Ribociclib/Kisqali with Letrozole - Any one on this combo?
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Canaloon when I injured the tooth I asked the dentist about the clenching and he said it was stress and that he used to do it college. I think he probably didn't really know the cause. I think for you it could very well be a side effect. When I was on ibrance I had cramps in my toes/feet/calves almost every night.
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Hi Carpe Diem,
I thought when I posted a reply to a post it automatically went to the initial posting. (Sorry Suzan, but thanks for your response) it seems it just goes to the bottom of the list.
Anyway, I am definitely interested to know how you enjoyed and endured your trip to Portugal.
Cheers
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Hi HLB - well my jaw clenching turned out to be "something" - pro-facial dyskinesia - which comes from possibly taking an anti-nausea pill (Prochlorzine) for coping with Ribociclib (I don't think its the Letrazole). It could be something else causing it but we decided to start with this approach. The Psychiatrist I saw has seen it before (but not much in the cancer world). Anyway now I get to wean myself off the Prochlorzine over the next four weeks or so. He says its a rare condition: 1 in 10,000 people. Hopefully the nausea goes away on it's own. At least I know what it is and there's a treatment for it. There's always something ehh?
Merry Christmas!
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canaloon,very interesting. I've never heard of that. Some of otherness do such odd things!
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Hi Everyone - well, I'm sad to report that I've been removed from the Letrozole/ Ribociclib Trial up here in Vancouver. It was a decision made by the company who runs the Trial and it's because my Liver Enzymes just wouldn't come down. I was at "70" and they wanted me to be "35" which is normal. I appreciate that they didn't want my Liver damaged and did give me 5 weeks to see if my Liver would normalize itself. But now I'm off Ribociclib and all other CK5 inhibitors permanently (the Trial Oncologist said). On the one hand I feel so much better off the Ribociclib (less exhaustion and nausea). The Ribociclib did dry out my lungs, which is a huge improvement, and I believe it saved my life at that point. But if the cancer progresses, the follow-up treatment is either a pill form of chemotherapy, or drip line full-blown chemo, neither of which I want to experience again. Anyone else been in this position? I've signed up to work with a Naturopath who specializes in cancer treatment so we'll see what that plan turns out to be. Otherwise it seems like Im on Letrazole until it stops working.
A message for the coordinators of this thread ... do you want me to sign off this group, since I'm no longer on the combo?
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Hi CanaLoon, I also had to leave a ribociclib trial due to high liver enzymes. My MO feels that the different CDK inhibitors are different enough, though, to not rule them all out. Ive since been on ibrance for 6 months and havent had an issue (fingers crossed!) although we do monitor pretty closely. So you never know, they may still be an option for you in the future
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Thanks JanMarie - you give me hope! I know some of what I'm running into has to do with Ribociclib not being accredited by the Canadian equivalent of the FDA. But it's good to hear that you were able to get on the other CK4 inhibitor drug. I had read that it was possible so was surprised when the Oncologist here was so firm about not being eligible when it becomes available here. I'll stay in touch here but probably won't post much (nothing too post). This (and you) are such a positive influence.
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Hi All,
I have been on the Kisqali/ Letrozole drugs for 3 cycles now and just starting my 4th. As time goes by I find that new side effects seem to be coming up.
Most recently are skin rashes and itchyness. In addition my nails are breaking and my hair has stopped growing!
Has anyone experienced these side effects and if so did you find a remedy ( at least for the itchyness)
This is some party! ........not.
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I also am in my 3rd cycle of Kisali/Femera. Had a rash on my chest, but it went away after a week or so. Still having very dry/itchy skin. These are the only side effects I have noticed so far. Blood test next week. Will watch liver number.
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I have almost finished round two of Letrozole/kisquali combo. So far the symptoms are much better than round one just dry itchy skin
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Here is a lot of text -- sorry about the long post!
It is crazy to hear all the liver stories. As well the random new side effects popping up and others disappearing. I think I'm finishing my 5th round? And it is working -- last PET my main tumor and mets have shrunk -- some by half.
Between now and my last post I applied for disability and got it. There was a moment when docs and I thought I had brain mets -- brain mri came back clean. I've been having blurred and double vision and massive stupidity. I've always had attention issues and I've never wanted drugs -- until now -- it is like everything is worse by 10x. I was driving in my neighborhood and I looked out at the street and had this horrible sensation: I didn't know if I was going somewhere or going home or even which way either of those were. My short term memory is just wacky, and weirdly old memories keep coming up that I had totally forgotten. I can't focus on anything and I forget meds -- the dog didn't get all his meds either because of me.
And guess what I just read about -- liver damage causes brain malfunction. Here are my numbers: AST 53/ALT 117 2 weeks ago. 20/33 in November.16/19 in August. There is a really, really big chance I'll be taken off too because of these numbers. (P.s. I think the normal ranges vary depending on which doc or article.)
