Ribociclib/Kisqali with Letrozole - Any one on this combo?
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An update:
In January of 2018 I was diagnosed with stage 4 breast cancer and told I should get my house in order as I may have only months to live. My oncologyst suggested I go on the Kisqali trial along with letrozole.
last Monday, I had a PET scan and this Monday went to see my oncologist. I can’t describe to you the overwhelming feeling of happiness when she informed me I no longer have any cancer in my system!!! My cancer markers are normal and nothing to see on the PET scan!!
Most of you who know me on this thread also know I have been on a keto diet since diagnosis and I strongly believe this has also helped.
so what now I asked… She still wants me to take the kisqali on a 2 on 2 off weekly rotation and continue with the letrozole with monthly blood checks to monitor how I am going.
I hope my story gives you a little ray of hope because I know how depressing it can be going through the side effects and constant tests and scans. Stick with it if you can, this drug really does work.Cheers,
Jackie.
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Congratulations, @kanga_roo! Awesome news! Thank you for posting this to inform everyone, it's so inspiring! 🎉
The Mods
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@kanga_roo congratulations 🍾! Are you taking 600 mg and were you always on 2 on 2 off? I am on 400 mg due to low ANC , 3 on 1 off weekly. I’m thinking 400 mg might not be strong enough.
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hi anx…. I started on 600mg 3 weeks on one off, but the side effects were terrible, so after the first month, reduced to 400mg, 3 weeks on, 1 off. I remained on the regime for 5 years without too many problems. It is only after my cancer free diagnosis that I have been put on to 400mg 2 weeks on, 2 weeks off.
Over the past 5 years my cancer markers have fluctuated up and down but my scans have always shown minor reductions until finally all gone.
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Well done Kanga 👍👍👍 This makes me happy !!!
I’m liking the sound of a 2 on 2 off schedule … will ask oncology in January. I’m fed up with low blood counts , the sniffle sneeze season has started here and I stumped my toe badly where it’s just not healing. Minor problems I know. In my head I convinced myself it’s the Letrozole doing all the hard work.
Latest MRIs keep throwing up benign cysts everywhere and where I bump into tables :)) They are going to risk a petscan soon , me being allergic makes them very nervous.
As I’ve said here many times : my tumour markers are lower than a random healthy person.
Congrats again Kanga
good vibes to us all 🍀🍀
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Hey Forza! Great to hear from you! I think you and I started on this combo around the same time so you are doing really well too!
In Australia they only do a PET if they think you are in remission or NED so sounds like you onc wants to make sure.
The PET scan uses a mildly radioactive glucose solution, which takes 30-50 min to infuse. They sit you in a dark room and ask you not to read or use your phone etc…I was able to listen to my audio book and listen to some music. The actual scan takes around 15min. Keeping my fingers crossed all goes well for you!
Cheers,
Jackie.
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Hi Kanga, I had whole body PET instead of head to thigh 12 months apart. I thought the PET scan is standard every 3 months but my old Mo wants to do PET only if your symptomatic, my new MO seems the same and mentioned that he doesn’t like PET scan. I’m not a fan of PET scan either due to radiation exposure, what kind of imaging your had other than PET to monitor your MBC?
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Hi Anx.
I have had yearly CT scans and regular MRIs.
I had my first PET scan a few weeks ago.
I never worry about the radiation, it is such a small amount and depleted from the body within 12hrs. In Australia I probably get more from walking around in the sun ☀️
I always get what I call scanziety before a scan, not about the process, but worry until I get the results.
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hi all, i am new to this community
I have been on Kisqali and latrazole since September, with large tumor on in the right breast and met in my L4.
I had radiation on my back, and did my scan last friday which shows that all the cancer is gone! i still am due for a mamo in a couple of weeks to see the breast better. so good news for sure.
The doc did say she wants me to have a mastectomy, to avoid the risk of it developing again. Do any of you have this experience, of having the cancer gone, but still undergoing surgery?
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Welcome, @iditsaguey! That's such wonderful news about your cancer being gone, we're incredibly glad to hear this combo worked so well for you. Best of luck on your upcoming mammo, please keep us posted on how it goes.
