Ribociclib/Kisqali with Letrozole - Any one on this combo?
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Ida, so happy you are doing well with little SE,you give me hope that kisqali is doing its job. I love oranges and mandarins, so I will have to ask my onc about them... so many good things we have to give up to be healthy <sigh>
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Found this when I googled, so guess most citrus is OK
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yeah, my doc says it's the seville orange. The ones that is used to maoe marmalade. So i guess no marmalade as well.
Interesting about taking it at night causing imsomnia bcos i usually take mornings but due to fasting month i started taking at night and not long after the imsomnia started. Maybe i should switch again to morning. Thanks.
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Ladies! My back feels soooooo bad! Even painkillers are not helping as I feel constant pain.
Just had another CT scan last week and they say no new lesions on the bone, looks like it is healing but why do I feel worst than ever? If it is true, I am glad that the tumours are being crushed by this trial but why am I in such pain? I sometimes feel numbness or some tingling to my legs, it doesn't seem right. 1 thing that we have changed this round is that I am not getting my monthly shot of Xgeva. We decided to change to 3 monthly so this is the 1st month I am not getting Xgeva. But even when on Xgeva I had back pain but not this bad and was managed with pain meds.
Does anyone have any other Doctor in their team? I only have my Onco and Breast Surgeon. I think I need to see an Ortho or Neuro for the pain.
Please share your thoughts on how your team manage your pain.
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Hello Tata!
I am sorry you are in pain! I know what you are going through cos there I days I feel terrible back pain. According to my doctor the back pain is normal because of the induced menopause.
I dont know how it works where you live. But here in Italy you just have to ask you onco to give you a recomandation for any kind of doctor, if you believe the pain you feel comes because of the medication you are taking!
I hope you feel better by time!
Hugs!
Ida
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Hi girls! Hi ladies : ) So happy for the shared nice news!
I started my 13-th cycle with Ribociclib/Femara. This time my Neutr were 0.5 so I waited for 3 days. They increased to 1,00 and I started the combo (3 days later).
My last scan from 28.06.2018 - all 8-9 mets in my hepar continue shrinking. they are still visible but most of them are under 5 mm The 2 biggest ones reduce from 11 mm to 6 mm. For less than 1 year.
My hair continues falling. But I changed my ... my insight to this problem.
The last 1 year was full with MRI scans (8!), blood test, etc.
But ladies...the last year I celebrated with my daughters their birthday parties - 10 and 6 years old. My older daughter wan bronze medal in swimming and my younger daughter wan 6 gold medals in math competitions. I had wonderful vacation with my fsmily in Greece last summer and I plan the same for this August. I travel a lot! We plan a trip with camper in Septemer (Postojna cave, Plitvitze lakes, Lago di Garda...) for first time. And I started Zumba courses and now I am one of the most emotional members of our Zumba team...
Side effects? All of them! But because of you I started to take Ribo in the evening (to avoid the terrible heart beats I had). And I feel better. And I will buy broccoli and sunflower seed : ) And the most important - I am always so happy to see so many good results opening this forum! And I believe!
Hugs!!!
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Sofia, great to hear you are doing so well. You have some talented daughters who must make you very proud and realise the side effects of Kisqali are worth putting up with. I am into my 6th cycle and the fatigue and nausea have hit me hard this time round. My latest CT scan showed minor reduction to liver and breast, and lymph nodes stable. My onc has reduced my dosage to 400g per day, so I will see how that goes.
How's everyone else doing?
Hugs to all
Jackie
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Hi Girls
Everyone is having such great results 😊 I have my results from my scans after 9 cycles of Kisquali , Letrazole and I am stable also.
I just wish it wasn't for newly diagnosed and everyone with this disease could have the results that we are having.
I have another grandchild due in September and I feel truely blessed that I am making these wonderful milestones.
Cheers Mandy
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Mandy, that’s double wonderful news! A grandchild and stable results.
I have been on the lower dose of the kisqali for a few days now, and feel like I’m bursting with energy - I cant believe the difference in the way I feel...SES are gone, I’m back to walking the dog, babysitting the grand kids and generally happier in myself. I hope this doesn’t affect the efficiacy of the drug.
