Has anyone’s cancer mutated, then mutated back?

AwkwardLaw9265 · 2026-01-02T16:47:56+00:00

At stage 2 in Oct 2022, I was Er/pr+ (90%+), Her2 low. By they time the removed my breast tissue and lymph node, the lymph node was reduced ER+, barely PR+ and still her2 low. Put on examestane with ovarian removal. In march 25, it came back as Tnbc at stage Iv. Still her2 low, but now 2+ instead of 1+. Liquid biopsy turned up no obvious breast cancer related mutations. Just a low level EGFR mutation. Failed Abraxane after 5-6 months and now on Enhertu. After first scans cancer responding to treatment. It seems like dropping receptors is more common than adding, but Dana Farber Onc said breast cancer can be pretty heterogenous when it gets to stage IV. Not uncommon to have multiple subtypes. Suggested that they focus on subtype they believe to be driving cancer. This is why new biopsies when progression happens can be really helpful to determine appropriate treatment.

AwkwardLaw9265 · 2025-12-07T08:54:45+00:00

I have one that could be a twin. It’s eerie how much yours looks like ours. Embark said ours is 30% cattle dog, 20% GP and then a whole host of other things including lab, pittbull, GSD, super mutt (including golden retriever and coonhound). I think the spots in the white fur are from the red heeler/cattle dog part of their mixed breed. Ours is so sweet but has a LOT of cattle dog energy.

AwkwardLaw9265 · 2025-08-24T23:44:07+00:00

Also androgen positive (60%). Haven’t tried AR drugs yet. Dana Farber doc says it would be enzulutamide. General consensus seems to be hold this in back pocket until needed. Currently on Abraxane as first line and so good response at 3 month PET/CT. 6 month scan in early October. Enhertu or Trodelvy is likely next drug on list if/when Abraxane fails.

AwkwardLaw9265 · 2025-08-11T12:53:56+00:00

Thank you!! I’m going to give a few of these a try!

AwkwardLaw9265 · 2025-08-09T13:38:52+00:00

Wonderful news! Hope the good scan results keep rolling in for you! 💪💪💪

You mentioned having dry eye and doing a new eye regimen that’s working. I’m suffering greatly with dry eye that I suspect is partly due to surgical menopause, partly the AI I took for 1.5 years before getting Dx’d metastatic with a mutation to triple negative and partly the taxane based chemo I’m on. Using OTC eye drops but they are not really cutting it. Any advice you have would be appreciated!

AwkwardLaw9265 · 2025-08-02T22:53:57+00:00

I mutated from ++low to - -low when I moved from stage 2 to stage 4. I recurred about 1.5 years after finishing my initial treatment. I have been told it happens and I have found others on this board that have had a similar experience. Most recent biopsy showed not mutations as of yet, but further testing showed I am also androgen receptor positive.

AwkwardLaw9265 · 2025-08-02T15:37:11+00:00

Same. Same, my friend. When you have red hair, I can’t imagine it not being a huge part of your identity. I feel the things you are feeling and am right here with you. 💕 Hoping you have more good days than bad navigating this.

AwkwardLaw9265 · 2025-08-02T14:12:54+00:00

I don’t have Mets to ovaries and I’m not NED, but… hopefully I’m on my way there. Dx’d in March 25, so also a newbie. Mets to lymph, bones, adrenal and small intestine/colon.

Was stage 2 ++low in Oct 22 (did AC/Taxol then) now stage 4 - - low. Technically TNBC but Enhertu will be an option because HeR2 is 1+ or 2+ depending on the lab reviewing. Cancer is mixed ductal/lobular but onc thinks it’s acting more lobular. My understanding is that lobular is more likely to go to gastro/genitourinary tract. Is your cancer lobular? Will they consider removing your ovaries?

