Ribociclib/Kisqali with Letrozole - Any one on this combo?
Comments
-
Hi all, I am 36 and this is my second round of breast cancer, I was first diagnosed when I was 29 with Stage III and now I was recently diagnosed with mets in my bones. I was also diagnosed with Grave's Disease last October as well. I had surgery about 2 months ago to place a titanium rod in my right femur to stabilize my leg since the cancer was so bad in my leg, since then I started the Kisqali/Letrozole regimen and have all the lovely side effects associated with it (fatigue, low back pain, thinning hair, nausea, hot flashes, etc.) Recently since being on the combo drugs I ended up in the hospital with a temp of 104.3 and a rash across my right breast where my implant is. After a lot of antibiotics and then my plastic surgeon looking at it, he determined that my implant needed to come out, so now I'm left with one implant and trying to decide if I should have the other one removed and go without implants or have smaller implants placed but I don't want to have to go through this hospitalization thing again and possibly lose implants again because of the drug combo. My MO blames everything on the combo and how it lowered my immune system so much. They don't seem to know how to treat me since I have cancer as well as Grave's Disease. Does anyone else have this or am I a medical mystery? I also would like some feedback on everyone else's experiences with these drugs, would you keep taking it even though there are all these side effects, would you not have started in the first place? I also get really emotional now since taking all these meds, I cry for no reason or just get upset at nothing, anyone else deal with this too? I want to try alternative treatments as well, like dealing with the immune system since this is all immune related, any thoughts?
Thank you for taking the time read this and for any feedback anyone has.
0 -
Hello fellow warriors! This is my first post, although I've been dealing with breast cancer since 2011. I'm 45 years old, married with two school age children, and a full time career. After 5+ years cancer free, in Feb 2018 I was diagnosed with stage 4 metastases to bones only, no organs (which is good- right? Although it's in lots of bones!) I've been on Kisqali/Femara for 3 cycles now, and feel pretty well. A little hair thinning and tired, and low neutrofils and WBC so I had to drop to 400 mg and 2 weeks on/2 weeks off cycle. I'm so happy to find this thread because I don't know anyone else on these meds, and it's very scary to reach stage 4. So far it looks like all your results have been very positive, which is uplifting for me! I have my first pet scan scheduled for the end of this month, so I'm looking forward to see the results. My CEA tumor marker has dropped 67% in 2 months, from 153 in March to 50 in May, so I am thinking this may be working but don't want to get my hopes up too much! Have others seen such drops in tumor markers? Others on this reduced cycle? God bless you all.
Also, Odinsmom26, I have an acquaintance who had early stage breast cancer and graves disease, and is well now. She had both her implants removed and made many changes to her diet (going organic etc) and feels that cured her graves disease. I don't know much about it but hope this may help you. P.S., I still have 2 implants and have not done the same but her results seem so dramatic I thought I would share.
0 -
Odinsmom, I feel like my side effects have been less and less as the time goes by minus the hair thinkng and the emotional grumpiness that comes with menopause. I have a similar story to yours although a bit older than you when I first got diagnosed (33 and then 36 for second time). I feel like this combo is worth it and it is better than chemo at this point in time as it gives me more time till I face chemo again, I see chemo as my last resort. I don't have your other dx but if it messes with your general health I would remove the implants. I am thinking if getting my recon surgery and my plastic surgeon just gave it the green light.
I dont know much od your other diagnosis but can you do DIEP?
Hugs.
Lola
0 -
Odinsmom26
So sorry you have joined this group. I hope it’s a comfort to know you are not alone as you fight this bitch of a desease.
I just finished my 8th cycle of the Kisqali/letrozole combo. I’ve had every single one of the side effects, or so it seems to me.
My latest comfort was buying two cute summer hats to hide my see-thru hair! During my week off the Kisqali I treat myself to spicy food, and longer walks with my Boston Terrier and shopping with my friends.
Would I have taken this combo knowing all the nasty side effects? Yes, but I have decided that when the drugs stop working more Chemo is not for me, but I’m much older than yourself.
I wish you strength as you embark on this journey.
