Ribociclib/Kisqali with Letrozole - Any one on this combo?
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- Thank you Jackie and Anna! Aw your responses made me feel 10x better. This was an excellent combo as far as side effects. I didn't have much, so maybe the next will be just like it! Fingers crossed.
❤️❤️
0 - Thank you Jackie and Anna! Aw your responses made me feel 10x better. This was an excellent combo as far as side effects. I didn't have much, so maybe the next will be just like it! Fingers crossed.
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kkita, glad you found us. Most of us tolerate this drug combo fairly well. I'm on 600mg and find best I have them before bed.
Pepper, sorry to hear of your progression and hope your next drug does wonders and is as tolerable as Kisqali
My scan results of lung is in. Same as the last 3 scans so happy to continue on 600mg and continue monitoring.
Hope everyone is well as can be x
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Oh Pepper , I could feel that to here , and then read your history signature and lost it completely. My menopausal emotions are no joke.
I genuinely hope they find you a similar kind combo that does keep those baddies asleep. You've been through worse drugs , so you can do this. Keep us in the loop ?
Jenn (emotional rock bottom having near panic attacks when people sneeze in my general direction)
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Hello ladies!
I am glad to read some good news. I hope our Austalian ladies are doing better now!
Dear Pepper! If you are in instagram I would suggest you to follow: secondary sisters. One of the girls that have that page had the same situation as you with pablociclib and the gave her a couple of options and the one she choose is working cos she just had stable scans. The girls are very comunicative. Please know that you can come here for a vent anytime. We are here for you!
Now can I vent? 🙈 I have to travel to Italy again. I was there last week and I have to go there asap! 🤦🏼♀️ and I am scared and pissed.
Good bless you all!
Much love
Ida
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Italy?? Oh wow. Stay safe.
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Italy! Oh no Ida, I thought a travel ban was in place there? Take care hun
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Traii , travel for essential or necessary reasons is allowed.
most European countries are going in varying degrees of lock down now. I keep telling people , don’t come to Bruges , musea will be closed anyway. Belgium going in a full lockdown from tomorrow : bars , restaurants , markets, football , concerts , schools ... all closed. Food shops and pharmacies stay open.
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Hello ladies! I wasnt allowed to enter Croatia so I am back home! So I wont be able to go to italy till march 20th cos I got back from there 8 days ago! I am trying to stay calm! I hope they will find a way to send me the medication from there!
I dont know what is going to happen but I hope everything will turn up for the best!
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forza we are not YET in total lockdown
Schools will open on Monday basketball in Victoria Aust have closed, grand prix shut down and no events over 500 people open. Workplaces 100+ are closing at some places. Shops are crazy. Every day needs and more off shelf and coming out scarcely throughout day!
Ida, Did you manage to phone your onc to see if you can get bloods taken elsewhere? Then they can send meds.?? I'm hoping too everything turns out for the best for you xx
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Hi everyone,
Had my onc visit this morning. My cancer antigen 15.3 count was 30, down from 39 and is now in the “normal” range. My sugar and cholesterol are also normal. This news was particularly important to me because I have been on a keto diet since both blew out of control around 2yrs ago.
Her advice on the corona virus; keep away from those who have recently returned from overseas or are symptomatic, don’t take a cruise, if you have a temp stop taking the kisqali (this applies to all illnesses), chest or heart pain phone dr for referral for testing, avoid hospitals if possible, use drive through testing, continue what you’ve been doing since diagnosis. If things get really bad they will initiate phone consultations and mail out any scripts I need.
I feel a bit like we are all in a dystopian movie as I watch and read about what is happening around me and overseas, and as we head into winter in the Southern Hemisphere it will get worse. Our government, like trump, seem to be changing their story every day, and totally out of their depth. I hope we all learn something from this pandemic. Large food retailers have designated 8am to 9am for disabled and pensioners to shop so they can get necessities without being trampled. Gatherings of over 500 people have been cancelled, schools may close and I am sure many other changes to our lifestyle will occur.
Ida, I hope everything has worked out for you, I felt tense just reading your predicament.
Hope the rest of you are keeping safe and well
Jackie
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Hi all !
Very much on lockdown in Belgium , the measures getting more severe every day. We also closed the borders. We (I should say our media) were not happy at all with the US (no it’s not a hoax) and the UK (going for herd immunity ???) but it seems they’re finally on board now. Good , because having been confined to contain it for well over a week whilst brits were still down the pub even last night didn’t sit well with anybody here.There was no escape going into hospital for monthly labs and that awkward chat. Lots of checkpoints with handsanitizer , temperature taken and no companions or visitors allowed , so the hospital looked spookily empty. They are well prepared for an influx of corona patients here (we learnt from the tragedy in Northern Italy) so we can only hope for the best.
