My Mom: Invasive Lobular Carcinoma with Bone Mets

Thank you for sharing your personal story with us. It truly gave us hope and inspiration. I have sent of for bestbirds book and will continue to get mom more familiar with modern day technology.

My mom only has pain in her left shoulder and says when she cleans the house all day she gets tired. To which of course I said most women do after cleaning up after kids and husbands That made her smile. Our appointment is at 1:00 today, I have invited her best friend who is also a MBC warrior with different met and she is strong 5 years.

Your message gave us all the courage we needed this morning thank you

Well Ladies we just got back and we feel better. I wanted to let you know what her initial treatment plan is going to be.

No surgery, No chemo.

Mom will start on Femara (Letrozole) as her hormone therapy and next week we hope to have approval for Palbociclib (Ibrance)as her targeted therapy. I am praying she is approved as this drug seems very hopefuL.

Hello Cloud Nine,

I am so sorry that you are about to embark on the same journey as my mom. I would love to keep in touch. Mom and I make viewing this community something we do together. I recently retired as a network engineer and we have been blessed to find an amazing oncologist who will answer all my questions. I told my mom that my goal was to be her advocate and somehow help others along the way as we try to find our new normal. Although some of this information may be familiar to you it's sometimes refreshing when your mind wonders to go back and actually read about it. We are learning so much about MBC together.

So here is our story in a nutshell

Mom has been diagnosed with Metastatic Breast Cancer or some call it Stage 4/Advanced Breast Cancer Invasive Lobular Carcinoma. Her breast cancer has traveled to her Bones. (Bone Met) Multiple sclerotic lesions on spine, pelvis, shoulder, rib cage.

-KI167 Score of 10%: this is how fast they grow and divide. So she is borderline between low and intermediate

-Nuclear Grade 2 this is based on how much the cancer cells look like normal cells. It's not the least aggressive but not the most it's in the middle.

Pathology tells us that the cancer cells in her breast and bones are the same both Invasive Lobular Carcinoma ER+ PR+ HER2 -. So this means that when the cancer cells in the breast broke away they traveled through the blood or lymphatic system and decided to take up residency in her bones. So at this time (following the bone biopsy) it appears that the cells are the same and maybe easier to treat systemically since they haven't changed at this time.

Mom says the bone biopsy wasn't bad. You arrive early to the appointment, they do blood work and then numb the spot. She didn't feel the procedure and as soon as they brought her back to recovery (35min) she ate and was released. She said the first three days she was a little sore but nothing that Tylenol couldn't resolve. The results took about a week and they confirmed that the the one lesion in the spine that they biopsied was Invasive Lobular Carcinoma ER+. This was good news because they can now take a systemic approach to her treatment. (full body approach).

What's going on with her bones. Osteoblast is the cell that forms new bone and the Osteoclast is the cell that dissolves old bone. When working normal bones are strong.Now what is happening is the cancer cells are releasing a substance that turns on these osteoblasts and new bone is being made without breaking down the old bone first so this is why we see sclerotic lesions on the CT Scan and nuclear bone scan. So these areas are hard and the bone structure is abnormal and could break easily.

The goal for mom's treatment is to Shrink the cancer, Slow its growth, Relieve symptoms and Live longer.

In order to shrink and slow the cancer growth, we had to identify what fuels it and starve it. No chemo No surgery

Mom's breast cancer is fueled by estrogen. To starve cancer, we must stop feeding it estrogen. Hormone Therapy does just this. Mom will take a pill each day called Femara. Mom has been on Femara for four weeks. No side effects. This Hormone therapy Femara works by stopping the production of certain hormones, in mom's case estrogen, blocking hormone receptors, or substituting chemically similar agents for the active hormone which cannot be used by the tumor cell. See Estrogen is produced in postmenopausal women in their glands and from their fat this is why diet and exercise can play a huge role.

Palbociclib (Ibrance). I almost fell off my chair when Dr. JF was telling us about it. Essentially it stops the cancers cells from dividing. Here is the verbage from our prescription "The drug blocks proteins in the cell called cyclin-dependent kinase (CDK) 4 and CDK 6. In hormone positive breast cancer cells, blocking these proteins helps stop the cells from dividing to make new cells. It helps prevent the cells from moving from G1 to S cell cycle phase in the division process. This slows cancer growth." This is another type of therapy called Targeted Therapy. She takes a pill daily, three weeks on one week off. This can come with some heavy side effects and she will need to be closely monitored but this is definitely a good combo. Mom is entering her second week on Ibrance and so far so good. We have learned that with Ibrance She has had some body ache and a little nausea. What has worked for her…? In the morning she eats either oatmeal, sprouted grain raisin bread toast and a banana 30 minutes before taking the pill. This has worked no nausea. Some days she has no body pain but for the days she does she takes 2 Tylenol and an Epsom salt bath in the evening. We go back to the oncologist on Feb 2nd to have blood work to see what is going on and how her body is responding.

So what is our new normal, every two weeks we have a CBC, COMP Panel and tumor marking testing. Now Mom's numbers have doubled from the time she was diagnosed to Jan 15^th. We return on Feb 2^nd to see if this combination of medicine is working, are we looking at liver mets, or is this cancer just being pissed off and trying to fight back. Mom never had any pain or any indication that this cancer was in her body. Please remember that the pain you may feel could be a side effect and not the cancer spreading. The mind plays tricks on us especially when emotions run high.

Here are the blood work numbers that have doubled.

Alkaline Phosphates is one kind enzyme found in your body. Enzymes are proteins that help chemical reactions happen. For instance, they can break big molecules down into smaller parts, or they can help smaller molecules join together to form bigger structures. You have alkaline phosphatase throughout your body, including your in your liver, kidney, digestive system and bones. Her ALT and AST have also doubled. These are liver enzymes.

Now this is where we can't freak out or let our brains go to bad places. We know one month ago that the CT SCAN showed no Liver METS, we know from pathology that the cancer is slow growing. On the flip side cancer does not play by the rules, and each person is different. What we do know is that the combination of Femara and Ibrance is treating her whole body so no matter where these cells go the medicine has the opportunity to get them.

We believe this is in God's hands and each day we try to focus on that day only and enjoy it together. We will not let Cancer run our lives. This I believe has been the hardest thus far…finding a new normal. This community has been a blessing for my family and I will share our experiences with others in hopes that I can help others the way these ladies helped me when the initial shock of diagnosis was presented to our family.

I hope this has helped. Many Blessings to you

Hello Mica

Thank you Thank you Thank you for sharing your experience with this combination of drugs. I am so happy to read that this is working for you and that you are able to move forward as my mom says doing what she needs to do each day. It is a great relief to hear that the numbers do bounce around and that as her body adjusts to Ibrance the dosage could change and work out even better for her. So far we are on cycle 1 week 2 and all is good. I will most certainly check out the ibrance thread!

Thanks so much.Warm Wishes Melissa

AH This is great news CloudNine, glad it went well. Mom finished her 3weeks on with ibrance and she is on her off week. Her WBC has gone very low (2.3) so we are hoping that it comes back up. We see the Dr this Friday. She has been tired as of late. We are anxious to see how her body has responded to her first round of Ibrance.

Wishing you a stress free battle with pharmacy.