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…3536384041…47

Comments

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi everyone

    Hope every one is keeping well.

    I had some good scan results early August which showed further shrinkage. My Ca153 marker had also gone down from 592 to 477.

    Ive just had my blood results from last week and the marker has gone from 477 to 462.

    This has frightened me as they have only come downn a small amount, I'm wondering now if the treatment is starting to stop working.

    I know many don't follow markers but I do as mine were so high to start with.

    Has anyone had this experience? This has frightened me a little!



  • Actionaunty
    Actionaunty Member Posts: 15

    Hi Girls, I am Beverly and I was diagnosed Dec 2020 with Stage 4 breast cancer with metasteses in liver and pevis.

    I went to doctor after three bouts of diarrhoea and thought I had IBS.  After bloods and CT scan was hospitalised for more tests and then diagnosed.   I had breast cancer in 2000 successfully treated with lumpectomy and 30 zaps radiotherapy, declared 'cured'.    Real shock that it came back in other breast so sneakily.  I looked pregnant with ascites and after fluid drawn off I had lost 20 lbs.

    From Jan 2021 I am on Palbociclib with Letrozole and Denosumab together with high protein diet to increase weight.  Initially the side effects were difficult but I have tried lots of things to mitigate and now have them under control, all except sleep disturbance.  On consultants advice I take Valerian at night with Temazepan and can count on the fingers of one hand the full nights sleep I have had since Christmas!!!   It seems that Letrozole is the sleep killer.  Does anyone else have this problem?

    I am immensely heartened that many of you have been on the medication for some time and are surviving, that is the name of the game.  A positive outlook also helps and  I will not be beaten.  Regarding the comments on skin irritation I have tried many creams and find that anything with perfume makes it worse.  I now use Lubriderm [can get it from Canada] and that works for me.  I absolutely agree with the comment on not washing hair too often and use plenty of conditioner.

    Wishing us all well!!


  • kanga_roo
    kanga_roo Member Posts: 302

    Hi Hamer,

    Those pesky CAs do fluctuate up and down, but a month between blood tests probably won’t produce great changes. In my experience, 3 months will show a trend up or down. The fact they are still trending down is good news. Sounds like the kisqali is working for you.

    Hi Beverly, I can identify with your sleep problems. I tried different medications too, but felt like a zombie through the day, so gave them up. I go to bed and read till I feel tired and am happy for any sleep I get. I think sunshine plays a part in our body’s rhythm and try to get out doors for a while every day.

    I’m interested in your comment about a high protein diet to help increase your weight? I’ve been on keto/high protein since diagnosis, and dropped kilos… which I needed to do. My sugar and cholesterol have normalised and I have become an expert at cooking chaffles, lol!

    We are just entering Spring here in Australia, and the blossoms are coming out. I have buds on my rose bushes, and the sky is blue! Life is good… sending hugs to you all

  • Actionaunty
    Actionaunty Member Posts: 15

    Hi Kanga Roo

    Thank you for your reply.  So far I am on Temazepam and Valerian at night and still cannot get a good nights sleep.  Since Christmas I have had 4 full nights and I used to be a good sleeper.  I think the Letrozole is the culprit.  I don't know about you but I cannot function well on two or three hours sleep, I am a zombie without the sleep!  

    However, on the suggestion of my oncologist I have conquered the hot flushes with Evening Primrose Oil.  I started on the recommended dose and increased it until it worked.  I take the Letrozole together with 2000 EPO and  it works for me.  I have to say I am very fortunate with my oncologist - she is wonderful and I cannot praise her too highly.

    Regarding high protein diet - started with eating 3 hourly, small meals of meat [I was a fishetarian], with high protein snack bars, nuts and chocolate as well in between meals. I am interested that on your keto diet you lost weight.  I now have to cut down as I don't want to put on any more weight.  I think my metabolism is rubbish!  However, I have started back at Pilates classes with my teacher for 20 years and I think that will help me to get physically stronger and hopefully lose some of the excess I have gained!

    To make matters worse my husband has failing kidneys and has refused dialysis so as I get stronger he is getting weaker.  My oncologist says I am not to be his carer as I must look after myself, so I am now getting help in the house once a week.  