The Mods
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hi Iditsaguey and welcome to the thread. I have never heard of anyone having such a rapid response to this combo! It is truly amazing and I’m so happy for you! I haven’t heard of anyone on the combo having a mastectomy either, so we will all be interested in your progress. Your mammo might provide more info for your doctor. Sending gentle hugs.
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Thank you! yes same here, i was very surprised! yes right now i am trying to understand the best course of action going forward. For now will wait for the mammo, but the doc is pushing for surgery… will see.
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Idits??
I was never operated. When they found the breast tumour , I was scheduled instantly for a lumpectomy and lymph node removal. But within a week they found mets on other scans so they cancelled the surgery promptly. I’d already gone through pre-op.
there’s no more point in operating I understood from it. It’s already done the rounds throughout via those pesky lymph nodes . My lymph nodes did look like a Christmas tree. Maybe yours didn’t.
its your decision, maybe a second opinion ??
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Hi Kanga
you were ahead of me.
we overscan where I live. Every dot or cyst gets looked at by different scanners and I’m fed up now. So hoping to be courageous and just say no. Still need last results explained to me in January and then I’m making my move 😂😂😂
Have a good Old to New
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i have had pets before but with each pet I get more purple streaks so they infuse me with antihistamines and steroids now and only when the er is fully staffed 😂😂😂
makes me laugh because without a mirror I wouldn’t know I react badly
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Thank you Forza!
i had the exact same situation, i was scheduled for a mastectomy, and than they found the met in the back, and it was cancelled. Since now they dont see cancer anymore in the scans (breast or back) , they recommend surgery. are you in the same situation?
My lymph nodes were always clear BTW.
also not sure how i respond to a message lol so i added a new comment.
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Hi everyone, wishing you all a happy 2024.
I’ve ended up my year with a horrible UTI. I’ve had 5 lots of antibiotics (2 via a drip in the hospital) and have started another course recommended by a urologist , that will hopefully finally clear it up. I take a medication called jardiance for my type 2 diabetes, and the urologist told me to stop taking it immediately… if you google it, you will see the known side effects include UTIs and fungal infections!!
Meanwhile, my oncologist has told me to stay off the Kisqali till I get over the bug… fortunately being NED this doesn’t scare me too much, but I’m actually looking forward to the protective blanket it provides me, lol
In closing, just want to say the big C tends to dominate the way we define our health, but don’t forget the little things, don’t ignore minor symptoms, they could be caused by other health issues! Take care, thinking of you all and sending gentle hugs for the New Year! We made it through another one!!
Cheers,
Jackie.
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Kisqali was actually working for me except after three months, I woke up covered in hives. This was in May. I started Orserdu in November after testing positive for the ESR1 mutation and after three weeks, hives again. I’m quite certain it’s the fillers they put in the drugs that I’m allergic to as this has happened with other meds. So I’m going to ibrance at half dose. It actually worked too but it destroyed my blood counts and I was sleeping 20 hours a day. I wish I could go back on Kisqali. It was easy and it worked for me.
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I hope it works out for you Barbaraa,
I had a reaction to an off brand version of letrozole, amazing how those fillers can have negative effects! .
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Hi! Second time posting here. I was diagnosed in May 2023 and after going on these meds I have had two clear PET scans in August and November. What a relief to see “no sign of original cancer or metastases.” But my level of anxiety still stays high. I am now on 200 mg due to low WBCs. Has anyone else had eye pain related to this combo? I’m desperately seeking advice on this as it really impacts my quality of life. It’s a searing pain that started with the drugs. I see an ophthalmologist later this month but woukd appreciate any advice. It seems like a rare side effects! Thanks and sending positive thoughts to all of you!
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MJ,
My wife is on this combo since April 2023 and while she has not had eye "pain" she does experience optical hallucinations while on the ribociclib. It resolves and goes away during the week she doesn't take it and comes right back again when she resumes. She describes it as looking like moving things have tails (like mouse pointers on computers sometimes have). Usually only affects her during low light situations/early morning hours. I posted this on another forum and didn't encounter anyone else with the issue. She was thoroughly examined by an opthamologist to rule out anything else and got a clean bill of health.