Jackie
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Thanks Jackie Im glad your side effects have improved with a lower dose. I don't have to have my bloods tested or visit the Oncologist until the end of October (reprieve)
Mandy
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Hello ladies
Strangely It only just occurred to me to search for such a group. I guess because it's such a relatively new drug. but I'm glad I found you all.
I'm on about12th cycle of the ribociclib/letrozole. I must say encouraged by the response of all tumors shrinking and continuing to shrink and bones healing too. Very grateful for the kinase inhibitor.
I have been having side effects of dizziness confusion wobblyness and sometimes exhaustion in the middle of the day. It is the letrozole not ribociclib causing that. Interested to read here suggestions of taking the drug at night to sleep through the exhausion. I might give that a try.
Thank you.
Cheers0 -
Hello again
I have just been reading more of your posts. I had low haemaglobin and red blood cells. But I'm now taking iron supplements with vitamin C and now back in the normal range along with white blood count too.
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Hello there, WestOxford! We're so glad you found our community and are able to connect with other members on this particular combo. We hope that reading these posts has been helpful, and we hope the rest of your treatment goes well! We look forward to seeing more of you on the boards!
The Mods
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Hi WestOxford
Glad you found us. I find the Letrazole causes as many problems as the Kisquali. I have sore joints and the hot flushes just keep coming. I take my combo in the morning. The results have been very positive.
Mandy
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Hi WestOxford and welcome.
My situation is very similar to yours except my AI is anastrozole (Arimidex) rather than letrozole (Femara). The duration, low counts, and side effects have all been similar to yours. Most of my counts rebounded quickly after I first started. The additional SE for me now is the intolerable heat sensitivity beyond the flashes that turn into severe hives. MO recently took me off Ribo for two weeks, but that produced no change. I too believe most of the SE are from the AI, not the kinase. I take my meds in the a.m. and the results have been great. I avoid the heat (bummer--I am an outside person now with a reaction to my own sweat) and MO treats a breakout with a prescription antihistamine, a topical salve, and a steroid and tells me to stay inside in the air conditioning or we can try a different AI.
Jan
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Hi there
I completed 1 cycle on Letro and Kisqali and developed a sudden deterioration in vision. Wondering how your vision problems evolved. Would appreciate any help with the issue.
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Hi Dorothy skin problems looked like hives, it wasn't itchy but I was covered in hives on my legs, arms , chest and back. I was dropped back to 400mg as my legs were swelling with fluid. I was still struggling on the 400mg so now I take 200mg. I still have some redness on my calves but it is manageable.0 -
Thank you
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Oh no Mandy, the hives are bad enough but leg swelling sounds very dangerous. I did not have that. My hives itched like crazy and where clothes or skin rubbed, my skin became raw--and I had them everywhere too. It is miserable. I'm still on 600 mg/day ribo but am now taking non-generic Arimidex to see if that makes any difference. I don't think it will, and I remain convinced I'm overly sensitive to heat caused by hormone suppression. (In case it's not clear, the pic is of the inside of my arm.)
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Dorothy that looks uncomfortable, I hope you get some relief soon. My problem was definately the Kisquali
Mandy
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Hello ladies.
Welcome to the new one.
I feel your pain for the vision problems and the skin problems. In these 9 months I havent tried reducing my meds. But the side effects keep coming and going themselves all the time.
Argan oil has helped a lot with the skin. But I didnt ask the doctor to be honest so please speak to your MO first.
My vision problem got fixed with glasses. I keep having blurry vision in the night mostly, which makes me insecure to drive but at least it is better now.
Hugs!
Ida
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Hello my fellow Warriors!
I thought it might be time for an update. I have just ended my 12th cycle and as you know have had most of the side effects that go along with this drug combo! Take heart ladies, it gets better! Your body adjusts! I take my meds (600mg plus the Letrozole) in the morning.
My eyes were extremely dry- drops four times a day worked on the recommendation of my Opthomologist.
My itchy skin was receptive to the cream my Onc. Prescribed.
My nausea is under control with an oatmeal breakfast or ginger marmalade on toast.
