Ribociclib/Kisqali with Letrozole - Any one on this combo?
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Hi Canaloon,
Thanks so much for your response and as a plus, I live in Vancouver! Re: draining, how much were they draining and did it gradually lessen? Did you have your tube removed or are you keeping it in place (just in case)
I would love to meet for coffee sometime and with that in mind I will entrust this board with my email address.
Susanrbb590@gmail.com
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Hi Suzan,
I live in Vancouver, so it's especially great to hear from a neighbour! Hopefully my draining continues to lessen in amount soon. Did you opt to keep the tube in just in case the fluid returns? Other than the fatigue (which I share with you) are you experiencing any other side effects?
Given that we are close Would you like to get together sometime for coffee?
Susan
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Hi Susan - gosh what an ugly, wet day ... more like Dec than November. I tried emailing you but your email address didn't work ... so please try mine: [removed by Mods. For your safety and security, please PM instead of sharing email addresses.] Coffee would be lovely.
I didn't decide to leave the tube in on a semi-permanent basis because the idea of having a community nurse drop by every few days to drain it didn't appeal and I thought emptying it myself would be more than I wanted to do. I was torn between depending on the medication to dry things out and the discomfort of the fluid build ups and drains at the Radiology Dept. Thank goodness the medication has worked well so far. Re: side effects: I'm still breathless, have chemo fog, clench my jaw a bunch and give myself headaches, and get nauseous more often than I'd like.
Lets talk!
Suzan
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I️ have been kisqali now for 8 weeks and i am barely functioning. The fatigue and tiredness are overwhelming....-lease give me some hope.
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Wgr - sorry to hear you are struggling with this combo. It took me about 10 - 12 weeks for it to settle in so I hope that hanging in there will make a difference for you. Where are your “mets”? Mine are in my lungs and a few in my bones. You may be having different side effects depending on the site(s) of your metastasis. As you’ll have read above, the combo dried up the fluid in my lungs and I feel a lot better. The tiredness has started to even out. I spent the summer in bed but now I can walk most days and have coffee with friends. I had a long talk with my family doctor and I finally gave up on the idea of not taking sleeping pills every night. Sleeping well is more important than being anxious about being sleepless and at the same time exhausted. So that’s one idea to try! What are the rest of your symptoms? The stastics on the survival levels from the various Trials also give me hope ... and now there are three combos that make a significant difference to coping with this diagnosis. Those kind of thoughts about the good news keeps me going on the days when I feel especially blue. You are not alone ehh!
😎😎😎
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WGR - how has your blood work been? Are your red and white blood cell counts low? You could be experiencing neutropenia and or anemia. I know from when I was on Ibrance (very similar to Kisqali) and letrozole a lot of people were reporting extreme fatigue. Some people had to take a break in between cycles to allow their counts to build up again. Kisqali is supposed to be a little less taxing on your WBC but perhaps not that much for you. Have you reported the extreme fatigue to your oncologist? If not you should. You shouldn't be so wiped out that you are barely functioning. Call your doctor. He/She may want you come in for blood work to check things out. Don't despair - there is a lot that can be done to help you. They may reduce your dosage, give you a break between cycles, change your treatment. Hang in there. There are many options.
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It is so good to hear how everyone else is experience this drug combo. I finally got it approved through the insurance and got my first official box delivered to me -- it will be my fourth round. I'm on day 19 of my 3rd round. I did have bloodwork done last week and my WBC almost dropped in half -- they were really strong before so I'm still good. My liver results show some stress -- and I knew it ahead of time because I could never get my urine clear. I'm drinking a liver cleanse tea daily and within 2 days, it lightened up. In my research, liver problems cause fatigue and nausea on top of whatever the drugs are causing.
I have learned that on the last week when I only take Femara, my appetite gets better and my intelligence returns. So, I've highlighted that week ahead of time as "Good time to do things" lol.
