Discussion about this post

User's avatar
Callie Palmer's avatar

I have had cancer twice. The first round was endometrial cancer, treated with a total hysterectomy, chemo, and radiation. Four years later, it came back in my lymph nodes, treated with chemo. My doctor also put me on Olaparib, and I've had no reoccurrence since I was treated in 2019. In the last year my oncologist pointed out I'd been on Olaparib far longer than most patients, and that I was now at risk of getting a type of leukemia that is not treatable if I continued it. I was very stressed out about this - go off the meds and have my cancer return or run the risk of untreatable disease? I decided to go to an oncologist at OHSU who specializes in this and had a great conversation. She explained that the actual benefit from Olaparib probably stopped at about 2 years, so I wasn't actually getting any prevention from it. We talked it through, I then talked with my husband, and I went off the med. I figured if my cancer came back, it might still be treatable - though I really don't relish another round of chemo. I am hoping for the best and working on weight loss and just feeling better. Also trying to have more fun because who knows what is coming. It doesn't help that the current administration is cutting research funding and causing insurance rates to go up.

Expand full comment
Lucy's avatar

Fantastic article!

I recently ended up with serotonin syndrome. Not an enjoyable place to be nor was it something I ever thought I would go through. Serotonin syndrome is not talked about nearly as much as it should be. Or, in my case was it even mentioned.

Sadly, I figured it out far before my doctors did because they weren't listening or addressing my symptoms. I thought I was getting MS or a neurological disease. I was getting temporary paralysis in numerous parts of my body and as time went on, the temporary paralysis was becoming much more frequent. My cognitive function went into a major decline and I developed a massive stutter as well as a loss to all five of my senses. I also had a countless slew of other issues that developed along the way.

I ended up being misdiagnosed with numerous mental health disorders over the course of 30 years. I was diagnosed with Bipolar 4 times by 4 different psychiatrists and medicated all times with Lithium and Lamotrigine. None of which worked. I was then diagnosed with ADHD and on Vyvanse for well over a year and going as high as 60 mgs for a person that weighs 140lbs!

That was all in my medical file but the psychiatrist's didn't check my file. Ever. Even the one that I directly handed my file to!

I can not express the importance of being your own advocate as I see this happening with many other people on a regular basis and it is a horrendous shame! I lost so much time because of misdiagnosis and medication "trials".

The bottom line came down to childhood trauma. Borderline personality disorder which I found out at the age of 50. (I am now 53.)

Depression was a symptom of which I was treated for with medication at first, and then ECT as well as medication . ECT didn't work & now I understand why. It was not my main issue. I also had anxiety along side of panic disorder & medicated for those for over 25+ years!

Most doctors don't have time to check your files which is why I have learned to request mine from time to time and keep my own medical files. I often get asked by doctors, what worked for me in the past. When you have a mental illness disease, it is hard to "remember" what you want to remember little own remember your meds & what worked over 25 years.

I recently came off all my medications and the symptoms that I was having have decreased significantly both in my brain and my body. I don't have a neurological disorder a for that, I am immensely grateful!

Expand full comment
15 more comments...

No posts