Best Of

@newfmamainoregon

I just re-read your bone / joints pain situation. I’ve noticed America seems to go the zometa route easier than where I live …
If it’s horrid again , you might ask to switch to X-Geva ? Those are monthly under the skin injections and not a 3-monthly infusion.
The comparison trials show no difference.
Realising everybody is different, I have no side effects from that. I have no part and no decent veins so these injections are made for me ☺️☺️
Just a thought.

it’s been quiet here ??

just popped in to share this combo is still working after 6 years and a bit. Results latest bonescan , ct and the mammo panini press 👍
Yes I live on sugar and coffee so do eat that icecream if you want one. Don’t let the internet talk you into the « sugar feeds cancer , go on this or that miserable diet »

I’m taking a break off Kisqali for a month again like last year to go on a months pilgrimage. Would never give up the letrozole though. I feel that one is doing the heavy lifting in my treatment.

Love to all 😉

@lucysgirl Wow! You have had quite the cancer journey. But, so glad that you are a long-term survivor. That gives me hope.

As to your question regarding the Signatera test… I believe it is used primarily in early stage breast cancer on high risk patients—those who are likely to have a recurrence. My doctor first suggested it after my PET showed NED after only a few treatments. And, possibly, because I wished to take a "treatment holiday" after being NED. My second Signatera showed a low positive. (See my signature for all of my tests and history). Long story short, I believe it is used primarily in patients whose imaging shows no signs of active disease, since it is looking for traces of the cancer tumor's DNA in the blood. My doctor and I agreed to do the test with each PET scan to see if it trends, which it seems to for me. (It doesn't for everyone). Once again I am NED on my PET and have a Negative Signatera test. However, if I showed active disease on every PET scan, there wouldn't be much point in the Signatera test since it is used to detect cancer "before" it's seen on imaging. Anyway, that's what I believe is the case. You may wish to ask your doctor if it is something that would be beneficial to you.

Good luck and I wish you well!

Hugs, Pam 💗

2001 - divorced after 27 years and moved to Florida home built in 2000 where I worked.

ER PR +
December 2003 - mammogram. Told nothing concerning. Reviewed doctor notes after diagnosis in 2004 and there were “calcifications but nothing to suggest malignancy.” I wasn’t told this by radiologist.

July 2004 - 53 years old. 2.5 cm tumor right breast discovered on self exam. Used estrogen / progesterone patch for 1.5 years which was immediately stopped by surgeon. Lumpectomy and brachytherapy (not a picnic but shorter treatment and I needed to get back to work). 4 lymph nodes removed. Opted out of chemo even though recommended by surgeon and oncologist. Started with eximestane and Celebrex in clinical trial. Celebrex taken off market so switched to tamoxifen. Used vagifem tablets for vaginal dryness for a few years.

2006 - 7 mm tumor on tail of right breast. Lumpectomy (2x because margin not clean), chemo, 8 treatments with IV without hair loss, beam radiation for a couple of weeks, twice a day with lower dose.

Followed by oncologist and CT scans every six months at major cancer center.

Mom passed away from Alzheimer’s.

2006 - moved from Florida back to Midwest. Built new home in 2007. Started new job. Switched jobs in 2008 and commuted 60 miles one way and traveled several times a year for meetings.

2010 - tamoxifen stopped by oncologist (dismissed). No medication.

Dad passed away from old age at 92.

Nov 2012 - son had serious accident in NYC, hospitalized for eight months, transferred to Midwest after 1.5 months in NY, and moved home on HCBS waiver in August 2013. Lots of trips to NY and Mayo Clinic, and rehab facility. Complex and stressful time.

Dec 2014- self exam-nipple pink with erythema and tenderness. Mammogram and ultrasound. Radiologist diagnosis was sebaceous cyst. Surgeon (new) did not biopsy, and I did not see oncologist on that visit. Big mistake!

July 2015 - self exam-skin puckering and orange peel look on entire underside of breast with oozing from lumpectomy scar at bottom breast crease. Mammogram, ultrasound, biopsies (cancer), fine needle aspiration of enlarged distant lymph node (adenocarcinoma) left side, lymphadenopathy in lungs on left, mastectomy, heavy duty chemo with loss of all hair). Tumor encompassed 10 cm with skin invasion and Grade III. (That’s some cyst!) Still working in fairly stressful job. Led board retreat in another state 2 weeks after mastectomy and continued as CEO with lots of events and responsibilities and public meetings. Wore caps, wigs, and “hats with hair.”

Letrozole for 5 years max with 3-6 month CT scans (with contrast- meaning IV) and oncologist/surgeon appointments.

