Ribociclib/Kisqali with Letrozole - Any one on this combo?
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Hi everyone, I'm on my 3rdcycle of Kisqali with tamoxifen. Side effects have been tolerable but what bothers me the most are the vision disturbances. Interesting thing is it starts every night- I see wavy lines with distorted vision. It doesn't last too long but enough to concern and bother me. Anyone experience the same? If you did have it, did it go away I really hope to be able to stay on Kisqali and not have to stop since my tumor marker seems to be improving though I'm aware that scans are most telling and accurate. Thank you and best wishes to all you brave ladies on this forum.
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Is it coming on with the sun setting outside? It could be cataracts reacting to reduced light. One side effect of taking our estrogen away is that we are prone to "old age" diseases, like arthritis and cataracts.
I'm not on Kisquali, so I could be wrong, wrong, wrong, and it is a common side effect. But, if you haven't had an eye exam in a few years, it might be a good thing no matter what.
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Hi HannI
I have been on Kisquali and Letrazole for 10 months, and I think it took 9 of them to have many side affects and adjust to them. I have a floater in my left eye that is so annoying and I was worried that I had a tumour in my eye . I told my Oncologist and GP and was told not to worry about it. The optometrist diagnosed just a floater, so I am just living with it. If you read the posts there are lots of skin problems, eye problems, digestive problems and joint pain. I hope you remain on your duo for a long time. This forum has been very positive.
Mandy
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Hi everyone I'm from Australia and just been told I have no treatment options left. I can't have this drug because in Australia they're only allowing it for first line treatment. I have to pay $5500 per cycle. I have extensive bone mets, adrenal gland and Liver. We find out on Tuesday if Navelbine has worked. I'm not to positive it has.
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Hi Donna
I'm from Australia also , this is so unfair. I don't think a lot af people realise this. I hope that Navelbine has worked for you.Sending you a big hug.
Mand
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Hello Ladies!
Donna I am praying Navelbine has worked for you! Please pardon my ignorance what does first line treatment mean?
Han as I have said before in the forum I have had the same problem as you with my vision. It is not going away but I fixed it with glasses.
Lots of hug for you especially Donna!
Ida
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Hello ladies, I was directed to this thread by moderator when I asked if we could have a thread on Kisqali. I'm about to finish my 5th cycle next week. So far all tumors reduced and TMs are way down. Side effects have been harsh and after 1st cycle I was reduced from 600 to 400 mg. Still nasty but tolerable. Glad to have found y'all. I made my signature public so you can see where I am. Hugs and peace to all.
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Hi WestOxford, my second pet scan report said my lesion appeared more sclerotic, displayed low FDG ACTIVITY, improved from the first scan. My oncologist said it looks like a patch in the diseased area. Good sign
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Hi ladies,
15 months from starting the study with kisquali/letrozole. 6 images with magnetic resonance up to now. The liver lesions shrinked from 11 mm to 6-7 mm. They are still 8 as a number but they are shrinking. No new lesions!
Side effects - coming and (some of them) going:
- Hair problems (nothing to do here. I am using 5% minoxidil solution - this is a drug for hypertension and one of the side effects is hypertrihosis, e.g. increased hairing I think it helped a lot.
- Joint pain - but mianly in the morning and after a long sitting in a chair
- Strange visual effects especially when there is light in the night. But so nice effects! Common! Like in a disco bar : )
- Heart beats and palpitations - they stopped when I started the ribo in the evening
- Skin problems - generally I have nickel allergy and I am using only gold (nice, hm : ) But recently I noticed that I have rash/hivesaround the necklace. So I am over even with the gold. I should try some diomonds mayber : )
I am still attending Zumba classes! And I was thinking - I am so tired and exhausted because I did not have much sport the last years : ) So from 12 months I have again so much energy with this Zumba! Start sporting, girls! immediately : )
I am so glad to share with you these news! because I know each one of you is seeing herself in me : ) in my results! I am so worry when I do not see someone from you for a long time. So pls always come here and make just a short note!
Dona, dear - you will find your medicine You will see! praying for you, dear!
Parisaway - you did not say anything about your stay in France : )
Ida, what about your new results? You wrote that you will have new exams and then you did not share anything? Ida, I was in Italy 1 month ago - with my family and with a camper. my first experience with a camper - Lago di Garda and Gardaland, Venice, Verona...Nice country. Nice people.
Spacetrace- nice words, dear!
...Hugs to all of you!
