November 2021
April 2020 – Ah, what a few months can do to perspective and the imagery of silver linings. Turns out the oral chemo drug versus bi-weekly infusions is a really good thing when there is a global pandemic going on. Xeloda arriving at my doorstep versus a bi-weekly trek into the NYC epicenter is clearly a better plan. My doctor appointments are now conducted via tele-health phone calls but I still have to go into the city for a CT Scan to see if the Xeloda is doing its job. The drive into the hospital was a delight – no traffic – and since no patient is allowed visitors during the pandemic, I have a lovely time on my own with not one other person in the waiting room. It is no loner bustling with sons, daughters, partners, spouses, friends and breast cancer patients. There are no lines for adequate coffee or saltine crackers, it is a ghost town. The results show a very slight decrease in the liver metastasis and mostly unchanged activity in my bones, though there is a slight mention that a few mets have slightly increased. My lovely oncologist who never minces words sees this as okay and that the bone scan at the beginning of May will help us understand a bit more. The side effect that I am having is mild hand and foot syndrome but I am armed with all kinds of potions and lotions (okay, really just Eucerin and Eurea cream) and gel socks, gloves and special ice packs. My bedtime routine is now epic and long. I am beginning to feel like a prima dona with all this evening prep and I have learned to appreciate the comfort of socks and birkenstocks. Again, those silver linings keep popping up. I am safe, I am not in pain, I can manage these side effects, I have my nuclear family around me, I have been 6 weeks in quarantine and I am doing okay.
January 2020 – The Avastin gave me creaky bones and sore muscles. It was a great primer on what it feels to be my mother’s age…pushing 80 now. The 6 week scan at the end of January showed only a slight increase in activity in my left iliac bone and no new liver activity BUT the primary tumor just keeps on keeping on. This slight increase with several satellite masses involved, leads us to agree that the trial is not doing nearly enough and clearly Faslodex alone should have done a bit more given its established track record. This protocol is not working well enough and so we abandon this trial ship. I loved my trial team and this change made me sad. They had become my friends in such a short time and I enjoyed all that lovely attention! So onward to the next big thing….Xeloda, an oral chemo drug that makes sense at this juncture. This is my first foray into actual chemo drugs and I am assured that if (it’s really a matter of when) this drug stops working, I will then be eligible for another promising trial that my oncologist feels would be a great fit for me BUT one has to “fail” on a chemo drug to be eligible. So it is a bit of a mind trick to hope your current drug works but also sort of wish for it to fail so that I can jump on a trial that show so much promise for onco-types like me.
November 2019 – With Thanksgiving came news that the primary tumor was not impressed with all the bi-weekly attention and infusions and bloodwork. All indicators show increased multicentric right breast cancer activity with increases in the right axillary lymphadenopathy. My bone lesions continue to behave but the liver mets are unmoved leading us to decide that I may need to go to the second phase of the trial which would, if approved, add Avastin to my protocol of atezolizumab and faslodex. This would necessitate a new biopsy of the primary tumor and that showed my tumor to have changed from 98% ER+ to 80% ER+. I remain HER2-.
October 2019 – In a weird way I am enjoying being on the trial since I feel the bi-weekly bloodwork, infusions and check-ins with the clinical trial nurse and, often, my oncologist, makes me feel that my body is getting a thorough review. In darker moments, I certainly wish that this level of care had been taken by me and my obgyn BEFORE my cancer had metastasized. I love coming into the city and make sure that my long infusion and check up days are also filled with gorgeous friends and walks around the city. I feel well and so appreciate that my infusions do not crush me like my friends dealing with full on chemo infusions. But is it working? Well the small hepatic lesions continue to be “too small for accurate characterization” but in less than a month there is slight increase in sclerotic activity in my L1 and my primary tumor in my right breast continues to be stubborn with “slight increase in size of satellite lesions.”. So is it working? I think all we can say is it isn’t hurting and we can never tell what would be changing if I wasn’t on this protocol. Welcome to my world.
September 2019 – Breast MRI shows multicentric carcinoma in the retroareolar region that now extends to the 6.00 axis, tumor itself now measures 4.4 x 3.4 x4.0 cm plus previously unseen mass that is lateral and superior to the index tumor measuring 1.9 x 0.7 x 1.4 cm. There was increased uptake found in the L3 vertebra. The trial needs some time to work we hope!
July 2019 – CT Scan of Chest/Abdomen/Pelvis showed that there was a probably cyst in the liver or mets that were too small for accurate characterization. The MORPHEUS trial requires me to have a biopsy of the primary tumor, a brain MRI (at the beginning of the trial only), a bone scan plus a CT scan of the chest, abdomen and pelvis, breast MRI every 6 weeks. The infusion of atezolizumb is every 2 weeks and the faslodex shot is once a month. My veins are good (woo hoo!) so no port is needed at this point.