Other side effects since I started all of this in August. Painful bowel movements and blood -- an anal fissure maybe? It gets better when I have my week off the Kisqali. FATIGUE and hot flashes and crazy chills. Nothing tastes great on week three -- I'm living on ensure and baby food right now and lot of tea. The week I'm off the Kisqali, appetite returns and I pig out. Any weight lost gets put back on. I have bone and muscle pain, but that is the Xgeva. I think spending so much time in bed is making that worse --- my muscles are atrophied. I can't wear eye makeup because eyes and lids are so dry and I'm rubbing them all the time. I'm pale as a ghost with random red splotches -- I have learned how to wear more bronzer and blush. The quality of my hair is ick -- I see my part getting wider -- but it's more so just a general dirtiness/dullness. My scalp is damp from sweat constantly, but it is more than that? Maybe the toxins in the sweat? oil? Eyebrows are thinner, but so far only the one blank spot.
In case anyone is interested, my supplements: Biotin, Vitamin D, milkthistle and liver cleanse tea, CBD oil and Rick Simpson Oil (I'm being careful because of the phytoestrogen bit), I juice when I have the energy, B12 -- and I'm about to buy some turkey tail mushroom capsules.
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Question for the ladies on this combo ... I was just informed that while my co-pay was previously being funded, it will no longer be happening. As a result, I got hit with a $900+ co-pay for my January prescription. I will be unable to afford this ongoing. Anyone getting assistance with their payments? I am on Medicare with a secondary insurance. On a fixed income, this is more than twice my mortgage. Ugh.
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Hi,
Hope you are well.
I started a trial for this combo. I have had a bit of bone pain and I am not as hungry at dinner time. I feel like the bone pain (legs only) is due to letrozole but I might be wrong.
Do the side effects come up with time? my next blood work is in 2 weeks.
Lola
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Well how unfair is that!! In your shoes I'd be down in the dumps. I hope some of the American women on this blog can give you some help. There is a website "OncLive" and within the last 10 days they had a short video discussion on cancer payments. The organizations they mentioned are different from what we have in Canada so I didn't pay attention, but that might be useful? Here's the silver lining though. If you're not on Ribociclib then you won't have the side effects from taking it. I've been feeling much better since my Liver scores forced me off the trial up here ... quality of life is better in the short run. So you may have more time and energy than you think to try and find a solution to the money side of things. And then get back on it again. In Canada Ribocib has not received "approval" so unless you're on a trial you can't get it at all. Of course they're working on that issue but it always takes longer to get new drugs approved up here in the "great white north" I hope some other folks here have some suggestions for you!
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Money Issues are such a pain and, Well, how unfair is the changes to your copayment situation.!! In your shoes I'd be down in the dumps. I hope some of the American women on this blog can give you some help. There is a website "OncLive" and within the last 10 days they had a short video discussion on how patients make cancer payments. The organizations they mentioned are different from what we have in Canada so I didn't pay attention, but that website might be useful? Here's the silver lining though. If you're not on Ribociclib then you won't have the side effects from taking it. I've been feeling much better since my Liver scores forced me off the trial up here ... quality of life is better in the short run. So you may have more time and energy than you think to try and find a solution to the money side of things. And then get back on it again. In Canada Ribocib has not received "approval" so unless you're on a trial you can't get it at all. Of course they're working on that issue but it always takes longer to get new drugs approved up here in the "great white north". I hope some other folks here have some suggestions for you!
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My nursing staff is working on getting my funding reinstated -- hoping it works. Otherwise I will look into your suggestion. Can't continue to pay this much every month. On the upside, had my blood work done yesterday and tumor markers are down from 733 to 242 after two cycles! Forgot to ask about the liver numbers, but she said all numbers were good, so I will check once they are posted online. Would like to stay on this combo as long as possible. Haven't really had any terrible SE's other than fatigue.
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Lolis - I have bone pain in my legs too -- I just assumed it was the Xgeva injection I get monthly. Please keep us informed on how it goes going forward.
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Hi all,
I am joining this thread because I am on my second day of Kisqali/Tamoxifen combo. Not sure why Im not taking Letrozole with it, but likely because I am 39 (pre-menopause). Also getting monthly shot of Xgeva.
How quickly did any of you have any side effects? What has been experience with hair loss on these? My MO said it may thin but wont all fall out at once.
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Hi Jods,
did you have tamoxifen before? if not perhaps that the reason why. I am pre-menopausal as well (37) however I was on tamoxifen before being diagnosed again.
The side effects I have experienced in the first days was just less appetite and joint pain. then lately I have started having some fatigue and upset stomach. Today all I had to eat was crackers and toast. I wasn't even able to have a coffee.
