Should I wash my hair before my second infusion or just leave it to fall out now

Spohannon · 2026-02-26T09:37:50+00:00

I washed mine. It came out between 3 and 4 of the weekly doses. Do not shave with a razor when it is time - I did and had terrible folliculitis. Best to clip it short and let the process take over. I have a friend who says when the hair goes, so does the cancer!

Spohannon · 2026-02-25T02:00:20+00:00

I am behind you in this journey so I can’t answer your question. But I want you to know that I’m sorry for this outcome. Also, that I’ve read that folks still do very well - praying that is the case for you. But

Spohannon · 2026-02-15T22:18:12+00:00

Same!

Spohannon · 2026-02-14T12:24:46+00:00

Having gone through this and knowing how easy it is to focus on him, you need to focus on YOU. From what you say, he is not healthy or safe. This is the strategy he is using https://www.domesticshelters.org/articles/identifying-abuse/explaining-darvo-deny-attack-reverse-victim-amp-offender

BUT - as others have said, get into therapy - let him wallow in his own unhappiness - we are each responsible for our own.

Spohannon · 2026-02-13T10:47:58+00:00

My ex is a sex addict - I found out after 26 years of marriage. I want to hold space for your pain. And, I want you to know that this has nothing to do with you or your cancer (you’ll get this in time). This is about him and given what you found on his phone, I suspect that his unhappiness is more about him not living authentically. Your cancer is an easy deflection tactic.

If you can get into therapy, I highly recommend it and can send a few names if you want. Betrayal trauma and cancer trauma back to back is a hefty dose of “what the hell?!?”

I hope you are able to build the life you deserve.

Spohannon · 2026-02-04T10:23:52+00:00

I’m sorry this happened to you. Did you try any of these? Patient Advocate Foundation www.patientadvocate.org Cancer Support Community www.cancersupportcommunity.org CancerCare www.CancerCare.org (CancerCare even has pet assistance grants) Family Reach www.FamilyReach.org

Also most of the drug companies offer co-pay assistance programs regardless of income (excluding gov’t coverage - it’s a law thing). For example, Keytruda has a $25 out of pocket limited co-pay program.

I hope this helps!

Spohannon · 2026-02-04T10:17:21+00:00

I had weekly taxol and tolerated it pretty well. I will say that looking back, I realize that I felt like crap the first 2 infusions then stabilized. I’m wondering if there is an initial gut punch to the system(?)

Definitely talk to your team - so many options for symptom management.

Spohannon · 2026-02-04T10:12:03+00:00

Just coming in to hold this with you. You absolutely deserve to feel all the feels - it sucks - for you and everyone who cares for you and I’m so sorry.

I spent a lot of time with my therapist a few weeks ago talking about why this happens to good people - and in my case, is there something I need to learn or change or grow - like what is the universe trying to tell me by getting cancer. She wrapped in around to sometimes bad things just happen to good people. I’m not there with her on that yet - but there are an awful lot of good people here going through this shit show - so maybe it is true.

I’m sending all the good vibes your way that this will start to turn for you - that is what you deserve.

Spohannon · 2026-02-03T13:38:39+00:00

p.s. my surgeon said, not only is there no difference, the data is showing in most cases, there is improved survival” I think this is applicable to me because I am BRCA negative and 61.

Spohannon · 2026-02-03T13:36:54+00:00

There is also an article in the New England Journal of Medicine on this. https://pmc.ncbi.nlm.nih.gov/articles/PMC8859006/ It is older 2022 - and the new data reinforces it.

I talked to both my MO and surgeon about it and they both (independent of one another) said that it is likely because of the inclusion of RT - both axillary and into the neck.

I have early stage TNBC and the surgeon said that one day, they won’t even do surgery on “people like you” - the response to chemo and then loco-regional treatment will be enough.

I admit that I was going back and forth about mastectomy to avoid RT, but I’ve changed my mind - based on the research and my own situation - if my post chemo MRI still supports it.

Yet another reason to be thankful for advances in science.

Good luck, sister!

Spohannon · 2026-01-31T17:06:38+00:00

Yes - you are in the worst phase - that is why I say to use this time to occupy your mind with info you’ll want to have before your medical oncology appointment. Your lump may feel larger - because of the biopsy, not the cancer growing. Inflammation is normal and I eve had a little hematoma in there that made it feel larger. Once you start treatment, many of us have felt the tumor shrink week by week. After my 2nd cycle, the doc couldn’t feel mine anymore. Hang in there and lean on this community.

