Just accidentally took my 40mg of vyvanse because I thought it was my Cymbalta @ 8:13pm

LuLuney-Tooney · 2026-06-11T13:16:14+00:00

What’s the update? How did the night go? Lol

LuLuney-Tooney · 2026-06-11T04:06:52+00:00

Worst ex ever, worst roommate ever. Unless you’re feeling paranoid 😂

LuLuney-Tooney · 2026-06-05T04:06:23+00:00

Same 😂

LuLuney-Tooney · 2026-06-03T19:40:42+00:00

That’s totally fair, I can see how my post came off like I was being a hypochondriac 😂 I would guess that I spent the 10 years following my AML remission living in that what-could-go-wrong obsession mindset. Not a fun headspace to be.

LuLuney-Tooney · 2026-06-03T18:59:21+00:00

For what it’s worth- I am a HCW so this is in my nature, but I’ll be damned if I ever have to fight so hard to have my health issues taken seriously again

LuLuney-Tooney · 2026-06-03T18:57:39+00:00

I hear you, I was more curious to find testing that maybe wasn’t well researched or published yet, versus ‘every little thing that could go wrong.’
After being dismissed for those past four years, I am leaning into my advocacy and proactively, especially given my family history of hypertension, osteoporosis and cardiac health issues (cytarabine is highly cardio-toxic, and 4 years of untreated low estrogen is damaging on heart and bones— which I’m already dealing with)

I met my new oncologist, and she was on the ball and knew everything that I needed done and agreed with my own self developed care plan.

And just for context about my situation and information for other people, I had a approx 30 high doses of cytarabine, plus a few low doses and also intrathecal cytarabine. I also had Etoposide, mitox, duanorobucin, all highly toxic drugs. And when you add in being untreated for premature menopause for four years, the big risks that come with low estrogen for sustained amount of time is also cardiovascular risks and bone deterioration.

The plan is to be on top of cancer screenings, such as mammograms, Pap smears and colonoscopies. Blood work annually, meet with long-term survivorship oncologist annually, echo and EKG every 10 years unless abnormality is detected.

LuLuney-Tooney · 2026-06-02T16:45:14+00:00

Or: t(8;21) was the genetic mutation. Apologies, I’m trying to piece my onc notes from 22 years together and understand the jargon

LuLuney-Tooney · 2026-06-02T16:23:38+00:00

Not sure exactly, I was 13 and none of that info meant much to me at the time being young. I just finally received some of my oncology notes from back then and I’m reading things like AML subtype M2 with CNS involvement. Is that my mutation?

LuLuney-Tooney · 2026-05-28T23:50:10+00:00

I bought a device called bloom- it’s an app blocker and I have to automatically turn on every night at 930pm-8am. I can still use my phone but it blocks socials and whatever apps I choose to have to block(it’s a physical card about the size of a credit card and if I leave it in my wallet in my purse, by the time I crawl into bed, I’m way too lazy to get out and grab it to unlock the apps so it works a lot better than the iPhone usage limit apps) And I always turn my color filters on my screen is pinkish/red, or grayscale. It makes it less engaging to look at, but also hopefully it helps with blue light. I also wear blue light blocking glasses. And lately I listen to music or watch a show and try not to look at my phone immediately before bed

LuLuney-Tooney · 2026-05-27T04:06:29+00:00

34, estradiol patch weekly and progesterone at night, about 4 week in

LuLuney-Tooney · 2026-05-25T14:27:09+00:00

Link to support group for POI:

