Roxanne's Cancer Journey

I am happy to say that my tumor markers are dropping. Here is a picture of the trajectory. This one measures CA-15-3. The CA 15-3 blood test measures the level of cancer antigen 15-3, a protein produced by normal breast cells and shed into the bloodstream by certain breast cancer tumors. Normal levels are below 30. Mine started at about 3700 when I was diagnosed, showing widespread cancer. I have been in treatment for 3.5 months and it is down over 50% to 1760. This means that the cancer cells are dying and going to sleep- going into dormany- both of which are a result of the medications I am taking. I don't really feel 50% better though- I still can't do much and have pain, but I am reading that is a result of the inflammation that my body is feeling from this battle and also from my bone holes filling in- which is like growing pain but in all of my bones- think of a broken bone healing and the pain involved. It takes lots of energy for the body to create the matrix of bone m...

Sorry I haven't posted in a couple weeks. It's been a rough couple of weeks. I had to disontinue KISQALI for 2 weeks due to very low white blood cells. Then Dan drove me to BOSTON for an FES PET Scan which is a special PET for ER+ cancer as it uses an estrogen-based tracer (instead of a glucose one). It lit up like crazy which is good in that my treatment is well matched. It is not so good in that the cancer is pretty widespread. It is bascially in ALL my bones and all my lymph nodes as well as my chest wall. It didn't light up in any organs, which is a celebration! If the cancer didn't spread to organs, the prognosis is better because my organs can stay working and handle the current and future medications. Then, upon return, I fell and broke a tendon in my right foot. It turned black and blue and I couldn't walk for a couple days but now I am hobbling around. It is a reminder I am still healing and need to be extremely careful. On aoother note, I made a delicious...

The concept is not new. We can use food as medicine to create a terrain that makes it hard for cancer to grow and thrive. It is also possible that some foods could kill some types of cancer cells. I belive this, anyway. So this week's post it to share what I have been doing in terms of diet to help my body, my terrain. Clearly, something was way off for the cancer to grow and take root. So I made changes. I never really ate processed foods or even gluten as I'm gluten sensitive. But now I am taking it to a whole new level. Every day I intermittent fast 20:4. I eat from 12 noon to 4pm and I don't eat anything the rest of the time. There is some research to support that fasting supports the organs and is a great anti-cancer too. It really isn't that hard. I am not so hungry anyway. And it is so much easier to plan and cook only one meal a day. In additon, I have a pretty strict diet that has ingredients that are very anti-cancer. Here is the list: Cruciferous veggies dai...

After I completed round 1 of KISQALI I asked the oncologists to reduce my dose from 600mg daily to 400mg daily because I watched my immune system numbers drop and was scared of what that meant for my ability to fight infections. However, both convinced me to remain on the higher dose, so I did. Well, now after round 2, my neutrophil count is in the dangerously low levels and both oncologists want me to take a total break from the KISQALI! My WBC is 1.5 and I am Grade 3 neutropenic at .74. I am fighting infections. I am totally exhausted. I nap three hours a day. I feel like I have mono. I have oral and throat thrush. I am being tested for a possible kidney infection. I have a bizare cyst or enlarged lymph node they want to do an ultrasound on. I have mouth sores. The medicine sometimes is worse than the disease. I knew early on the huge dose was too much for my body and finally I am being listened to, better late than after a potentially life threatening event. I read that Stage 4 is ...

I am officially weaned off my steroid DEXAMTHASONE!!! I have been on it for about 7 weeks for pain. I started at 2mg and tried to wean off twice in last few weeks, but today marks 48 hours off of it with no increase in pain. I am now on Tylenol only. I will take this as a minor win. I gained 14 pounds on DEXA and it totally disrupted my sleep and made me wired all day and all night. But I needed it to decrease bad bone pain and cancer soft tissue pain. My cancer numbers must be low enough now that I don't need it anymore and I am very happy to not be on it!!! DEXA is pretty strong and they use it for cancer often. The conversion to the more known steroid of prednisone is 0.75 mg Dexamethasone = 5 mg Prednisone so my starting dose was kinda high. Plus, the KISQALI increases the amount in circulation two fold. My face was getting really puffy and I am now trying to get rid of oral thrush as a result of the steroid (it lowers immune system). I'll take this little win!!! Bye, Bye, ...

