kittens here with recurring pneumonia , poor things , definitely lung issues there , life can start off shit sometimes. This time I'm making a list of questions for my next hospital visit. The oncology/hematology people are always obsessing over rashes , diarrhoea and lack of appetite , seeing I don't suffer any of those they stop asking me further questions.

    Thanks Ida , so only one more week of looking like I walked into a door ?? :D:D Crunchy sourdough toast ...... can't wait !!!!! Not forgetting the oncology team decided to wait with the Xgeva anyway so I feel like I've gone through all this for nothing. I asked : why ? They said : don't worry , it can wait ?!?! Clueless me.

    I have no idea what everybody is talking about with studies etcet .... I'm getting all these drugs for free on our national healthcare. And there's not even a price tag on them so no idea of cost. However a simple box of ibuprofen in the pharmacy for a headache costs me 10€. You can't make it up. And I'm NOT complaining. For the Americans and Australians here , us european countries must seem crazy.

    Sunny september hugs


  • laine615
    laine615 Member Posts: 102

    Hi all,

    Hope everyone is enjoying the weekend. It's 95 degrees here( Tennessee, USA)with a heat index of 100. Way to hot for me but glad the sun is shinning.

    Ida, maybe you're so calm because you know that no matter what the scan results say, you can handle it.

    Jennifer, the European health system is amazing. It doesn't seem crazy at all. In my opinion every country should adopt the Euproean system. Many of us in the USA are fighting very hard for universal healthcare(the equivalent to the European system) I pay $15,000 of my own money every year, on top of the $600 a month I pay, before I'm covered at 100%. I am blessed to be able to. My heart breaks for those that can't. Our healthcare system is very broken. Many people in my profession( Mental Health) don't even take insurance. If you need mental health care you most likely have to pay between $450 to $150 per visit. My practice is one of the very few in my area that will take insurance. It's a very broken system. I pray we are able to fix it soon.

    Love to all,

    Laine


  • laine615
    laine615 Member Posts: 102

    Hi everyone,

    I wanted to share the news of my breast MRI and CT scans with you all.

    After 6 cycles of Kisqali/Letrozole, I have reached NEAD for now.

    To anyone just starting or about to start, this combo has been effective and very easy to tolerate for me so far. There's every reason to believe it will be the same for you.

    Love to all,

    Laine



  • BrisVegas_Gal
    BrisVegas_Gal Member Posts: 21

    that’s great news Laine. Stay well

    Annie

  • Operahouse
    Operahouse Member Posts: 44

    Congratulations Laine 😀

  • laine615
    laine615 Member Posts: 102

    Thanks Annie & Opera!!😊

  • forza
    forza Member Posts: 150

    happy for you Laine !!!

  • laine615
    laine615 Member Posts: 102

    Thanks Jennifer!! I hope you're doing well and healing from the extractions!

  • kanga_roo
    kanga_roo Member Posts: 303

    Sending gentle hugs to everyone,

    I’ve been reading through the posts, and seems everyone is progressing well albeit a few sideFX.

    Ida, have you got your test results back yet? Hope everything is OK

    I’m feeling pretty normal at the moment, in fact if it wasn’t for the daily reminder taking my pills, I would forget about cancer....until my next scan!

    I have some good news though. As you know hair loss is a SFX of this combo, and I lost a lot around the 10 month mark. I never went bald, just thinned. Here I am at 20 months and it seems to be growing back and thickening up again. Of course my biggest fear is that the combo may be failing, but I will ignore that and make hay whilst the sun shines!

  • BrisVegas_Gal
    BrisVegas_Gal Member Posts: 21

    Hi Kanga

    I so understand that you are worried but try not. I had some changes after about 18 months of treatment when my hair stopped thinning and went curly where it was previously dead straight - that was last Christmas and it's stayed curly and the couple of scans I've had have continued to show no progression.

