A community of HOPE

[Chewysmom]

I am new to this group . So many life changes in such a short period of time . 2 small kids , I had 3 opinions before starting treatment . started with Ibrance and letrozole for a month . Had Zomadex and Zolodex for bones to keep strong . Went to Md Anderson to get 3rd opinion they recommended switching to Kisqali . Supposed to be more effective , I’ve done well with Ibrance just worried about the side effects for Kisqali . Anyone here have tried ?

[Discocat]

Hello

Sorry for the circumstances...but welcome to the group. I'm coming up to two years since diagnosis with widespread bone mets from skull to pelvis and pretty much all bones between.

I started on Kisqali but switched to Ibrance...there is a similar discussion that just started a few days ago about the side effects of Kisqali and you can read the responses there as they might help.

Like you I also got other opinions before Starting my course of treatments...I'm also taking Zoladex and Zometa monthly together with ibrance 3 weeks on one off and Caltrate supplements ( prescribed by oncologist).

All the other oncologist confirmed that they would suggest the same treatments in my condition...

Wish you all the best and hope you tolerate your meds well and get the best results possible.

I've been stable now for some time with no active disease (NEAD) primary is now undetectable in the last scans.

Regards Zoe xx

[Chewysmom in reply to Discocat]

Thank you Zoe , how did you handle the Kisqali ? I did pretty well in Ibrance for one month . My oncologist seems to prefer Ibrance she said it was more tolerable .

[Discocat in reply to Chewysmom]

Well I felt fine on it for a few months...for me the biggest adjustment was going through the menopause by having the hormone therapy ( Zoladex implant monthly and Letrozole). But my liver enzymes went very high and I also had a lot of skin rashes at the same time...since scans showed that internally it was working on shrinking the tumors my oncologist suggested that we could continue with another cdk 4/6 inhibitor ( Ibrance).

I had to take some time out from all meds and treatments to allow my liver enzymes to return to normal levels before I could switch.

I've heard from others here that there are reports and studies that do seem to show Kisqali having faster results at zapping the tumors....but I've also heard others having the same reactions as me and also having to then wait for their enzymes to stabilize while being off all meds too.

It's scary at the time but in the big picture I've so far had no further progression and all things have shrunk and bone density has improved with the Zometa.

Everyone reacts differently. I'd recommend drinking lots of water and trying to eat healthy...my oncologist also really recommends that I'm as active as possible...as its good to maintain bone strength and keep weight down too ...which is also good for joint and bone issues.

If you like you can 'personal message' me and I'll try to answer any questions that I can help you with.

Zoe xx

[Mumberly in reply to Discocat]

hello Zoe. It’s great to hear from you and I’m glad to hear that you’re doing so well.

That must be exciting to have that NEAD report.

I’ve been super lucky that my scans show improvement/stability but I can’t wait for that report that says NEAD ☺️🙏.

Stay well.

Kim

[Discocat in reply to Mumberly]

Thanks...but there's a big difference with NED and NEAD. I've got no progression, stabity and shrinkage everywhere which technically means no evidence of active disease...NED ( no evidence of disease) is the one we all hope for but when you have extensive bone mets it's unachievable.

[Here_now]

Hello,I just wanted to say hi! I am a mum to a small daughter also.

I can't help with the Ibrance/Kisqali question as I moved on from Ibrance a while back (I'm now on Xeloda) but feel free to mail me.

Faye

[OceanBreeze3]

Welcome! My daughter was 14 when I was diagnosed with mets to the bone. I go to Dana Farber in Boston. Went on Ibrance/Letrozole. Also have zometa. I was NED after 3 months and have been for almost 4 years now. I have been off all medication since Dec 1 and will be starting Tamoxifen mid March. I stopped the Ibrance about a year before on my own, then the Letrozole because of joint pain. Will try Tamoxifen, if things change, I will go back to Letrozole. Search the forum - you may find more answers about Kisqali. All the best, Lynn

[Chewysmom]

Thank you Lynn !

[troutgal]

Hi Chewysmom- it is so hard to keep up with the research and options. Particularly since there are so many variables and our bodies are all so different. Today is the 17th anniversary of my partial mastectomy. Did 12 years on femara/letrozole. Then was diagnosed with metastatic breast cancer 5 years ago. I have been on the ibrance/Fulvestrant combination ever since. Not much in the way of side effects - some low/high blood counts but nothing very serious; and occasional constipation managed with oncologist prescription for lactulose. Just came back from my 4 week oncology checkup and Fulvestrant shots and blood draw. Still doing well. I wish you the best no matter which rote you end up taking.