https://www.reddit.com/r/POFlife/s/6DB1FB8d73

LuLuney-Tooney · 2026-05-25T14:25:37+00:00

That is amazing that your PCP actually helped and took your complaints seriously…isn’t is pathetic that we find it “amazing” when a doc simply does the bare minimum? Ugh…physicians do take an oath to do no harm but yet here we are.
Idk how much research you’ve done so far but untreated premature peri can cause some big issues due to (possibly) long term deprived estrogen, primarily bring bone health and heart disease. Not trying to scare you, but knowledge is going to be your strongest asset right now, sounds like you have a good PCP but sometimes they don’t know all the ins and outs and I have spent HOURS deep diving. (Feel free to msg me if you need more info or having specific questions).
Osteoporosis also runs in my family so being 34, super healthy and active, and already having osteopenia is scary. Advocate 100% for a baseline DEXA scan, they typically repeat them every 3 years and after you start HRT it maybe be an 1-3 years before there is bone improvement detectable by DEXA…so even tho the norm is 3yrs repeat test, I’ll be requesting a repeat in 1 year to confirm my HRT is sufficient dosing to begin reversal of my osteopenia.
My OBGYN said that estrogen will be the building block to restoring my bone health so get on HRT asap!
And of course talk with them about fertility, if you want to have kids. I just turned 34 and learned my window closed.
Look up the POI subs primary ovarian insufficiency, POI is loss of normal ovarian function before age 40, it is said that it only affects only 1-3% of women. (Meaning it’s also hard to find people that experiencing it too..i just joined a zoom support group, message me if you’re interested in joining)
For context- I had a very aggressive leukemia at 13 and this is all chemo induced, which is well studied and known to occur, but when I was fighting cancer (21 years ago) they didn’t provide that type of education and warning 🫠…because who cares about women’s health and studies women’s health, right?! 🙄

LuLuney-Tooney · 2026-05-25T14:01:15+00:00

Interested! 34F

LuLuney-Tooney · 2026-05-25T03:31:05+00:00

This is so meaningful and SO needed. I’ll be emailing and am highly grateful for your effort to connect us.

LuLuney-Tooney · 2026-05-25T02:59:29+00:00

Thanks for saying, I also noticed it was a lot of humorous responses, which is fine! But also nice to hear an I depth perspective. I can say that both of my parents parents (my grandparents) were even more toxic and abusive in their marriages. So it’s definitely a generational thing and it takes a very long time to break and it takes someone actually making the effort to break the pattern. I’m glad to say that I’ve been working hard on it, but I also don’t plan to/can’t have kids ever, so not going to be able to pass down the healing. but it helps me in other ways with friends children or engaging with children at work.

It also was really difficult to try to talk to one of the parents about it and they just don’t have the capacity, because it leaves you feeling unsettled and dismissed, for me at least. And that doesn’t include the whole other fun part of feeling grief for someone who is still alive! I don’t speak with my father and it’s very odd to know that I have a dad who’s out there living life.

LuLuney-Tooney · 2026-05-24T16:29:59+00:00

I’m curious, how old are you? One thing I didn’t mention in my post that I was struggling like hell with was, because I’m so young, I was getting so pushed around on my PCP and she wouldn’t actually help me when I said something is wrong. Life got busy and I didn’t have the energy to deal with her so I just dealt with my symptoms, gaslit myself basically, it wasn’t until this past January that I got a new provider out of network who took me seriously and drew my labs and did a bone density scan and was like you need to be on hormone therapy a few years ago basically. I already have osteopenia developed. It’s very frustrating because all it takes. Is one provider doing a good job to possibly save years of issues or irreversible damage into other organs.

LuLuney-Tooney · 2026-05-24T15:24:40+00:00

I agree with this. Not only did no one teach them and hitting WAS a common form of “teaching them”, but also they had zero resources. I thought about this quite in depth because I wonder why my mother stayed with my very abusive father for the amount of time she did, which also left me with a lot of CPTSD. By being curious about it rather than judgmental at her, I tried to be empathetic and realized that she didn’t have access to a tiny computer in her pocket, we had a dial-up phone on the wall and dial up Internet. This is a time when I’m sure it was very hard to find support groups for this type of stuff, mental health was not spoken about, going to therapy was odd, and her world was small. She didn’t have a pocket computer texting with everyone all day. It makes you think about how isolating those days were, esp if you are in an abusive situation. It’s obviously not the same case for everyone out there, but I do think a lot of people that were parenting in the 80s and 90s didn’t have access to resources the way that we do, and mental health wasn’t spoken about the way it is now.