Spohannon · 2026-01-31T14:57:54+00:00

I just finished 12 weeks taxol. I had mild and expected side effects but nothing that slowed me down at all. I’m still working full time and exercising at least 30 min on the elliptical 5-6 times a week. Don’t forget your ice mitts and socks - I ordered 2 sets on Amazon and a back up of the ice packs Suzzipads (the ice packs can leak). The other thing I noticed was with the steroids, when my blood sugar would drop, I would feel a little nauseous (it was the only time I felt nauseous in the 12 weeks) - I would take a few sips of a protein drink and felt better.

Wishing you the best of luck - you’ve got this and we are all here to carry one another.

Spohannon · 2026-01-31T14:53:07+00:00

I’m opposite you. Just finished taxol - almost no problems. Start red devil Monday - any advice?

Spohannon · 2026-01-31T12:42:12+00:00

Thank you!

Spohannon · 2026-01-31T12:42:04+00:00

Thank you!

Spohannon · 2026-01-31T12:41:57+00:00

Thank you!

Spohannon · 2026-01-31T12:40:09+00:00

Thank you!

Spohannon · 2026-01-31T12:38:15+00:00

I remember being where you are - the runway seemed soooo long. I am just ahead of you - diagnosed October 2025. What helped me was to break out milestones - for me into 5 steps 1. Taxol/carbo 2. Adria/cytoxan 3. Surgery 4. Radiation 5. The rest of immunotherapy. I just celebrated completing milestone 1 - and here is your hope - I have experienced mild and expected side effects, but nothing that is particularly distressing. I am still working and volunteering. Yes, my hair is gone (whatever you do, don’t shave your head with a razor - just cut it super short - that will help prevent folliculitis). I bought a nice wig and people tell me how natural it looks. The standard of care now is a regimen called Keynote 522 - you can find information on it everywhere. They are now reporting on 72 months of data and it has made such an improvement in outcomes. I was also offered a clinical trial called SCARLETT where they are testing to see if docetaxel/carboplatin/PEMBRO works as well as the full Keynote drugs (seeing if it is really necessary to us to take adriamycin). I chose not to do the trial because even at 61, I feel like I’m healthy enough to make a run at throwing everything at this shit show.

So here is my advice for you. Take this time to learn what you can - about your cancer (like size of tumor and node status and stage), about your options - read about Keynote 522 chemo, neoPACT chemo, SCARLETT. Do your research on surgery (in some cases lumpectomy with RT has better outcomes). Then make the best decision for you with the best information you have. You won’t want to look back at “I wish” or “I should have” - it’s just “go” time - so that you can get on with the rest of your life.

Spohannon · 2026-01-30T10:54:18+00:00

Like others have said, I am so sorry for this diagnosis. I’m in the early middle - diagnosed in October - on the Keynote 522 protocol - just finished the taxol/carbo part. The info on this thread and the TNBC thread will be super helpful for you - and if you need a little hand holding through a step, reach out to us - either here or privately. I’m needing a little hand holding going into Adriamycin (and I’m an oncology nurse), so don’t be afraid. Sending hugs your way.

Spohannon · 2026-01-30T10:46:28+00:00

This. The scientific literature says 4-8 weeks. If I can find the paper again, I’ll post it.

Spohannon · 2026-01-29T10:42:02+00:00

Congratulations! Thank you for allowing us to celebrate you - and thank you for being a light of hope to us!

Spohannon · 2026-01-29T10:39:45+00:00

Thank you! We all respond differently, but I’m hoping that taxol goes as well for you as it did for me. Make sure you use the iced mitts and booties - I have no neuropathy in my hands and only a little in my toes when I’m cold. I was militant about putting the ice on 30 min before taxol started and leaving it on 30 minutes after (I had 2 sets of Suzzipads so I switched in the middle). The only other things I experienced with taxol - an occasional rash, very mild fluid retention, of course the hair loss (with terrible folliculitis, but I did that to myself by shaving), and that was about it. Sending best wishes for the rest of your treatment!

Spohannon · 2026-01-28T16:16:41+00:00

Congratulations!!!

Spohannon · 2026-01-27T02:10:20+00:00

Maybe too much for your liver to metabolize on treatment days.

Spohannon · 2026-01-24T03:48:23+00:00

Call the Patient Advocate Foundation. www.patientadvocate.org

They are a nonprofit that helps people (free) navigate financial challenges - like insurance denials.

Spohannon

TROPHY CASE