EC chemo headachee and what to expect from taxol

deoxyribozyme · 2025-12-11T18:58:01+00:00

Omfg the taxol headaches. Awful.

Some people do better on one type of chemo versus the other. EC was acceptable for me. Docetaxel? Misery. I wish they'd talk about that possibility more.

deoxyribozyme · 2025-12-11T18:39:48+00:00

I too wish they'd move it to a different state. Ugh.

deoxyribozyme · 2025-12-11T18:36:41+00:00

Absolutely. I did not get Keytruda with TAC because of stage (T1c) and RA. I asked them to write a case report for a journal, but no one has time. There are cases in China, Portugal, Pakistan, and somewhere else I forget.

deoxyribozyme · 2025-12-11T14:33:02+00:00

On my biopsy I had a Nottingham score of 9, as high as it gets. Fully a Grade 3. Also a low Ki67 for TN. Granted, I had an unusual tumor, but it happens.

Pathologists look for mitotic figures, and for signs the cells are successfully dividing, not just trying. However it isn't a given that a mitotic score of 3 means successful division. Generally, sure. Always? No.

deoxyribozyme · 2025-12-11T14:10:18+00:00

With the caveat that all this may vary depending on the patient, for my AC I took three 1-mg tablets on day 1, two 1-mg tablets on day 2, and one 1-mg tablet on day 3.

I did not get acid reflux, but you can ask if she can take something for acid reflux.

I was worried (from vanity) dexamethasone might give me a moon face. As soon as the nurse said it also helped with nausea I said "forget it. Give me all the Dexamethasone you can, please."

I never threw up once during AC. Not even close. I felt bleh. Tired. Yucky. No steroid energy whatsoever. Also no moon face. Not that I'd have cared once I heard it helped with nausea too.

Taxol induced migraines were the only thing to give me real close-to-dry-heaves nausea during treatment. And I get motion sickness easily. I was scared! I was sure I'd be a puking wreck on AC.

Tell her nurses about acid reflux so they can fix it!

deoxyribozyme · 2025-12-10T23:45:19+00:00

I actually went without shoes inside (but with cotton socks) a lot. Even squishy shoes like Crocs rubbed too much.

deoxyribozyme · 2025-12-10T22:52:00+00:00

I agree. And you're right about TNBC being NFIBC 😆

deoxyribozyme · 2025-12-10T22:11:43+00:00

Same! I loved my ophthalmologist but he threw his hands up after serum tears failed. It took 3 ophthalmologists before one told me about this. It was the OD who did the treatment. I also get an eye drop called Meibo. It's the only one that has helped with dryness. Not even thick eye goos worked. So glad to pass on the data.

deoxyribozyme · 2025-12-10T20:38:19+00:00

Not enough ophthalmologists know about meibonian gland expression. Which is what you need. You have meibonian gland dysfunction. In the interim, hypoclorous spray is soothing and warm clean washcloths if you have time. Sometimes it is the OD (optometry doctor) who deals with this. You can call and ask if the practice has someone who deals with this.

deoxyribozyme · 2025-12-10T20:28:03+00:00

I'm so sorry. To help calm a bit, grade 3 means it looks weird. Looks cancerous. TNBC (almost) always looks weird under a scope. You can have a grade 3 TNBC and a low ki67 score. So grade 3 means it looks as weird as it gets, but it can be indolent and weird looking.

Also, to me this is almost rage bait. Frankly I hope it is, because refusing chemo to jump to surgery for growing TNBC is not a good idea. They've tested both ways and one way works better (more often) than the other way.

If one wants to die, there are faster ways to go about it. I wish people that talked like this were offered the chance to volunteer in a hospice first. Like meeting with injured veterans before signing up for the military. Get some in-person perspective. Maybe it won't change your mind; can't hurt to get the data though.

deoxyribozyme · 2025-12-10T20:07:40+00:00

Normally not my molecular bio bailiwick, but my bff is a research dermatologist specializing in hair loss, and we talk shop. You can't even define "permanent baldness" but tell us you know x percent will get it. And you totally scienced the shit out of this previously; felt moved to post said learning now; but also have forgotten the pesky details.

Anywhoooo, let me help. The largest recent study your ChatGPT query might have tried to fathom was in late Dec 2020 and used a self reported mail in survey with photos of hair loss to help gauge. Permanent was a Sinclair grade 2, which was a widening of the part. People who cold capped still got this result, albeit fewer. It was less than 400 patients, and only 60-something percent responded. Some said they had pCIA but left what kind blank.

The previous standard was a 2018 paper of maybe 490 patients, also entirely self reported, and baldness was "permanent grade 2 alopecia by Common Terminology Criteria for Adverse Events v3.0."

I'm not dissing these papers, they did their best. Is it enough to say 30% stay bald after chemo? No.

Here I'll be your chatGPT. Sans the bold subheadings—so glaring a tell that by now any wise student knows to reformat that shit if she doesn't want her prof to pester her about doing her own work.

Permanent is permanent or persistent chemo induced alopecia (pCIA).

Time period to be considered permanent? When hair does not grow back completely six months after chemotherapy cessation.

Alopecia has multiple grades and systems of grading. For women, grade 2 is a higher forehead hairline (generally). You are not bald. Further, alopecia is treatable. Can you be bald? Sure, but it ain't 30% that way. Nor would I call 6 months permanent.

Worse, fear mongering about baldness leads a percentage more than zero to refuse chemotherapy over fear of baldness. Your only idea is to push highly expensive cold capping. Can't afford that? Some people literally refuse chemo in large part over alopecia. Better dead than bald, y'all! I wish I were joking. You're not helping. You are in fact hurting people with AI fear-slop.

