Ribociclib/Kisqali with Letrozole - Any one on this combo?
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Hi Lola
On march 1st I will do my first CT, I am freaking out
.. It is not I didnt have side effects at all just that all of them were passing and easy to deal with. Maybe they dont bother me cos I am doing a very passive life this months.
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I started the 600 mg dose last Friday. And I get really nauseated when I take it
I've tried taking it with food, without food, with tea, with saltines only... nothing helps. I spend about an hour in the morning feeling like I have a dancing elephant in my stomach. I'll try out that oatmeal suggestion, and that ginger marmalade sounds delicious!0 -
Ida - good luck tomorrow. keep us posted.
Eva - I was told to take the meds with food. I have oatmeal for breakfast and I try to take the meds at least 30min after I have had my breakfast. I felt nausea throughout my first cycle. I didn't have any such side effects this cycle. Hopefully it gets better with time for you.
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Good luck to you on scan day, Idajakoc ...anxious to hear how well this combo works!
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so glad there are so many good results. My rash became a real problem this week my legs and arms are red itchy and I look like I have hives. Air conditioning makes the rash angrier. I rang my oncologist and begged to stay on the drug even with my leg scratched to blisters 😁 I am off the Kisquali for a week and it has been 4 days and things are just settling down . She is going to try me on a lower dose and see how I go. I can only be hopeful that I can wether the storm. First is was.my chest and back now arms and legs , chest and back are fine
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Idajakoc, how did the scan go?
My scan is probably end of March, and since my mets are (so far) only to my bones and skull, Dr is thinking of doing a bone scan instead of CT scan since CT does not cover the brain. I somewhat agree with my Dr but there's the question of what if new tumours appear elsewhere and not seen on bone scan? Dilemma
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Ida - do you have your results yet?
Tata - can you have both scans?
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Hello, I am brand new to this site but not to MBC. Tomorrow I start on Kisquali & Femara. I cannot thank All of you enough who have shared trials & Tribulations. You have given me a host of questions to present to my support care navigator when she calls me, advice and possible scenarios as I start this next medicIne journey.
Since I will probably take my meds prior to hearing from her can anyone tell me do you take the kisquali with the femara, same time?
Has everyone experienced hair loss and should I expect nausea? Both side effects, since I mentioned them, I don’t ‘tolerate’ well physically or emotionally, since I have been there and done that routine.
Anyway, I am hopefully and thankful that I have another set of options as I have been in this adventure since 1997 and have been fortunate to have had some long successful periods.
Any help, continued guidance and suggestions, especially with diet would be greatly appreciate.
I look forward to sharing my journey as it feels so less lonely, thank you S3K5 for starting this dialogue.
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Hi MTBM,
welcome to this thread.
I take the femara and Kisqali. First the Femara and then the three pills with a full glass of water. I had nausea a few days during my first cycle and some days I had to provoke vomitting to settle my stomach.
Re hair loss I have just started noticing that my hair is not growing as fast (everywhere). I have noticed fewer lower eyelashes not as noticeable yet but I can notice. It doesn't bother me yet but I understand your fear and remember each of us is different.
I have a question too - has anyone experienced having acne? I started having a few pimples and used to have Anes in my late teens till mid twenties.I haven't have any since then and now it started again.
Thanks.
Lola
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Does a contrast bone scan show 'hot' spots in the brain or skull? I googled but did not really find anything, so am asking the 'experts'
. I am quite new to the site and appreciate all the information that is shared among us; also it is comforting to have such a resource available. 0 -
Dear ladies!
I just heard frim the doctor today! Great news! My mass in the breast has shrunk and the mass that I have in the left femur is also smaller and more superfical.
Thank you all for being there for me! I am greatful to have found you all!
MTBM welcome! I have been on the fourth cycle already and hair lose has not been a big problem they have thickened a little. Nause has become more often during the time but I have found that baked food helps.
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Great news, Ida! I have my first scans next month after 5 cycles. Expecting good results, too. The only side effect I have experienced is rash, and it gets worse each cycle. Don't want to quit the combo, so hoping they can give me something to control it.
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Hi -- I just wanted to see how things were going and give everyone an update in case anyone has the liver issues from Kisqali. After a whole month of being off Kisqali my liver enzymes are good enough and I started Ibrance today. I really enjoyed that month off, I got so much done. I'm a bit depressed today starting the oral chemo again. I hope Ibrance is easier on me. I guess with my month off I got a taste of what life will be like if I'm NED and just on hormone stuff.
Someone mentioned vision problems -- I had them too -- blurry and double vision. That's all gone away -- maybe Kisqali does that or maybe it was the liver toxicity.
Oddly, my hair is thinning faster in the last 2 weeks and the sore joints are happening (xgeva and femara likely to blame).
I'm so sorry about everyone who got rashes! That sounds so difficult.
I have also just started taking gabapentin for anxiety -- it really is making a huge difference in QOL.
Take care!
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Hi , I'm in my 10th cycle of Ribociclib and letrezole combo. I'm part of a clinical trial. I have been doing great, my scans are clear my labs are great. I have issues with fatigue, good days and bad days. Recently the clinical trial administrators have told us that we are no longer allowed to use cannabis, for any reason at all. They haven't said why, has anyone else heard anything about this?