I haven't seen anything with my hair. All the side effects I have read about hair mentioned thinning but not losing it. My hair is thin as it is hoping Kisqali would be nice to it.
Lola
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Hello ladies!
Thank God I found you! I have been on kisqali and zoladex (to put me on menopauses since I am 25) for 6 weeks now and didnt have any major side effects. I will be starting letrozol (fermara) this weeks since the injection (zoladex) did its job. What has bothered me most is the headache and my intestins. But nothing I cannt take.
What concerns me is the result. I have been told that after 10 weeks or so they will check if it has worked (if the mets in my left femur has been reduced) and then they will decide if I must continue this combo.
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I am currently on my third cycle of this combo. So far SEs have been tolerable. Noticed some headaches and my rash has reappeared, this time on my back. Fatigue is a given. But If it works, I am willing to tolerate them to stay on this as long as possible. I will say that my blood work last week showed that my tumor markers have reduced from 733 to 230! So it's doing something. Will not get scanned for a while yet. Hoping it works for you also.
By the way, I was able to get my funding reinstated for the year, so no more impossible co-pay.
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Idajakoc have you mentioned those side effects to the doctor? I have noticed a light pain on my forehead and it seems to move from one side to the other on different days and perhaps it's just the body that is adjusting itself to the meds.
Sorry to see you join us at such a young age!!!! Hope this combo works for you!!!
Lola
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Hi Idajock - just to let you know that some of your side effects will be the result of being put into something called "an abrupt menopause". Instead of having 5 years to go through that process you go through it in six weeks. Headaches, strong emotional reactions, hot flashes come out of no-where. So it's useful to separate out what side effects are caused the trial meds and which ones by the abrupt meno process. They do have some meds that will help so if it starts to feel troublesome don't hesitate to call the study nurses and talk to them.
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I am so glad I found this group as I cannot find anything on google written by someone actually taking the combo other than the case study documents.
I was just diagnosed with stage IV BC on 5th Jan 2018 by accident when a 1 month back pain got my Ortho to order an mri thinking I might have a slipped disc or a fracture. It turned out to be bone mets on the spine, pelvic bone, right shoulder blade and my right frontal skull, just 7 months after my chemo for stage II BC. It caught my onco and me by surprise because just in Sep I got an all clear PET scan.
My onco started to put me on RT for 5 days to relief thr back pain and also to kill some of thosr cancer cells. A bone scan later found the tumour on the right pelvic gone. I hope thr RT did its work.
My onco also got me onto the COMPLEEMENT-1 trial (I am in Malaysia by thr way), and I have started on ribociclib/femara combo on 18/1. And the next day I started getting diarrhea and nausea
. She took me off ribo for 1 day but to continue Femara. On Femara alone, I had no nausea but the diarrhea continued. Today I am back on the combo and the nausea is back so I think the ribo is behind it. I hope it doesn't last long as most of you are not experiencing this. Cos I dread the idea of going back on chemo.0 -
Lola- thank you for the reply and information. Yes, that is right; this is my first go around with any medication, as I was just diagnosed 12/18 and was stage IV from the beginning. So I guess that is why I am on the Tamoxifen. I feel a bit tired but other than that, no side effects yet. Sorry to hear you are going through this a 2nd time at a young age! All of us are in the fight together.
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Hello ladies,
my grandmother is on Ribociclib/Kisqali with Letrozole (Femara) and she have once per month- XGeva. She is taking this since 10th of January, for now no side effects except low blood pressure.
Wish you all a lot of health!
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Anyone dealing with a rash on this combo. Last month just a small one on my chest. Onco says use a Benadryl cream and it went away after a few days. This month it is all over my back and arms and too difficult to use cream with such a large area. Any idea if taking a Benadryl tab is ok?
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Hi
I am on my 3rd round on Kisquali/Letrozole , last month I was itchy from head to toe,My oncologist told me to stop using dove soap and use a Alpha Keri wash. I have been using the wash and the itch has completely stopped😊I was told to keep,out of the sun and wear sunscreen as the medication makes you sun sensitive.
I am managing the duo fine so far just hoping it continues. I have scans in 2 weeks feeling anxious
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Mandy ... good to know. I will pick some up. I would really like to stay on this combo as long as possible, as this is really the only SE I have experienced. Have not had a scan yet since I am only on my 3rd round as well. But my tumor markers have decreased significantly. Good luck to you and thanks for the reply.
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Started Kisqali today right after my ECG was done and showed no abnormalities. Instead of switching to Femara, my oncologist is keeping me on Arimidex, since I've been tolerating it exceptionally well, not a single side effect! My Ca 27.29 is 51, and I still have to get my PET/CT. Fingers crossed for at least a few more good years with my family. My docs are optimistic, since my cancer is very slow growing to begin with. We'll see.
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