Ribociclib/Kisqali with Letrozole - Any one on this combo?
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@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.
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@malleemiss251 Thank you. While I am not familiar with CA15-3 it seems as if you are going in the right direction. I am going to ask my oncologist about CA-15 and really appreciating you mentioning it. So much to learn . . . Best of luck with your scan at the end of the month!!!
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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.
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What excellent news @tougholdcrow. I hope scan goes well for you - I had my latest scans two days ago and onc appt on Tuesday. Until then I will not know what the scan reports say. Neutrophils can be a real problem, but lots of people have reported good results with lower dosages of kisqali.
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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 :(
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@malleemiss251 That's a long time to wait for scan results so I hope you will not be too anxious with waiting. Keep us posted.
@radiation_cinderella So sorry to hear about these difficulties with the stress on your heart! You are way too young for heart problems so I can see why you didn't get it checked right away. It's a funny situation we're in, where we don't know what's significant and what's just the usual wear and tear. I hope the docs get it figured out.
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@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.
😀
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@malleemiss251 I came here to wish you smooth sailing today at your appointment. (I did have to look at the time in Oz since it is still Monday here.) It sounds like we have a lot of the same good habits. Anyway, I hope your fears are unfounded and that you are progression free. The radiology techs always have doleful looks, don't they? I always want to say, "Open the pod bay doors, Hal."
I am on an extra four days off of Kisqali so hopefully my neutrophil count will be back up during the next cycle. I may be with you on the lower dose, @radiation_cinderella, though I hope not. I like this idea of running up and down the stairs right before the blood draw and eating four squares of Lindt chocolate four hours before. . . . I wonder if it will work!
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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.🌻🌻🌺
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@malleemiss251 those scan results sound great! So happy to hear!
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@malleemiss251 Congratulations on the great results!
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@malleemiss251 That is inspiring! On we go . . .
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@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.😎
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I start Kisqali tomorrow….a little nervous what reaction I will have to this med. I was on Ibrance for 8 yrs…so thankful for that long of a time. Last pet scan I had my shoulder to light up. Have been reading all your comments about taking this med….thank you for being here and all the info you have given
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airlinegal, welcome here. Kisqali has been very easy on me, and long may it work for both of us.
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airlinegal - I have been on Kisqali/Letrozole for 9 months. I have tolerated the medicine very well. I have had some very minor skin irritation and had low neutrophils one month that bounced back on their own . Someone on this board suggested eating dark chocolate prior to bloodwork. Wishing you great success on this drug.
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@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 ❤️
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I just had a PET Scan. 9 months on Kisqali/Letrozole combo. My breast tumor and spine tumor have both shrunk more and have lower SUV. Also, no new sights. There is however a slight SUV increase in abdominal node and thoracic node. The final findings do not mention the nodes. I see my oncologist tomorrow night. Has anyone else had this experience with node SUV on PET Scan?
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@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.
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@tougholdcrow Thank you for letting me know. Very much appreciate you . Wishing you great success on your treatment.
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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
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I am grabbing a spot here because I was recently prescribed Kisqali, but with anastrazole, and for stage 2 with "only" regional mets, which I am understanding was just very recently approved in the US. Is there a thread like that someone can point me to? I'll keep looking and sending you all my best wishes.
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@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.
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thank you and i hope it continues successfully! Hugs
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@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.
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@micmel, I have been on Kisqali and Letrozol for 14 months and my hair has definitely thinned. I looked for a hairdresser who would be gentle with my hair and she also gave me ideas on how to make my hair fuller. Good luck with the Kisqali - I hope all goes well!
@doodler, I was very interested in your post as I too am stage IV de novo (diagnosed 5/23) and similarly have had to go from 600 mg to 400 to 200 mg. I have spent time recently researching the impact of Kisqali on kidney function. The info accompanying the drug doesn’t mention it but other places I found info linking Kisqali to a mildly elevated chance of kidney failure. My creatine has gone high and my Egfr is decreasing which is a sign of kidney impairment. I would be very interested in what the nephrologist says if you will share I suspect I’m headed down a similar path but haven’t yet discussed it with my onc.
Sending good thoughts to everyone who is fighting this awful disease. I definitely see reason for hope in many of the posts
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Have gone back several pages of your results with Kisqali and it has helped. This is the first treatment and haven’t had bloodwork yet. I am on the last week of the 21 days and started with what seems like hot flashes every afternoon. Feel like I have a high fever but when taken do not. It is scary. Read all the side effects and not sure what this is. Years ago when going thru menopause..I guess maybe it feels similar. Anyone else experience this in the beginning?
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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.
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@airlinegal I had a hot flash during my first week on Kisqali and it shocked the heck out of me, given that I went through menopause some years ago. My onc said that I'd be feeling like a second menopause. Whoopee! But as I always think, it's better than the alternative.
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