Ribociclib/Kisqali with Letrozole - Any one on this combo?
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Sorry Mandy to hear about your mum.
Always relieved to read some good news regularly though.I think I might have a bladder infection ... and it’s 11/11 so national holiday here and nowhere to go. I get them a lot because of my ms but the last 2 times I got checked *before this cancer nonsense* , they found no baddies.
So ... should I start taking the leftover antibiotics I still have in my medicine cupboard or should I wait and cry help at the doctors tomorrow ?! That same doctor who did those last 2 checks “for nothing”. That same doctor who saw me twice in 1 day last week because I was convinced that zoladex shot was not in the right spot
/ I was fairly cool and keeping it together about this diagnosis for 5 months but since last week I got overly paranoid and think everything is out to kill me ☹️
Also one of my best friends , she’s 75 , got dx with thyroid cancer , operated on to cut the entire thyroid out , apparently it was then biopsied and benign , so she’s now declared healthy again all within 3 weeks ???? What’s that all about ??
Sorry , scatter brain : antibiotics ?? Does it need onco permission ??
Jenn
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Mandy, condolences, life can be so cruel...we get over one hurdle, and another presents itself!
Forza, I have a chest infection and my Dr put me on antibiotics. I contacted my oncologist to check if that was ok... she said yes, but not to take the Kisqali whilst on the antibiotics because they lower white cell count.
With your UTI have you tried Ural - you can buy it over the counter and it does give some relief.
Love to all,
Jackie.
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Hey Jenn,
I'm on an antibiotics too. I have a sinus infection. You don't need permission from MO you just need to not take Kisqali while taking the antibiotic.
Also make sure it's not an antibiotic that causes QT. Several do.
I just got over a uti myself. They suck!!!
I hope you feel better soon.
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!! thanks Kanga and Laine !!
Tried phoning the “oral anti-tumor therapy department" (oh yes , it's in the name) in hospital but they only open at 9 am so grrrr , half an hour to go. I'm on day 15 of my Kisqali box
// Not wanting to stop it. Ach !!!
Will edit to update with the info I get.So ... they want me to try : uri-cran forte for 5 days and drink lots of water ?!?? If it's not improved by Friday , I need to phone back and they'll look into starting up antibiotics. Oh and in the meantime keep taking the Kisqali. “Great” *in a sarcastic tone* ...
Edit nr 2. The pharmacist thought the cranberry uricran might be good for prevention but not to cure so gave me something else instead :
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I just wanted to chip in on the infection thing to share what I’ve learnt. In case others don’t know. The low neutrophils we get means we are at risk from bacterial infections ie stuff we take antibiotics for (essentially we are most at risk from our own bodies). So we are no more at risk for colds and flus than others.
I researched this as I sit with a bunch of parents at work who are ALWAYS sick. So yes I had the flu shot but not because my neutrophils were low. But my main focus is on keeping myself clean and dealing with cuts and drinking cranberry juice.
My news? Just had my single liver met removed with a liver resection plus gallbladder removed. Definitely a lot harder on the body than my prev 8 surgeries.
I’m guessing that my liver tumour has different characteristics from my primary tumour as they are getting me to do more tests before I see my oncologist.
Had anyone else got Mets different to their primary?
Just feels like a hit when I am already down. Maybe no more kisqali for me? Will update when known in case there are others in my situation.
Thank you for reading.
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Hi Lisa
that definitely gave me food for thought about the bacterial vs viral. Thank you for posting that.
Sorry to hear about all those surgeries. That sounds rough. Don't we need a gallbladder ? Not your job to educate me , I'm gonna google that. Surely someone knows something useful to add and help you. Biopsies showed my bone mets are identical to my lymph nodes and my breast tumor. But I'm de novo and only 6 months in ...
Stay strong
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Hello ladies. I havent been here in while so I have a lot of reading.
Beautiful picture of Northern Lights Forza. It was ourgoal for the trip in Island, but was raining all the time, so no lights but still we had great time. We dont need gallblader, it is just storage for the bile.
Lisa, I had liver met removed together with gall blader and ovaries two years ago, my liver is clean since then. I was before and after only ob exemestan, no chemo. It was recurrence after 4 years from stage 1. My liver met was Er pos but Pr neg...breast was er pos and pr pos, both time her2 negat. It was the best thing I could do to have this resection, I had laparoscopy.
