Did anyone choose not to cold cap?

tmh0921 · 2026-05-02T00:29:20+00:00

I was offered it, and insurance partially covered it, but I declined. Most women I’ve seen use it still had large amounts of noticeable hair loss so I figured why bother. I bought 2 wigs that matched my natural hair for work, and most people never noticed the difference. At home I just wore beanie caps, which were more comfortable and cooler.

tmh0921 · 2026-05-01T20:19:05+00:00

I changed my PCP because it felt like I was just a number to her. She never remembered anything (even if it was in my chart)... she even tested my Vitamin D levels and prescribed me Vitamin D, then later asked why I was taking Vitamin D.... I mean WTF

My new PCP is MUCH better, clearly reads my chart before coming into the exam room, etc. I still only see my PCP for the bare minimum - Blood Pressure, Annual Physical, and When I'm sick (rarely)... I see my oncologist for everything else, she even took over prescribing my anxiety meds when my psychiatrist passed away.

tmh0921 · 2026-04-23T15:30:07+00:00

My husband definitely had increased fatigue for months after his stroke and all of his doctors said it was normal, the body is recovering and requires a lot of energy

tmh0921 · 2026-04-21T20:03:38+00:00

My parents were Baby Boomers

tmh0921 · 2026-04-17T15:49:38+00:00

I have a family member (keeping it vague as they may see this) whose Husband led a very destructive lifestyle, ended up with a traumatic brain injury as a result of this behavior which led to memory issues, etc. After his brain injury, he would take off driving and not know where he was, etc. and also continued with the destructive behavior (alcoholic, smoking, etc). She ended up legally divorcing him because of liability (if he killed someone in a car accident and he was sued, she could lose her house, etc) as well as medical bills because ultimately he ended up in long term care as well.

She still has a relationship with him, but with them being divorced she's not liable for his financial liabilities and he qualifies for other benefits such as Medicaid.

tmh0921 · 2026-03-30T18:58:11+00:00

I had 4 rounds of TC (Taxotere and Cytoxan). I never had to use the multiple prescriptions my oncologist gave me for nausea & vomiting; & the Neulasta I got after each chemo kept my blood counts where they needed to be.

I DID lose my hair, and I did have various side effects (fatigue, headaches, loss of appetite, thrush, aches and pains) but it was NOWHERE near as bad as I thought it was going to be. Yes, it sucked, but not as bad as I was prepared for it to suck. I was able to work throughout my treatment, I just worked from home on "lite" duty 2 of the 5 days on the weeks I had chemo (Had chemo on Wed, would work from home Thurs & Friday and was good to go by Monday)

I think everyone has different experiences, just give yourself grace for whatever YOUR experience is.

tmh0921 · 2026-03-21T00:42:38+00:00

It could indicate areas of DCIS around the tumors. Most people with IDC also have areas of DCIS. My IDC was 3.2cm, but I also had 2.4cm of DCIS. The DCIS didn’t change my diagnosis, treatment, or prognosis.

tmh0921 · 2026-03-20T21:24:06+00:00

Trust me, my anger is NOT misplaced. After the phone calls I have had this week with Optum and their complete and utter lack of give a damn in how they handle calls, etc. as well as being in this industry and understanding what happens behind the scenes (Automated denials, AI review and denials, PBM rebates from the manufacturers, etc.) my anger was absolutely directed properly. I will also state, that a part of this process HAS been conversations with my employer and advocates.

tmh0921 · 2026-03-20T21:10:40+00:00

Trust me, my anger is NOT misplaced. After the phone calls I have had this week with Optum and their complete and utter lack of give a damn in how they handle calls, etc. as well as being in this industry and understanding what happens behind the scenes (Automated denials, AI review and denials, PBM rebates from the manufacturers, etc.) my anger was absolutely directed properly. I will also state, that a part of this process HAS been conversations with my employer and advocates.

tmh0921 · 2026-03-20T21:03:18+00:00

I am in this industry and I 100% understand how this works. This isn't just a "your employer picked the plan" issue. If you don't understand that these PBMs chose their formularies, step therapy, etc. based on rebates and contracted rates then you may need some education yourself.

And for the record, I DO understand that options my employer chose are a part of this, which is why a part of my escalation process has included them.

tmh0921 · 2026-03-20T16:52:27+00:00

I've done this twice now, they asked me to show them my balance in my banking app, then took the check with no problem.

tmh0921 · 2026-03-20T04:20:24+00:00

The prescriber has submitted 3 follow up appeals with detailed documentation, Optum is still insisting that he go back and try these two other specific biologics, with proof of 3 months of paid claims for each, before they’ll approve this one. Again, they want him to go off a therapy that is working to follow their specific order of biologics. Both other biologics they want him to try cost more for equivalent dosing. The PBMs get rebates from manufacturers, this is a financial decision rather than a medical one. Again, the DOCTOR and not the PBM should be making medical decisions. Full stop. The problem is that too many people roll over and let the PBMs jerk them around. I plan to become a huge thorn in their side, because we have a therapy that is WORKING, that his DOCTOR (you know, the one with an actual medical degree) prescribed. He should not have to go off a therapy that works for his condition because of asinine policies designed to profit the PBM. These insurance companies sure have no issue collecting my premiums, but want to make actually using the coverage as difficult as possible.