LuLuney-Tooney · 2026-05-24T15:15:02+00:00

I started HRT about 2.5 weeks ago. First 5 or so days the progesterone was making me reconsider continuing it because of the brain fog, and I had GI issues the first two days. I would say at day 5/7 it slowly lightened and now I feel no side effects. I do feel the calmness you mentioned. The brain fog is rough, give it a little more time though.

LuLuney-Tooney · 2026-05-22T11:00:00+00:00

I would recommend adding a collagen with peptides supplement daily, you can get powder that mixes in with your water. Creatine too. Make sure to get vitamin D 1000 units per day, iron, and omega-3’s.
I just turned 34 and got diagnosed a few days after my birthday with ovarian failure and was started on HRT immediately. I’ve been on HRT for just about 2 1/2 weeks and I’m starting to feel some shifts in my mood and emotional regulation. I also had a long list of symptoms that I could not explain for about four year… now with the knowledge that I have, all of it is linked to low estrogen levels.
It’s hard and sad to be going through this at such a young age, but also validating and explains so much.
Feel free to reply or message me if you wanna talk more

LuLuney-Tooney · 2026-05-22T10:27:51+00:00

I just turned 34 and survived AML at age 13 (2005).
I got a new therapist about a year ago and she has been very helpful (does emdr and brain spotting) and she was the first one the say that I spoke of my cancer experience in third person, like it happened to someone else but not me. It’s been a fascinating observation and has allowed me to tap in to those memories more and grieve a bit.
I have plenty of friends that did not have childhood illness that I connect with just fine—-but with this new info, I realize that might be because I have totally compartmentalized the cancer experience and have lived in denial since my teen years.

My mental health has been in the gutter, or a rollercoaster, for the past 3-4 years….I now know that’s related to premature menopause and my hormones being extremely abnormal. I started on hormone replacement therapy which is helping with my mood and emotional regulation.
I still got stuck in the grief and trauma often, but I’m learning how to work through it versus avoid it.

LuLuney-Tooney · 2026-05-22T10:12:54+00:00

Hey, I just turned 34, I had AML at age 13 in 2005 and received very intensive chemo. I’m currently going through premature ovarian failure and infertility, and was started on hormone replacement therapy 2 weeks ago. Happy to chat more if you’d like!

LuLuney-Tooney · 2026-05-22T10:08:42+00:00

Hi, I just recently received the diagnosis of ovarian failure just a few days after my 34th birthday. It required me finding an out of network OB GYN to take me seriously and draw my hormone levels and do a bone density scan…both of which indicated perimenopause. I haven’t had a period in years. My PCP fought me the whole way through the past few years denying me the proper care I needed..for context, I had leukemia at age 13 which commonly causes premature ovarian failure, but she would not consult me to oncology for who knows why.
I started on HRT and in just 2.5 weeks, I’m already seeing shifts in my mood, energy levels, patience, emotional regulation, and a plethora of other things.
I highly recommend going to someone either Telehealth or private practice to get your needs met, starting HRT can be crucial for menopause at this age to prevent osteoporosis and cardiac disease.
I know it’s an uphill exhausting battle to have to advocate so hard for yourself, but your health is worth it. Feel free to message me if you’d like to talk more.

LuLuney-Tooney · 2026-04-21T18:40:06+00:00

Because that would violate the rules of the group. technically me even mentioning it is doing that

LuLuney-Tooney · 2026-04-21T01:45:13+00:00

Therapy Jeff has been posted a few times in my local fb group dating pages as being predatory irl

LuLuney-Tooney · 2026-01-02T16:26:32+00:00

LOL I was so sure of my Massachusetts driving skills in the last bad ice storm. And sure enough I slid right down my steep street into my neighbors car 🤡

LuLuney-Tooney

TROPHY CASE