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Hello to all, I'm finishing my 6th cycle of kisqali/letrozole -400mg. Tolerating well, hoping my blood counts are good tomorrow before my 8th zometo infusion. Have run out of my co-pay assistance for this year so 2019 can be too expensive for me until I can reapply in April. Oh well, I can only live today so I'll worry about that tomorrow. I see many who have been metastatic much longer than me so I try to find hope that I can remain as active as you guys. The tumors in my back have hobbled me but I'm getting around better. I turned 69 in September and my husband and I were big into camping. I haven't been able to climb the steps on our camper so I haven't been camping in almost two years. Hoping that will change as soon as a cool spell hits the Houston area. Hugs and peace to all. J
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@vazmutena- omg you were in venice! I live really close to venice! And about the results I did them on august and they said stable form the last scan which means: breast mass is reduced to 12 mm now, the mass on my left femur is no where to be seen but the bone healing is taking time. And no new masses. So it is a great result! According to one of the doctors I met on september, quote: "maybe there is nothing left to reduce there and there is just scar tissue. But we cant risk to do other examinations because of high radiation"
And for the sport you are so right! On june and july did areobia at home and they where my best months so far! So now that the heat is gone I am starting them again!
I dont want to bother anyone of you but I have a problem. Those of you who started this medication for free and during the treatment it got approved and on payment. Did you start paying or it continued for free???
I ask because I am not italian and I have no rights here. I just came here to save my life! But if the medication goes on payment and I have to pay, they either make me stop the medication or pay it( which costs are really high)! And I just want to be prepared! But as JoE777 says I only live today I try not to worry much!
Much love for you all!
Take care!
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Hi ladies,
Hope you are well.
I just started cycle 10. For the last couple of cycles I have had UTIs....ugh not fun.
I started taking the meds in the evening and I am finding that my sleep is getting impacted (e.g. getting up at 3am to go to bathroom and not falling back to sleep till 5am). Other than that my side effects are minimal now.
My scan came back as stable, mass is 5mm and it is same as last one. So stable is good.
Wishing for stable and reduced masses do all of you.
Hugs to all of you.
Lola
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Hi all,
I have just got the results of my latest CT scan that show the cancer continues to shrink. This is my 9th cycle on Kisqali/letrozole and during this time my primary cancer has reduced from 21mm to 6.8mm, liver met from 21mm to 11mm.
My last 2 cycles have been on the lower 400mg dose. As a result, I have noticed a reduction in side effects. I sleep better, have more energy, feel mentally more alert and my hair has stopped falling out so quickly.
On the down side, I still fatigue quickly, have brittle nails, aches and pains in the morning till I get mobile, and occasional nausea. Overall I can’t complain and my oncologist is thrilled with my results.
I hope this combo keeps working for us all.
Healing hugs to you all,
Jackie
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HURRAH!! Kangaroo Roo. You're two cycles ahead of me and I've had great results too. My dosage is the same and most of my discomfort is like yours except I have more trouble with stamina when walking and standing. I guess that's because the cancer is in the lower back and has done some nerve damage but it's tolerable as long as I know it's shrinking. My onc is thrilled too. It was pretty grim when she first saw me. I couldn't walk, think or eat. I'm really looking forward to more good reports from you in the future. I have my 3rd pet scan next month and I really have high hopes. Hugs and peace. J
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JoE777, That’s great news. For everyone new to this combo, I forgot to mention about hot flashes in my earlier post. Initially this was the worst sidefx for me...They were strong and happened every 30-40 minutes. These have now weakened and now I rarely get them, and not nearly as intense. Certain things seem to trigger them, alcohol, stress, spicy food etc...but I feel much more in control now
Jackie
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How are you now tatami rossi?
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Hi spacetrace hope doing well on kisqali.... Need to ask certain facts about it.... Does it really help in tackling your cough due to lung mets?
What about loss of appetite if you d felt any?
Fatigue???
Plz do reply
Sanj
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hi everyone, I’ve been doing great. My side effects have been pretty steady. Letrozole of course put me into menopause so I have thinning hair, crepey skin, and brittle fingernails. Hot flashes can be debilitating, They’ve just be come part of life. My scans are still clear, my doctor has decided that I’m doing well enough that I only need a scan every six months and labs every three months. My fatigue is steadily getting worse, it was better when I was going to the gym. I guess I’ll be going back to the gym, LOL.
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Hi All!
Time to catch up. My husband and I had a great trip to France! We rented apartments in Paris and Nice and good thing too, as I was really tired by 4:00pm and we could relax in our rentals.
