Ribociclib/Kisqali with Letrozole - Any one on this combo?
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There are so many reasons the markers fluctuate I've been told.
Mine jump around in the 30s and 40s. My onc said even if they went up by 50 she wouldn't change meds. I worry over them while she doesn't.
Markers are my main indicator but on others they dont always work.
Your scans are stable. Thats good news. Don't look into your markers too much. Enjoy the stable scan results x
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thank you for posting about tumor markers. I needed to see this right now, about variability. I just got a call from the oncology office saying that my CA 27.29 was up to 180 from 132. It’s been ranging from 130-160 and my regular MO wasn’t worried. But now she took a new job across the country and now this physician assistant just called me with the labs and told me to make sure to see my new doctor in 4 weeks, not 3 month checkup like usual. So now I’m all worried. But all other labs are great, and I feel good too.
I’d take other people stories of variable tumor markers when everything is stable….
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kkcita
I don't have CA 27.29 markers checked only the CA-15-3.
Maybe the assistant thought you were on monthly check ups opposed to every 3 months. Or perhaps new oncologist is just being precautious as she/he doesn't know you or the way your markers are. If your old oncologist wasn't worried, then try not to worry too much. There could be a number of reasons why your numbers were a little higher. Take care and enjoy being stable x
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Hi
I am newly diagnosed and still waiting on scans next week. I was diagnosed with Stage IV when they found BC mets to the colon (surgery to remove mass and part of colon). Very uncommon and they saw a few spots on my spine suspecting bone mets.
I am researching the treatment they are recommending for me. I am pre meno but will have my ovaries out soon. My onc recommended Ribociclib and Anastrozole. I know this thread is for Letrozole/Ribociclib but was wondering if anyone started out or switched to this combo.
Onc will be be testing/using tumor markers in my blood and is doing an EKG baseline.
Any info is greatly appreciated and I hope everyone is having a good Saturday,
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Hi El_Tigre
I am not familiar with Anastrozole so I can't offer any info on that combo however Kisqali is quite tolerable for me. I continue, as do many others here, to lead a full on crazy busy life. If my body tells me to rest after pushing it to its limits, I've slowly learnt to rest.
I have had my ovaries out before starting this combo too and recovered quite quickly. A little tender at the insition sites for a day or two.
EKG is common for the first few weeks from memory.
Wishing you all the best on your combo with minimal if any at all, side effects.
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Thank you Traii!
I am glad you recovered from the ovaries removal quickly and can tolerate the Kisqali/letrozole well. I had worried about the EKG because my family history is heart disease and wondered if it was based on that. I take comfort that it's a standard practice.
I am nervous starting this drug mix but looking forward to the part of actively doing something against it.
I hope you have a wonderful weekend!Tigre
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Another MBC participant let me know that there is a study going on for MBC patients taking Kisqali, Ibrance or verzinio. They are paying $175 for completion of an online survey. they will also pay your spouse/partner. If anyone is interested you can contact them directly by email or phone.
Jane is jane@rchorowitz.com
Devi is devi@rchorowitz.com
And their phone numbers are;
(212) 779-0033 or (212) 401-7902
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Hi Tigre, welcome to the group, Kisqali is a very tolerable med. Anastrozole and Letrozole are basically the same thing. Yes EKG's are standard practice for Kisqali because it can cause QT prolongation. If it happens it happens right away so they only test for this in the few few weeks.
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Thank you ShyViolet, I just had 2 week tests and ekg was just fine Whew!
tigre
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Hi I am cross posting information from verzenio thread.
I dont post often but got here so many good advises. And I was always looking for some positive news. So I would like to post one. I had started taking verzenios last december, after small progression on kisqali and faslodex (two new mets in spine) that were irradiated by SBRT in december 2020. Yesterday I had mri scan of liver (had one met in 2017, resected) and liver is clean and spine stable. So interchanging from one CDK4-6 inhibitor (in my case kisqali) to another verzenio can in some cases work. I take verzenio longer than kisqali now. Taking it together with letrozole. I already took AI exemestan as first line from 2017 to 2019 when I had one met in liver and one in spine. So this is also possibility if one drug in same classstops working not always there is cross resistance.
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Maaki! Good to hear from you and so happy you are well!
Got the results of my 6mthly MRI and bone scan - all good and my TMs are sitting on 27.
I feel like a recluse atm with the covid “let it rip” Australia mentality. My Onc is sending me a consent to get my 4th shot and I will feel a bit safer after that. She told me to try and avoid going out during my week off the kisqali as this is when we are most vulnerable.
Sending a virtual hug to you all and hoping 2022 will be a good one!
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Hi all,
I've been on Kisqali / Anastrozole since August 2021 and am so thankful for this treatment. My last two scans have shown stable mets with some reduction to bone mets and significant reduction to primary tumor. I hesitate to ask what can feel like an insensitive question, given that so many of us are really struggling with the disease, but does anyone else feel great/fine/normal or even better than ever? The menopause symptoms haven't been fun, but they've also not been devastating. I something akin to 'survivor's guilt' for feeling so great and I'm well aware that it might just be a season. I'm thankful and wondering if anyone else on Kisqali is feeling the same?
