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

@dah925 it is so good that you are responding to treatment. I am on cycle 8 of letrozole/kisqali - I am getting scanned at the end of this month. My tumour markers all came down and CA15-3 seems to have settled on 12. Next bloodwork will see if it was a pause, or we have hit baseline level. My tumours seem to have gotten a bit smaller but my onc isn't really interested in them at the moment - more the bone mets.

I had some good news today in terms of my CA 15-3. My saga began with AC-T chemo last October, before it was determined that I was stage IV. My CA 15-3 was incredibly high, but after chemo, it dropped almost to normal range. Now, after two cycles of Kisqali and Letrozole, it is in the normal range, 31.8. That is something to celebrate, even though I know that these numbers can turn around at any time. Unfortunately, my neutrophils are borderline, so I hope I can stay with 600mg of Kisqali. I really don't want to drop down to 400. CT scan next month, so I hope it supports this finding that my cancer is dying off.

Good morning,

My 4th cycle with Kisqali was a bit too difficult on my heart. Although my ECGs were good the first two months, I had a prolonged QTC interval. I stayed for the whole cycle wondering if I should go check it or if I'm just stressed, then I turned out to be the medication. The doctor told me to stop (I had only 3 days left anyway) and do another ECG on Sunday and we check, but he mentioned we will probably lower the dose…it was annoying and worrying all these days, I felt something was really wrong with me heart and I'm a little upset I didn't go to check it right away :(

@tougholdcrow it is the norm for rural Australia. Some people are waiting 3 months for scans. I am very lucky. Mine are more difficult to interpret cos my "innumerable" bone mets are all sclerotic. It is harder to see if there is progress, stability or regression. I am expecting to be told it has progressed based on the doleful looks of the three radiologists as I got off the table from the bone scan where I had been lying trussed like a chicken ready for the oven. For some reason they really wanted my hands included in this scan. I have some thoughts about why they might want that but will ask onc when I see her. But if I see one more ct scan report that tells me I have an IUD, I think I will scream. They all seem more interested in that rather than anything else.

On the down-side, I go into every appointment with onc cold. To be clear, she is very good and has a wonderful reputation, but I have no data, including bloodwork to inform any questions I might have, and she only tells me what she wants me to hear. As I am a control-freak, this drives me crazy. Just lately she has only been telling me about CA15-3 - which seems to have levelled out at 12. She won't talk about any of the other results - just says she is happy with them and then looks me in the eye and asks, "how are you feeling". I try not to fall about laughing as I suspect part of it is because I know I am not getting enough protein with this eating thing I have. I will get all the bloodwork details when I go to GP in early July - it is the only way I can see them. In fact, for the past 12 months, I think I have been an onc's dream - very low protein, calory intake significantly reduced, low insulin resistance, no alcohol, exercise regularly, no side effects to speak of, and no medications other than femara and kisqali. Although at this next appointment we will probably have a discussion about prolia/xgeva that neither of us will enjoy.

I take the view that the disease will do what the disease will do, and I value these days of feeling better than I have in years. I just finished a glute and leg exercise session and while perspiring freely, am feeling no aches and I honestly think the sessions help my back - I am far more flexible now.

@radiation_cinderella I am sorry to hear about your heart problems. Remember that other members have reported very good results on the lower dosage of kisqali. In your pocket for a good outcome.

😀

Hi @tougholdcrow, thank you so much for your kind thoughts. I got back home late last night. I have to travel a while to get to appointments and then we go shopping. The scans show "less avidity" throughout skeleton, no progression and my femurs are apparently greatly improved. I am told even trainee radiologist could see the difference throughout my skeleton. Yay - I have dentist check-up this morning but that is just to ensure healing is occurring properly.

My onc is beside herself - the good scans, the tumour marker that went down again - now 11 and the neutrophil level that is the best it has ever been at 2.6. Go you good thing cacao. I take cacao rather than the chocolate and exercise - no stairs in my blood collector's building, and I have grown to love my early morning cacao and almond milk. While I love chocolate, I couldn't face Lindt in the morning and cacao is the main ingredient in Lindt dark chocolate. Onc even gave a great big tick on the results page that she gave me.

