Ribociclib/Kisqali with Letrozole - Any one on this combo?
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Hi,
Aside from some fatigue which really kicks in the evening most of the evening I am feeling okay.
I met with my MO on Tuesday and the neutrophil count was 1.7 from 4.3 (before starting the meds.). The nurse said that it is likely that it would stay that way. What has been your experience for those of you that have 2+ cycles under their belt?
I will finish cycle 1 next week so I am very curious to see how the appetite will change.
Hope you all have a great weekend.
Lola
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Lola and the other lady: thank you for the respond. I am trying to figure out from what process my problems come.
But I consulted my doctor and they said that all of these are normal as long as all these side effects dont stop me from living a normal life. I have been through all the simptomas (in only two cycles) the ladies here write about.
But everyday something news comes up! Like for example today I have problems with the nipple (on the side I have the tumor). It is like inflamed and it is itchy it bothers me. Idont know if any of you have this kind of problem. I am thinking about consulting my doctor tomorrow!
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Hi All,
Just an update on possible side effects that have presented themselves during the course of my cycles so far. I am currently on my 5th cycle of the ribociclib/ letrozole combo.
The latest SE is head to toe itching and rashes. My Onc prescribed a cream and antihistamine but so far it hasn’t abated. My hair continues to thin and my nails are very brittle. The good news is that I am not dealing with any more nausea or diarrhea.
I’m not sure if things will improve or get worse.Has anyone been on this trial for longer than 4 months? If so I would love to hear from you.
Best to all.
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After 5 cycles -- my latest blood work showed my liver enzymes jumped up another 100 points (ALT is now 218) so instead of one week off, I got two. And next round will likely be just 2 pills instead of 3.
I've been enjoying this 2 weeks off very much. My head is clear and my energy is back up. Still queasy -- overall I've lost 15 pounds since August. And suddenly I have diarrhea instead of constipation - which feels like a blessing. Trips to the bathroom were extremely painful before.
Biggest mystery to be solved is my cognitive and blurred vision problems --brain MRI all clear. Also, the drugs have kicked my underactive thyroid into over-active -- which can cause vision and attention problems. Seeing endocrinologist tomorrow -- we will see if it is Graves disease.
Also stopped taking all my supplements a few days ago -- except for cannabis. It seems to have helped. I also spoke with a friend who had worked at a health store and said it may be better to do the supplements in between treatments rather than during. So instead of capsules, I'm blowing a lot of money on juices and smoothies to try to get all those supplements in food form. I eat like one real food meal a day now -- but it messes me up.
So far no rashes -- random itchy spots but nothing really.
Am I the only one whose QOL is really impaired? Do you all still work full time?
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after the diarrhea and unable to function in my 1st week of the combo, my Dr has reduced my dose to 2 pills a day, and I feel great. No side effects and I have quality of life. But my concern is, what is the efficacy of the lower dose? Is anyone else on 400mg?
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Parisalways ... After almost finishing my 3rd cycle, I have been dealing with head to toe itching as well. Rash on shoulders, back of arms and chest. Was going crazy and couldn't fall asleep. Called the MO yesterday and she ordered a steroid prescription. Almost gone after the first dose. Hoping it stays gone after the prescription is done. Have noticed I'm finding strands of hair everywhere. Texture seems to have changed as well.
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Tomorrow will mark a week for me being on Kisqali. So far so good, though I know it's too early for side effects. I'm keeping my fingers crossed that the meds do their job without turning me into a sick puppy.
I'm been having sleeping issues related to anxiety for some time since this whole cancer thing, that is waking up around 2-3 am and not being able to fall back asleep. Valerian root has always worked for me, today I found out I can't use it with Kisqali so my doc prescribed clonazepam for a couple of weeks with the hope that I'll stop being anxious once I see the Kisqali/anastrazole combo is working. How will we know it's working? I didn't ask. My mind is mush and sometimes I have this weird feeling that this is all just a bad dream and I'll wake up someplace poor, cold, hungry, but healthy. Sorry for the sad rant, it's been a long day at work and I'm tired and unhappy.
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tata_rosli I'm on 400 mg as well. My doc wants to keep me on a lower dose for the first week and then up me to 600 mg.
tinyturtle I work full-time. It's exhausting even without the side effects of the meds. I guess it's the stress and lack of proper sleep.
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Results of my tests are in and, drumroll... WBCs are normal! Hemoglobin is a bit down (11.6), but it's been like that for a coule of months. Doc is increasing the dose to 600 mg.