I say all of that to say that while rare, eye/vision side effects are apparently a thing with this drug. She also gets recurring optical migraines which don't seem to follow any pattern and was prescribed zomitriptan for them which seems to be pretty effective.
Hope that helps.
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Thanks Bighubs. I also had what your wife experiences. It appeared to me as long strings of beads and I would actually try to move them out of my way as I first walked to the bathroom in the morning. But as my dosage has been reduced due to low WBC counts it has disappeared. Maybe some of us are just prone to optical impacts. Thanks for taking the time to respond! And all the best to you and your wife.
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hello everyone and thank you for sharing your stories and knowledge. I have been on Ribociclib and letrozole (plus Zoladex) since October 2023. My first scans in January showed 22% smaller primary tumour and increased sclerosis of bone mets (T3, L4 and L1, with radiation to T3 duw to pain prior to starting the combo). Fas forward to February when my liver enzymes raised ALT 157 and AST 58. I was on one week break and repeat bloods after only 4 days of break and ALT is 133 and AST 54. Oncologist asked me to continue the break and repet bloods after one more week. If the ALT is not down to baseline (34) she wants me to switch to Ibrance (Palbociclib). I am no ready to give up this line of treatment. Can anyone share their experience? am I getting too crazy over this? Thank you in advance for your input.
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Hi @grit_a! Have you considered getting a second opinion on this? We totally understand not wanting to change your line of treatment. At the same time, if it's not working effectively, you don't want necessarily to delay getting another treatment started. It's very difficult to make that decision, hence perhaps a second professional appointment, if that's possible. Sending hugs!
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@grit_a I had a similar experience. I was on Ribociclib and Letrozole combo for 3 rounds, then I THINK I had a drug induced cutaneous lupus episode ( I also have an existing Sjogren’s) that’s so severe that my oncologist stopped the Ribociclib treatment and switched me to Ibrance 125mg. I have just started Ibrance for 4 days. So, I don’t know how it will affect my autoimmune yet. But I think it’s safer for me to do the switch since lupus can be a lot more destructive.
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@grit_a here are the manufacturer guidelines regarding liver enzyme elevation and dose reductions. You didn’t mention, but I assume you’re on the full 600 mg dose? The elevations you’re describing aren’t that bad, so I’d probably try for a dose reduction rather than a switch.
the other question is if there is something else contributing to the elevation ie. a recent virus like influenza, or a course of certain antibiotics
there is a separate guideline for bilirubin elevation.
hope this isn’t confusing - please ask if you need clarification on this table.
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@mods thank you will ask for a second opinion
@wengellen thank you for your input and best of luck with Ibrance. May it work for you for a long long time.
@mswife Thank you for the clarification, I’ll take that info to the oncologist if she keeps pushing for change of treatment. Indeed I was on maximum dose, 600. I was told by the NP to stop any supplements, not to take any paracetamol or ibuprofen whilst on break from treatment to avoid values being influenced. I forgot to mention that after my week of break before starting treatment I was at 94 ALT and was given the go ahead for full dose treatment and asked to repeat blood tests in one week, when values rose to 157 (on break since then)
i wonder how long I can take a break from treatment being stage IV grade 3. I might ask her that as I am in week 2 of break already.
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hello again! If you have been on a break from ribociclib how long was the break? I am already on day 9 and I’m very aware of any and all aches and pains. Being grade 3 I worry about progression. Your experiences are greatly appreciated as I have nobody to talk too about such things. Thank you
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I did one round of Kisqali and my neutrophils went down very low, so I'm finishing up week 2 off of it. I'll be finding out tomorrow if the MO wants to reduce the dose or not. My bloodwork today had the neutrophils rise up a bit, although they're still low. I can't read those tea leaves though, I need to hear what the MO thinks. It worries me a bit, since I'm stage 4. I have no other major side effects from Kisqali so I want this to work out…
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