Ribociclib/Kisqali with Letrozole - Any one on this combo?
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very sweet of people to enquire after me. The big status quo. Grumpy with moodswings but I think stable on the cancer side of things. Doing less scans because fed up with blips that come and go . Some scanners are way too sensitive . Also getting allergic to more and more contrast / reactive agents so thought limiting the scans gives my body some time to regroup.
Starting year 7 on the combo. Not celebrating but it’s on my mind obviously.
take good care my lovelies xx2 -
Oh, Forza! So nice to hear from you. Year 7 is an inspiration and so I will celebrate you.
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@Forza 7 years is amazing!! Keep it going 🤗
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oh thanks guys ❤️❤️❤️
I feel bad for not checking in more.
Combination of very tired + living a lot. It’s a daily pendulum.
what’s going on with all that gas ??? I just read up a bit.xx
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I have been on Letrozole for 4 years and combo Letrozole and Kisqali for 1 1/2 years. Initially the treatment looked effective however my latest Pet scan is confusing. Does anyone have a clue as to why my latest PetCt scan showed no cancer activity in my breast tumor- nothing lit up, but my two sentinel axillary lymph nodes did light up and actually grew. I have never had breast surgery because I cannot risk radiation because of a history of non-small cell lung cancer for which I had a lobectomy in 2020.
I also showed an ESR1 mutation so I know that at the very least I am not blocking much estrogen.
Any insights will be very appreciated.
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@boxwood My diseased lymph nodes were still mildly active after my breast tumor disappeared during chemo. So I think they can have a mind of their own. Hopefully your team can soon give you answers about whether you can stay on your current treatment or need a change.
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I’ve been put on this combo, I start on Wednesday. Yesterday I had my first ovarian suppression shot (zoladex) and it’s every 3 months and my oncologist asked that I start the medication in a week’s time - not sure why? I was offered an option of one month tamoxifen or just start in one week and I opted for the latter.
What time does everyone take the medication and does it make a difference?
Anything that has helped with the side effects? Any advice for the newbies are welcome.
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@raysal I don't think a week will make much difference. I am not sure why your oncologist is having you delay, but are you having an ECG to make sure your heart is strong? This is pretty standard, and perhaps that needs to be arranged.
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@tougholdcrow yes I had my baseline ecg and getting one monthly as well as blood tests during the end of my break week.
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@raysal I take them at different times in the evening but that's just because my sleep is all over the place and some days I'm not up early. I started with times that were most convenient for me. I know some people take with meals but my side effects have been pretty manageable so timing makes no difference to me. Hope you're able to tolerate it well also!
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Hi all. I completed two weeks, one more to go. My most noticeable side effects are extreme fatigue and for the past 10 days about mid-day I’m feeling sore all over, pain in joints, etc. It lasts until I go to sleep. I’ve been on Letrozole for quite a while and haven’t had too much pain but wondering if the combo of Kisqali and Letrozole kicks that up or it’s just the Kisqali. My left hip and pelvis wings have continued to be painful (mets there).
I get labs today and ECG tomorrow to see how I’m fairing. My next CT scan will be July 2nd.
I hope the rest of you all are managing your treatment and enjoying summer.0 -
I think the Kisqali does make the joint pain worse. I switched to taking my Kisqali and Letrozol at night and that has helped me. Drinking a lot of water during the day has made a difference also with my joint pain and fatigue. I can tell when I don’t drink enough. I have been on the combo since October 2024 and it has not gotten worse. And the combo is working so that’s good news!!
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To tougholdcrow,
Thanks for your response about axillary lymph nodes continuing to show activity after the breast tumor was not lighting up on the PET/CT. The sentinel node has also increased in size. I read that a breast tumor can drain into a lymph node causing it to increase in size. Am I totally confused? . I have not had surgery nor radiation for the breast cancer because my past lung surgery can't risk it.
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@boxwood My story is that my breast tumor (about 2cm) shrank to nothing during chemo, but my axillary lymph node (proven cancerous in a biopsy) still lit up at a very low level (1.2) on PET after chemo. It's just now gotten below 1cm (and thus normal size) after another year on letrozole/kisqali. I'm considered "very stable." So I haven't had surgery either. I think lymph nodes can be sensitive to various infections, inflammation, etc. But what is your onc saying about this increase in size?
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to tougholdcrow,
Hi, my oncologist has restarted his recommendation for surgery of the lymphs and the breast tumor which is still palpable but dormant cancer wise. I am more than reticent to allow a surgery because of the risk of lymphedema among other things. I'm inclined to request another PET in a couple of months to measure the lymph node and see how the pet lights up. As I mentionned, I had lung cancer and had a lobectomy in 2020 so radiation is out of the question. I recently had a Guardant test and it did not show an ESR 1 mutation which a previous test had shown in 2023. Just adds to my confusion. Still on Kisqali and Letrozole. Thanks so very much for your input.
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@boxwood You have gone through a lot! I hope your quality of life is good after all you have been through. I think we all feel in a state of confusion at first, but you have an exceptionally complicated case here. That's odd about the Guardant test. Detection of the ESR1 mutation detected just before or after progression means access to brand new treatments with the next-generation SERDs, as you probably know, but hopefully Kisqali and Letrozole can keep you stable for a long time. I guess the issue with another PET so soon might be exposure to radiation, and insurance coverage. I am sure you can find lots of discussion of lymphedema on this site, and perhaps find some reassurance.
