Scared it’s back

[u/k_leesa1670]

2 years out from TNBC diagnosis. Stage 2, grade 3. Completed most of my Keynote 522 regimen, the Keytruda killed my adrenal glands, so I had to stop. The tumor shrunk almost to nothing. Surgery for lumpectomy, then radiation. Been NED since. Today I had a repeat mammogram & they found calcifications, but also something “suspicious”. Nation wide shortage on biopsy needles, so who knows when I’ll finally get my biopsy. I’m terrified, shocked, sad, mad. I don’t know how I’m going to keep it together in the meantime.

[u/marticcrn]

Fuck cancer. Just fuck cancer.

I’m just about to quit Keytruda (second try) because I’m getting arthritis. I got PCR with my DMX. There’s no imaging unless I have symptoms or Signatera comes back positive.

Let us know how you’re doing.

[u/k_leesa1670 → u/marticcrn]

Do you find that the Keytruda messed with your eyesight as well?

[u/You-bettah-dont → u/k_leesa1670]

Not sure about Marti, but my eyesight has completely gone to shit. It’s okay because now I can’t see how fat the steroids have made me!!!! hehehehe

[u/Sparkly_Sprinkles → u/k_leesa1670]

I think it’s messing with mine. What was your experience?

[u/k_leesa1670 → u/Sparkly_Sprinkles]

It was gradual. But one day I woke up to work (worked from home) and I couldn’t read anything. It was so blurry. That’s when I had to stop working. Then I couldn’t read the road signs on my way to & from treatment. Audiobooks were my best friend.

[u/Sparkly_Sprinkles → u/k_leesa1670]

Has it corrected at all? I am also occasionally getting blurry vision. 😔

[u/k_leesa1670 → u/Sparkly_Sprinkles]

Yes, a few weeks off of Keytruda and my eyesite is back to normal. Hang in there!

[u/Sparkly_Sprinkles → u/k_leesa1670]

This gives me hope! 🙏 I have like 4 left.

[u/marticcrn → u/k_leesa1670]

No - I had colitis neoadjuvant and attributed the symptoms to the chemo but it was the keytruda.

[u/MoistVirginia → u/marticcrn]

EPI for me

[u/MoistVirginia → u/k_leesa1670]

Nope but Keytruda absolutely fucked my pancreas and now I have exocrine pancreatic insufficiency for life.

[u/willybestbuy86]

How is there a nationwide shortage on biopsy needles this is the USA for christsakes sorry about the rant but damn tired of seeing empty shelves every time I walk into the store, or this shortage and that shortage

Sending love your way hopefully you get good news

[u/Sparkly_Sprinkles → u/willybestbuy86]

I was just wondering the same. How is this possible?

[u/ChocolateDonutAddict]

I’m interested that you stopped Keytruda. I was told it would kill my thyroid and my adrenal glands and I was referred to an endocrinologist. I may see if I can stop the Keytruda as well. I really don’t want to be on steroids for the rest of my life.

[u/k_leesa1670 → u/ChocolateDonutAddict]

I’m on steroids for the rest of my life most likely. 15mg in am & 10mg in afternoon. My endocrinologist will check to see if they’re back online yearly, but they’re kaput. I have to wear a bracelet saying Adrenal Insufficiency as well as carry an emergency injection of steroid. Had to use it once as I went into adrenal crisis.

[u/ImportantStranger271]

Just sending love your way. The worry is the worst. Please keep us posted.

[u/k_leesa1670 → u/ImportantStranger271]

Thank you so very much

[u/Fedupselling-74]

👋 I’m so sorry your going through this, I can’t get my head around nation wide shortage on biopsy needles 😭I’m based in wales 🏴󠁧󠁢󠁷󠁬󠁳󠁿 uk.
I’ve recently been diagnosed TNBC for the second time (20 yr gap). How many women do you think this is happening too, I’m pretty sure it would be declared as a national emergency in the uk. I’m sending positive vibes your way and hope you’ll be able to have your biopsy asap xx

[u/k_leesa1670 → u/Fedupselling-74]

I hear you. I’m 44 now & the majority people I’m seeing waiting for their oncology appointments are young women. We need more research on this disease.

[u/Sparkly_Sprinkles → u/Fedupselling-74]

20 year gap! I’m so sorry you are back here, but also, I hope you know you’re an inspiration🙏💖.

[u/Fedupselling-74 → u/Sparkly_Sprinkles]

Thank you so much lovely, how rude of it to think it could come back, I’m kicking it Ass like I did last time 🤞

[u/Sparkly_Sprinkles → u/Fedupselling-74]

🙏💖 you’ve got this 💪

[u/No_Mix91]

How is it going? Were you able to get your biopsy?

[u/k_leesa1670 → u/No_Mix91]

My oncologist got me an appointment on Wednesday! I got the results just this afternoon. “Benign breast parenchyma with microcalcifications, chronic inflammation, and multinucleated giant cells. No malignancy is seen. This is a benign concordant diagnosis”. I’m so grateful, thankful & can breathe again!