My problem now is solitary met in the TH10, started same time as liver, but they were not sure is met, it was sclerotic and quiet for two years, this year it started to grow, I had cyber knife treatment in july, changed treatment from exemestan to faslodex and kisqali and in october petct its activity is down only in half from suv 8 to suv 4. And my back just started to hurt. Did you have some pain in bones if they were healing? I have consultation regarding spondylectomy.
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Hello Bratislava
Googling even more after your post. trigger warning : grumpy
Just having a moan ... I phoned oncology today as they asked : my UTI has not disappeared by itself and that I'm slightly feverish. Now they say : go to your general doctor to get antibiotics !?!? Oh and the best part : I'm allowed to take the classic nitrofurantoin (girls , you know which one I mean) together with the Kisqali !!!!!!!!!
It being yet another long weekend here my gp is not working today , so I asked : can't you guys give me a prescription ??? Apparently not . Seriously , oncology has nobody on shift that can prescribe ???
Fed up with that hospital 😡😡😡 I would change but on foot it's a 10 minute walk ...I should have gone with my instinct to see my gp on Tuesday and saved myself all this stress and anger going by the book. Aaaarhh 😡
happy edit : finally go the antibiotics 💃🏻💃🏻💃🏻 There’s a list of which you can and can’t combine with Kisqali. Seems to be knowledge on a “need to know” basis.0 -
Hey Forza, so glad they got you the antibiotics. Which one did they give you? I hope it knocks it out super quick. I hate UTI's. Just got over one myself.
Have you had your flu shot yet? I get mine when I finish this cycle.
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Just the boring Nitrofurantoin (Furadantine). Felt better after just 3 pills , ofcourse taking it at least 5 days. My rest week starts tomorrow so no flu jab yet. I’m sticking that 1 in my armmyself , fed up with waiting rooms.
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Do they let you give the shot yourself where you live? I don't think they do that here. Mine is next Tuesday. Ouch!
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Ha , who’s gonna stop me ?
!!!! Not encouraging anybody else to do this !!!!
You’ll be fine Laine , the ouch is because it’s intra-muscular so really relaxing is the trick for it not to hurt.
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Hello Kisqali friends...
I am not positive but I think that after just six weeks the Kisqali fulvestrant combo is failing me. The neck nodes that had stopped hurting and felt smaller last month are painful and swollen again.
Could be nothing but my question is have any of you discussed your possible next line with your doctor? If so what did they recommend? I have a feeling Xeloda is next but looking for other possibilities. Thank you!
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Hi Lauren
I had worse pain starting this combo that i didnt get pre dx and my oncologist said that the Kisqali can cause a flare when it's working, especially at the very start of using the combo.
Stay positive.
I have asked about next line as I really don't mind this combo at all compared to actual IV chemo and my onc said lets not talk that far ahead! my friend whom Kisqali failed did Xeloda and then when that failed is now on Taxol.
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Hi Traii,
Well that’s interesting about the flare. I think that’s a good way to think about it for now. I will try to stay positive because I am handling this combo really well.
My onc won’t answer the what’s next question and it drives me crazy. She could say we could try a b or c it just depends and give me some idea so I can prepare myself. It’s hard being a control freak with cancer! :
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hi Lauren !
I'm only 6 months in (5 cycles) and tried not to think about what they give you after the Kisqali starts failing. As you say , the side effects are not bad. I'm de novo so never had proper chemo infusions before so I assume that's what I'd get. Assuming is never good.
I have a nuclear bone scan and ultrasounds again tomorrow and “result chat" on Thursday so will ask this very question too. I do have an oncology team that doesn't even use the word “cancer" so my guess is I'm not going to get much out of them. The “every person is different" speech makes me want to punch somebody. I do have more intense but luckily intermittent pain in my breast and lymph nodes etcet. but all tumors shrunk according to petscan so pain does not equal good or bad it would seem. I never touch or pinch it all myself , I know , I'm such a baby. I just can't do it. I convinced myself it's the shrinkage that hurts 😄 Plausible , right ?But surely 6 weeks is too early to write it off ?? I'd stay positive (I'm such a liar. Ofcourse I can't ! I'm scared of what tomorrow's scans will reveal this time. And the down side of not cutting into the ugly shaped boob is that they keep doing ultrasounds on it.) Hug !!! Jen
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Lauren I'm a control freak too 😁 so I'm trying to control it by putting these pills in my mouth daily 🤣
Forza we are in your pockets tomorrow for your scans so you're not alone! I'll bring the wine 🤣
Hope everyone is doing OK
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Hi Forza,
Yes, 6 weeks is very early, but I was really enjoying the no pain thing, haha. They are better today though so maybe it was a simple flare like Traii suggested. Or the shrinkage hurts, I like that theory too!