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Mexhay I am on the same combo and haven't had the worst side effects and I continue to work part-time, the side effects I had at the beginning seemed to settle down after about 9 months, so while I have had side effects they haven't been too terrible so far. The combination has worked for me my last scans were very very stable according to the nurse Practioner who gave me the results and she said the scan was very good I am very cautious about it though.
If anyone met me they would not believe there was a thing wrong with me
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Mexhay, you made me smile when I read your post. I too feel good most of the time, but have experienced most of the side effects over the journey, each one lasts for a while, and then I seem to move on. Best time of the day for me is morning to mid afternoon, so that’s when I get most of my stuff done. I do feel fatigued by late afternoon. I am entering my 5th year on this combo and am greatfulfor every day on this wonderful drug!
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Hi. I am on this combination since end Oct 2021. Initially experience nausea and extreme headache but as I adjusted my time to take them after a heavy meal (previously I took before meal) the headache subsided. By the 3rd cycle I occasionally have nausea but very tolerable. The only struggle I have was with neutropenia. I had my pet/ct early Jan 22 during my 10 weeks since Kisqali and my multifocal tumour has reduced by 50-80%. Tumour marker has never changed since diagnosis at 18.
Yes, Mexhay the menopause symptoms really isn’t fun. But am grateful that I am still able to enjoy valuable time with my family and even a short holiday trip the last Christmas . Hopefully positive result continues for all of us.
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I find if I don't eat something before I have my tablets I do have nausea, I take my tablets before bed time so even a couple of dry biscuits does the trick.
I've entered my 3rd year on this combo and am greatful for every day on this drug. I had lots of hot flushes earlier on but they seem to have gone to maybe 1 or 2 a day, if that. Hopefully it will get better for you ladies too.
I am working part time 4 days a week, we brought an onsite caravan whilst in lockdown last year so our summer has been down by the beach, on the jetski...I'm still the crazy one and only my close friends and family know about my diagnosis at this stage whilst I still look 'normal' I'd rather keep it that way, I hate pity and don't want to be know as that mum with cancer!
I've had 2 close friends pass with BC in 2021. It hit home so much😪 now my sons friends mum is battling Stage 4 BC that has mets to brain. There's a $8000 drug in Aust thats not subsidised here so we are raising funds so she can get the treatment she deserves.
Happy for all our good results and hope it continues in 2022 and beyond.
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Traii, I feel you on the hits home..I've had a few friends pass away from MBC and Pancreatic cancer. Even the movies or shows with a spouse passing hits both of us to the point of tearing up. I also have procrastinated posting my diagnosis on facebook because I don't want to be label the one with stage 4 cancer. And because I don't want to answer the same questions over and over or get pitied.
I am wondering for all the lovely ladies on kisqali + AI does the hair loss subside some after a few cycles? I am hoping it does. I started out with really thick hair in 2015 and semi thick after chemo/rads/herceptin but now dang.... I'm shedding more than our goldendoodle's tail
. I'm thinking maybe biotin and scape massages but not sure what has been working for everyone.speaking of....
tigre
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El_Tigre, I'm happy to say that my hair loss stopped after 5-6 cycles. At the rate it was going I was going to be completely bald in a few months! I really do feel almost completely back to my former self these days, in many ways.
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hi El Tigre,
The hair loss is soooo depressing. My hair fell out in hand fulls intitally until it was quite thin. I bought myself a wig, thinking I would be bald if it continued that way. Eventually it stopped, and I just have thin hair now.
There is no hair product that will really help this hair loss, so don’t waste your money. Here is my one tip… wash your hair as usual. If you use a hair dryer, put it on cool for the final part of the dry. If you don’t use a hair dryer, do your final rinse with cold water… the cooling contracts the hair follicles making them less likely to shed
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Thank you Mexhay & Kanga_Roo!
Nice to hear it does slow down and I will try the cold water move, sounds promising since I scald myself in the shower
Tigre
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El_Tigre I found that my hair stopped thinning too but it's very thin! Always was, just a bit more now! I do use Watermans. I have new growth and it grows fast. I'm not an ambassador for them lol but I like to think my hair is growing because of that, especially around the fronts and back where I thought I was going to start doing a buzz cut like the hubby😏😅
Gorgeous pic of the beach and your fur baby!
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Kanga_Roo - have you tried Nioxin? I'm using it and my hair dresser mentioned how much new hair growth she's seeing around the front and sides (where the thinning was most evident). Maybe the regrowth would have happened regardless, but I'm happy to keep using it (it's expensive but I only wash my hair once or twice a week, so I think it will last a very long time.) I'm also taking Biotin, so that may be partially responsible for hair regrowth.
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Mexhay, I’m glad it is working for you, but anecdotal evidence would point to the fact it will grow back anyway as your body adjusts to the side effects of the drug combo.