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Hi Spacerace2
I’m glad to know someone who is on their 10th cycle. I’m almost finished my 6th. Unfortunately I have just about all the side effects but I’m learning what I can and cannot eat, what I can and cannot do re: fatigue and what I can and cannot do about digestive issues. I’ve lost a lot of hair! Nothing I can do about that😢
My lab tests are good and my first and only scan showed some improvement, my next scan is March 20.
To answer your question re: cannabis, I was told I couldn’t use it. Too bad since it’s soon to become legal here in British Columbia.
Thanks for your post.
Cheers
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Hi! Hang in there, it keeps getting better as your body adapts. I’ve had issues with hair also, it seems to stop growing for long periods, all over, not just on my head. The hair on my head is very thin now. I have lost an unhealthy amount of weight and still struggle to eat, Hormel has a line of microwave meals called vital cuisine that are great for tough days. Now that I can’t have Cannabis the biggest change I feel is my hot flashes are out of control. I can’t sleep. They happen every 20-30 minutes and I’m saturated. It wakes me up. I’m miserable. Ugh. Good luck with your upcoming scan
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Spacetrace20001 is there any actual reason why you can't use cannabis?
I'm coming towards the end of my second cycle. The nausea is a whole lot better. I start every morning now with a banana and then take my Kisqali and anastrozole. Other than the nausea, no side effects. I've had hot flashes right after I started Zoladex, but they practically disappeared by the time when my doc added anastrozole.
Thee past two weeks I felt like I was on a drug induced high. I have a lot of energy, get properly tired by evening and sleep all night, and wake up fresh and rested like a baby. My onc has no comment on that she says Kisqali is a relatively new drug and she doesn't have a whole lot of patients on it yet.
Getting my ovaries removed next Monday! Yay, no more Zoladex shots!
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Hi Evagor, the only reason I can’t have Cannabis is the clinical trial administrator has said so. No explanation was given. I was doing great!! Now, ugh. I’m staying in a clinical trial because I can’t afford the $10,000 a month cost of my drug. I haven’t had as many side effects as some so I count my blessings. I’m sure I will get over this eventually. I was only using the cannabis oil at night before I went to bed
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Hi All,
Has anybody had issues weepy eyes. Ivealways had some tears but now it’s like I’m constantly crying! My Onc is setting up an ophthalmologist appointment but I thought I would check in with my fellow sufferers.
Cheers
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No weepy eyes for me!
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No weepy eyes for me although for a few days my left eye was pretty teary in the morning but that has stopped.
This past week I have had a pretty itchy skin all over. I have tattoos and they are getting very itchy to the point where the ink feels raised. Now my scalp and back is itchy and it feels like burning after.
I have my first scan after my dx on Tuesday...won't know the answer till April 3 when i see my MO. wish me luck!!
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Hi Girls
Lolis wishing you luck. I'm back on a lower dose still having rash problems. My skin has peeled off legs, arms, feet and hands. My feet are very sore due to cracks. My oncologist says keep going. I have oil baths and moisturise from head to toe twice daily
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hi guys,
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Hi MTBM here,
Just sitting here waiting for my second ekg and blood work, started my third week of Kisquali with Femara combo. Seem to be doing well, trying to note all oddities. Here’s one...
Does anyone know if you can take Tumeric with this combo? Things are so new with this treatment that finding info is difficult. I started adding some to my hot water & lemon, Apple cider shot and Miralax in the morning, in place of coffee, (as I read that it was suggested that coffee and chocolate be avoided), and was enjoying its’ warmth and experienced relief in the hip joint pains I was having, but indeed, I stopped after seeing the warning and haven’t had a chance to confirm with my Md. Figured it could wait till after he contacts me regarding my ekg and Bloodwork results for my second cycle. But it was nice to be able to get up from a chair, bed etc without being in terrible pain and spastically adjusting to an upright walking position.
Also, anxiously watching for hair loss
Any ideas, suggestions.
Thanks for your welcomes and support, as you all know it’s comforting not to be alone.
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Thank you Ida. I am waiting to go in for the scan. Will keep you posted on the results.
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MTBM I'm a nurse navigator at an oncology center, we have our own pharmacy on-site and our pharmacists are extremely knowledgeable when it comes to cancer drugs.Every time my husband brings over "miracle cures" for cancer I take them over to one of the pharmacists and ask if they're safe to take with my med I'm currently taking. They said "no" to valerian root while taking Kisqali (pity, since it was really helping me sleep at that time). I'm currently not at work, but could ask on Monday about the turmeric. I never heard anythng about coffee!
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Hi MTBM,
I’ve not lost my hair but it sure has thinned, I’m in my 11th cycle of this combo. My body hair has thinned also. I’m finding that the lack of sleep goes hand in hand with my pain levels.
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In my 2nd month (week 2) of kisqali/Femara. I have had minimal side effects so far. Low WBC/ neutrophils, mild rash on first round, no diarrhea or vomiting. I am doing ok with exhaustion but then will hit a wall and then I can't go any more. My metastasis has only gone into my lymph's mostly in my neck but there are a few other spots. I appreciate all who have posted here, the information is a great help. I am not sure where this journey will take me but believe that this is a great resource for that journey.
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