Me : “I’m really really really not sure I want to continue this treatment with covid19.” “
Them : “Do you want to be dead before summer?” Me : “???”So I did start box/ cycle 10 yesterday. But it doesn’t feel like a victory this time. My bloods were slightly neutropenic but even without an extra break , they promptly gave me 2 boxes of K anyway so I don’t have to come back into hospital too often. Next appointment : labs / bone scan / lung scan in May.
Ida : I really hope you got it all sorted x I’m very sad Schengen seems to have been cancelled altogether but I understand as long as countries are not all taking the same precautions.
Kanga : great news on your cholesterol
I’ve started eaten some meat again after having several long vegetarian spells. Could never do keto or carnivore though. Although ... never say never seems my new normal. Schools here have been closed for some time , they might not even reopen this school year. Gatherings of over 3 !!! not allowed unless you live in the same house. Supermarkets only allowed 1 person per 10 square meters, so the queues they show on tv is not people hoarding but a line of 1 out , 1 in. Keep safe friends
A very anxious Jenn
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Hi all,
It is so reassuring that so many of you have benefitted from this pairing of meds!
I am planning to start Kisqali tomorrow to add to Letrozole which I started this past Monday and I wanted to reach out to all who have been on this combo with a few questions- first just a brief note on me:I was diagnosed stage IV with extensive mets to bones and liver. My first and only treatment was Taxol chemo infusion weekly (3 week on, 1 off) and I tolerated this regimen well for 21 months with an inactive status seen with my PET scan done 6 months after starting treatment. Cold capping allowed me to keep my hair throughout the entire time and I only had a little neuropathy in my right hand that was not very bothersome. Fortunately, I only had to hold treatment one time for one week around the 19th month of treatment due to slightly low counts. In Feb, after experiencing increased sciatic pain, a new scan showed a small spot on my sacrum that returned. My oncologist immediate stopped chemo and I underwent a bone biopsy to retest the cancer. There were not enough cells to run the test but I qualified for a clinical trial due to my initial FGFR mutation. While I was off all treatment for 5 weeks to undergo the biopsy and for testing to get approved, my liver mets returned and increased, although my doc assured me 3 times throughout this period that she felt completely confident my cancer would stay in check. I ditched waiting approval for the trial after my liver mets increased, switched oncologists the same day and my new doctor started me on the Letrozole with Kisqali to follow as soon as it is approved by ins. I’ll also be on Goserelin injections.
I was wondering if anyone on here is using or has used Turmeric, IP6 Gold or CBD oil during this combo? I used all three during my Taxol and am wondering if these may have helped me tolerate the side effects and remain on it so long? The pharmacist told me to stop all of these prior to starting Kisqali and I’m hesitant to do so. I’m having tons of arthritic pain, and now increased back and rib pain since stopping chemo and starting the Letrozole only. I do have a healed T11 compression fx and a rib fx that were seen after my initial diagnosis and 4 currentbulging thoracic discs though. It sucks to not be able to differentiate what is “normal” pain vs pain from mets.
Thanks for any insights...
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Hi Rarenemo,
Hope you get some good results on this combo
Letrozole seems to be the main cause of all our aches and pains because it reduces our hormones. kisqali has its own list of side FX.
Different people use different strategies. I went keto as I had high sugar levels that were causing inflammation in my system. Once I got my sugar under control, most joint pain etc ceased.
Kisqali does have some serious side FX so always check with your Oncologist if you take any supplementaries, and read through the warning on the Novartis web site. Things like grapefruit, and some oranges can be bad for us.
Only other thing I would suggest is start off “clean" without any alternative medications besides Panadol etc if you need it. After a few weeks, if your symptoms get worse, add 1 alternative and give it a few weeks to see if it works. Some people take a cocktail of pills and powders and have no idea if they work or not... save your money. Better spent on chocolate 😁
Jackie
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Kanga,
Thank you for the reply. I stopped all foods with added sugar about a year and a half ago, but not naturally occurring sugar. I may look at a keto diet and see if that helps! I’m taking your advice and stopping the added supplements and will see how I do.