IMHO many of these companies are charlatans, and unless there is scientific peer reviewed evidence, I would steer clear of them.I’ve been wanting to write about this for a while, and I hope I don’t offend anyone but I think it needs to be said.
I know we are all searching for that miracle cure, but if you are worried that you have a lack of any mineral or vitamin, ask your doctor to do a detailed blood test. This will tell you exactly what your body needs and you can then work out a Vitamin regime. I had it done and found my VitE and iron were very low. Again, I am very wary of the “this works for this” so go buy a bottle and take it. Having cancer is a bummer, and we have so many solutions thrown at us daily. One of the problems is that any minor intake of a particular food/Vitamin (eg grapefruit) can offset the benefits of the combo.I know this all sounds a bit tough, but honestly everyone… go do a stocktake of all the supplements you take and ask yourself why you are taking them. If your oncologist said take them, put them back on the shelf, but what about the others? Often we are sucked in by the advertising hyperbole or testimonies on the sales sites. Cancer thrives on sugar, if you want to do something helpful for yourself, cut this down as much as you can. Some time ago I started a thread on Keto for those who might be interested … it’s lingering somewhere on this site.
Big hugs to you all, if anyone wants to know about the supplements etc I take I’m happy to write about them in another post… meanwhile eat healthy!
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waving to all !!!
Not much news from me. I’ve had a scare which turned out to be nothing. Very embarrassed, I was convinced my tumor in the evil boob had returned. No nothing 🤦🏻♀️
My new hospital is not on a strict timeline of bloods and scans , more a : “if there is something phone us”approach.I’ve also been called to have the 4th vaccine shot. I’m so fed up with the entire covid thing that I’ve not been. Anybody else feel the same way ? 4 shots (already had 2 modernas 1 Pfizer) within 11 months is a bit much.
Great to see so much good news here ,
Xx Jeb
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Hi forza! So interesting to hear how scans are handled at your new clinic.
Re: the next booster shot, I was very much feeling the same way recently (not anti-vax by any means, but feeling like 4 shots in such a short period of time was a bit much.) But this weekend my family all came down with a dumb stomach bug and I'm taking far longer to recover than the others, so it's a humbling reminder that my immune system needs extra support on these meds and now I'm reconsidering that 4th shot.
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hi Mexhay
I guess I’ve been stable long enough , they are relaxing the labs and 3 monthly scans . Why do a torso scan when you had full body scans for 2 years. Their reply : do your legs hurt ? Well no. So ? Ach. Changing hospitals is challenging on the nerves when they do things differently and you just had it all figured out in your head.
Also been debating radiation twice to zap old tumours away , I’m fine leaving them where they are. Onco wants rid , radiotherapy is on my side to leave it. I’ll never be NED but that doesn’t bother me.
That vax …. 4 in 11 months is just too much. I’ve decided to wait a few weeks , so it would be like starting over with shot 1 in year 2. I know that sounds silly.
I’ve phoned onco but they’re all : you decide for yourself. Also I’d prefer Moderna again and not Pfizer. All this mixing and matching annoys me 😂😂^healing vibe
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Hi Kanga Roo
I totally agree with your post - we all need to find things to help mitigate the side effects of serious medication. Always take tablets after eating - not before and I find that ginger, jam or biscuits, definitely reduces nausea.
A good quality multivite is important to me, for bones I need calcium, magnesium, boron and vitamin D, also vitamin C helps with healing. As a non-meat eater I have found it is important to take iron as vegetarians can be deficient. To help counteract the effects of Letrozole my oncologist suggested Evening Primrose Oil and I find it has reduced the hot flushes. Good quality skin cream is absolutely essential and I tried a few before I found that my skin reacts to perfume and I found MooGoo natural soothing moisturiser [from Australia!] works well for me. Vaginal dryness is something we also get [not talked about much] and finding a soothing cream or gel for that is challenging. Sleep deprivation has been bad for me and my oncologist suggested Valerian capsules which I find help, taken one hour before bed. I did try Melatonin and that kept me awake all night!
A lot of it is trial and error. I used to eat bread but recently my body has reacted badly to it and taking a probiotic has helped a little. Thinning hair I have also had and now I have a very dry scalp as well. I see that other people find yoga helpful but I prefer Pilates to keep muscle strength - so important as we age.
Very good wishes to all on this forum, Covid has restricted our movements and we need to get out there and live, not just exist.
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Hi All
I forgot to add that my blood was not recovering in one week off Palbo so three months ago my oncologist changed my regular cycle to 3 weeks on 2 weeks off, and so far the CA-15-3 marker has been stable. I think I am very fortunate in having a very caring consultant.
Very bvest wishes to all.
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I really hate this new format, seem to have lost all my favourites and find the search process cumbersome!
Hope you are all well
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Kanga Roo - I absolutely agree. Why change something that works well????
We are all trying to keep well and Mr Putin is killing innocent people. What a nasty, evil, meglomaniac he is. To all Ukranians, we are thinking of you with love.
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