    Keep Well and keep Positive.

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi Kanga

    Thanks for your reply. Yes I've just realised that the marker result I had beginning of August was for a 6 week period. I think I just panicked yesterday with the small decrease, but as you say they have still gone down which is in the right direction.

    I'm just praying kisqali keeps working as I am tolerating it really well and able to do most things normally.

    Hope you are keeping well still.

    X

  • Actionaunty
    Actionaunty Member Posts: 15

    Hi Girls

    I have been reading some other topics and posts and definitely identify with 'chemo brain'! I still have pretty good memory but words sometimes escape me - I know the words, I know the letter they begin with but cannot get the actual word.  On Sunday we had lunch out with family, a roast with those things that you put gravy on, round batter baked in the oven and for the life of me I could not get the name until days after.  Does anyone else have the same problem?

    Wishing you all a good weekend.  Bxx

  • kanga_roo
    kanga_roo Member Posts: 302

    Some time ago I started a thread calle keto. I hope this link takes you there… lots of good info.


    https://community.breastcancer.org/forum/58/topics/870653?page=3#post-reply

  • Actionaunty
    Actionaunty Member Posts: 15

    Many thanks Kanga - will look and try! 

  • ncyogi
    ncyogi Member Posts: 45

    Hello all!

    I just finished my 2nd cycle and my neutrophils continue to struggle so I am taking an extra week off. I know this is a common problem. I am already on 400mg so I'm not sure a dose reduction is the next move. My questions for you... Did your bodies adjust? How long did it take? Do your doctors insist on being over 1.0 for neutrophils? Did you change your dosing schedule... ie. 3 weeks on, 2 weeks off? I'm handing Kisqali very well (except for neuts) so I really don't want to switch.

    Any other info or suggestions? Thank you!

  • kanga_roo
    kanga_roo Member Posts: 302

    Hi Yogi

    Yeh, neutrophils go up and down… after being on kisqali for over 3 years I can tell you it is a bit of a roller-coaster ride, but hang in there! I’d be looking at a pattern over a few more months to see if anything changes.
    You might want to do some research on what foods may boost your blood count. For me personally, I eat 1/4 cup of yoghurt every day.. some say yay/nay, but is seems to help me. I also live on a keto/high protein diet which has all sorts of side benefits.

    Every 6 months I have taken an extra week off the kisquali to have a bit of a break.. my bloods generally normalise during that time, so it is just a matter of experimenting to start with. I hope things settle down for you… besides that, sounds like you are on a good start with this amazing drug

  • cure-ious
    cure-ious Member Posts: 2,891

    Hope y'all are following the good news for Ribociclib out of ESMO 2021- improvement in overall survival is now over a year, numbers keep going up with time ...

    updated results from the Phase III study showed Kisqali and letrozole provided a statistically significant and clinically meaningful improvement in survival compared to placebo plus letrozole. The Kisqali combination provided a median 63.9 month survival compared to 51.4 months for the placebo. Additionally, Novartis said following a median follow-up of 6 and one-half years, the median OS was over one year. Data from the MONALEESA-2 study showed that after five years, patients treated with Kisqali, a CDK4/6 inhibitor, and letrozole had more than a 50% chance of survival.

  • kanga_roo
    kanga_roo Member Posts: 302

    Cure-ious, you made my day posting that info! What hope this drug has given us all. I found this link, not sure if it is the same one you read, but has the info. Wow! Let's hope it keeps working for us all!!!


    https://www.cancertherapyadvisor.com/home/news/conference-coverage/esmo-2021/breast-cancer-ribociclib-improves-survival-treatment-risk/

  • forza
    forza Member Posts: 150

    just another *wave !!! Don’t want the lovely people here thinking I’m gone.

    Still stable , sometimes I think it was all just a bad dream …

    Strength to us all x

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi everyone

    Once again I am in turmoil over these Ca153 markers!

    I had my bloods done on Friday ready for my Ribociclib this week. Bloods were good and everything in normal range so I collected my tablets.

    I rang today for the Ca153 result as it takes longer and the nurse said it has gone up from 462 to 498. I know it's not a massive increase but as its going the wrong way I am now really worried the treatment has stopped working.