2016 - retired, but worked part time until 70, built accessible home with apartment for disabled son in 2020-21, got through COVID, and switched to local oncologist in 2019 at major cancer center. Continuous advocacy for son, insurance company battles, caregiver management, etc. Stuck at home because I was evening and overnight caregiver for several years until 24/7 care was authorized.

2020 - CT and MRI showed hepatic metastasis with 1 cm largest tumor and 7 mm Mets on spine. Stopped letrozole. Switched to IBRANCE, Xgeva (for bones), and monthly fulvestrant injections and blood draws. Switched to Verzenio 100 mg because of abnormal liver enzymes and eventually to 50 mg twice a day.

CT scans and oncologist visits every three months that continue to this day.

2021 - osteonecrosis of the jaw on left lower area which is side effect of Xgeva. Stopped Xgeva. Doctor consults, antibiotics for 2 months, and ended up seeing oral surgeon monthly for 8 months who eventually was able to pull out dead bone in two pieces.

2022 - I was cleaning a crab leg during a visit from my daughter at thanksgiving when my left hand was poked. Not sure if this was the cause, but very shortly thereafter I was stricken with lymphedema in my right arm after 18 years! Lymphedema is no fun. It is time consuming to treat, a chronic condition, and weakens the arm. One must wear a sleeve almost 24 hours a day and visit a PT regularly for treatment and sleeve replacements. I can still use my arm for gardening, reaching and doing crafts, but forget bowling, golfing, or lifting heavy objects. I sometimes think it is worse than cancer.

2025 - it’s been a long journey. I’ve had great support from medical team, family and friends and try to live every day in peace. Today, my son’s care is well established, although it still seems to be a moving target, especially now. I find joy in gardening, being there for those who need help, and going through the motions of my treatment, not burdening others with my situation or thinking about it very much. My oldest brother and sister in law have been particularly kind and supportive for which I am immensely grateful.

I’m so happy to be alive today after 21 years and 10 years MBC. I find myself thinking about recurrence now since I’ve been on fulvestrant and a CDK/4 inhibitor for 57 months. The hepatic tumor has shrunk (as did the lymph node and lymphadenopathy after chemo), so I’m hopeful. My lungs are damaged from surgery, cancer and radiation. I was athletic all my life, so it’s tough to get winded just walking up a slight incline from my garden. I was unable to have reconstruction because of skin involvement and it’s not fun having to wear special bras and a prosthesis which I have to maintain. And the lymphedema sleeves and continuous treatment is not fun. I hate the monthly blood draws and IVs every three months. I had an IV infiltration when contrast was given and that hurt so much I was in tears.

This summary of my experience with breast cancer is merely a summary. There are many more intricacies to this journey, and I congratulate and love everyone on this page who is battling this along side me.

I do miss my beautiful cleavage, thicker hair, and the sexuality I had before having all the estrogen sucked out of me. But, I’m alive and here to help my son who is suffering so much more than me. Thank you for reading this. I hope it sheds a bright light on the fact that MBS is survivable and definitely makes one more alive and definitely stronger.

@livinglifenow thanks for the info. I will ask my oncologist about the signatera. I still have scattered hepatic metastasis and one tumor that has shrunk to .5 cm and a small Mets of 7 mm on spine. I guess I’m not at NED yet. I get CT scans every 3 months with contrast. I had an MRI in 2020 to definitively diagnose liver metastasis. I’ve had one PET scan and bone scan several years ago. Blood work is always abnormal, although normal for me-ha! I couldn’t believe I metastasized again in 2020. The 2015 could have been avoided if I had the right diagnosis when I first noticed my breast seemed different. The treatment was brutal. It’s nice to come here periodically as most people don’t understand what it’s like to be living with MBC. Thanks, again. Love and hugs from me to you and continued good health and peace. Mary

After persistently telling my Oncologist I was feeling some activity in my left breast, where my tumours were found at metastatis in 2020, I opted to get a breast surgeon to give me a referral for a mammogram and Ultrasound. I was right coz they discovered a 0.5cm lesion. Upon further investigation via an MRI, three more wre seen, in the same breast, plus the original 3 metastases lesions originally seen in the liver, and which PET-SCANS of 2024, and April 2025 did not see. So I guess a biopsy is next. I'll know for sure when I discuss this outcome with the Oncologist plus a second opinion.

The moral of my story......always follow your gut instinct. And if the doctor of whatever specialisation isn't listening, go to someone who will listen. Having said that, I really wonder if doctors ever stop to listen to their patients?? Do they know how to listen when the patient, the owner of the body they are treating, actually opens their mouth to speak? Is there any part of their training that teaches them to listen? Or do they all have tunnel vision? Too often, they outrightly dismiss a development that cannot be explained by their book learning or personal experience with other patients. FYI, im good, I'm moving on to the next treatment step. I've no anger because this happens anyway. Medications do stop being effective at some point. Anyone want to comment?

Will update you