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Thanks a lot for your input tougholdcrow. I appreciate it.
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so I completed my first cycle of Kisqali a week ago. First two weeks were a nightmare, horrible migraine, nausea, fatigue.. Not sure if it was due to Kisqali, Letrozole, or zoladex (or just the combo and shock to my body). Third week and the week off were pretty good.
Anyway today I had my bloodwork and saw my oncologist and my absolute neutrophil count is significantly low at 0.530. He’s giving me another week off Kisqali and repeating my test on Tuesday. But I am disappointed. I didn’t expect my immunity to tank so much even though I know it’s a common side effect but I thought it would take a couple of cycles to have a toll not immediately from the first cycle. Any tips on what to do during this week off to help my counts?
Oh and I was planning to travel on Wednesday on holiday - trying to live my life now with these low counts I’m debating whether it’s a good idea :(0 -
I've been on Kisqali/Faslodex/Xgeva for 3 years. Luckily, my neutrophil count has only occasionally dipped to .8, but mostly stays above 1, so I have no suggestions about that, but I can talk about travel. I am in my mid-seventies, so decided to start spending some of the retirement funds I worked so hard to accumulate and check things off my bucket list. Since becoming Stage IV, I've visited 12 foreign countries, some of them more than once, and taken trips to many US locations. The first few trips terrified me - I kept expecting to feel sick any moment, but never did. I think you have the right attitude in trying to live your life now. None of us - regardless of age or health condition - are guaranteed a tomorrow. So make sure you are up to date on every vaccine available to you, mask up, bring hand sanitizer and get out there!
One more thought - you didn't say what dose of Kisqali you're on, but I was reduced from 600mg to 400mg after one cycle with horrid SE's. The lower dose has kept me stable for 3 years, so don't be afraid of that if your MO recommends it.
Don't let cancer paralyze you. I wish you a long run on this treatment.
Eleanora
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Thank you @eleanora for the reassuring words. It’s awesome what you’re doing and so hope you get to travel for many more years! Like you said I’m not letting cancer stop me and I want to continue living while I still can.
On the medication dose, I’m on 600mg. The way I understood it is that we would wait a week and then depending on lab results will take a call on whether to reduce the dosage or not.
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@raysal I've been on 400mg for quite a while and doing fine. I found that the lower dose helped with my fatigue a bit. I had neutropenia which just wouldn't let up, and my numbers can still dip now. I have a superstition about getting my blood work done in the afternoon after I've been out and about. My onc says there's nothing in the science to back this up, but that's my strategy and I'm sticking to it.
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tip on that blood work . I only need mine done 3-monthly after so long on the combo. Get it done on day 2-3 of the new cycle. Those neutrophils still keep rising those first few days after the week off.
None of my appointments are aligned anymore so I can play around a bit.(I’m on 400)
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maybe not politically correct advice earlier. I’m a patient not a doctor !
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Just starting my 3rd cycle of Kisqali/Ribo today. Overall side effects are #1 fatigue, #2 stomach hurts but no nausea, resulting in no appetite (lost 10lbs that I didn’t need to, since May), #3 skin rashes that come/go, #4 it seems my overall pain in joints/bones has gotten worse (Letrozole/Kisqali), #5 insomnia if I wake up during the night (which is a given for us older gals).
Had Zometa infusion today and labs. My WBC/RBC has been going down but is around 3k. Less than 2 weeks ago labs showed liver enzymes right about 40 each, today they doubled! I just finished my off Ribo week yesterday.
I get a message from the Onc PA saying they are elevated and to avoid alcohol (which I haven’t had in ages unfortunately) and acetaminophen. She already said to limit Mobic. I’m hoping I don’t have the same horrible pain from Zometa the last time.
Because now I have nothing to take for pain relief. I’m sorry to complain as I know others have it much worse.1 -
@newfmamainoregon, if you haven't already, ask your doctor about prescribing you Cymbalta (generic name duloxetine). It's an anti-anxiety med, but used off-label to effectively treat symptoms of menopause (joint pain, hot flashes). My wife takes it and it greatly reduced her joint pain and eliminated her hot flashes. It can also either aid with sleep or make insomnia worse depending on the person, so that might be an intolerable side effect for you, but it would be worth trying I think, especially if you can't take other pain meds. And it's cheap and readily available.
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Thank you @bighubs. I’m not sure I am willing to take that drug. Most meds have strange effects on me and I’ve ended up in the ER one to many times. I will look into it. I’m happy to hear it is helping your wife.
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it’s been quiet here ??
just popped in to share this combo is still working after 6 years and a bit. Results latest bonescan , ct and the mammo panini press 👍
Yes I live on sugar and coffee so do eat that icecream if you want one. Don’t let the internet talk you into the « sugar feeds cancer , go on this or that miserable diet »I’m taking a break off Kisqali for a month again like last year to go on a months pilgrimage. Would never give up the letrozole though. I feel that one is doing the heavy lifting in my treatment.
Love to all 😉
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I just re-read your bone / joints pain situation. I’ve noticed America seems to go the zometa route easier than where I live …
If it’s horrid again , you might ask to switch to X-Geva ? Those are monthly under the skin injections and not a 3-monthly infusion.
The comparison trials show no difference.
Realising everybody is different, I have no side effects from that. I have no part and no decent veins so these injections are made for me ☺️☺️
Just a thought.1 -
@forza so great to hear from you, and where will you be going this year?
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