    I am due a scan at the end of Oct but I will probably spend the next 3 weeks pulling my hair out with worry.

    Can these markers still go up and the treatment is still working?? Or am I kidding myself?

    Thanks

  • kanga_roo
    kanga_roo Member Posts: 302

    Hi Hamer,

    I know how stressed you must be feeling, but don’t let those test markers get you down. I read somewhere that quite often targeted cancer treatments cause “shedding” of cancer cells into our blood and is a process of elimination, often causing higher readings. There are lots of articles on the internet, like the one I have linked below.

    https://emedicine.medscape.com/article/2087535-overview#a2

    A transient rise in CA 27-29 levels can occur during the first 4-6 weeks of starting therapy; [5] however, this does not usually correlate with disease progression and should be interpreted with caution.

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi Jackie

    Thanks for replying. Yes I've been pretty stressed since yesterday. I think I may have to stop tracking the marker as it's caused me to really worry. I know I should wait for the scan but my brain is doing overtime as you can imagine.

    Yes I've heard that this can happen but when I checked the Internet I couldn't find much to back it up, maybe I looked in the wrong place. Thanks for the article.

    Thanks for the reassurance.

    Hope you are doing well.


    X

  • sunnidays
    sunnidays Member Posts: 165

    Those tests don't appear to work for me, but I do know all sorts of issues noncancer related can increase the numbers that is why they are not used as a diagnostic test.

  • ShyViolet
    ShyViolet Member Posts: 5

    Hi ladies, I haven't checked in in a long time, wanted to update. I just had my 9 month scans, mixed results. My lymph nodes have shrunk some more, all my bone mets are stable except for one in my sacrum and my breast tumour has increased by 4mm. The sacrum spot is also where I had a small fracture show up at my 3 month scan so not sure is that is effecting things. So not great news but not super bad either. My onc is letting me stay on Ribo and Letrozole for 3 more months and we'll do a bone scan and CT at that point. I'm also concerned that my tumour markers have gone up. I know they're not reliable but they were bouncing around the 30-60 range and this monday they were 97. So that has me a little freaked out. But at diagnosis I was only at 53 or something and everything has shrunk down quite a bit since then. I also go my 3rd dose of vaccine this month and I had a cold at the time of my scan so not sure if things can fluctuate from that. I think I read at some point that inflammation can affect tumour markers. Anyway, not sure what's going on but it;s stressing me out. My onc said my scan is kinda iffy. Nothing straight forward enough to switch treatments immediately which I'm happy about. I've heard some ladies in the Kisqali facebook group have had a scan with tiny progression like mine and then scans after that were stable so I'm crossing my fingers this will be the case for me as well, I'm not ready to fail my first line yet.

    And if anyone is wondering what comes next, he suggested Xeloda or Taxel. I asked about Fulvestrant since I've read that some people that have grown resistant to AI's have some results with Fulvestrant. He would rather do Xeloda first then try Fulvestrant after that one. The reason I want to put off chemo is it disqualifies us from many clinical trials. He's also going to look into clinical trials and see if anything matches up with me. And lastly I asked about radiating just that sacrum met since it's the only one showing signs of progression.So that's a possibility as well. So I have more reading and research to do before my next appointment in December.

  • Actionaunty
    Actionaunty Member Posts: 15

    Hi Yogi

    I agree with Kanga,  my neutrophils seem to be on a similar path to hers. Palbociclib 3 weeks on 1 week off for 6 months, then need 2 weeks off when neutrophils fall below 1.0. My consultant says this is normal so please do not be stressed about it.   The medication supresses the bone marrow as well as skin, hair, etc.  Sometimes platelets low too so be careful not to cut or bruise yourself.  

    I had the booster pfizer last Friday and it laid me flat over the weekend. We all have to be kind to ourselves and rest when necessary. Best wishes to all.   

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi everyone

    I noticed this link on one of the UK charity websites. I have signed and just wanted to share and hoping you will sign too.

    I totally understand that this drug is v early stages but still it gives me hope.

    https://chng.it/F8hcdYVfGy

    Thanks

  • traii
    traii Member Posts: 379

    Wow Hamer1, I just read up on ErSO and this sounds AMAZING.