My eldest daughter is back at college. I was well enough to drive there (only 10 minutes away) to bring her a few things. She wanted me there to help her make her bed and I wanted that memory for her. It's funny now I think about making memories a lot now that time has a different value to me. I will be spending time with my other daughter this weekend- maybe going for a walk and out to breakfast. People who I love matter so much to me; they did before and it is just amplified now. I feel like time is so undervalued- I definately took it for granted before this diagnosis. And now that I am grieving what might be lost- in terms of days I have here- I want to be sure that I spend every day doing something that I love or spending some time each day with someone I love.

Finally some good news, because the ZOMETA gave me the worst flu of my life. Here is the news: After three weeks on Kisqali (round 1) and 6 weeks of Anastrozole there is a downward trend in my CA 27-29 tumor marker which is a highly encouraging early sign. YIPPPEEE! In the context of cancer treatment, a rapid drop indicates that the medication is actively working against the cancer cells. However, oncologists generally view this as a positive first step rather than a definitive final result, as tumor markers can fluctuate early on. Why a drop is a great start: The combination of Kisqali (a CDK4/6 inhibitor) and anastrozole (an aromatase inhibitor) is designed to halt the growth of hormone-receptor-positive breast cancer. Seeing your numbers fall so quickly suggests the tumors are sensitive to this combination. Markers are only one piece of the puzzle: While a declining CA 27-29 is a great indicator, oncologists do not rely on blood tests alone. I am working hard with my medical team...

This morning I had my first ZOMETA IV! Zometa (zoledronic acid) is an intravenous medication given to patients to strengthen bones and prevent complications when cancer spreads to the bone. It belongs to a drug group called bisphosphonates. It targets osteoclasts, which are cells in the body that break down and destroy bone tissue. By slowing down these cells, Zometa helps keep bones dense and stable.Reduces fractures: Lowers the risk of painful bone breaks.Relieves pain: Helps ease bone discomfort caused by the cancer.Delays complications: Decreases the need for radiation or surgery on affected bones. Delivered directly into a vein through an IV drip.Time: Takes at least 15 minutes per session. Schedule: Often given once every 3 to 4 weeks, though doctors sometimes space treatments out to every 12 weeks after the first year. My doctor ordered it every 4 weeks because I have exetensive (hundreds of subcentimeter) bone lesions which makes my bones hurt and brittle. In 6-12 months the...

Well yesterday marked my third visit to the ER since diagnosis. Lots o'fun! We left at 10:30 am and got home at 10:30pm! Dan took me because I have been experiencing abdominal bloating for the past 3 days that pushes up to my ribcage, making it hard to breathe. They ran a CBC anc CMP and gave me a CT scan of my chest and abdominal cavity. My abdomen did show mild inflammation Ascites, or peritoneal effusion, which is a buildup of excess fluid in the abdomen, and my right kidney showed some issues so they put me on antibiotics as the urine sample is being tested for infection. If it is a UTI I would be SOOOOO HAPPPY! That would be a reason for my distenstion that is not cancer. Otherwise, it could be cancer spread to my abdomen which is not good at all. This is all so overwhelming and scary. I just want to know where the cancer is, at least so I can visualize it in my head shrinking and dying. My doctor is yet to approve the FES PET which would light up and show where it is. I may...

Today I have an appointment with a palliative care doctor. My nurse recommended it. As the date grew nearer I started wondering what exactly to expect at this appointment. My mind immediately went to HOSPIC CARE like thinking terminal patients needed morphine patches. That thought made me sad and depressed because I don't feel like that's me. I am at home, still living, albeit in pain, and I have years and hopefully decades left to live. When I looked up the definition, here's what GOOGLE says," Palliative care is specialized medical care that focuses on giving relief from the symptoms, pain, and stress of a serious illness. " "Purpose and GoalsThe main goal is to improve the quality of life for both the patient and their family. It treats the whole person, not just the disease. It helps with:Physical signs like pain, nausea, fatigue, and trouble sleeping.Emotional and mental stress like anxiety and depression.Matching your treatment choices with your perso...

Yesterday my parents took me out for a few errands. I wanted to stop to buy a few perennials to plant. Flowers and trees and green space makes me happy and now, more than ever, I am very aware of what brings me joy. It is so important to have a little joy inside each day or night. That's why we are here- to experience joy and to give joy. I bought a couple cone flowers for my back garden. If I feel up to it I'll plant them this weekend and will show after pictures. My face is a bit puffy from the strong steroids and I hope to wean off them in 6 weeks or so when I expect to feel somewhat better (when the lesions start shrinking and laying off my nerves). Right now, my colleagues are thinking about heading back to teaching and I am going to miss the start of the school year which is too bad because I like my job. But I hope to return in the spring, after the cold season is over, as I can't risk catching something with the low WBC count from the Kisqali drug.I hope my collea...