I have also applied for disability. There's so much self doubt in doing it -- I feel like a liar or that I'm just being a baby. But when both my therapist and oncologist didn't bat an eye when I told them, it made me feel much better. It is hard because some days I can run around, clean house, grocery shop - and then other days I feel like lead and I never know which day I'm going to get. I have my own business - so this has been a doozy of a situation.
Since I was diagnosed de novo -- I still have my breast and my giant 8cm tumor inside me, but I feel like it is shrinking -- I also feel like in doing so it has shrunk my breast and made me extra lopsided. There's a gap in my bra on that side. I hope I'm not fooling myself, my next PET scan isn't until February.
p.s. Yesterday I noticed a blank spot in my eyebrow .. as if I had overplucked but I can't even remember the last time I plucked. It is tiny, but of course I'm thinking, oh great here it comes.
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Hi Tiny Turtle - it sounds like the process of getting the pills and other paperwork for support is falling into place. Good for you! I know how hard it is to pull the details together when you are short on energy.. Thanks so much for talking about Liver impacts. I just was taken off the ribo because my liver enzymes are off. So that means more blood tests for me. But the research you've done answers some questions I had and I'm glad Im not the only one trying to get back to clear urine status. I wondered why I am still nauseous and now I know thats a side effect of the liver impacts and feel less guilty about having to continue to take anti N pills.
I too designate "functional weeks" and plan to have coffee with friends and do projects that I'm too foggy or too tired to get done otherwise. Trying to run a small business too must make this extra tough. We need someone to build us an app that would let us target the good times ehh? BTW I'm still chuckling about eyebrow blank spots ... only we cancer people would get that one ehh?
Have a great day!
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Has anyone broken out with a red rash on their skin while taking Kisqali? I am on my 5th cycle and everything was going very well until the last several days when I have had a rash develop on my legs, arms, and face.
Its somewhat itchy also. My NP said 17% of people develop the rash. She prescribed a steroid cream but I think the rash is getting a little ahead of the cream. Wondering if anyone else has developed the rash and what the solution might be. Thanks.
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Hi Meadows4 - I was on Kisqali for 5 cycles and did not break out in rash. However I was also on Ibrance (which is very similar to Kisqali) and letrozole and experienced various side effects including a facial rash that once treated did not come back. Some side effects come and go. There's a good chance that once your rash clears up it won't return.
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Thanks for your reply. What treatment did you get for your facial rash.
I know these side effects can come and go.....hoping this one will go soon!
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Hi Meadows4 - I have not had any facial rash and I'm sort of in cycle 5. So I have my fingers crossed. I also don't take the full number of pills, they dropped me down 2 pills when I had the lung problems. So maybe the itches and rashes is tied more to taking the full dose. Hopefully the steroid cream will make a difference?
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Yes, I hope it does. I am going away for the Thanksgiving weekend so I wont have a chance to see my Dr. before I go. I have a week and a half left on this cycle. If the rash doesn't respond to the cream, I think I might reduce the dosage myself or maybe not take the entire last week.
I just put some more cream on that was prescribed and I think it might be helping a bit.
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Hi Meadows4 - hmmm, I think you just said you'd reduce the dosage of Ribocibclib without talking to your doctor. Based on my experience, that's probably not a good idea. I know that when the oncologist/cancer team here dropped my dosage it was a big deal. That's because when you change the dosage you do it permanently. I can't tell you why (too detailed). But the folks running "The Trial" here won't increase the medication (Robociclib) they'll only decrease it. You might also ask your doctor what your backup treatment will be if they take you off the pills. In my case they'd put me on regular Chemotherapy. Not what I want to happen. So please be careful ehh? Your could try talking to a pharmacist to see if they'd recommend a facial cream that would do a better job of controlling the skin rash. You might also leave a phone message for your doctor and let them know what you're planning to do. Better safe than sorry.
Have a great Thanksgiving ... it's such a special holiday in your part of the world.