    I'm worried lately about progression too. I've had to stop the denosumab injections for the last 3 months because of suspected jaw necrosis. After a plethora of scans and specialist consults it's been decided it's just a slow healing process after a root filling a year ago. My goodness it was a bit of a roller coaster for a while there. But my worry is in that time the pain in my hips and pelvic region where the cancer is has become almost unbearable. I'm worried that this means progression but maybe the denosumab stops the pain in some way. I don't know. Have any of you guys experienced this scenario?

    I have a 100mg fentanyl patch and endone for break through and I've needed up to 60mg each day lately. All that medication makes me sleepy and I don't want to do much with my family and friends. I see my oncologist on Wednesday so will hopefully get some answers.

    Oh Kanga, I started this to reassure you and I've made it all about me - sorry.

    Take care everyone and any advice etc will be much appreciated

    Annie

    xx

  • laine615
    laine615 Member Posts: 102

    Kanga, glad you are feeling so good. I hope you continue to feel that way for years to come. Happy to hear about the hair thickening as well. Enjoy the sunshine!!

    Annie, after I started xgeva(not sure if thats the same thing you were on) my bone met pain stopped. So maybe it does give pain relief in some way. I'm sending you good vibes. Wish I had more insights to offer.

    Enjoy the weekend everyone. It's still 95 degrees here🥵 but al least the sun is shining.

    Hugs to all,

    Laine

  • BrisVegas_Gal
    BrisVegas_Gal Member Posts: 21

    Thank you Laine

    Denosumab is also called Xgeva, so that is great news. Very reassuring. Thank you for your input

    Annie

  • laureninphx
    laureninphx Member Posts: 138

    Hello all.

    I just got my official stage IV diagnosis today. She mentioned Faslodex/Kisqali combo could be what we start with because I’ve already been on tamoxifen and anastrozole.

    Is Faslodex in the same class as letrozole?

    I haven’t read through the whole thread yet but I’m sure I’ll be seeing more of you all from now on. I look forward to getting to know you.

    Lauren

  • laine615
    laine615 Member Posts: 102

    Hi Lauren

    I'm very sorry you have to be here but glad you found us.

    Faslodex is not in the same catagory as letrozole. If you've been on an AI and Tamofaxin and still progressed, they may want to give your cancer something it hasn't seen yet. I hear it has been very effective for many people.

    I hope you are doing ok and please know we are here if you need to talk, vent, ask questions, laugh, or cry.

    Hugs to you,

    Laine



  • Idajakoc
    Idajakoc Member Posts: 71

    Hello everyone!

    Laine I am really happy for you results!

    Jackie try to keep those thoughts as far as possible even tho I know sometimes they find their way! I am on my 24 or 25 month(I lost track, I read it on the paper eveymonth but my brain play a lot of tricks when it comes to memory) and still find myself worried for nothiiing sometimes.

    LaurenI am sorry you had to join us! I really hope this medication helps you! Feel free to share and ask!

    As for my scans they are stable! I am really happy. Still waiting for the genetics test tho. Even tho I dont know what is going to change!

    Hugs for all of you!

    Ida

  • forza
    forza Member Posts: 150

    Autumn finally started here ....... after a couple of very warm days , rain , yippie !! I'm a winter person at heart.

    Firstly I wanted to apologise , I read the posts and by the time I get to the reply square I forgot what was written by who. You know I wish you all well , some of you cheer me up , good scans make me happy , sad another person had to join the club. To be honest , I never have anything interesting to add anyway. Being "de novo" , there is still so little I know about breast cancer. I still don't quite believe I have it myself sometimes. Never been through mastectomies or proper chemo. Ach. Also really don't feel like looking into it properly. Been very lucky to end up here on my first google searches earlier on and then I stopped googling. The booklets in hospital are all of the pink ribbons and balloons variety , it's like stage 4 doesn't exist.

    After 3 weeks I'm finally eating fairly normal again (yes , my wisdom teeth saga). My hair is definitely thinning , still nobody notices I only have half the hair I used to (which I find kind of hilarious). Why is the hair on my legs not thinning ??? :D:D:D Getting more hot flushes with every Zoladex injection. Feeling sympathy now for women going through "real" menopause. The 400 Kisqali is clearly easier on my body than the 600. But seeing I predicted my blood count all wrong last time , maybe I should not presume + news. Monday I'm having the labs and "the boring side effects chat".