0 -
Odinsmom26 welcome to the thread! I'm sorry that I don't have any advice for you. Some of your symptoms sound a lot like adverse effects of aromatase inhibitors, but I'm sure throwing Graves's disease to the mix is not helping
and maybe even making matters worse. I'd personally stay on any drug that will stop progression of cancer without making my life intolerable, but the definition of "intolerable" is probably different for all of us. One of the reasons I want to stay on Kisqali is that I feel great. I know some ladies on the forum take turkey tail mushroom to boost their immune system, and I'm actually thinking of taking it as well. I will ask my MO first of course. She's very open to non-conventional treatments as long as they don't interfere with medications.Mickeybaggs hello and welcome as well! Let us know the results of your scan as soon as possible, I'm curious!
Ladies, thank you for understanding me and for your support. I feel much better now, after having a long talk with my MO and having some time to think about i I realized how insane I was to be disappointed about the lack of progress vs. tumor shrinkage. Actually I'm kinda embarrassed now
Getting labs done next week.
0 -
As this combo still seems so new I thought I'd update my progress. I'm into my 5th cycle and the only side effects I've had is tiredness and a bit of nausea and that was worst during the first two cycles. I've changed when I take the combo to after dinner instead of the morning. I find I sleep better and have far more energy through the day. I clean my hair-brush out thoroughly every Monday to compare hair loss from the week before - so far it doesn't seem much different. At 60 I'd already started to feel the aches and pains of old age, so can't blame the meds for that! When I think about it, the worst side effect is motivation - getting out and exercising etc.. it's not that I can't, I just have lost my will to do it. I really have to push myself.
My last lot of bloods were better than last months and I had a bone density test which put me in the normal range. I had a CT scan a month ago which showed the cancer had halved in size in my breast and liver.
I was dxd du novo at 60 in January so this is the first treatment I have been on. So far so good. I do wonder how long it will keep working for, and whether I will continue to feel OK
I hope all those on this combo benefit from it - for some it may take a bit longer to really show signs of improvement and everyone is different, and so are our cancers.
Big hugs to all
Jackie
0 -
Hello ladies!
To the ladies that just joined I am glad you found the forum it helps (I dont know if it is ok to say welcome here), you are welcomed to share anything at least!
I am on my sixth cycle, my week off, next thursday I have my second scan (freaking out on the inside). My side efect have become easier every month that passes by. You get used to it and your body does too.
My MO is not a fan of immunity boosters. I have no idea why. But please if you have any options that your doctor approved tell me so I can present it to her.
I am the youngest here as far as I know and I am full of hope and trust on kisqali! I have been up and down physicly and emotionaly in past months! Sometimes cant still acept my DX on this age! But it is what it is, you learn to enjoy even the smallest things. And it is a great thing because you appreciate more!
I really hope you have great results on you scans and Odinsmom26 I hope you find the fine line between both of your conditions!
Have a great weekend!
Big hugs!
Ida
0 -
It's been awhile since I visit this forum. Welcome to the new ladies, we are here to support each other.
Odinsmom, regardless of the SE, I did not regret being on this combo. I feel much better compared to being on chemo a year ago. Though the neutrophils are low (lowest was before I start my recent 5th cycle at 1.0), Doc says that we are less prone to catch infection unlike during chemo.
My fatigue is better this round, itchiness gone. The only SE for me now is the aching lower back. For temporary relief, Doc has prescribed me dexa fr 2 weeks, but I am feeling better after less than a week so I am keeping the meds till it hurts terribly again.
Mickeybraggs, I am on reduced those on the 3rd day of my 1st cycle until today 5th cycle. I am glad that the Doc reduced it as I was having diarrhea thrughout the day and nasty headache on 600mg. But on 400mg, I am able to work though I am doing it half a day now and working from home, and run my daily life like almost normal. Of course I set my own limit to not overwhelm myself with daily issues. But it has bren great.
I will be going on my 2nd trip since MBC diagnosis, if all is well, I will be heading to Japan in June. Need to take a break from all that's familiar and venture into the unknown 😊
Keep faith ladies. Hugs!
0 -
Hi girls! How are you? Today I am starting my 12 (12!!!) cycle of this combo : ) My neutrophiles are too low - 0.7. However I will continue my treatment with 600 mg. Otherwise if I decrease the dose now to 400 mg then I have only one more chance for decrease. And afterwards there is a risk to be kick-off the study. SO thank you very much for your shared experience - I read here that somebody has 2 weeks on/2 weeks of cycle. So I think just to have some days pause (not officially for the study) and then to continue. Any new results? I have no any dramatic shrinkage. I have liver meta which are more or less stable from the beginning of the study. The most troublesome problem for me is the hair loss (parisalways...) But yesterday I calmed down because I decided to bye a wig again and to continue with a wig. I think I''ll feel better. Is here anybody with more than 12 cycles? What about the hair?