When we got back, I had a CT scan and the results are that everything is stable. Good news! I am now starting my 14th cycle at full dosage. I think my body is finally adjusting to the meds, my hair has actually stopped falling out and is actually growing! The fatigue continues but I feel better than I have for a while.
Hope you are all doing well and keeping up the fight!
Cheer
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Just checking on the kisqali crew. Hoping everyone's treatment is going well.
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Hi JoE777,
We do seem to be a quiet group... I hope that's because we are all doing so boringly well we don't have anything new to report. My only complaint is fatigue and I find myself looking forward to the week off Kisqali.
Hugs to all,
Jackie.
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Jackie, I'm glad your doing well. I started my break yesterday but always have a zometo infusion on that day to add a bump on the road but it doesn't last long. Got my tumor markers yesterday and they are normal. Scheduled for pet/Ct scan on the 14th. If all is well I may be able to adjust some of my treatment.
Hugs back,
J
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So I have been on this combo for 13 months but my markers continue to gradually climb in the last few months. I'm so disappointed because the side effects have virtually stopped (except the itchy/rashy skin), hair has stopped falling out and I have about an inch of regrowth. Afraid that my next visit may require a change in meds. They did not see anything suspicious in my July scans, but I got them in a different hospital, so the RO was unable to do a good comparison. I expect I'll be getting new ones real soon. No pain at all since 8 weeks into my meds, but just this week starting to have hip pain again. Ugh ... hoping it's nothing but the tumor marker rise has me concerned.
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Wow!! Looking at your DX and see you've been at this for a long time. I know markers are unnerving so I would wait for the scan results. Easier said than done
did you have pain in hip and back with metastasis? It could be the meds. I have right hip pain occasionally. My mets are in lower left sacrum. Wishing you peace tonight until you get your scans. Please keep me in the loop. Hugs . J0 -
JoE777 ... Thanks for your concern. Yes, I have mets in just about every bone in my body. Hips were the most painful in the beginning but no pain since starting this combo plus Zometa. Well I will plug thru this until my next appointment and see what's up. Like everyone else, I'd like to stay on my current meds a long as possible.
Wishing all of you pain-free days and unremarkable scans.
Kathy
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Hello ribo fam!
I hope everyone is doing great! And having a beautiful fall!
Kathy I hope everything is ok in the next scan!
Mine will be on thursday (4th aka 12 months done like a pro), a little worried but dealing with it!
Hugs!
I will let you know what will come out of the scan!
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Hello All
Best of luck Kathy. Ida I hope your scans bring great news. I am doing really well , I have my next scans at the end of this month.
Mandy
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Hello everyone.
I can't remember if I posted before. I naively believed for 2 years I wouldn't need to! First let me say I have been reading your stories and am sending love and my hope for all of your wellbeing.
My situation: I ended treatment except for Arimidex to prevent recurrence on Dec 31, 2014. I thought I was out of the woods. Then, this last August I had a PET scan that showed a mass on my pericardium, which is too close to my aorta to biopsy. This got me a bone marrow biopsy (ouch!!!!)--that showed about 5% bc cells in my bone marrow. I have no lesions or solid tumors that I am aware of. So now underway with Zometa, Faslodex (fulvestrant), Kisqali, and letrozole since August.
I am on my third box of Kisqali. Main side effects are itching on my scalp, face, neck and weird heart rhythym ( I passed all the EKGs). My back seems to hurt more on week 3. In week 3, where I am now the queasiness and fatigue sets in. I am paranoid that my hair is thinning but not really sure that's happening. SOMEONE please tell me you still have your hair! It took forever for it to grow back after the taxotere and cytoxin.
I've not seen anyone mention testosterone for side effects of estrogen suppression. It was given to me in a study and I have been getting it every 90 days since June 2015. I am pretty sure I would be using a walker right now or would have abandoned treatment if not for the testosterone. It gives me energy, brain power and reduces pain. That last part could also be the Cymbalta, lol.
Thanks for listening and for sharing.
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Gday Tbelle, welcome to our little group. Kisqali and femara can have hair loss as a side effect, but I haven’t heard of anyone losing all their hair. I’ve been on the combo since January and noticed some thinning around 3 months, but am finding my hair is starting to thicken up again (hope the stuff is still working). My main side Fx are lethargy and occasional nausea. Most of the time I feel OK.
Cheers,
Jackie
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Thanks Jackie! With that new info, I am going to try and relax about the hair. Funny the parts you worry about huh?
xo
Lisa
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