How Many Are We?

Ellalou,

A while ago you wondered why we were put on different medications. I think that all MOs have to evaluate each patient and then determine, based on the MO's experiences and recent developments, what to recommend. I had really bad blood tests before my bc dx. I had severe pain throughout my body that was originally diagnosed as polymyalgia rheumatica. Luckily, I was referred to my hemotologist/oncologist, and the correct diagnosis was made. The pain I was experiencing was from the bone mets. Anyway, among other abnormalities in the blood work, I had severe anemia and a low white cell count. Those factors probably made me a better candidate for arimidex since ibrance can lower white cell counts. I am doing well on arimidex. I have no pain and no side effects. The tumor in my breast is shrinking and is softer. My white count is now within the normal range, and my hemoglobin is getting there. My alkaline phosphatase has also gone down to normal, indicating less activity in the bones. Next month I will have TMs checked to see if they are coming down. I hope this treatment works for a long time.

I hope you are also doing well. I have read wonderful things about the drugs you are taking. They seem to be an excellent choice.

I will have my first Zometa infusion next month. I had to get all my dental work done first, and my dentist wants to make sure everything is perfect.

Lynne

Wendy3,

Yeah it is too much sometimes. i try not to always talk about it with friends and family and try to ignore it but really I can't inside. I've known about this for only a few months so I am sure a few years from now it will be different as we learn to live our lives despite this condition. I know there is no cure but I think it is realistic to assume there will be. I have to go get my aortic valve replaced soon with a bovine tissue valve and my oncologist, cardiologist, and heart surgeon all expect me to be around a long time. So that's encouraging

Moooooo,

Ellen

debcaudill, welcome to Breastcancer.org. We are glad you found us, and hearing your story.

debcaudill, welcome. I am sorry for the situation that brought you here. I hope your treatment works for many years.

Lynn

thank you. But I still feel lucky. Ive beat that beast twice, well 3 times if you count the lung cancer. Too many of my friends arent here to say that. I hope it works for a long time too although like everyone else, I pray for a cure.

Hello! I've been an occasional lurker as I scour the internet in search of answers for this disease. Originally diagnosed with BC in 2010, diagnosed with bone mets Oct. 2014 in my spine, ribs, femurs and pelvis. Still feeling devastated after all this time but getting better at handling it now. Trying to enjoy life everyday. Most days are pretty good, others send me spiraling down. Taking Arimidex and getting monthly Xgeva injections. Had tremendous pain from the Arimidex but it stopped when I started the Xgeva. Other than an almost constant mild, low back pain, I feel fairly well most days. Last CT scan showed slight improvement in my bones so meds seem to be working. Lots of hot flashes, trouble sleeping, lack of energy sometimes but everything is tolerable at this point. Just started acupuncture and I did sleep better that night. Like everyone else, hoping this turns out to be a chronic condition for many, many years.

We wanted to jump in here to let you know about a new tool called the Metastatic Trial Search, the first-ever clinical trial search engine designed specifically for people with metastatic breast cancer. Big thanks to a few community members who helped to test it!!

Metastatic Breast Cancer Trials

Take a look, and share your experience! And please, pass along to those you think may be able to use it.

Okay, try now! I hope it works now!

Hi Everyone,

I feel like I should know the answer to this question but I'm still pretty new to the world of dealing with breast cancer. So, do I still need to get a mammogram of my remaining breast when I am stage iv and on letrozole and Ibrance? If so, how often and why? I had a breast MRI in March that showed no evidence of anything going on that breast.

Ellen

suersis- your story is literally the same as mine. So sorry to hear you are back here too. I was diagnosed stage iV in June due to a pleural effusion as well. If you have any questions about anything just message me. Hope u are doing okay.

Yeah  suersis I'm very happy for you that must be a huge relief eh? Enjoy your dog walks.

I was listening to a podcast on Living With Metastatic Breast Cancer last week. They said there are 14 million of us in the United States. It used to be that the oncology doctors saw only a few of us in a day, and now they see 40 patients a day with metastatic breast cancer.

Our doctors are getting better and better at treating this disease.

Hi barbe1958,

Sorry you joined our club but welcome nevertheless. The stage iv section has many great threads that you'll want to check out. I've only been here since June (de novo) and the ladies in the stage iv threads I follow are a great source of inspiration and information.

Ellen

Hi Barb welcome welcome sorry about your scan results. Took me a bit to get my head around it but now I have to say most days are good better than good. New treatment plans always help as well. Big hug from Canada.

Wendy

We are one more...me. I am newly diagnosed with mets to the lungs. Lots of tiny bits everywhere, in all five lobes. 100% ER+ and 100% PR+, Her2-. Grade 2. No symptoms, discovered accidently as part of an annual physical which included a low dose CT lung cancer screening instead of the usual x-ray. Lung biopsy using VATS technique last week confirmed breast cancer mets to lungs.