Hugs!
0 -
Vazmutena ... congrats for making it thru 12 cycles! I am just starting cycle 8. Itching/rash has decreased significantly. Like you, my only real SE has been hair thinning. Because I had so much to begin with, it seems to be only noticeable to me. But it is definitely a lot thinner. Seeing onc tomorrow for monthly blood work check. Hoping my numbers are good enough to continue.
Kathy
0 -
Well, blood work was good but tumor markers are creeping up for the 2nd month - ugh. Not significant, but I want to see it going the opposite direction. Saw the NP today. She said the MO will not be terribly concerned because I started over 700 in November. In February I was 177. Got as low as 117 in May. Now 137. If it jumps significantly she will scan (just had scans in April). What the hell?? Anyone else seeing this?
0 -
My grandmother was part of this clinical trial. I posted in this topic months ago. Unfortunately she lost the fight last week - just 9 days after she turned 69.
0 -
good12, my condolences on the passing of your grandmother. I think you loved and cared for her very much and she will leave a special place in your heart. Now is time for you to take care of yourself - sending you a big hug
Jackie
0 -
my 1st tumour marker was at 500+ before the trial and 2 months later it went down to 74. But it was done in a different lab. I just did my 3rd tumour marker test after another 2 months, sent to the same lab as the 1st. Waiting for result. Hope it is consistent as the 2nd test.
Other than that, in my 6th round. No more itchiness. But my lower back pain is increasing. I really wonder if it is the side effect of femara.
Is anyone on Calcium + D3, or any other? My doc prescribed me metocal D3 for bones and xgeva but the pain is still strong.
0 -
Hi Everyone
I have had so many skin problems my dosage has been reduced to 200 mg (1 tablet) . My back pain is increasing also , I think it's the Letrazole . The hot flushes are getting worse. I will be having scans in about 4 weeks and I am already anxious and imagining symptoms . My skin is a lot better on one tablet but my calfs are still pink and dry and flake , but I feel so much better. I was taking caltrate with vitamin D but my calcium levels started to rise so I have had to cease taking it. I also have an Xgeva shot once a month.
I will let you know how my scans go I have everything crossed.
Mandy
0 -
Hi All,
I thought I would share a funny (but good) story.
I went for a CT scan and blood work on June 12, with an appointment scheduled with my Onc. on June 13. The trial nurse called me late in the afternoon to report that my neutrophils were at low of .7, she wanted me to retest before my appointment on the 13th. So that afternoon I ate lot of sunflower seeds and a lot of broccoli with dinner! (My husband read that these foods were good for boosting your immune system). On the morning of the 13th I went for my second blood test. The results were.......1.1! Crazy but true. I am now starting my 10th cycle at full dosage of 600mg. My scan was good, stable, and my tumour markers are down to 56.
Eat your broccoli Ladies!
Cheers from Vancouver, Canada.
0 -
Hi everyone,
I have been very concern on my labs even if my oncologist is not and i always try to research on ways to correct the the ones that gets out of range with approval ofcourse of my doctor, someone in another topic suggested coriolus/turkey tails
Update on my labs, my WBC and Neutrophils continued to trend down it went from 4.2 to 3.5 and 1.6 to 1.2 respectively, i increased my turkey tails from 2caps to 6 a day they said you can take up to 9 a day, June labs results: WBC is 4.0 and neutrophils 1.4!!! I'm very happy and will continue to take turkey tails.
I have my 1st scan since starting Kisqali this July, crossing my fingers..
0 -
Hi Ladies,
Hope you all are well and with little side effects.
I had my second scan and the clinical nurse confirmed that all is stable from the last scan. I will take that as now I can move forward with planning my recon surgery. My WBC counts have been in normal range so that s promising.
Hope all is well with you.
Lola
0 -
Hi Kirat11
Based on your comments and some research I’ve started to take Turkey Tail supplements. I just picked them up yesterday. Took two last night with dinner and two this morning along with my Kisqali combo. I have felt nauseous all day. This sometimes happens with combo anyway but I was wondering if it worse because of the Turkey tails. Do you find yourself suffering from nausea?