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Meadows4 - the rash I had is called periorificial dermatitis and it appeared around the nasolabial folds on my face. It was treated with an antibiotic called minocycline. I believe I had to take it for two months. The rash cleared up and never returned.
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I have only recently been diagnosed with stage 1V by accident . I am on the Ribociclib/Letrozole duo, this is my third week so far my only problem is an itch.
It has been a roller coaster for the last two months . Firstly diagnosed with arthritis then a kidney tumor . I had my kidney removed to now find out after 10 scans and a bone biopsy that my arthritis is a bone met to T 6.
I will be starting radiation in 2 weeks. . My first Oncologist told me I had months maybe 1-2 years. I have never felt so low. I changed Oncologists and both my Radiation Oncologist and Oncologist are much more positive. It really makes a differenc
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hi Mandy62 - congrats on having the strength to say no to discouraging people and predictions. I think I feel the best when I like myself and whatever I’ve done. You’ve done really well to choose some people who have the kind of energy needed to get through something as tough as this. The research results on this drug combo are very encouraging ... more than doubling outcomes and they are talking about making it the standard of care for everyone with this disease. All the research is beginning to pay off. No guarantees of course but so much better than even a year ago. Biggest hugs!
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My rash has resolved. But the aftermath has been 10 days of the skin on my arms and legs peeling as if I had had a bad sunburn. The skin is still peeling.
The doctor said to take 400 mgs when I am due to start this week instead of the 600 mgs. I will try that but, considering the intensity of the rash and the peeling, I am not too hopeful that 400 mgs will keep the skin condition away.
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My rash has resolved. But the aftermath has been 10 days of the skin on my arms and legs peeling as if I had had a bad sunburn. The skin is still peeling.
The doctor said to take 400 mgs when I am due to start this week instead of the 600 mgs. I will try that but, considering the intensity of the rash and the peeling, I am not too hopeful that 400 mgs will keep the skin condition away.
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Meadows4 I hope your skin peeling will be under control soon, its such a drag on your energy to have these kinds of side effects. Dropping down to 4mg should be helpful but it will take a month or so before it really shows up as a definite impact. It sounds like a perfect reason to have a pedicure where they scrub down and message your legs ... yummy! And at lease your legs would be done. A full body exfoliation and message sounds even better ... gee I may need to go for one!
Cheers
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Hi, I'm new to this forum and newly diagnosed with stage 4 breast cancer. This is my second recurrance. Originally diagnosed 18 years ago at age 38 with stage 2 invasive ductal, received chemo and radiation and lumpectomy. Had a 10 year remission before recurrance stage 2 again, in the same breast. Had a mastectomy in 2010 and diep flap recon in 2011.
This time my tumors are in the medastinum, internal mammory lumph node, supraclavicular lumph node and sternum. Today was my first day on Ribociclib and letrozole combo as part of a drug trial.
I'm hoping to connect with others on this combo hoping for some encouraging news. I'm pretty terrified with what may lay ahead. Worried this might not work and what the alternatives are. I've been reading your posts and am so impressed with your bravery and ability to continue on living your lives while dealing with this awful disease. I'm hoping I'll be able to do that as well but I'm really still in shock at the moment.
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Hi June Bug - welcome to this group. My goodness, two recurrences!! Another tough woman joins our gang. A couple of days on the trial won't, of course, give you a real sense of what side effects you'll be blessed with but do let us know what pops up. I've been seeing a counsellor and that has helped enormously ... just talking it out is good for me (everyone does it differently). I also belong to a Facebook group called "OncLive". Its meant for Oncologists and is a series of taped meetings that they have with one another at their conferences. I don't try to follow all the language but I do get a sense of what is happening in the Metastatic BC World and their conversations are full of how effective the C4K inhibitors (Robociclib) are proving to be. Its gives me lots of hope and Im thinking that you might find that news hopeful too. Biggest Hugs!