Wishing you the best with your scans - hoping the anxiety isn't too bad for you and things keep moving in the right direction.
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hi, just want to share my experience. I still get occasional sharp pain from my lung and flare up on my liver. I assume it's mets responding to the medications because my CT scan shows stable with shrinkage. I guess only CT scan can tell the truth. I just leave anxiety to next scan week and stay positive until then.
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Nerve damage and nerves waking up can cause sharp pain and twinges
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Lauren,
My MO told me that flare is real and causes pain. I'm betting that's what you are feeling.
Forza - I'll be in your pocket as well. I'll bring some chocolate.
Waving at everyone else
Laine
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Thanks everyone for the reassurances - much appreciated. :
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hi Lauren , How are you feeling?
Hi Forza, How'd your scans go?
Hope everyone else is ok x
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Hi Traii,
I’m doing better, thank you for asking.. A bit of a food coma going on (thanksgiving tradition 
) but otherwise the neck nodes are not as sore. Hope you are well too Happy Thanksgiving, USA - hope everyone had a happy healthy day.
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Hi Laureen and all Kisqali pals. I also got back pain after started Kisqali. About 8 weeks after. I have met in the T10, but did not feel it before, last months I had manageable pain on the right side of the spine and also ar the area where is my T10. So I also assume it can happen while the drug is doing its job
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And for the ladies who are on the first line treatment, even after failing kisqali (I hope it will not happen for loooong time) there are still antihormonal options (faslodex, tamoxifen) and targeted drugs (verzenio-similar to kisqali, or piqray if you develop the pik3 mutation, or affinitor pills) so still a lot of time before chemo. Also many new drugs are in the trials
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maaki good to know as I wasn't sure if we could take same type CDK Drug again....You ease my mind 😁
Lauren enjoy the food coma! 😍and all USA Happy Thanks Giving.
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Kisqali can cause back and joint pain. According to their web page pain isn't an indicator of efficacy but it is from the drug. I have had fantastic results. I took the Therapy for 8 months that resulted in shrinking mets in lungs and sacrum some resolved. What is left is inactive or dead. I have been off kisqali for a year thismonth with close monitoring and scans. I take letrozole with D and calcium. There is hope for you all.
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Hi all,
Like most of you, I check in regularly to catch up on how everyone is going, so in general terms I commiserate with those who have aches, pains, dry skin, thinning hair etc etc. It is one of the few places we can vent, compare notes and follow each other's unique Kisqali journey.
It is so uplifting to read posts like those from Maaki and JoE777 who reassure us of future options. I hope we have more stories like that to share as we move forward.
I don't have any tests scheduled till mid January, so intend to enjoy the Xmas season with the occasional bevy and maybe a chocolate or two!
Love to all
Jackie
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hi all !
I replied twice Thursday on my phone but it keeps disappearing. Last attempt , laptop this time.
Context : K for me first line and on cycle 6. My radioactive bone scan and breast echo showed a little shrinkage everywhere and the breast tumor is inactive , just those lymph nodes under my armpits are very stubborn. They also concluded some "possible spine mets" are actually arthritis. 3x20 minute scans to get up close and personal with those "possibles". Oncologist thought me very young to have such extensive arthritis , is he kidding me ?? My tumor markers were normal , they always are so useless to follow up in my case : 17 this time for people who follow their markers closely. Next scan half February.
Also oncologist : the random shooting breast pains apparently are just from left behind scar tissue ?! I could see it on the echo so sounded plausible.
Also oncologist : once Kisqali starts failing , lots of other options depending on where the cancer causes a riot before proper chemo infusions. That was enlightening as usual :O
I thought it was difficult being really happy because I feel the same as at dx or as last year. Without scans I wouldn't know any better.
Annoying new side effects : getting a couple of mouth sores. Boooo. Not sure if they'll disappear by themselves or need industrial measures ... That is depressing , I like to eat
Thinking of you all xx
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