Living with Metastatic Breast Cancer

Anyone else taking Truqap? Experiences and side effects?

Anybody else taking TRUQAP ?

How do you cope with multiple symptoms from metastatic breast cancer?

I have metastatic breast cancer with bone metastases and I'm dealing with several challenging symptoms right now. I'm experiencing severe fatigue, shortness of breath, depression, anxiety, and mouth sores. My oncology team is working on adjusting my treatment plan to help manage these symptoms better. I know these symptoms are common with metastatic breast cancer and its treatments, but I'm feeling overwhelmed trying to cope with everything at once. I'd really appreciate hearing from others who have been through similar experiences. • How did you manage multiple symptoms happening at the same time during your treatment? • What strategies or routines helped you get through the toughest days with fatigue and other side effects?

Should I take anti-diarrhea medicine with Truqaq side effects?

I have a lot of nausea and diarrhea lately with Truqaq. I text it in combination with Kisquali and fluvestrant shots which are monthly. Wondering if I should take anti diarrhea medicine before my next dose?

Does ILC not show up on PET scans? Anyone tried different contrast?

I was diagnosed with stage 4 ILC about 6 months ago. They found out that the tumors I had from my hysterectomy 3 1/2 years ago were actually ILC so I was essentially misdiagnosed for 3 years. My question is about ILC and PET scans. On my scans basically nothing shows up. The only thing that shows the cancer is MRI’s. They are using ctDNA to determine treatment response. They confirmed that both my previous tumor from the hysterectomy and from bone metastasis in my spine is indeed ILC via genetic testing. I wonder if anyone else has had this happen. I had a regular PET scan and it showed basically zilch but I have MRI’s that show it in my spine pelvis ribs sternum and arms and in the beginning I pushed hard for a PET because I was scared about where else it was that I had not had an MRI. I know there is a PET scan that uses a different type of contrast and is better for ILC. Has anyone had this type of PET and did it show your metastasis.

Has anyone else dealt with diarrhea from Ibrance and Letrozole?

I have been on letrazole and ibrance for over a year now. It seems to be working, however the diahrrea is horrible. Like every 3 days I’m having it. Then I take immodium and then after a few days , here we go again. Does anyone else have this problem?

Has anyone else discovered an autoimmune disorder with their cancer?

I was a stage 0 at 44 years of age. I didn’t take it as seriously as I should have. At that time the oncologist decided to do nothing. At the appointment I was trying to be really proactive and wanted double mastectomies. But my oncologist said -you seem really healthy all you need to do is have mammograms 1-2 times a year. I walked out of there thinking great. Fast forward 8 years and I had full blown stage 3c metastatic breast cancer. Exact spot where the stage 0 was at- left breast. Now I was looking mastectomies, 5 months chemo, radiation, Zometa and hormone blocker. Another 5 years go by and I have a grapefruit size tumor in my sacrum. 10*pain in my lower back. Placed on ibrance, Zometa and Letrozole. 2 1/2 years go by and finally they find out I have an autoimmune disorder called CVID. My body does not make plasma. Plasma helps to make immunoglobulins which mark cancer cells for your t-cells to fight. Which is genetic. So way back when I had a 0 stage that was really due to my autoimmune disorder. That went undiagnosed when my oncologist thought I would be fine. The question is why did my body make a bad cell and body did not fight it off 18 years ago. I am now NED. Only on Letrozole and Xembify (plasma). But it has been a long 18 years. So really make sure you do not have something secondary going on with your immune system. My question is - is there anyone out there that found they had an underlying condition. Like an autoimmune disorder with there metastatic breast cancer?

What side effects have you experienced while taking Kisqali?

Can others on KISQALI tell me about your side effects please?

How to store Kisqali in hot weather without air conditioning?

The formulation of Kisqali was changed again. The new formulation is to be stored not in the fridge anymore, but “at room temperature at 20C to 25C”. “Excursions” down to 15C and up to 30C are permitted. How do those of you who live in hot climates and don’t have AC, or those of you who travel to such area, manage this? I live in Northern CA, and we have already had quite a few “excursion” days, and I expect many more days in the summer when temperatures will exceed even the upper limit of the “excursion” window of 30C. How many such hot days can this formulation take before the ribocyclib loses its activity? I’ve tried to get this information from my pharmacy and from Novartis, but neither could answer.

What's it like taking Datroway instead of chemo?

Is anyone in this group on Datroway? I would love to hear about your experience with it versus chemo.

How risky is taking a break from cancer meds after NEAD?

How much of a risk is to take break from meds if you reached NEAD? And for how long?