Best Of
Re: Ribociclib/Kisqali with Letrozole - Any one on this combo?
Hi Jellytot83 - It appears that there are far fewer people on Kisqali (ribociclib) than Ibrance (palbociblib), at least as far as the postings on this site. Ibrance was FDA approved earlier than Kisqali and as a result received the lion's share of the market, so to speak. Ibrance/Letrozole failed me after about a year so I am now on a clinical trial with Kisqali and a new oral SERD with no name yet, just known as LSZ102. So I too have been in search of others to share their experiences with Kisqali. The hard part is that the CDK inhibitors like Ibrance and Kisqali need a companion anti-hormonal to work and that companion drug is a variable (letrozole, faslodex, arimidex etc) making it hard to compare apples to apples. As far as my experience goes, so far I'm feeling very good on my protocol. Most, if not all of the side effects I experienced on Ibrance/Letrozole are now gone. If this protocol keeps me progression free I will be very pleased - not only because it is working but because it is allowing me a very good quality of life. I hope the others on the trial with me are feeling as good as I am and are not seeing progression either. Being in trial is a little lonely. You don't have interaction with the others in the trial and you don' t know how they are doing. I'm in my third month of the trial and will have another set of scans on Sept. 5. I'll let you guys know how it goes.
Re: Stage IV MBC Fitness
I just had my vitamin D checked and it’s normal. I’m not very consistent with the sunscreen. My D levels have been normal every time it’s been tested even in this cloudy climate.
Went to Enhance Fitness today. Man, I sweat a lot! It’s not even hot in there and the exercises aren’t too strenuous! Due to the drugs I imagine. Every time I think “stupid drugs “ I try to turn it around and think “no smart drugs! “ I wouldn’t be here without them.
aj
Re: Can we have a forum for "older" people with bc?
We need to give each other the space to grow, to be ourselves, to exercise our diversity. We need to give each other space so that we may both give and receive such beautiful things as ideas, openness, dignity, joy, healing, and inclusion.
betrayal
Re: Ribociclib/Kisqali with Letrozole - Any one on this combo?
Hi S3K5 - I just started Kisqali (aka ribociclib) but not with letrozole. Ibrance (aka palbociclib) and letrozole failed me. I'm in a clinical trial with a new SERD that has no name yet. It's called LSZ102 and I take it with Kisqali. I started a topic for the clinical trial I'm on. I'll be following this thread closely. Thanks for starting it up. I'm sure a lot of others on the boards will be watching...
Good luck!
Re: How long have you been Stage IV?
Hi everyone! Hope you all are having a good day. @livinglifenow Pam, Just wanted to update you. I saw Mo today. She said no changes for now but on October 31st I have another PET scheduled and then see her on 11/4. She said if that one showed more activity in my breast that she would either have me meet up with Radiologist or surgeon. She said Kisqali is working good on my bone lesions and that they are healing. Glad that’s out of the way. Hope you all have a good week and weekend!
ssales13
Re: How long have you been Stage IV?
@ssales13 Stacy, thanks for the update. Glad that the Kisqali is working on your bones!! I will pray that your next PET shows improvement. My next PET is in October as well.
We do a lot of living day to day, week to week, and month to month. Hope you are feeling healthy and have good energy. I am feeling much better since I switched from Anastrozole to Exemestane. It took about 3 weeks for the Anastrozole to clear my system, I think.
Have a wonderful week and enjoy every minute!
Hugs, Pam 💗
Re: This sucks - Osteonecrosis of the jaw
Still slow progression of ONJ and no pain. My periodontist and my dental hygienist on it! I've been off Xgeva for a year. I have no idea is this is keeping my ONJ progression slow or if I am toast in the long run no matter how long I'm off Xgeva. Nothing of note has popped in my two most recent whole body bone scans regarding ONJ so I believe I am not in immediate danger.
Re: Join us: Younger with MBC Zoom Meetup
Hi everyone,
Just checking on people here. I did my PET/CT last month and it was a good one…still stable <3
How are you feeling @cskinner ? I hope you're doing better
Re: My Husband, My Life, My Love, My Family, My Cancer
@candy-678 Thank you for the update on Mel and Gabby, I am empathetic to the longterm cancer treatment myself as I am at 10 years of treatment myself and pretty exhausted most often. I hope things are going better for Gabbby. @mkestrel The flowers are pretty and so is your cat. Very cute. @goldensrbest Happy anniversary to you.
I just woke up, went to bed late but that is fine with me. Rainy here and cool, I can sense some chTiggeanges in the weather which is fine with me. Less humid which makes warmer weather more comfortable. Soon enough, heat will be turned on and the apt will get pretty warm so leaving all stuff in the windows, AC in bedroom stays and the window fan which is not turned on but catches the breeze will stay on as well.
Tigger and I will be taking care of some laundry, let him stay on top while it goes, not much to be done, might just wash up a blanket or two, I will see what I feel like.
Food is a mystery, need to open up some beans, I had a can of mushrooms yesterday, the whole can for one meal. Today looking at using my mini grill to heat up and eat a frozen burger, after heat up just mash up in a hot pan with an egg and some new beans. The masher has overall replaced the chopper. Option 2 sees the egg used and me opening canned potatoes, dumping the starch and using that in meals. I willl see.
I hope everyone has a good day, should I discover a new meal for myself, will definitely post it. I am in pockets for everyone who needs some pocket support.
Scalp during/after hair loss
I’m 17 days post first infusion. My scalp started being very tender about day 13. Hair started falling in earnest on day 14. I’m not bald yet, but it’s coming out in clumps. I’ve read many posts about hair loss, but I’m wondering more specifically about the scalp pain. Does the pain stop when the hair is all gone? If not, any tips? I’m just using ice packs to help right now.
jlhmom75