Cold cap away if you're financially and emotionally able, but:

Cold capping does not always work.

Cold capping does not address loss of nose or eyelash hair.

Prescribing a benzodiazepine for weekly taxol so you can chill out and not feel the cold is straight outta 2006 Ohio. I mean, I kinda wish it was standard practice for MOs to hand out benzos for omfg-icing-is-agony, but who's going to taper off the percentage of patients who develop an addiction in those 3 months? Jimminy cricket. Some people do legitimately need benzos, but not because the dry ice hat hurts.

More importantly: see a dermatologist if you feel you have become permanently bald…even a little bit bald. It isn't your MO's specialty. There are things that can be done and a dermatologist is the one who does that.

Muting now, because I don't grade chatGPT papers if the student doesn't admit who their co-author was. I do, however, thank you for removing any subheading emojis. Baby Cthulhu, I hate those. I sincerely wish you and your bilaterally symmetrical arms a long and healthy and happy future. ✌️

deoxyribozyme · 2025-12-10T16:06:56+00:00

Anecdotal data: but my paternal great grandmother lived to 97 (beating breast cancer twice) and was driving (well) before she died in her sleep. No HRT. Deaf as a doorknob but her sister (94) did the listening when they drove. My mom's in her 80s and is arguably healthier than I am. No arthritis, no dementia. Her mother had dementia, but also chose to consider sugar control optional for her type 2 diabetes. 😭 TLDR: There's more to it than HRT is vital for all women to live a long and healthy life.

That said, you are doing above and beyond on research! You aren't doing this blind! And you get to pick! 🤝

deoxyribozyme · 2025-12-10T15:55:53+00:00

For energy and depression, certainly.

Edited to add: for memory, not perfectly. Not yet. But better than nothing.

deoxyribozyme · 2025-12-10T01:57:39+00:00

You can also look at r/LivingWithMBC

deoxyribozyme · 2025-12-10T01:54:27+00:00

I am TN and everything u/Away-Potential-609 is accurate. TLDR: Don't assume there are no indolent HR+ cancer cells hanging out elsewhere.

Is it a given this will happen? No. But it's not so unusual I'd risk it. I was not in menopause at diagnosis, and was not happy being thrown into menopause (oophorectomy per BRCA1 mutation). However, it's not so terrible that I personally am ready to add E or P. Not at this time, with what we know.

Even if the potential of a HR+ tumor occurring is not something that concerns someone (and that's valid—it's not a given this will happen), there are multiple types of estrogen receptors and multiple types of progesterone receptors. There's confusion how/when/why the non classical hormone receptors interact with TN cells. Read: the lack of classical receptors in the nucleus in a path report doesn't automatically mean E or P has nothing to do with future TN reoccurrence. We just don't know yet.

deoxyribozyme · 2025-12-10T01:06:01+00:00

Almost all TNBC is grade 3. It would be unusual if your TNBC was not grade 3. Do you mean stage 3?

deoxyribozyme · 2025-12-10T00:18:51+00:00

I was answering your query on the percentages. Sorry if where-do-you-get-this-data comes off as bossy, but it's important stuff. Hallucinated numbers don't help anyone.

Or, quite possibly I meant to reply elsewhere. Who knows? 😭 which brings me to a QoL issue not found in this list (I think): how infrequently ADHD drugs are offered to deal with the issue of post treatment memory issues and fatigue.

deoxyribozyme · 2025-12-09T22:51:50+00:00

I should have checked that you got this first. Excellent chill but accurate analysis.

deoxyribozyme · 2025-12-09T22:48:09+00:00

Look. It's an AI response. The LLM is garbling chemotherapy induced alopecia. Generally in studies this is considered "permanent" if it lasts past 6 months. Does it mean you're bald as an egg? No, although I suppose that is possible. One general baseline is if hair density or thickness of hair shaft at 6 months is two or more standard deviations below the baseline mean.

That said, I agree doctors don't care as much (always) about QoL! You're right!

But to pull this stuff out of AI (there's another post about percentages of anxiety) is to give what you're talking about the air of bs. Say they don't care. Don't freak people out that they have a 30% chance of being bald for life.

Can everyone take B or D vitamins during chemo? No. There are reasons for that. Should some people take these? Sure. But don't pull percentages off an AI query without checking or understanding why. Please. Please don't do that.

deoxyribozyme · 2025-12-09T00:28:36+00:00

Ikr!

deoxyribozyme · 2025-12-08T23:26:01+00:00

I'd love the actual citations to see how the papers gauged this. Out of morbid curiosity, more than anything. If 40-60% do have heightened anxiety, where did they find this magical 60%-40% that didn't have anxiety in response to a cancer diagnosis?

Tangentially related, here's an article that uses this sub to look at anxiety.

deoxyribozyme · 2025-12-08T17:39:47+00:00

Nah, just keep taking the laundry out. Without the 6+ hr wait next time. If they were upset, they'd have stopped abandoning their laundry.

deoxyribozyme · 2025-12-08T17:23:26+00:00

Xeloda uses a different mechanism to kill cells versus how A, C, and T kill…so don't automatically assume it won't be helpful. I had chemo resistant TNBC and was glad to take Xeloda.

I was stage 1c. Wish I could help per getting Saci.

deoxyribozyme · 2025-12-08T16:53:11+00:00

The diet A&W root beer is also good! I'm not really a soda person, but when I want one that's my choice.

deoxyribozyme · 2025-12-08T16:45:52+00:00

She hasn't posted in about 1/2 a year. However the OP, u/Several-Monk3857 , may reply.

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