I’ve had another scan. Two actually. My world was rocked a little, but I’ve been searching for answers, I’ve been still, and I’ve kept living my life.
Turns out the new chemo I’ve been on has kept the cancer away from the brain, the lungs, and put the bulk of the cancer in the bones, breast, liver and lymph nodes to sleep.
However, and there is always a however with me it seems… there is a new enhanced lesion in the liver. My oncologist calls it “The rogue outlier”. I have grabbed onto that name, and my kids have understood it all. Huge Star Wars fans here. I’ve even brought their Star Wars toys to chemo.
I spent Christmas Eve in the hospital getting chemo. New Year’s Eve too. But I’m grateful for my nurses, and we laugh at my tik toks and props that I bring with me. It’s hard mentally and emotionally going there, as many are very sick and sleeping. I close my curtains and dance to keep myself occupied, plus I’m lonely. My husband hasn’t been with me to an appointment now in almost a year.
In one of the support groups, a newly diagnosed woman was nervous.
She asked me to explain my treatment history, as four years out seemed impossible to her thanks to doctor google and cancer muggles.
“Oh, my aunt had that. She died in two years. Be strong!”
I remember pouring over the cancer group stories lookin for hope. Some would share and not even realize the hope they gave to others.
I’m sharing here as I now have even more newly diagnosed women that have been sent to me recently.
Here it is…
Stage four denovo ER/PR+ HER2- with one met to sacrum at a major hospital in NYC.. That oncologist said I had weeks or months, maybe a year or two.
Went to stonybrook.
Ibrance which is a targeted CDK4/6 therapy with lupron injections for hormonal therapy, and soon switched to zoladex.
Pushed into early menopause.
Achieved NEAD in five months
Five months later appendix acted up and need laparoscopic appendectomy
Cancer woke up two months later
Went into a clinical trial.
Then had a spot in the liver
Port was inserted into chest for infusions.
Treated within taxol/carboplatin and the liver exploded with mets
Had liver biopsy
Went to a major cancer center in Boston to see specialist in genetic issue which was discovered through genetic testing for mutations. She said “You do know how this is going to end, don’t you?”
Stayed with my stony Brook oncologist
Blew through the following treatments.
Everolimus with tamoxifen
Did adriomycin “red devil”
Then switched to doxil
Had a chemo overdose/reaction with upsets down throat and in mouth and rash all over the body and was hospitalized again. Unsure if it was Stephen Johnson syndrome and had a biopsy done in my thigh.
Just an overdose and reaction.
Also was doing xgeva for bones and also switched from zoladex injection with coils in stomach to two faslodex injections in muscles in lower back/upper buttocks.
The pandemic hit and I asked for them to test her2 to see if cancer flipped.
The test came back that I was now her2+.
Did Herceptin and perjeta. Kept getting worse.
Then Navelbine was added.
Switched from xgeva injections to Zometa infusions for hypercalcemia.
Ended up with mets out of control in bones causing severe calcium issue and was hospitalized twice in two weeks, and second was for over a week. They said if they didn’t get it under control I would die from that.
Did adriamycin again.
They said I had more adriamycin than any other patient they know and can’t believe I’m still walking.
I asked for a bone biopsy as that was the biggest issue. The her2 was actually only slightly positive.
We switched to a new therapy that was just approved by FDA, Enhertu.
We then got a message that the initial result from the beginning of covid with her2 flip could have been wrong as the lab admitted they used an expired testing agent.
(I could have been on the wrong chemo with Herceptin and perjeta…)
I was relieved I had the bone biopsy done recently which showed there was some her2+.
We retested and now the her2 is in regular range which shows the chemo is working.
Latest scan showed most of cancer is under control except a new outlier in the liver that lit up.
Not sure if it has switched again and is resistant to this chemo or if that area of the liver has issues absorbing the chemo.
Hence the SBRT we are now looking at, but insurance has to cover.
I am considered oligoprogressive and insurance may say there is no benefit to outcome surgical and not enough data to show it is going to be good.
However, I am a clinical trial of one.
I have never missed work and worked through all treatments.
My life has value.
I plan on continuing to go for years and years.
Told her to learn as much as she can about the cancer, even if it’s scary.
It’s their job, it’s her life.
They work for HER.
She is the CEO of “Save my Ass, Inc.” and gets to decide who she is hiring to sit at her conference room table.
I also use chinese herbs and supplements, breathe, was fanatic with diet but now just try to make healthier choices, organic, juice, still eat meat. Try to move more.
Believe and pray to Jesus.
He is my secret keeper and has a great story for me.
That’s my story so far.
Here’s to hope and research carrying me on for years and years.
In Jesus’s name, amen.
3 thoughts on “That Rogue Outlier”
Jesus has you in his arms safe and sound. You are one of his favorites 🙏🏻❤️ Breathe and be at peace and kind to yourself. You are a very special woman and my hero 😉😘
Love and hugs,
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Thank you for all your posts! I am so glad your meds are mostly working. I am 2.5 years in and had 4 progression scans in 2020. Blah. Hearing all you’ve been through and still working and raising your beautiful kids gives me hope that I can continue to do the same!
Much love from MN.
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You can and you will! More research is coming every day!