July 2019 – After many consultations with my oncologists at MSK and Dana Farber, we had the following options: go on another aromatase inhibitor like abemaciclib which is an option within this class of drugs since it hits a few additional kinases (CDK1 & CDK 3) but it is tough to know if it will work until we have the new genomic testing of my primary tumor. This is to determine – possibly – what caused the Ibrance and Letrozole to fail. To date, my cancer has been slow growing and the genomic testing found that I still did not have any actionable mutations. Since the standard option of abemaciclib plus faslodex (estrogen degrader) would always be available to me, we pursued the option of a Phase 2 clinical trial MORPHEUS. The MORPHEUS is the name for a set of trials that are examining the use of immunotherapy to existing treatments for multiple types of cancers. In the first stage, there are 5 randomized treatment arms. I was randomized in stage 1 of the trial to the arm with atezolizumab plus fulvestrant. Atezolizumab is an anti-programmed death ligand (PD-L1 antibody) and what that means is it encourages your own immune system to ramp up and attack (hopefully) the cancer cells without damaging much of the rest of your body. This approach hasn’t been so successful with ‘solid’ cancers or those with low number of mutations like breast cancer. But it was a good shot to take. My June 2019 biopsy of primary tumor showed a decrease in the tumor’s Estrogen receptor to 85%, while still being HER2 negative.
June 2019 – Pet Scan (06/11/2019) shows increased uptake in right breast, now SUV 3.9 when previously it had been 2.0 with increased FDG avidity within the soft tissue. This means that the increasing tumor markers actually were indicating more cancer activity. The cancer in my right breast was not getting so much larger as retaking the territory where it existed previously and becoming more metabolically active. Still not good. Thus Pet Scan also showed possible activity in thoracic node, and confirmed activity (increased uptake) in the L3 SUV 2.2 prior 1.9, Left iliac bone increased activity SUV 3.85 prior 1.6, new activity in right sacrum SUV 3.5 previously 1.1, Right iliac bone SUV 1.7 makes it appearance to the stage of cancer activity in my body. No mention of liver activity this time. This means end of my time with Ibrance and Letrozole – you were awesome while it lasted my friends! And we begin looking at possible clinical trials at MSK and Dana Farber to determine what makes sense.
January – June 2019 – each month my tumor markers were going up, but it was thought that my tumor markers were not great indications of cancer activity or at least we were not sure. We all agree it made sense to stay with current treatment and wait to do the next scan in June 2019. Met with Dr. Ian Krop and Dr. Tari King at Dana-Farber Cancer Institute to review my case and explore the possibility of surgical removal of primary tumor and current treatment trajectory. All felt that my current treatment was appropriate and that surgery, at this time, was not indicated.
December 2018 – Pet Scan (12/11/2018) unchanged uptake in right breast though not reducing in size, no change to appearance of sclerotic lesions with L3 but now the left iliac bone is involved with minimal uptake but more concerning was the appearance of possible liver involvement that was described as possibly nothing but something to watch. Recommendation to extend the time between Pet Scans since I appear to be doing well on Ibrance and Letrozole at max dosages and no new confirmed metastasis found.
August 2018 – Pet Scan (08/14/2018) decreased uptake in retroareolar soft tissue nodule in right breast, non avid mixed lytic/sclerotic lesions consistent with treated disease where the spine mets were located. Continued treatment with Ibrance and Letrozole – this constitutes really great news.
April 2018 – Pet Scan (04/06/2018) decreased uptake in right breast mass from SUV 2.8 to SUV 1.6 and resolved uptake in the smaller nodular lesion from SUV 2.8 to SUV 0.8. No other uptake found including the unchanged lesions on L2 & L3; begin monthly Xgeva injection. Important discussion with my oncologist on whether removal of tumor in right breast was indicated but after consult with surgeon, it was recommended that surgery should wait to see if my current medication protocol could shrink the primary tumor further.
January 2018 – PET scan found decreased right breast mass from SUV 7.9 to SUV 2.8; smaller nodular lesion decreased from SUV 3.9 to SUV 2.8; resolved uptake on lesions found on L2 & L3.
September 2017 – Laparoscopic salpingo-oophorectomy; spinal biopsy of L3 confirming MBC status; begin Ibrance (palpociclib) 125 mg, Letrozole 2.5 mg (daily), Vitamin D3
August 2017 – de novo ER+ HER2-(99%, grade 2+) Metastatic Breast Cancer; invasive ductal carcinoma (IDC) was 3.9 cm, US with focal irregular hypoechoic lesion 3.5 x3.9 x 2.1 cm, axillary LN 1.5 x 1.3 x 0.7 cm; Metastases to right axilla, L2 & L3 vertebra. Genomic testing was done showing no actionable mutations at this time of diagnosis. This means I do not have any mutations that are currently being researched in the metastatic breast cancer space and so no options for a targeted treatment that matches exactly our understanding of how my cancer operates.
***Note on family history and genetic testing: I am the 4th generation female in my family (maternal side) to have BC, every female member older than myself (I am oldest female in my generation) has had BC (all at menopause or post menopause) but I am the only one to be diagnosed de novo MBC pre-menopause. Given family history, I began having mammograms at age 35, mammograms & ultrasounds at 40. I had two mammograms and ultrasounds in November 2016 after I felt my right nipple and skin irritation – but these screens came back negative. My mother has had multiple lumpectomies of Stage 1 BC on both breasts and is currently cancer free. My mother & two maternal aunts have had genetic BC testing conducted: no BRCA1-2 but VUS on the CHEK2. My genetic testing conducted through my hospital and Myriad showed the same result. My younger sisters currently reside in Canada and now get annual MRIs along with mammograms and ultrasounds.
Life with Metastatic Breast Cancer 