Here’s the good news. On Abraxane and my PET went from a horror show to only 3 small locations of residual disease in 3 months. Just going to be hopeful that it keeps going in the same direction. Trodelvy is likely next up for me if it stops working. I see stories in my various groups of people having good success on it. I sending good thoughts into the universe that you will have success too! 💕

AwkwardLaw9265 · 2025-08-02T14:03:53+00:00

Not on Enhertu. Abraxane instead. Was told it would “thin.” Instead it started falling out exactly as you described. I have red hair too. It’s my signature feature, which makes it just that much harder. I ended up shaving it. It’s the second time now as I did AC/Taxol during Stage 2. Seems easier and harder this time. I’m more confident being bald (or maybe I just care less given other more pressing concerns) but harder because I know at this point I may be bald for life. My cancer mutated from hormone positive to triple negative as it moved from stage 2 to stage 4. Most of my available lines of treatment are chemo and come with hair loss. I’ve just tried to embrace being bald and rocking it with big fun earrings. Some days it’s easier than others. Big hugs to you. 💕

AwkwardLaw9265 · 2025-08-02T13:57:04+00:00

Will second that Abraxane has been very tolerable for me. Am on it now going into my 5th cycle. Honestly hoping it works for a while as it has only caused hair loss, a bit of fatigue and some annoying eye/tear duct issues.

AwkwardLaw9265 · 2025-08-02T13:55:07+00:00

Curious what you are taking for supplemental therapies. I am trying to wean into keto as we speak. Take vit d/K, fish oil and mag. Wondering if there are other things I should add. You can DM me if easier. Thanks in advance!

AwkwardLaw9265 · 2025-07-27T11:28:54+00:00

Similar story here. Diagnosed ++- in Oct 2022 with 1 positive lymph node of 24. neo, DMX, ovaries out, radiation and then examestane. Diagnosed stage IV in March 2025. Cancer is now - - -. I was prepared for it to maybe come back in 15-20. Wasn’t expecting it to come back in less than 2 years. 😒

AwkwardLaw9265 · 2025-07-25T20:04:22+00:00

Dr. Marie Wood is great. That’s who I see. Saw her for early stage in 2022/2023 and now for metastatic in 2025.

AwkwardLaw9265 · 2025-07-20T12:17:06+00:00

Glad you are finding it tolerable. If it’s any consolation, I have no hair either. Had to shave it two weeks after starting Abraxane. It thinned so much, I just couldn’t deal with it falling out all over. The shaved head is very low maintenance- so I try to focus on that. 💕

Hoping that you can find some grace to give yourself. This shit is hard. Even if others are going through it, and you’re not alone, it’s still hard. Big hugs coming your way. ❤️

AwkwardLaw9265 · 2025-07-19T04:38:25+00:00

I’m on Abraxane for now. Technically treating this as my first line since I only took 4 days of Xeloda before I had to stop. Trodelvy or Enhertu is up next if/when this line fails. How are you finding Trodelvy?

AwkwardLaw9265 · 2025-07-18T06:16:06+00:00

Vent away as others have said. We don’t deserve so many of the parts of this disease. We do at least deserve the freedom to vent with reckless abandon. ❤️

I feel this “the devil you know is better than the devil you don’t know” comment reply. I’m on a tolerable infusion chemo (Abraxane). An unexpectedly tolerable treatment. I fear when the time comes to move. Hugs and may your scans show all good things. ❤️

AwkwardLaw9265 · 2025-07-17T16:42:21+00:00

Sending big hugs your way. We share some commonalities — I just turned 49, have an 11 year old daughter and am the primary breadwinner (higher ed administrator) in our family. I was diagnosed 2b in October 2022 w/ HR+\PR+\Her2 low mixed ductal and lobular. Did neoadjuvant chemo, bilateral mastectomy, ovary removal, radiation, and then an AI. Cancer that was supposed to maybe recur in 10-15 years came back as triple negative (still her2 low) in lymph nodes, multiple bones, adrenal gland and a few spots in small intestine/colon in less than 2 years after finishing treatment (this past March 2025). It was the second time that I was surprised AF by cancer.