I am on DAY 2 of KISQALI (Ribociclib! Yesterday I took my first three pills and this morning I took my second three pills. So far, no side effects, but it is early. I definately feel how the steroid is ramped up a bit as this drug increases the steroid amount in my system. That kept me up last night. But I am taking 1-2 naps during the day so all in all, I get about 6-7 hours per day/night. Once I feel better I will wean off the steroids entirely so that will help my system relax and hopefully restore my sleep. I do believe I am on the mend. I feel a bit better each week. These medications are a true modern miracle! KISQALI is a CDK4/6 inhibitor: It works by forcing cancer cells into a permanent sleep state known as cellular senescence. While these senescent cells cannot divide, they remain alive but in a dormant state. I am hoping the cancer is very sensitive to them and that I can stay on them for 5 years before having to switch medications to suppress their potential awakening. Th...

"CA 15-3 (Cancer Antigen 15-3) is a serum tumor marker primarily used to monitor breast cancer. It is a protein naturally produced by breast cells, but cancerous breast tumors shed higher amounts of it into the bloodstream. Primary Uses: Monitoring Treatment: Doctors track whether levels decrease over time to confirm if a breast cancer therapy is working.Checking for Recurrence: Rising trends during follow-up appointments can signal that the cancer has returned or spread.Key Reference RangesNormal Range: A standard healthy result is typically less than or equal to 30 U/mL (units per milliliter)." Mine is 3,600. Being a person who likes data (I use it in my job a lot), this number really validates how crappy I feel. And because I look OK on the outside, I will reference it with doctors who don't understand the level of pain I am in. Not wanting to have a pity party for myself, but I need to vent; the last 3 months were very painful. When people ask me what it feels like...

This is my ESTROGEN blocker cancer drug #1. I take it every morning and will as long as it works. I am on day 8! The drug works by blocking my ESTROGEN receptors which eventually starves the cancer cells and by week 2 they begin to die. Next week I will start ribociclib drug which is going to work with the Anastrozole to further kill and then put to sleep the cancer cells that remain. Then the goal is to stay on these 2 drugs as long as they work, keeping the remaining cancer cells into a deep sleep state. My doctors will monitor me with Tumor blood markers and imaging to see if my tumors shrink and to see exactly when this FIRST COURSE of therapy stops working. The average Met HR+ Breast Cancer patient gets about 2.5 years on this regimen before having to start a different treatment to deal with the awoken, more resilient cancer cells. And this game goes on and on; staying two steps ahead is how I can extend my life and I plan to do just that. Statistics online are old, and include...

Hello friends, I am so lucky to have Daniel in my life. We met about 7 years ago and it really was love at first sight. I think the most romantic thing he said to me was, "I love you so much that if I ever had to give you an enema and wipe your butt, I would do it with a smile." LOL! Was funny then, right? Every morning I wake up to breakfast and tea and a kiss. He makes and leaves me a lunch in the fridge. Here is today's: Dan rubs my feet at night, makes sure I get sunshine everyday, and tucks me in at bedtime. He listens to me with intent and affection, holds me, and loves me HARD (with intensity). We have had so many fun adventures together, locally and afar. Here is a photo from a trip to Arizona: Dan was raised well and he knows how to treat a lady; he is a gentleman. More importantly, he is my anchor and rock. I am so grateful to have him in my life and I pray I can have many more years with him.

Hello friends and Family, I created this BLOG to share information and to let you into my cancer journey as it will help me to describe my experiences, thoughts, emotions, and progress and it may help you to know what I'm going through. Two weeks ago I got my hip bone biopsy report back. (Yeah- and that procedure was a whole lot of fun, lol!). I didn't expect it to be Metastatic Breast Cancer Stage 4. I thought maybe the reason why my bones are all getting eaten up was maybe an infection or a rare metabolic bone disorder. I never thought I'd get breast cancer because I HAVE NO BREASTS! I got them removed via masectomy 11 years ago prophetically after a DSIS diagnoses and extensive genetic testing. But life is wildly unpredictable I guess. The cancer I have now is not ductal, but lobular. So it was likely hiding out in my tissues, laying dormant or growing slowly. Technically, I can say I had two kinds of breast cancer!? Did I win the BREAST CANCER LOTTERY or what? Anywa...