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hi Nemo
I have bulging discs too and arthritis elsewhere. I was actually hoping they were cancer because the bone mets shrunk with Kisqali. The arthritis ridiculously painful and stops me doing a lot of things I’d like doing. I guess I’m lucky my mets never really hurt so far.
My opinion, no to supplements. Or ask oncology (again). They have a computer program that cross references all your drugs to check for interactions. There’s also a website but that one only works with drug names , you type in every drug you take and it even says why when it finds issues drugs dot com /interactions . The Kisqali leaflet is long enough , give that a read.
To be honest my only side effects are serious hair thinning , nails crumbling and I’m floppy in the recovery week. So probably no need for extra pills there. As Kangaroo says : it’s that letrozole pill that’s small but feisty.
I’ve actually moved onto extra sugar , *if not now then when* was my logic ^^
Good luck Jeb
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Hello ladies, I havent been here for a while. Kisqali still works for me, my CA15-3 is in normal range, and even though it was only a little bit above normal at the beggining it went slowly down (6 cycles). to the numbers I had prior progression.
Rarenemo, regarding supplements. Yes, as said here some can interact with the kisqali. I can google calculators on interaction and post it here. One of the supplement which interacts with CDK 4-6 inhibitors (Kisqali, Ibrance, verzenio) is CBD, so i would not recommend it. Other which you mentioned are ok, I think. I take i3carbinol, a lot of vitamin C, D3,K2, magnesium(I have low), calcium, and many other supplements but with dr. approval.
My question for all of you. Did any of you got shot against pneumococci? It is nane is Prevnar 13? It is given to kids or old people to prevent bacterial pneumonia caused by Streptoccos pneumonie, which can be secondary bacterial infection while your body is fighting viral pneumonia, so like now in the case of COVID-19. We all have low neutrophils which fight bacterial, so I think it can be of help. But I am not sure when to get it? Before or at the begging of the kisqali cycle? Or when? Thank
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here is drug interaction checker:https://www.drugs.com/interaction/list/?drug_list=3790-18417,1573-0
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hi maaaki,
So glad to hear you are doing well on this combo
I’ve had the shot against pneumococci. Can’t remember when I had it in the cycle, but do know the best time to get anything done is the week after your week off Kisqali because your white cell count has had a bit of time to recover. I didn’t have any reaction or symptoms to the shot.
Jackie.0 -
Good evening ladies, it's been a while since I've posted here, but just popping in to give an update. I had my pet/Ct scan and bloodwork earlier this month. Everything is stable. No evidence of disease and lung and bone mets have shrunk, resolved or no longer active. I have been off of Kisqali since November 2018 after treatment from April to November of 2018. I've been on letrozole and calcium and D alone since that time. My oncologist said I could go this way for years.
Take heart if you're beginning this treatment. It's one month at a time.
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Wow what amazing news!! Best wishes for many many more years of health
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Maaki , yes , like Kangaroo said , first couple of days into a new cycle. Admittedly I’ve not had any vaccinations for years. Doesn’t stop the doctors planning them though ☺️
Texas Joeee ?! : why did you quit Kisqali ? (Yes I’m braindead). I would love to stop them temporarily and just be on letrozole. This covid is scaring the 💩 out of me. I’d feel so much better mentally knowing I’m not neutropenic. My gp has been hospitalised with corona, I’m not impressed at all. Today I had to get shopping done. This quarantining is not bullet proof when you live alone and have to go to appointments.
Stay safe everyone (x
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Forza, did not quit taking kisqali. My oncologist suspended it after two consecutive rounds of pet/Ct scans and sclerotic bone in the affected areas, shrinkage and disappearance of tumors and normal blood work. The moment there appears to be be any active disease I'll begin kisqali again. I've been on letrozolealone for almost a year and a half. She felt there was no efficacy in treating me with it on inactive diseaseif letrozole suppresses it. The side efffects of the kisqali are significant. My response to the drug was immediate. I do hope you have the same success.
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Hi all, hope you are all keeping safe during this Coronavirus outbreak.
JoE, love your story, hope we will all be there some day!I googled a pattern for a face mask, and dug out the sewing machine. The result... my new shopping outfit! Still no toilet paper or hand sanitiser to be had... lucky we had done a Costco shop before the outbreak. What other emergency in history have people decided “oh, we better stock up on toilet paper"!
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Hi Aussie sisters, I have been told that there will be phone consultations with my oncologist in the future, I can do blood tests and injections at a local GP. Keep safe, everyone.