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Hi EvaGor, how are you on the higher dose? My Dr did increase my dosw to 600 and the side effects hit immediately. Felt hot flushes all the way to the head, headache, nausea, all soundd and senses amplified. I am back on 400 and i feel normal again. I dont think i could function on 600 and will not be able to work. But at 400 i can.
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Actually after I got home my doc called and said to stay on the 400 mg for the entire first cycle. So I still have 1.5 weeks to go.
tata_rosli those symptoms you're describing sound scary! I hope I don't have the same problem when I start the 600 mg. I really need to work in order not to go crazy, not to mention I need the money and insurance as well. I too am curious of the efficacy of the lower dose. I'm seeing my doctor next week, I'll ask!
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Hi All,
I live in British Columbia, Canada that is soon to approve marijuana for legal use. Have any of you tried “smoking” to combat nausea etc,? Does your Onc. approve the use? Enquiring minds ant to know.
Me
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My doc doesn't prescribe marijuana but doesn't have anything against it either. Personally marijuana does little for me in terms of calming down nausea. Zofran too. Scopolamine patches are the best, but they do make me doozy and dry out my mouth.
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This is my goodbye post. After a 2 week break, my liver enzymes are still increasing!? ALT is now 446! So, I will be switching to Ibrance. How could it jump 200 points from the last labs after not being on the Kisqali? I don't know -- but I also stopped all my liver supplements and maybe they were helping a lot. So I'm starting them again today. Turkey tail mushroom capsules, milk thistle capsules, dandelion tea, etc.
Someone asked about marijuana -- I take rick simpson oil and/or edible chocolate every night to sleep -- and if there happens to be food, I can suddenly eat. During the day I don't take it. There is some evidence that if you have a damaged liver, pot can damage it further. So I'll be minding that -- but the benefits are so helpful for me. I highly recommend cannabis -- it makes evenings in bed a lot nicer.
I wish you all luck -- Kisqali shrunk all my tumors it is good stuff if you can take it
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Well I started my second cycle yesterday and today was a hectic day. I left home without my breakfast but I brought my meds with me. However, I forgot to take them. I didn't remember till after I got home.
My neutrophils were down to 1.2 from 1.7 the last time. I go again in two weeks for my shot and will see how low it will be again. Right now I take the Zoladex shot "off cycle and my MO seems to think that my blood work will be such that we will be able to get back on cycle. She seemed to not want to delay giving me the shot due to my age.....makes me think if I should take out my ovaries or continue with the meds just in case the cancer changes to ER- and I won' have any other pieces missing from my body.
Hugs
Lola
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Hi Lolis. I did remove my ovaries 1 day before I found out I have mets. I removed it cos my hormones rises in Nov 2017 and I started getting back pains not long after. Maybe I removed it a little too late. Now hoping with the reduced hormones, the cancer cells are under control with kisqali.
As for me, it was an easy decision to remove as I don't plan to have anymore kids, I have and will be 40 this year. Weigh the risks and benefits for you.
Today starts my 1 week break of kisqali for my 1st cycle. No more side effects, but my hips are hurting more and more by the day.
Anyone with bone mets having pains? What do you do or take to reduce the pain?
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Hi girls cycle 3 finished itching from head to toe nearly driving me mad. I am having oil baths and only using the derma wash on my private parts and feet. I find it worse on the days I work and am in air conditioning, The soap at work bought my hands and lower arms out in an itchy rash so I am careful to not use soap in public bathrooms.I moisturise from head to toe and have been taking a antihistamine daily.The hot flushes are turbo charged and my urine has a funny smell.I have pain in my feet and hips when I wake up or get up from sitting I just walk it out.
I had chest abdo pelvic CT yesterday bone scan on Monday and am back to anxiety overload. I see my oncologist on Friday. I am supposed to start up Kisquali next Saturday but there is no way I will have it in time if I'm seeing her on the Friday. I rang and she must want me to have a longer break.
I will let you know the results as soon as I know. If anyone has some rash remedies please share.
I have everything crossed talk soon Mandy
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Tiny turtle, I had the same experience as you. After a few months on kisqali, my liver enzymes started rising and wouldnt stop, even after stopping the drug. I was having an immune reaction to the drug and needed steroids and azathioprine brought everything back to normal. Don’t know if thats whats going on with you, but something to explore if they don’t start falling.
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Had a rash and terrible itching during my 3rd cycle. Onc ordered a steroid and that did the trick. Starting cycle 4 tonight so interested to see if rash reappears. On the upside, it appears to be doing a good job. My TM's have dropped from 700+ to 179. So I am willing to keep on trying.