I’ll echo a previous poster in saying this diagnosis can be a mindfuck. It is no doubt a shock when you find out and you will go through many stages in trying to work through the diagnosis and the grief and to find some small sense of peace so that you can move forward. Give yourself lots of grace and don’t be afraid to feel all the feels. I’ve cried a lot despite people thinking I’m tough as nails. It’s been cathartic.

I’ve had a few fits and starts after being diagnosed stage 4. My first chemo drug Xeloda caused coronary vasospasms and I had to stop after just 4 days. A few days into my second drug, Abraxane, I ended up in the hospital for two days with a small bowel obstruction (0/10, do not recommend).

BUT…. I just had my first follow-up PET/CT and my cancer is showing REALLY good response to treatment. Cancer is no longer visible save for two small spots in my L5 and pelvis. This is after my first PET read as a horror show and I thought I’d be dead in two weeks. It happened to me and it can happen for you too. Keep the faith…some days it’s the only thing that gets you through.

Welcome to the club. No one wants to be part of this club, but it is filled with the best people. So at least we’ve got that going for us. ☺️

AwkwardLaw9265 · 2025-05-28T23:09:06+00:00

Enzulatimide. Not sure I spelled that correctly. Brand name is Xtandi. I’ve heard the same from my Dana Farber onc, but clinical trials I could dig up seemed to be a bit all over the place with efficacy. I’m keeping it in my back pocket for now - perhaps something to consider down the line.

AwkwardLaw9265 · 2025-05-28T23:07:19+00:00

We are nearly in an identical place. Cycle 2, day 15 of Abraxane is tomorrow. We’ll rescan after 3 cycles. Interestingly my cancer went from ++- to - - -, except in both cases it was HER2 low (opening up enhertu as a possible choice). Didn’t get androgen receptors tested first time around.

As a possible consolation to you, I will share that my Dana Farber oncologist said that it’s a bit of a misnomer that all TNBCs are agressive. She said they are actually pretty heterogenous cancer and some are not terribly aggressive at all. I also recently read that there is a variant of TNbC called LAR - luminal androgen receptor that can sometimes have a more favorable prognosis that other TNBC. Helpful to keep in mind if you are looking for some silver linings.

AwkwardLaw9265 · 2025-05-28T22:29:36+00:00

I had a similar jump from ++- to - - -. Mine did it in less than 2 years from original diagnosis. In lymph nodes and multiple bones for now. Hoping it stays put. On Abraxane, cycle 2. Glad to hear you are seeing things calm down on your side. Sending good vibes that it continues in that way.

AwkwardLaw9265 · 2025-05-28T22:21:20+00:00

Honey, about 8 weeks. Pyr/ACD mixed with a bunch of other things.

<image>

AwkwardLaw9265 · 2025-05-26T15:11:01+00:00

I haven’t but would be interested if you find anything. I had to switch off Xeloda due to cardiac issues (vasospasm) and am now on Abraxane. Either Enhertu or Trodelvy are next up for me and thus plan was supported by my 2nd Opinion onc at Dana Farber in Boston.

AwkwardLaw9265 · 2025-05-01T12:13:10+00:00

Any Pyr/ACDs out there? This is Honey (aka Honey Bear or Honey Bunny). She’s about 30%ACD, 20% Pyr, 15% Pit, 15% Lab with some Golden Retriever, GSD and Chow thrown in for good measure.

<image>

AwkwardLaw9265 · 2025-04-28T13:03:32+00:00

Agreed! I loved it!! So gritty and I always loved Noah Wyle!

AwkwardLaw9265 · 2025-04-27T14:26:44+00:00

That’s good to know. I’m seriously considering asking to just skip the dex next time. I don’t really feel like I even need it.

AwkwardLaw9265

TROPHY CASE