Kangaroo, I just got approved of priority assistance by wooly because I have compromised immune system caused by kisqali. I don't have to go shopping any more. You will be able to do the same.
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Thanks for the info Opera👍I’ll get on to my oncologist tomorrow, I’m assuming I’ll need a doctors certificate.
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Looking good Kanga!👌 I ventured out quickly to the shop today for a couple of things as my husband's working flat out at the moment and wanted to give my gorgeous parents a break from going for me (even though they told me off for going 🤦) love them to bits❤
yes Opera, I was stunned when I called my hospital a couple of weeks ago and they mailed me my Kisqali! I did bloods locally and skipped my bone injection this month. My onc did phone consult Friday. We are following same process next month and she will have my Xgeva sent out with my Kisqali so that my nurse at my local GP can take my bloods and do injection same day.
Has anyone had the flu injection and if so, when is the best time to have it done? I have flu like symptoms last week and into off week of Kisqali so not sure if that would effect flu injection? Never had it before!
Stay safe everyone xx
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Thanks JoeeeE. , I’m sure you wrote about it before , just couldn’t remember. Great result for you. I’m on cycle 10 , most has gone inactive or shrunk significantly. My marker was always normal so they can’t use that. It doesn’t help that the healthy people I know are all freaking out so badly about this corona. And my gp is in hospital herself. I tell myself every day : just 1 more , you can do it. Such a drama queen.
No chance at all of getting the K mailed here. I asked oncology and really insisted because I was planning to move to a more remote location (clearly that move not going to happen any time soon with this lockdown). They did compromise and promised giving me 3 boxes at once “maybe” ... if my May scans and blood look good , so we’ll see. The bone X-Geva is 4 in a box so that’s easy enough , just gotta store it in the fridge.Looking really good Kanga 👍👍 I have mask envy !! I have patterns but too lazy to get the sewing machine out , not good at sewing either. Here there’s limits on how many people are allowed in a shop at any given time so masks are not that essential , actually makes for a nice shopping experience. 1 person per 10 sq meter. Toilet paper plenty here. The hand sanitizer has gone but pharmacies make their own to sell. Quite strong those so not comfy on those already dry hands.
At least the flu has been and gone in the northern hemisphere. Small rainbows
stay safe friends ()0 -
Been on Kisqali + letrozol for 7 months. Widespread bone mets. Condition stabile but no shrinkage in lesions. Have low blood counts almost every time so have to delay each new cycle. Hair started falling out 2 months ago. Depressing as I work and have been keeping my health issues to myself. Now it is obvious that something is very wrong. Any advice on the hair?
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hi Toril !
My counts were too low twice so delays twice and then on the third box/cycle they swapped my doseage from 600 to 400. On 400 my bloodwork is just good enough to keep going on it. And I’m in the middle of box 11 now. I had shrinkage but one bone tumor is stubborn so we’ll see on the next scan. (My breast tumor and thyroid tumor are flat and inactive so I’m very happy with this treatment)
Stable is good news right ??? I know shrinkage is better. But stable is very very good.
My hair also fell out at an alarming rate , now it still does but less so. However I had so much hair (yes really) to start with nobody seems to notice. But I notice. I wish I had advice for you. I sometimes do crafty braids and sleep on it whilst wet so I have more “floof” in the morning. I’ve been told it could be the Letrozole and Zoladex so the hair thinning is just a menopause side effect. I’m pretty sure it’s the Kisqali.
Sorry I can’t help . This thread has gone very quiet since corona but I hope someone pops up with tips
Stay safe , Jenn
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Gday Toril,
Like Forza said, stable is good. A lot of us have reduced our doses to 400g and getting good results.
The hair thing is a horrible side fx and an obvious indicator to those around us that we are unwell. It's a time we need to take a deep breath and make some decisions.
*do we want to continue hiding the fact we have cancer and what are the personal/work situations
*how will my life change/or not if every knows, or just a few know about my condition
*wig, hat or scarf?
I decided for the wig to wear out and treat it more like part of an outfit. I bought it when my hair was really starting to fall out a lot, and got one that matched what my hair looks like. Most people don't know I'm wearing a wig. Other times, I tie or tuck what is left into a cap or hat.
I think if you tell people you are on a hormonal medication that causes hair loss, so are going to experiment with wigs, hats or scarfs, they will jolly you along. You can have a lot of fun with it and may find it takes a bit of stress out of your life💃🏻
As a side note, my hair has stopped falling out of about 6 months ago, and is now just “thin”... I can live with that
Jackie.
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