    Hopefully the human clinically trials start soon

    https://www.google.com/amp/s/www.labroots.com/tren...


  • Hamer1l
    Hamer1l Member Posts: 36

    Yes it's fascinating!! It's sounds very promising but I understand there is still some way for it to go. But new drugs have to start somewhere!

    I think the petition has been started by a lady in Australia as her daughter has had stage 4 for 10 years now but is slowly running out of options.

    I will certainly keep sharing.

    X

  • kanga_roo
    kanga_roo Member Posts: 302

    Got my results back, all stable, markers sitting at 31…don’t need any more scans till late January.

    Shy thx for the info about what comes next… my Onc doesn’t want to commit to anything, but nice to know what is around.

    Hamer nice to know there is are still people out there looking for solutions!

    I’m booked in for my 3rd covid booster shot as my Onc said I continue to be in the high risk group.

    Halloween coming up, so my kids going out to party and I get the grandkids (little horrors) for a sleep over! Things like this make life seem more normal..

    hope you are all doing well

    Cheers,

    Jackie

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi Jackie

    Congratulations on your stable scan, fantastic news.

    I had my 3rd ct scan last Thursday so now waiting for results, they are due 9th November. I'm sooo nervous /anxious. I too gave just had my covid booster, I had Pfizer this time. Arm ached a little but nothing too bad.

    I have just been out with my girls for Halloween who are 6 and 8. They love it!!

    I will update you all when I get my results.

    Take care

    X

  • sunnidays
    sunnidays Member Posts: 165

    Hi all

    I was just wondering if anyone has had vaginal bleeding after a few months on letrozole? I had a fibroid removed when on tamoxifen and two years later had bleeding again the gynecologist did a hysteroscopy and an ultrasound and found nothing.

  • Actionaunty
    Actionaunty Member Posts: 15

    Hi Sunnidays

    I would suggest that you tell your consultant as bleeding from anywhere is to be investigated.   

    I had nose bleeding after a few months on letrozole and palbo and started taking iron capsules 100mg per day together with 1000mg vitamin C per day and that has helped. No more nose bleeds.   We need to mitigate the side effects of these serious meds as much as  we can.  Hope you get it sorted out very soon.  

    As we all have compromised immune systems we need the covid booster and continue to wear masks when out and about.  Last week I was on a bus [with mask on] and a woman sat next to me without a mask on.  The bus was half empty and I asked her politely to please wear a mask or sit somewhere else.  She asked if I had been vaccinated and I said yes.  She then said I would be OK.  I asked her a second time and she reluctantly put on a mask.   We really need to be firm about protecting ourselves. 

    Take care all  with very kind regards.

  • sunnidays
    sunnidays Member Posts: 165

    I did mention it and they just said to keep an eye on it, I haven't had it again apparently the lack of estrogen can cause change and this can cause bleeding, after looking at my information it's only a year ago I had the hysteroscope and ultrasound. I am not sure if I am happy with that and if I should push for a biopsy.

    Years ago a doctor suggested I take low-dose aspirin which I know can cause someone to bleed more so I am going to stop that for a week and see.

    I am in for an appointment in 4 week so I am going to discuss it in more detail with the oncologist then.

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi everyone

    Just thought I would share my results from my 3rd CT scan. I had the results today.

    It was good news as everything is stable, no new lesions and no spread. Phew!!

    My Ca153 marker has gone up a little again, Sept they were 466, Oct 498 then early Nov 553 but they said this does not worry them as scan was stable. Anyone had this before?

    Thanks

  • traii
    traii Member Posts: 379

    good news Hamer

    My markers fluctuate and my oncologist says it's very normal. I'm due for my CT and bone scans on the 24th of this month.

    Hope everyone is doing as well as can be and great news seeing stable results by many x

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi Traii

    Thanks.

    Good luck for your scans on the 24th.

    Do yours fluctuate as much as mine? Mine went up about 30 points then 50 this month.

    I thought if they do fluctuate it should be just by a few points.

    These markers really bother me!! I need to try and forget about them.

    X

Categories

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