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Two weeks on Kisqali, WBCs dropped a bit but still pretty good at 4.3. Hemoglobin 11.6. I feel ok except for some overall bone pain. It gets better as the day goes on, so no need for pain meds. I've been a bit more active lately at the recommendation of my oncologist, maybe that helps with the pain?
tinyturtle so sad to see you go from this thread! I hope your liver snaps back to normal fast!
tata_rosli I'm seriously considering getting my ovaries out. Currently I'm getting monthly Zoladex shots, they're not a huge pain in the butt but still it's probably better to have one less thing to worry about.
I'm getting my liver enzymes and Ca 27.29 checked at the end of the week of the Kisqali break. I really hope everything's going to be ok. So far no serious side effects.
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I seen oncologist today. Scans were amazing , not one micromet and the spot on T6 is nearly gone. The steriotactic radiation and the Kisquali letrazole combo is working.
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Mandy62 that's amazing! I unfortunately have mets to the liver as well so I most likely won't have as great results. I just finished my first 21 days of Kisqali. WBC fell to 2.8, hemoglobin stable at 11.7. My differential showed that my neutrophils are actually borderline, it's my lymphocytes that are low. My doc says that if my labs even slightly bounce back up during my week off Kisqali she's putting me on 600 mg for the next cycle, provided my liver enzymes aren't high. Had also my first PET/CT on Tuesday but have yet to know to results.
I feel great! I took a long walk yesterday in the bitter cold, ate a huge supper, and slept like a rock all night
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Baywitch
Hi what was the steroid your Dr prescribed. I just started cycle 4 and the itch and splotchy rash is all over my body . My Dr would not prescribe steroid tablets and sent me home with cream that doesn't help at all. Does the itch ever stop? It's really getting me down. The rash seems to take hold of a different part of my body with each cycle, this cycle is legs and arms.
I know it is doing a good job , so I am sucking it up
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Mandy62 ... I'm sucking it up too because it seems to be working, but I had to call the on-call doc on Sunday when I couldn't standing the itching anymore. This is the second month in a row this has happened. Across my shoulders, down my arms and on my chest. Anyhow, it's a 6-day pack called Methylprednisolone 4 mg and both times it started working after day one. Just finished the last pill and have another week of Kisqali to go before my break. Keeping my fingers crossed.
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Thanks Baywitch for the information. I don't know if it ever stops and if I will be able to continue like this long term. It has been a very hot summer in Australia and I cannot wait for Winter as heat sets it off.This is only week 1 of cycle 4 and it hit with force from day 1😁
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Hello ladies!
I have already finished the 3rd cycle and to be honest I am doing fine in terms of everyday life. Diarrea and headache are everyday life so I am getting used to them. But there is something that bothers me: blurry vision and anxiety.
I am sure they are not related to each other.
I will see my doctor on thursday but wanted to know if anyone experienced something like this? Just to keep my mind calm till thursday!
Ps: I am so happy for all of you ladies that the medicine worked.
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Idajakoc - it's smart move to mention those side effect to your doctor. I won't be of my help as I have had zero side effects this second cycle other than the menopause side effects. Not sure if this is a good sign or not but I am glad of not having lots of side effects. Have you had a scan yet? I have mine on March 20th curious to see if the meds are working.
Congrats to all of you that have had a good response to the meds.
Hugs.
Lola
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HI Mandy,
I've been getting the rash too. It started out end of cycle 1 and now i am in cycle 2 and it is red as ever and itchy. I read that rash is a SE of femara? Haven't asked Dr if it is also a SE of kisqali. Seeing Dr on 1st March and going to ask for meds for the rash
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My doc says its from Kisqali. I keep hoping it will not reappear with the next cycle. Not sure how long they will let me go with having to take a steroid to relieve it. Can't go forever with no sleep.
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Hi All,
As I start my 6th cycle I thought I would write a brief note and share some side effects I have had on the Kisqali/Letrozole combo, some I’ve conquered, some I haven’t.
Nausea- I now take my pills at breakfast and have found that a bowl of oatmeal is the best. Toast with Ginger marmalade is also an option.
Itchyness- I still have ongoing issues but it’s much better using a moisturizing bath wash instead of soap.
Diarrhea- much better with a bland diet. I save my spicy dishes for my week off.
Hair loss- my hair has thinned dramatically but I still have some, so if you have thick hair you should be fine!
Fatigue- my new normal is a slower pace and in bed by nine!
My doctors visits will now be once every two months since my lab tests have all been acceptable. I have only had one CT scan (last December) which showed improvement in reduced cell size and no new cells. My next scan is at the end of March and hopefully it is good.
Hang in there fellow sufferers!
Cheers!
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