[Chewysmom in reply to troutgal]

Thank you !!!!! I appreciate you sharing your story, give me so much inspiration

[PJBinMI]

I don't have personal experience with Kisqali but wanted to welcome you to this great group of women who "get it" about living with MBC. I'm sorry that you and your family got this bomb dropped on you...so unfair when mothers of young children get this lousy cancer! I'm a long timer--diagnosed 3/1/2004 with "extensive" bone mets from the get go. Meds like Ibrance and Kisqali didn't exist when I was first diagnosed. Letrozole was my first treatment (with Zometa for the bone mets) and kept the cancer controlled for almost five years. Faslodex was my second treatment and worked for over 9 years! I was on Ibrance with it for a few cycles in 2016 but it damaged my lungs so I needed to stop it. My next anti-estrogen med was exemestane and it worked until fairly recently. The cancer cells morphed from estrogen receptor positive to triple negative and I'm on my second cycle of Xeloda, 2 weeks on, 1 week off. One of my main ways of coping since I got the MBC diagnosis has been to learn all I can about it. I attended several conferences. The first was the annual conference of the Metastatic Breast Cancer Network, and their conferences have been my favorites! Presentations by respected bc oncs and other specialists. Time for interaction with other patients. I don't know if they still di this, but they used to ask attendees to stand if they'd had MBC for five years, ten years, 15 and 20 years! The first time I was there, there was a 30 year with MBC woman there! Wow, was that hope giving! I've also been to conferences of the National BC Coalition, Share and even the San Antonio BC Symposium, the biggest BC conference for oncologists in the US, held every December. I also went to the closest Barnes and Noble, to the cancer section and browsed thru every book they had on bc and mbc. I looked at tables of contents, indexes, and opened the books randomly and read a few paragraphs, and bought the 3 books that most spoke to me, including Dr. Susan Love's Breast Book. My sense of humor has helped--sure alot of odd unexpected things with this crazy cancer! I was diagnosed the month of my 58th birthday and I'm nearly 77 now, a much better time to die than earlier in life! If you saw me out and about, you would never guess that I have an advanced cancer! Except for using a walker, I look pretty normal. The walker if because I have had spinal stenosis for a long time and the nerves into my legs and feet are damaged. I have almost no feeling in my feet and so my balance is a bit off. PT has helped me alot! One of the decisions I made early on was that if I even think of calling one of my doctors, I do it, and if it even crosses my mind to go to the ER, I go! No wiggle room when it comes to my health now. Better to over than under do and I've not regretted any call or ER visit. I also decided I needed to befriend needles! LOL I'd had a bad experience after my daughter was born, with an IV infiltrating during the night and it left me with mild PTSD like anxiety about needles. I've done well with that and can even watch the needle to in with raising my stress! My prayer before any tests is that anything that needs to be known will be revealed! I want my docs to know as much a bout me as possible. I'm going to stop now, but do hope that you will become one of the long timers with MBC! Your kids deserve that as you do, too!!

[Chewysmom in reply to PJBinMI]

thank you so much this gives me hope ! I am a big believer in keeping fair strong and living the best life . My kiddos need me more than anything!

[PJBinMI]

You are welcome! I sure understand that kids need their mothers!! I wish there was something we could do to keep metastatic cancer far far far away from children's mothers.

[Bless_68]

I was on Kisqali and letrozole or 4 1/2 years. I am blessed to have lived normally for that long with MBC until cancer became resistant and mutated to triple negative. I am now in my 4th line of treatment since September 2022. Now everyday is a struggle. Glad I made the most of my life with MBC while on Kisqali. I lived like there’s no tomorrow. Actually became the best of my life spent with friends and family on travels and adventures. All the best to you.

[Mumberly]

welcome to this amazing group of supporters.

My experience with kisqali almost mirrors Zoe’s (discocat) to a T, in that i felt well on it, but after three months my liver enzymes skyrocketed and I was taken off of kisqali.

It took 5 months for them to come back into range and then I started Ibrance in September 2022.

So far, so good in that my WBC are remaining stable and my quarterly CT scans show improvement/stability

My diagnosis was denovo in June 2021 after finding lesions on my liver in a scan I was having for an existing cyst on my kidney (not related to cancer, just a cyst they scanned annually). I had one small lump in my breast, three lymphnodes and three lesions in my bones.

I had no symptoms, no family history, and I had regular mammograms 🤷‍♀️

My first treatment was FEC IV chemo and then we transitioned to oral meds. Not because the chemo didn’t work, it’s just a time limited drug we used to give the cancer a good kick in the ass first 😁

I am inspired regularly by other women in this group who have lived long lives on MBC, whose treatments have been working, who travel the world, who lead active lives through exercise, and who share links to ongoing research that is meant to prolong our lives and the lives of those with MBC who come after us.

All the best to you with your treatment and with your young family 💜

Kim

[Chewysmom in reply to Mumberly]

Hi Kim , thank you , for sharing your story . 💕