Susa
0 -
Hi Susa,
I have been on the combo for 4 months going into 5th this July, had nausea on the 2nd day only and then again in the 1st week of last cycle which included lost of appetite for 5 days, relieved by ginger candy and anything sour. I guess really no concerning effect on taking the supplement with the combo, atleast for me...last cycle was really bad for me, also had the skin rash on my lower legs which i don't have this time around, thank goodness!
I take my combo at night as advised by my nurse to mostly sleep off side effects like nausea..
0 -
Hi All,
Quick question for everyone. How many of you are taking your drug combo at night?
Let me know.
Cheers
S
0 -
I take mine at bedtime. Never had any nausea.
0 -
Hi Paris, initially I took Kisqli after breakfast, but found I felt nauseous and tired throughout the day. I am on my 5th cycle and have been taking it at night for two months. I take it after dinner, and if I do feel nauseous (rarely) I have some pills that help. I think its easier to sleep off the worst of the side effects and have some energy through the day.
I take my femara at the same time as kisqali and have found I get the worst of my hot flashes through the night and have reasonably symptom free days.
Jackie
0 -
Hello ladies!
How are you all doing? How are you dealing with the summer the ones in the north hemisphere?
I am on my 8 cycle already! And I have really conservative doctors! (Italy is where I am being cured). They dont agree in using any kind of herbs! They dont agree in using medication that makes hot flashes easier. But they said I could go to the beach whithout any problem. Meanwhile my neutophiles are near 1.5-1.7. ( I have eaten any brokoli and sunflower seeds and pomegranate and any kind of thing that boosts up my immunity).
Has any of you been to the beach these months how did it go?
I hope you all doing good! I have lots of love for you all!
Hugs
Ida
0 -
Ciao Ida!
Where are you being treated? My wife is going to a major hospital in Milan. We've just come back from a beach holiday in Tuscany and my wife had no problems being in the sun or at the beach or the pool. I dont think Italian docs would have anything against it, if anything they tend to suggest it, am I right? 😉
0 -
Hello Daniel
I am being treated in Aviano!
I was at the beach yesterday and I went great! I am thinking about a few days at the beach cos vit D will help me with the bone recovery, they sa
0 -
Hello ladies!
I had my 2nd scan last Monday, met with oncologist today for results, i'm happy to share that all bone mets now is all in metabolic remission! The breast tumor also has significant decreased and has minimal uptake on the pet scan. I will be continuing the femara/kisqali combo for now, labs monthly, xgeva every 3 months, all my supplements ( which is a lot!) and will be going back on the drawing table to discuss surgery.
I am very grateful for such blessing, we got this!!
I have cancer, cancer does not have me.
0 -
Hi Ida,
Did your Dr give you a list of foods to avoid while on kisqali? I was given a list whicu included grapefruit, pomegranate and a few others. I was juicing pomegranate before the trial but i stopped immediately. Some meds multiplies the effects of kisqali and some suppresses.
Check the link: https://www.drugs.com/food-interactions/ribociclib,kisqali.html
On the other hand, I do take my meds at night and no nausea issues. But does anyone have insomnia problems? It happened when i was on chemo and it is happening again now. 2 weeks of unable to sleep which resort me to sleeping pills. Don't want to be dependent on it so trying to find ways to fix my sleeping problem.
I am now on 7th cycle. Had my CT done but result is not out yet. My 3rd tumour marker reading reduced further from 500 - 74 - 63. Praying that the CT shows result. But my spine L5 still hurts the same though.
0 -
Kirat, so pleased your results are good and the kisqali is doing it's job. I started mid feb, and am due for my 2nd ct scan next week - I had good reduction last time, so am interested to see if things have plateaued, all is so new with this drug and I haven't seen many people sharing their results.
I also seem to be one of the lucky ones with minimal SE
Tata, hoping you get good results too!
Hugs to all
Jackie
0 -
Hello Tata!
My doctors said I should not eat grapefruit and all kinds of oranges. And then a few weeks ago I asked him about royal jelly (bee milk they call it in my mother language or papa reale in italian) and he said dont use any kind of herbs and the royal jelly either.
Oh and for the nausea! To be honest My docs suggested I take the pills in the morning an hour after breakfast and I never had problems with nausea and they mentioned that if I take them at the last part of the day it might cuse me insomia. But I have to mention my breakfasts are pretty big.
Jackie i have already done two scans. And I am on the right path my mase is reduces and my bone is healing.
0
