Ribociclib/Kisqali with Letrozole - Any one on this combo?
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Hi MTBM,
I was also taking tumeric prior to the clinical trial. There's not much info but when I did my research, it seems tumeric may be on the same pathway as femara so it may affect the effects of femara. My nurse at the onc office did research and it mentioned that tumeric can be used but cautiously so she suggested not to take it and maybe find something else to help with inflammation. I didn't use it in the end though i used to love my tumeric latte or just eat the tumeric paste on its own. Let me know jf you find something. I wanted to post the question tk novartis but has not actually done so.
On another note, does anyone have back pains from ribo? I'm on my 3rd cycle and seems to be getting more back pains this round. Hoping it is a side effect of ribo rather than due to the bone mets 😓. Seeing the Dr tomorrow. She is concern and wants to order the bone scan earlier.
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Hi,
I, too am on my third round of Kisqali/Tamoxifen combo. Aso receiving Lupron shot and Xgeva shot monthly since I have bone mets and am pre-menopausal. I have not experience a rash, my main side effect is hot flashes (mainly at night) and the past 2 weeks insomnia. I am tired to begin with and the not sleeping at night is making it worse. I took melatonin for years to help me fall asleep, and all of a sudden doing nothing. My dr prescribed a low dose of Ambien that I took a few nights and it did help, I just get afraid of becoming addicted to it.
I am hoping the hot flashes and night sweats calm down soon. Other than that, tolerating the combo ok. It is hard for me to tell if my lump is any smaller, I don't feel like it is, but I try not to think about that. I will have a scan in another month or so.
Anyone else have insomnia, and any tips besides a prescription sleeping pill?
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Hi jods520
I take Gravol 12 hour to sleep. Works great and my Dr. doesn’t object.
Cheers
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Hi dears! I wrote on the first page - I am on this combo from July 2017. Clinical trial in Bulgaria. I have mets in my liver. I have MRIs in July 17 (before the trial), October 17 and February 18. The mets showed small reduction. I am so happy to share this with you. Moreover I have read almost all pages back and I see that most of the ladies on this combo have good result on theirs tumors/mets!
Lets talk more about this. We are mostly sharing our adverse evnts. And this is the reason to look for your support this evening. I read that the hair is getting tinner. But I didn't notice this so far. Now after appr 10 cycles, 3 days ago I notes that my hair is not just getting thinner. My hair is falling. Almost like the chemo. if I take it in my hand it stays there. OK, liver mets are most important. But you'll understand me - falling hair is sth like my previous chemotherapy. I man the feeling inside, girls. I took some special shampoos and serums but my hair is falling while I ma putting the on my scalp. Any ideas?
Apart this I have heart oppression, palpitations, chest discomfort. Sometimes rash but light and manageable. No nausea! No wight reduction! Just on the contrary - I was 46 kg before the study. 6 kilos for 6 months - now I am 52 kg : ) Total impotence. But - ALIVE! Thank you, Kisqali! I had so nice moments with my small girls and my family! Thank you God!
Wish you luck, girls! Kisqali is superb!
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Hi everyone,
Recently diagnosed Stage 4 bone mets. Fluke discovery, when they took out my ovaries they found breast cancer tumors. Just a couple of months before I had a CT scan, no evidence of disease after stage 3 treatment. This disease is a sneaky devil.
First month of Kisqali/Femera. So far side effects are mild. Ive been able to work and exercise. Fatigue and sleeplessness as is usual with all of the treatments Ive had. Thank you guys for talking about turmeric! I had just bought a bottle when I read a post. I am taking D and Biotin. Ill stick with just those then.
Reading all your posts has kept me sane these last few weeks. I don't feel alone. This is a journey none of want to take, but blessed to be able to reach out as we take it.
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Hi Ladies,
I talked to the clinical nurse and she said the scan looked great. I could not ask any questions as she left à voicemail. 😊
Welcome to the new ladies and sorry you had to join us but this forum is great.
Hugs to you all.
Lola
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Lola I am so happy for you!
Ladies welcome I hope you have great news everyday.
I have a question to the ladies that have been on medication longer. I am finishing my 4 cycle now and I have spotting ( I didnt have any in the past months). I met with doctor, she set me a visit with the gynecologist on tuesday.
I just wanted to know did it hapen to anyone?! I know it might be wierd but it helps to know I am not alone.
Ps: I have done regular zoladex (lupron) injections combined with femara (letrozol)
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Thank you all for the support I have (almost overnight) developed pain in my abdomen at the level of my liver. Kisquali pamphlet said call so I did and had a blood test yesterday. Liver enzymes are way high (normal two weeks ago). Now waiting for a liver scan..., hope this is just a bump in the road. With all the good results I've seen posted I don't want to have to change treatment pla
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Hi, the only issues I’ve had with my lady parts ( lol) is dryness and pain during intercourse. Using over the counter moisturizer has to be applied 2x a week, annoying but effective.