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Hi CanaLoon, thank you so much for the info. I'll definitely check out Onclive on facebook. I have an appt with a counselor at the cancer center, hoping to connect with a stage 4 support group. I agree it's a bit early to tell how I'll feel on the trial drugs especially since I've had a terrible cold ever since I received the bad news 2 weeks ago. There is some fatigue, nausea and loss of appetite but so far manageable. Thank you for welcoming me to this group of warriors! Sending hugs back to you!
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Hi Junebug56
I have finished one cycle of Riboociclib/Letrozole and so far just itchy and tired. I know how exhausting the diagnosis is and also mentally tough. I like you had breast cancer in 2007 then a new recurrence in 2012 and now this met to my spine in 2017..
My oncologists words about the medication were (I'm excited about this new drug), so I feel lucky to be able to give it a go and I am being very closely watched. I am having stereotactic radiation next week. So many scans so many appointments.
Let us know how you go as it is quite lonely and I don't think people truly understand the feelings that we go through when given this diagnosis.
I found this met because I was considering reconstruction due to double mastectomy ,I'm wondering now if it is worth all the surgery. Good luck with your meds lots of hugs
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Hi Junebug,
I'm also newly diagnosed and receiving treatment at the Ottawa General. I'm on my first series of Ribociclib / Letrozole. Lasted two weeks but had to take a week break due to low wbc and qt prolongation, hoping to get back on this coming Thursday. Side effects in the two weeks I was on were minimal, nauseous and heart burn. Looking forward to hearing how you get on.
Cheers!
Leean
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Hi
Leean ... I hope your first cycle has been a reasonable success. It takes awhile for the medications to settle down. This study, in Canada, is aimed at finding out what the side effects are, ehh? We all seem to have similar ones. I’m on my 5th cycle and the three issues that stand out for me are 1, nausea which I take an anti nausea pill for every day. Second I am clenching my jaw/teeth and see a specialist next week to see if something can be done ... it is not a psychological response ... just my own unusual response to something affecting my autonomous system. 3 Elevated liver enzymes is a common side effect and others here have written about the impacts, especially how it contributes to feeling tired. In fact they’ve taken me off the Ribociclib until the enzyme levels normalize. So I’ve been off Ribociclib for 3 weeks which gives me a feeling of relief because I’m notas tired. Complicated ehh. I’d love to hear from you and others here about their progression in dealing with the side effects.
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CanaLoon very intersting about the clenching. Did it only start after going on this treatment? I have done it for years, sleeping and awake. Time I concentrate I find myself clenching my jaw. I injured a tooth one time.
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Clenching is new to me, I thought it was anxiety. But counsellor says no. I wear a night guard almost all day now and that helps. Will let you know what happens. Maybe its a "true" Ribociclib side effect. I don't envy you cracking a tooth that must have been painful.
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Hi,
How was your trip to Europe? Did you continue your medications while you were away? We are planning a trip to France next September which will also coincide with my being on the Ribocilcib/Letrozole for a year.
I'm thinking of suggesting to my Onc. That I go off the medication for the two weeks I'm away so I will have the energy for the duration of the time.
On another note has anyone experienced lack of hair growth. My hair seems to have stopped growing but it's not falling out. Good news for me, bad news for my hairdresser!
Cheers
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Hi ParisAlways (Susan) - I didn't go to Europe this year. Am planning on going to either Maui or Arizona this winter and asked about tests and taking the meds. The trial team said they would be happy to work with me ... two weeks seems easy to accommodate and even longer, depending on how you've responded to the meds over time. I have been off the Ribocib for almost 3 weeks because of my Liver enzyme scores and they intend to put me back on it when the scores go to normal. So I think they will work with you too. Going to Europe next year; especially Paris, sounds terrific. I've always thought that if you're going that far, that three weeks is a minimum amount of time to take for a trip. Are your lungs still being drained twice a week or have they cut it back? My lungs have a tiny amount of fluid left in them and I am amazed how much better I feel ... am still lacking energy but I think thats a long term thing.
Merry Christmas!
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