    I booked a 2 week holiday next month to Norway. My parents are going to babysit my house and cats. Yes , finally a bucket list trip (1 of 2) :D Not sure if I should tell my oncology team ?! I don't want to risk being taken off the Kisqali for a month ... No idea what's the right thing to do on that one. Is it any of their business ? What could go wrong ?? Nothing's gone wrong the previous 4 months. Anybody decided on a trip and being put on hold on their drugs ?

    take care everybody reading x Jennifer

  • Lolis
    Lolis Member Posts: 294

    Hi Jennifer,

    why would the doctors take you off the pills? I went to Mexico for a week and I was taking my pills as per usual. I had to book the trip around my injection time.

    Glad to hear that everyone is doing well.

    Hugs.

  • forza
    forza Member Posts: 150

    Hi Lolis

    Don't know really , you're right. Yes why. I'm leaving the day after my monthly zoladex shot. Getting excited :)

    Reading through your dx "subtitles" , that looks like too much to deal with for 1 person. Hug

  • laine615
    laine615 Member Posts: 102

    Thanks Ida!! Congrats on your scans!! Glad you're doing well.

    Jennifer, hope you have a great time in Norway. Post some pictures if you can. We'd love to see them.

    Hope everyone else is doing well.

    Hugs to all


  • maaaki
    maaaki Member Posts: 105

    Hello, I haven’t been here for a while. I had great time on my vacation in Island with my daughter and mother. And I started second cycle of kisqali with reduced dose 400 mg since it took very long time to recover my neutrofils. More than two week. Doing great so far. I had first time problem with pain after faslodex...on the but, back and legs...probably on the place how sciatic nerve goes on both sides. It is finally getting better and next monday are my next shots. Oh well. If it works I dont mind that much.

    I am so happy with those getting great scan. A Forza I would go for vacation with the medicaments. Norway has a great hospitals in case you develop high fever-this is only think if happens you should go to ER. Febrile neutropenia but it is very very rare with kisqali not like with chemo.

    Hugs to all

    Maki

  • forza
    forza Member Posts: 150

    Thanks Maki !

    After having been on the lower K400 last cycle I just scraped through on recovered neutrophils after a 10 day break. 1,2 I think. Hasn't been this high in nearly 3 months. Definitely a lot better than after the K600. So relieved I got a box of pills again and today = day 1 again.

    Oncology told me the usual : avoiding crowds , maybe wearing a mask on the plane (I'm not Michael Jackson) , hand hygiene and Norway has great hospitals. I have all appropriate health insurances already in place seeing I'm staying within Europe if it all goes wrong , so I will try not to worry and enjoy the fresh air ! They also said Kisqali is not like proper chemo infusions so to relax Medicating

    My heart goes out to people on infusions


    Group hug

  • laine615
    laine615 Member Posts: 102

    Maki - so glad you're doing well with the lower dose of Kisqali but sorry you're have pain from the shots. Hopefully that part gets easier.

    Jennifer - Yay to the bloodwork being high enough to start another cycle. That's great news. I hope you enjoy your trip to the fullest.

    Unfortunately for me my office caught fire and all was lost. The good news is that no one was injured in the fire. It happened at 2:30 in the afternoon on Sunday. I'm in the process of trying to set up in another office. It's been a trying experience to say the least. If you all have any prayers or good vibes to send my way I would appreciate them.

    Hugs to all,

    Laine

  • vazmutena
    vazmutena Member Posts: 17

    Hi ladies! I haven't been here for a while but everything is OK with e. My liver mets were "without dynamic" in the last scans from August 2019. Next scan around Christmas. I started Kisqali/Letrozole in July 2017...I thank to God everything is OK with me. I am working at full speed, traveling a lot, etc...and I think I am overstressed, overloaded and everything - I should slow m tempo : ) Caring for 2 kids wthout any help, working all day. Uffhhh!