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Lola, so happy for your nice news! Tell us some more details when you talk with your doctor.
Ida, sorry, but what does it mean: spotting? Is it some mild genital bleeding? No, I do not have it. Success with the gynecologist!
GVgirl56 - hope nothing wrong with your liver and eveything will be OK!
Girls, do you have problem with your hair? Mine is falling like I'm on a chemotherapy...
Hugs!
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Thank you Ladies!!!
Ida when does the spotting happen?
Spacetrace - what kind of moisturizer ate you using??!!! I feel like my libido has been depleted and feel bad for dh as I am never in a mood as the experience is a bit painful. Any suggestion on the moisturizer you use would be great as I don't want Mr C ruin my marriage these last 4 years have been not pleasant
Re hair loss I have noticed my eyebrow and lashes getting sparse and I feel like all the hair in my body is thinner or there's less of it.
I want to have my recon surgery done as I feel that it will help with a lot of the issues i am encountering in terms of clothes and feeling like a woman.At the same time I know my neutrophils are low so the recovery may be longer than usual but I want a certain level of normality in my life. I can't menopausal, irritable, clothing limitations and low libido at the same time. it will ruin my marriage and self-image. I refuse to let Mr C take over again. Giving up having kids that's where I draw my line!!!!
sorry in a venting mood!!!
Lola
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Liver Scan came back ok. Off of kisquali for the next week then we will see how my liver has recovered.I have had no noticeable hair issues yet
Thanks All
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Lola it is the first time it has been going on since thursday now!
Gv I am happy for you!
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tata_rosli have you had your scan?
jods520 I was taking valerian root for sleep but was told not to and was prescribed clonazepam instead. It worked, but I did not take it every night, too scared of getting addicted and having more sleep problems. I'm thinking of taking benadryl. I'll be back at work Monday and I'll ask if it's OK. Parisalways do you take the Gravol every night? Does it make you drowsy during the day?
vazmutena I'm sorry for your hair issues. I haven't been able to find anything on how to prevent hair loss during treatment. I'm starting to get paranoid about hair loss myself, even though I haven't (yet) experienced it. My family can't understand why I'd be upset, since it's my health that's more important than hair! It's hard for them to understand how I desperately cling to anything that makes me feel "normal". My hair has always been my pride and beauty.
Lolis - congrats!
GVgirl56 keeping my fingers crossed for your liver bouncing back!
Lolis I use Carlson Labs Key-E Suppositories for vaginal dryness, they are superb. I only use half a suppository and only every few days now. When I started I used half a suppository every day for 2 weeks. They do stain underwear so get some pads!
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Hi All,
Good news from my second CT scan. My cancer cells (they are in the pleura, which is the lining of the lung) are shrinking and there haven’t been any new ones appear.
I am starting my 7th cycle and share all the side effects mentioned. The most troubling is my hair loss and yes, it’s a big deal to me. I have a few eyebrows left along with some eyelashes but there is no end to the hair falling out off my head. I now use baby shampoo and volumizers.
Yes, Evagor, I take Gravol nightly and itdoesn’t leave me drowsy at all.
Hang in there Ladies!
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My first scans are in two weeks after 5 cycles. Anxiety is starting to set in already.but I'm hopeful that this combo is doing a good job. My itching/rash is much better this cycle, but my hairbrush is always full of hair. Thankfully I had very thick hair when I started. No other major side effects.
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Done with my bone scan today. Report stated that some are less intense (shrinking?), some are stable and 1 with marginal progression. No new tumors, yeay! My local onco said marginal is less than 20% so it is not considered progression. She said we will treat it with RT, and if my CT scan after my next cycle (now cycle 3) shows no progression elsewhere in the body, I can still continue to be on this trial. Seems that this trial allows RT for symptomatic relief which is great. As for now, I can breathe a sigh of relief. I take stable anytime but having some shrinkage is a bonus!
So far no obvious hair issues yet. Dreaded hair loss during chemo though not liking my new hair now too 😅.
GVgirl, hope ur liver enzyme readings go back to normal before your next cycle.
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tata_rosli and Parisalways - I'm so happy for your results, ladies! Wish you regression with the next cycles! This forum is full with good news only : )
EvaGor - you're perfeclty right that I desperately cling to anything that makes me feel "normal".""
I bought a new special shampoo and serum. But now I decided to try some "home'made" hair masks with egg yolks, garlic, oliva oil. I will let you know : )
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I am on my week off my first cycle of kisqali/femara, very litte side effects, light headedness, nausea only on the second day, relieved by ginger candy. I also have nasal passage dryness which i will try a humidifier in my room. Labs done on the 2nd week and will be seeing my oncologist by the end of this week.