My hair has finally stopped falling out but I wear my wig anyway when going out, if I'm just walking the dog, on goes my baseball cap.
Unfortunately my lactose intolerance is a bit worse so I am trying to avoid any dairy. Although for some reason I can eat ice cream! Yayy!
The best news is that my husband and I are flying to France in September! I know from experience that I feel great during my week off the Ribociclib so we have scheduled our dates accordingly. Can't wait. We planned to go pretty much as soon as I was diagnosed. It is my favourite destination and the number one item (maybe the only item) on my bucket list.
Hang in there Ladies, there is a lot of life yet to live!
Susan
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Hey my friends,
I have had those same problems with my vision!. I’m 44, and it’s as if my body has aged 20 years since I first got diagnosed 2016. It’s good to know I’m not alone.
I’m on my 4th round. Eyebrows and eyelashes are very very sparse , but my hair is great. I take Biotin everyday. Maybe that helps.
First pet scan after stage 4 diagnosis: lesions are healing. No new lesions. Lymph nodes are clearing. There is room for hope.
I take the full dose of Kisqali every evening. Three weeks on, one week off. The nausea is too much for me to work if I take in the day. My joints ache and I feel 100 yrs old.
I have been to Italy and London in the last couple of months. If nothing else, I want to LIVE my life. I exercise everyday, I laugh, I cry, I drink wine and eat cake.
I try to remember, no one is gauranteed another day. We just know more than most how truly precious every moment is. I’m scared. But you and others have showed me how to put one foot in front of the other, daily, minute by minute, to make it through this crazy diagnosis.
We got this. We are freaking warriors. We are the ones they will write about in the scientific journals. We are lLIVINGwith Stage 4 freaking cancer!
(I needed to get that out! No one else but you will understand.)
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Hello again ladies.
Have any of you achieved NED on Kisquali?
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@Valeria you have said it very well! You spoke my mind!
@WestOxford to be honest I dont know anyone yet but my onco said to me that they expect that to happen (in general not specificaly me) and it has happened and I have to say he is not the kind of doc to say stuff to just make you feel good!
God bless you all (even if you dont believe him)😂❤️
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Idajakoc thank you. It looks like you were diagnosed around the same time I was. I was diagnosed with stage 4 on 30th September last year. I started letrozole/ribociclib. On 6 October. Here they don't say much about what's happening to others so I feel in the dark.
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Hi everyone, I'm still hanging in here. I've been on this combo for over a year. I don't feel any better, I don't feel any worse. I'm progression free. I've had side effects come and go. The one that stays is the hot flashes, every day, all day. I need to take sleeping pills to get through them so I can fall asleep. Every 45 minutes or so , It's very unpredictable. My hair has thinned, my eyebrows are so pale you can't see them. My eyes are very watery all the time, which up works out great because I live in the desert. Like everyone else, I have aged 20 years in the last year. I have crepey skin, gray hair that has started to become curly, I bruise easily. It's just like everyone else, I've aged 10years in the last year. On the bright side, my fatigue is minimal, I look good, and I am having fun. It's very important to have fun.
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Hi Spacetrace
Well done! And thanks so much for the update. Progression free is excellent. I am too. How are you bone Mets doing? Mine are schlorotic which I'm told by oncologist is good as the bones are actually healing. But I can't find any information about schlorotic bone tumors. Hence my interest. Does anyone know?
Different oncologists divulge different information. I get the impression they don't know a great deal about bony Mets.
I aged too. My skin is very dry and thin - translucent. I started cooking with more olive oil and eating more flax seeds and it's feeling better now but still thin.
My hair is very fine too but still hanging in there. It appears to only grow about 10cm then falls out. But at least it's growing.
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Hello ladies!
I just wanted to share a memory with you!
Yesterday marked one year since I found the lump and on 16th markes on years since I had my first echographia!
Also on 16th I will have my 3rd scan.
I have felt happy and sad at the same time in these days!
I hope you all are doing good and having a great time!
Lots of love!
Ida
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Ida it has been a long year, thinking of you tomorrow,all the best for your scan
Mandy
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