    Lauren, pray for you, dear! Faslodex is perfect for some ladies!

    Laine, happy for the good news! Each piece of good news here is good news for all of us!

    Ida SillyHeart

    Hugs,

    Elena

  • vazmutena
    vazmutena Member Posts: 17

    Hii again : ) I have read the back pages - Monday, Anna, Forza - so glad for your results, dears!

    Maaaki - I had also febrile neutropenia during the chemo and...I would nearly die from it. So I perfectly understand your fears. I used to take 600 mg but my New were 0,8, 0,7, 1,0, etc. So 2-3 months ago I started taking 400 mg one day and 600 mg the other dy. Then the results were also OK Then I started to take 400 mg (and I "save"one pill for me - because I am in a clinical study and it will be pver soon. So I will have pills at least for 2-3 months after the end of the study - as Ida sadi, this drug will cost about 7000 EUR per months! I don't want to think what will I do after the end of the study...).

    Hugs, girls!

  • laine615
    laine615 Member Posts: 102

    Vazmutena, glad your doing well on this combo. It looks like you've been on it for over 2 years. That is outstanding!!

    Hope everyone is doing as well as possible.

    Hugs to all

  • maaaki
    maaaki Member Posts: 105

    Hi ladies, I just want to upade that after one and half cycles my tumour marker CA 15-3 went down to normal range. I was not high it crowled over almost a year from 16 to 37 in august, but for me it is sensitive enough. I had reactivated met in TH 10 on april PetCT and in july cyber knife treatment. Even after Cyber knife the markers were going up. Since august when I stoped monitoring it every two weeks and started Kisqali it fall down to 24. So definitely it works for me. Wish that to everyone

  • Lolis
    Lolis Member Posts: 294

    Hi

    I have been off the trial for two months now and I am still receiving the drugs free of charge and will for as long as I receive a benefit (remain stable). you may want to talk to you MO about it as it is the same drug company so it may be worth asking.

    Hope they can accommodate this.

    Hugs.

  • Msm2019
    Msm2019 Member Posts: 3

    so happy to have found this forum. I was diagnosed in 2019. I was shocked to say the least. I am 43 and a mom of 2. I just started taking Kisqali/ letrozole and I feel good so far. Ill have a scan in a couple of weeks to get an accurate account of the tumors. I take monthly shots and I am scheduled to remove my ovaries soon. Haven’t met anyone with my diagnosis- so I’m glad there is this forum.

  • traii
    traii Member Posts: 379

    HI Ladies

    Just wanted to say that I had my onc appt today and results of bronchoscopy! My TMs were down & Happy, excited and thrilled to say that all was clear of any cancer cells.😁 For 2 months I was in such a dark place because of anxiously waiting for procedure and results. It ended up being a virus that turned into some bacteria infection that showed up in both lungs. Im Celebrating by going out to dinner tonight and a wine (my off tablets week 👍😁)

    Thanks to those ladies that chimed in to keep me somewhat sane🤪

    Glad most of you are all well and getting on with life as can be.

    MSM2019 Sorry you're here but we welcome you to our little group.

    I was DX Jan this year. Age 40. I'm starting my 9th cycle, working part time and have a son who is 9.

    I can say from my experience that this treatment is doable and I'm on 600mgs. having Xgeva shots monthly as well with Letrozole. I've had ovaries removed also. I'm use to the hot flushes 🤪

    There are so many in their 20+ cycle doing well and I hope we too can hit 20+ cycles 🤞

    All the best x

  • Msm2019
    Msm2019 Member Posts: 3

    Hi Trail,

    I’m so glad your recent results were good.
    Thank you for welcoming me ❤️. i am still working full time. I completed chemo treatment about 2 months ago and had good results. Thank God!

    My husband is having a rougher time than I try not to let this diagnosis define me. I have a 6 and 17 year old. My kids are what keep me going..

    My onc said a mastectomy is a possibility. Have most you had a mastectomy? I Need to educate myself on having a mastectomy with Mets. Whet are the benefits?

    Have a beautiful day!

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.