Anyone trying some herbal supplement with this treatment? beet, gogi berries, sour sop?
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Welcome, Kirat! We're glad to hear your first cycle went well, and hope you get promising news when your labs come back!
The Mods
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I had my ovaries removed on the 19th, during my weeks off of Kisqali. Had my bloodwork done a week later. All is fine except for my creatinine level which is 1.13, just slightly elevated. I went a bit crazy with protein post surgery since I wanted to heal faster, and it may have contributed to this situation. My onc said to limit protein for a while and stay hydrated, we'll re-check the creatinine after 1 week and see what happens. If it's still elevated she'll take me off the Kisqali and switch me to Ibrance. I'm not happy. My tm went down to 44, I feel excellent, and I was counting on having a CT scan done after the third cycle
I asked about the turmeric and if it interferes with Kisqali. According to our pharmacologist it doesn't. He also said that he does not recommend taking large amounts of supplements since many interactions with new drugs have not yet been well studied.
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Eva, interesting about your creatinine level. Mine is low and has been through all 5 cycles. My onc hasn't commented on it and I'm not sure what it means. I am also a big protein eater. Hmm, but nice to know about the turmeric. I was going to start it, but wasn't sure if it was OK to do.
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Hello to all the wonderful women providing one another support as we journey through the unknown. I was very recently diagnosed and have been a floater on this forum for a month or so, and i can honestly say I have drawn strength from your posts. We don't have a forum that comes anywhere near the quality of this in Australia, so now I am over my initial diagnosis shock, here I am. I didn't intend to become a member of your group, but I feel a happiness that I am not on my own.
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Hey ladies,
Has anyone experienced crazy fevers on this combo? At the end of cycle one with few side effects, but then last night had a fever that topped out at 103! I haven’t had a fever in 10+ yrs. Work on an airplane and my immune system has been tested :-)
After reading through all your posts I’m not going to switch treatments if at all possible. I see my onc this morning to do blood work.
He prescribed me lorazepam to sleep. Like you guys I would prefer something less medicated. I’m groggy all day if I take it.
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Hi Valeriagayl, as far as I remember your are just in the beginning of this combo? If yes, please check you white blood cells (WBC, leucocytes and neutrophiles). Fever may be a sign of low WBS and this may be risky for infection! I had very very low WBC after my first chemotherapy and this was life-hreatening. Now I have checks each month in order to see how my body reacts to this treatment (now my WBC are extremely low too) but my oncologist told me - if I feel any symptoms of fever - to check my WBC immediately. Here you may make a blood check everywhere.
Wish you success and be careful!
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Hi ladies, met with oncologist today, all my labs are excellent!, she was quite happy with it. Advise me to put vaseline with a Q-tip or saline wash for nasal passage dryness, she is ok with me having prunes before meals for constipation and dramamine or Benadryl to help with sleep as needed.
I have always been good in drinking water and tea, she commended this and advise to continue as well as physical activities like walking and yoga. She also cancelled my next appointment and will see me in a month instead.
I am glad to be part of this forum and share information with all of you!
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Hi girls, a strange question by me - how long will you be on this treatment? The answer of my oncologist is: until progression. this does not sound OK : ) i know that the treatment should be stopped in any occurrence of adverse reactions, but if results are OK, if mets disappear...should i dare to hope that sometimes this treatment will be over?
I have MRIs every 3 months (I am in a clinical study) and I asked the coordinators - is this really necessary? They explained me that the study protocol is like this. So I answered that I can not have all my life MRIs every 3 months. They looked at me strange : )
Advice for the new members of this forum - do not treat your hair with any chemicals/due/press. After 9 cycles of this combo I have terrible hair loss from 1 week. I bought a hair press for the New Year (for first time in my life) and I used it almost each week. Maybe this combo weakens my hair and the hair press was the he drop that overflowed the cup.
Hugs, girls,
Elena
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Hi Elena,
My MO told me the same thing. However the trial I am in is supposed to be concluded by 2019 so I would think that the 3 months scans would stop then and it may be once every 6 months or yearly thereafter depending on how stable the disease is. At least this is my thinking. I haven't asked the MO that though.
I see her tomorrow so may ask then.
Lola
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yes, i was told the same that the trial is till end 2019. Earlier part, thr scan is every 3 month. Then every 6 months. I guess after that it depends on your condition. My Doc said if the meds work, then we can opt to continue but it will be at our own cost and it is not going to be cheap.
On another note, I am at the end of the 3rd cycle (last day for the 3 weeks on). This cycle I have been having diarrhea everyday, max 2 times a day. Anyone has this? And the last week, my energy is so low by noon that I feel like I cannot do anything anymore. My hubby said I looked like how I was during chemo, fatigue, energy drained, lack of appetite. If any has this experience, what did you do to overcome it?
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