Living with Metastatic Breast Cancer

Should I stop Kisqali after injection side effects or continue treatment?

for me i was diagnosed with stade4 breast cancer, spread to the bones and the lungs, i was put on kisqali, letrozol, zometa and zoladex it has been 6 days only that i began the kisqali but on the fifth day i had two injections ( zometa and zoladex) then the next day i had a rash, fever, nausea ,bone pain, headache, i got to the hospital and they said that i had a uti, my wbc are at the normal ( so no neutropenia) then they prescribed me un antibiotic my oncologist wants me to stop the kisqali for the period while i’m on the AB, but for me i’m not convinced that it’s the one that caused me this symptoms, i think it was because of the zometa is anyone passed the same thing to help with the decision??

How is life one year after Stage 4 breast cancer diagnosis?

I’m Pat, 78, diagnosed with Stage 4 MBC one year ago. The cancer had spread to the pleural fluid around my lung partially collapsing it. I also had “too many lesions on my spine to count.” I was told I’m not curable, but am treatable. My cancer was so advanced that the doctor didn’t recommend IV Chemo or surgery. Instead, I was put on palliative care, Arimidex, and 600mg Kisqali daily. Now one year has passed and I’ve been unbelievably blessed. I’m out driving, shopping, exercising and feeling almost normal! I’ve had some side effects of a rash and hair thinning, but I’m here one year later able to enjoy another Christmas with my family. I want others to know that this diagnosis is not always hopeless. Be faithful and hopeful.

How do you cope with bone mets and spine surgery while staying strong?

I also have the same diagnosis but 2 vertebrae dissolved. Prior to that I had no clue I had cancer - just thought it was arthritis in my back. I had surgery in my back to add two 10” rods, 2” screw, 2” spacer, multiple bolts cemented to my spine. But I can walk on my own. I get monthly infusions for my bones and take Letrozole and Ibrance. Ibrance causes my white platelets to really drop. My oncologist put me on Verzinio but I had a bad reaction so he put me back on Ibrance. I have to have labs every 2 weeks. I also feel like I’m walking alone. I have great faith in my Lord and that’s gotten me this far. Also, I am a Realtor and have had the best year in my 24 years as a Realtor and that’s because of my Lord.

New to stage 4 breast cancer - anyone have experience with Verzenio side effects?

Hello to everyone, I’m new to the group and would like to tell you a little about myself and why I decided to join this group. My name is Chawn, I’m 48, I’m from Alabama and I’ve been diagnosed with stage 4 metastatic breast cancer with metastasis to basically every bone above my knees and elbows. I have good days and bad days. Most days now I require the use of my handy dandy walker. Which irritates me if I’m being honest. I started out on kisquali and leterazole along with infusions once a month to strengthen bones. ( not to mention boat loads of pain meds) fortunately the tumor in my breast completely disappeared while taking this treatment. Unfortunately, I suffered from a rare side effect that caused interspacial lung disease and almost killed me. I have just this past month started verzenio. Has anyone had any experience with this med. my hair has been falling out and I’m very nauseated and fatigued almost all the time . 🤢 I joined this group because again if I’m being honest, sometimes I feel very alone in going through this. I would love to have someone to talk to who gets it. So if any body has any words of wisdom or encouragement I would love to hear them.

Has anyone experienced elevated TSH levels while taking Xeloda?

Any one have elevated tsh(thyroid hormone) on xeloda? Thanks, community!

Does cancer treatment cause scalp pain without hair loss?

I am not losing my hair but my scalp and roots of my hair are painful when I touch or Fix my hair. I’m on kisquali and Fasodlex. Anyone else dealing with a sensitive scalp?

Can flu shots cause low blood counts while on Verzenio for MBC?

I have been living with MBC since Jan. All has been great, just been living my normal life at 72yrs old. I had flu shot and Covid a week later. When I went for normal blood work a week after flu shot, my blood count was down. I was told to stop Verzenio for a week and then re test blood. Count was still low, but rising, so no Verzenio for a second week and then re test again. Does this sound normal?? Could the flu shot have caused the low blood count? Is it bad to stop Verzenio for 2 weeks, maybe more? I have been so normal this just has me worried.

Does anyone else hate being told "you can fight this" after metastatic diagnosis?

Hello. Im 56 as of almost a week ago, originally dx 12/12/12. Now dx with mets beginning of August. It's in my liver, lymph nodes, spine, lungs, left hip and pelvic space. I also have a 9cm tumor that is wrapped around my left kidney and abdominal aorta. They think that is another primary cancer either kidney or adrenal. I am scheduled to meet with a nephrologist for that one. On the scans it looks like my kidney is a water balloon being squeezed. The breast cancer is ER/PR+/HER- with PALB2 gene variant. I have a fractured L4. I did 3 weeks of Kisqali and week off now with extra week...waiting to start again as my counts were low. Just had another blood test yesterday and expecting a call to start again since my counts are up again. I am also on Anastrozole. My pain is well controlled with a fentanyl patch. Flexeril, and prn dillaudid. The palliative care team has been amazing with helping me with pain control although it took me complaining and finally a scare that I might have compression in the L4 that could cause paralysis. I was admitted my first appt with oncology at Dana Farber and that's when the palliative care teams saw me. They were amazing. I have an appt for kyphoplasty Nov 7th for L4 stabilization. My counts for CA15 have gone from 800s to low 300s. Pet scan scheduled for December. I despise when I see or hear You can fight this. You are strong. Where is the battle? Its not me who is fighting it, its the meds. And when it finally takes me whether a year from now or 20 it wasnt because of strength or weakness, it was because of the physiology of the cancer, not because I walked out of an imaginary fight. And I think its insulting to those that have passed away from cancer...does it mean they weren't strong? That they were weak? The next time someone says to me you're so strong, you can fight this. Im going to ask them how? How can I myself fight this? Where is the ring? And when it finally takes me does it mean I was weak? Does it bother you? What have people said to you that are clueless even though they are trying to be supportive?

Why do cancer drugs cause horrible throat slime and taste changes?

Do any of you have a "ribbon" of the most horrible tasting slime down your throat? Awful taste exuding from within my body...can't eat ANYTHING. Lost almost 100 pounds in 8 months. Puking and spitting up goop all the time (not to mention all the other symptoms that go along with Letrozole and Kisqali). I have MBC to my bones ( all of them; spine, ribs, skull, head to toe, too many lesions to count).

Has anyone here dealt with brain metastasis?

Anyone with brain metastasis? What treatment are you on?