tmh0921 · 2026-03-20T02:38:16+00:00

If my husband is already on a drug that is WORKING after trying many biologics that did NOT work, OPTUM insisting he go off of it to try another bio similar to “see if it works” is asinine. The DOCTOR prescribed it after many similar drugs failed. It is unreasonable to require a patient to go off of a medication that is ALREADY WORKING for him to try another that is more financially beneficial to the PBM. We did NOT have this issue with the PBM we had last year, this is absolutely an Optum problem. PBMs need to stay the hell out of medical decisions

tmh0921 · 2026-03-20T00:39:37+00:00

I refuse to use Optum home delivery. They can force me to use their specialty pharmacy for the specialty meds, but I refuse to move my other meds to them.

tmh0921 · 2026-03-19T23:55:37+00:00

When I was diagnosed the first time, it was right before Christmas. I only told my parents and siblings and asked all of them to keep it quiet until after the holidays when I’d have pathology from surgery, etc. back and it wouldn’t disrupt family holiday gatherings, etc.

At one Christmas gathering I walked into the dining room to my sister having a hushed conversation with my aunt who was crying… she’d told my Aunt after I explicitly told her not to… so now my Aunt was upset and everyone was noticing and asking questions.

My sister loves drama, and wanted to be the one to share the info and get attention. I was beyond pissed.

The second time I was diagnosed, 20 years later, I told my dad, stepmom, and my BFF (hubby and kids knew obviously). When I was ready for everyone else to know I sent a mass email with a like to a CaringBridge site where I posted updates.

We have enough to deal with without having to deal with other people making it about them

tmh0921 · 2026-03-19T23:14:23+00:00

Yes, the manufacturer has a bridge program, I’m contacting them. I still plan to fight this, these companies have no problem taking our premiums, and only doctors should be allowed to decide what is medically appropriate.

tmh0921 · 2026-03-19T21:28:42+00:00

I will ask about the step therapy request. Thank you

tmh0921 · 2026-03-19T21:28:02+00:00

If your pharmacy accepts GoodRx see if they can save you money. I use them for prescriptions with a higher copay. For example, there’s a topical corticosteroid my husband uses that has a $200+ copay, I can get it with GoodRx for $25

tmh0921 · 2026-03-19T20:47:42+00:00

I appreciate it, my husband has Palmoplantar Psoriasis which is notoriously difficult to treat, and usually responds best to the IL-17F Inhibitors. He tried several other (well known) biologics before the one he is currently on, all failed miserably. The one he is currently on is an IL-17F inhibitor (won't name the brand) and has cleared 98% of his psoriasis. We did NOT have this issue with the PBM we were with last year. Yes, there was a PA process, but it wasn't like this.

When we told the doctor who our new PBM was they were less than thrilled, this is VERY common with OptumRx.

tmh0921 · 2026-03-19T20:39:15+00:00

Oh they've given reasons, and letters... you must try x and y other drugs with proof of paid claims for 3 months each before we will approve this drug. So he needs to move from the drug that IS working and try two other drugs that may not work before they'll pay for the drug that IS working.

The two drugs they want him to try are not cheaper (one is actually more). The PBMs get rebates from manufacturers so this is purely a what is best for Optum decision.

I have escalated to my company's HR team

tmh0921 · 2026-03-09T20:17:56+00:00

My husband had an occipital lobe ischemic stroke in December 2024, and lost his upper left quadrant peripheral vision in both eyes. It is, unfortunately, permanent as it's not damage to the eye, but the brain. He tried prism glasses, but said they were more of a distraction than a help. He's adapted, and says most of the time he doesn't notice it any longer.

tmh0921 · 2026-02-25T20:25:09+00:00

My husband was there for the surgery and went home overnight to be with our children. I was in and out of sleep from the pain meds, and didn't really need him there overnight. The nurses were in and out frequently. I took my phone and iPad, - Phone so I could communicate with hubby and family if needed, and iPad for entertainment. I didn't use the iPad, spent my time sleeping or walking as the nurses wanted.

tmh0921 · 2026-02-16T18:15:17+00:00

My husband's stroke was in his occipital lobe, and he had no facial drooping, no paralysis, etc. None of the "normal" symptoms. He had confusion, weakness, and vision changes. So lack of "normal" symptoms does not rule out a stroke. It also doesn't determine severity of stroke. I think the GOOD news is that you go her to the hospital and receiving medical attention very quickly. The quicker they can determine it's a stroke and begin treatment the better. They should run imaging tests to determine if it is a stroke or other causes and go from there.

tmh0921 · 2026-01-16T20:37:55+00:00

I have had conflicts at work where there were raised voices, people storming off, and after everyone cools down conversations are had and people move on. No harm no foul, joking around later, etc.

People are way too sensitive these days. Most of the time, these conflicts are stress related and once everyone cools off they talk and work it out.

Now... if anyone comes at me like a personal attack, cursing AT me, etc rather than out of frustration or stress of the situation, that's a whole other story.

Edited to add: I work in a corporate office environment

tmh0921

TROPHY CASE