She also said that I don't have to take Prolia/xgeva given the really good result and how well I seem to be responding to treatment. She doesn't want to change a thing. She has given up on asking me if I feel pain and sneakily asks if I need another script for Pelaxia. I just said I have only used it for the dental pain and even then it gave me a headache so - no thanks.🌻🌻🌺

@malleemiss251 Congratulations on the great results!

@tougholdcrow, yes - on we go to the next day. I quite like the saying of the navy SEALS - "the only easy day was yesterday." It seems to fit our situation and I must say it gives me the incentive to step into the new day renewed and ready for the good times and bad times. And I will repeat that saying a lot today as I mount an assault on my oven and clean it. Now I have some skeletal flexibility back I shall gather my cleaning gloves and materials and by the time I am finished that thing will shine like it is brand new. Normally after a task like oven cleaning, I enjoy a nice prosecco, but with the eating/alcohol thing still active, I shall enjoy a lovely earl grey or lapsang souchong tea.😎

airlinegal, welcome here. Kisqali has been very easy on me, and long may it work for both of us.

@airlinegal best of luck with Kisqali 🤞🏽I had to reduce the dose because of QT prolongation, which is really upsetting because it has been great with my hormonal treatment and the PET scan showed regression in a short period of time. I started it second month after hormonal treatment and as I was recovering from my back surgery so looking back, those difficult first few months could have been many things at the same time.

I hope your body feels fine with it, and I hope it works with you and you see the results soon ❤️

@dah925 I did have a lymph node in my upper thigh light up on a pet scan. It disappeared on the next. I hope you have a similar experience.

Hello ladies,

How has your experience been with hair loss on this medicine? My concern is that! . I don’t want to loose my hair should they at some point decide to change me. Ibrance is still working thank god. I just know they are so similar in side effects. Thank you very much

@micmel, I have been on this combo for 11 months now - unfortunately my hair has been on the thin side since my thirties, so I cannot say if the drugs are having any real effect on my hair, although I can say no bald spots, yet - touch wood it continues.

@micmel I haven't had any hair loss on this combo.

The kisqali has been a rollercoaster since I started treatments at the end of January (just after my stage 4 diagnosis). I had side effects like nausea, rashes, mouth sores, and low neutrophil levels. Dropped from 3 pills per day to 2, and now down to 1.

I had bloodwork done a few days ago and saw that my 15-3 levels have gone up again, after declining for awhile on the higher doses. Sigh…

I am due for a CT scan in August and will see the oncologist after that. We'll see what happens with the kisqali. I really wanted it to work.

Side note: getting some kidney symptoms, still trying to find the cause (only symptom I saw is foamy urine). That's been showing up for a few months. So far the GP has ruled out a UTI and it isn't diabetes. An ultrasound indicated no damage to the kidneys or bladder. Blood tests show high creatinine and EGFR… not that I know what those indicate. I've been referred to a nephrologist (kidney specialist) for more tests, so I'm waiting on that appointment. At this point, I have no reason to believe the kidney issue is related to the cancer treatments, but it seems to me to be a wild coincidence if it isn't related.

@mjconnor I'll be sure to post an update to this thread when I get some more info from the nephrologist.

@airlinegal,

Although you may be post-menopausal, my understanding is that the hormone therapy you are likely on now is an even more severe form of "menopause" than occurs naturally. In other words, the deprivation of estrogen to your body where estrogen receptors reside everywhere is even worse now than when one just goes through it naturally. So what you are probably experiencing is indeed the very same type of hot flash you experienced previously.

My wife's oncologist prescribed her Cymbalta off-label for this. It's a mild anti-depressent, but has also been found to be quite effective at not only treating hot flashes but also the joint pain associated with estrogen deprivation. My wife hasn't had a hot flash since she started taking it, though she says she still has "warm" flashes, and her joint pain is significantly reduced as well though not completely eliminated like the hot flashes. It can make some people sleepy and others not able to sleep so she takes it on the lowest dose. Might talk to your doc about this at your first follow-up.