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.
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!
So timely! I was just prescribed a low-dose statin (5 mg) at 75, with no cholesterol issues, low/normal blood pressure, normal weight, etc, no other medications. But my calcium cardiac score was not 0 (mid-30s) and my PCP suggested a statin prophylacticly. It's taking medicine prophylacticly that stymied me, but I'm beginning to see the point!
As always, thank you for this newsletter. I just had bloodwork done and everything was in the normal range - but my bone doctor said my "D" was high - it was high for bone loss although in normal range for general. I looked at my supplements and all of them contained D when it used to be just the "D" stand alone. I have dropped a lot of the supplements. I have been on treatment for bone loss for 6 years and it makes me nervous to be on the medications - but deferring to Doctor (a bone specialist) to weigh the pros versus cons.
This was great. I’ve actually started reassessing my supplements (I’m on one prescription for BP) and the framework will help further refine my approach. Thanks doc!
This is such a useful framework! And I think it speaks to just how much clinicians like yourself can help guide people to making their own best-informed decisions as that framework might be a bit overwhelming for most people to properly dive into on their own otherwise! I've been experimenting with medications and supplements for years and definitely feel that relying on medications is a sign of failure or that there's something fundamentally wrong with me, but it is actually just a tool! V useful way of framing it :)
Thank you for sharing your knowledge with us. I learn a great deal with each newsletter. I’m on omeprazole (20mg) for debilitating GERD. Really worry about the long term effects but am savoring the current bliss of not having miserable reflux every day. Ugggh
Thank you for this post. Recently I was prescribed a statin at my initial visit with a cardiologist. After 4-5 weeks I began experiencing deep bone pain in my legs and tingling in my feet. I contacted the doctor’s office and was told to stop the statin for two weeks. Within a week the pain and tingling stopped. That was 6 weeks a go and I’m not going to resume the statin. I’ll let the cardiologist know at the end of the month at my follow up appointment. My coronary calcium score is 504 which prompted the visit to the cardiologist. (I requested the test after reading your post.) I’m not sure what to ask for next. I am sure that I have to be my own advocate.
My doctors are required to spend no more than 15 minutes per patient unless a planned extended appointment for 30 minutes has been made. They’re overworked so I’m not laying blame. I’m 72 and need to lose 40 pounds. I walk a brisk 30 minutes most mornings and take yoga classes twice weekly. I’m recovering from the loss of my son last year. Do you have any advice that I may take to my next cardiology appointment? Thanks
Hi Faith - I can't give you specific advice but certainly you need close follow up with the cardiologist and a trial of either another statin or other cholesterol-lowering, cardioprotective medication given that high calcium score. I am sorry you have had such a difficult experience! LMM
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.
Thank you for sharing this, Callie. You are clearly navigating the tradeoffs of medicine with grace!
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!
Wow - that is a story! Thank you for sharing it. I agree with you 100% that self advocacy is crucial - so is finding a medical guide you can trust :)
Appreciate you writing in. ☺️
So timely! I was just prescribed a low-dose statin (5 mg) at 75, with no cholesterol issues, low/normal blood pressure, normal weight, etc, no other medications. But my calcium cardiac score was not 0 (mid-30s) and my PCP suggested a statin prophylacticly. It's taking medicine prophylacticly that stymied me, but I'm beginning to see the point!
A statin for a CAC in the mid 30s is smart medicine. Good for you for taking the plunge!
As always, thank you for this newsletter. I just had bloodwork done and everything was in the normal range - but my bone doctor said my "D" was high - it was high for bone loss although in normal range for general. I looked at my supplements and all of them contained D when it used to be just the "D" stand alone. I have dropped a lot of the supplements. I have been on treatment for bone loss for 6 years and it makes me nervous to be on the medications - but deferring to Doctor (a bone specialist) to weigh the pros versus cons.
This was great. I’ve actually started reassessing my supplements (I’m on one prescription for BP) and the framework will help further refine my approach. Thanks doc!
This is such a useful framework! And I think it speaks to just how much clinicians like yourself can help guide people to making their own best-informed decisions as that framework might be a bit overwhelming for most people to properly dive into on their own otherwise! I've been experimenting with medications and supplements for years and definitely feel that relying on medications is a sign of failure or that there's something fundamentally wrong with me, but it is actually just a tool! V useful way of framing it :)
Thanks Sonia !
A terrific set of annual review questions!
I find many of my older clients are likely over medicated and it impacts their balance. The list will be a great resource for them. Thank you!
Thank you for sharing your knowledge with us. I learn a great deal with each newsletter. I’m on omeprazole (20mg) for debilitating GERD. Really worry about the long term effects but am savoring the current bliss of not having miserable reflux every day. Ugggh
Well said!!
Thank you for this post. Recently I was prescribed a statin at my initial visit with a cardiologist. After 4-5 weeks I began experiencing deep bone pain in my legs and tingling in my feet. I contacted the doctor’s office and was told to stop the statin for two weeks. Within a week the pain and tingling stopped. That was 6 weeks a go and I’m not going to resume the statin. I’ll let the cardiologist know at the end of the month at my follow up appointment. My coronary calcium score is 504 which prompted the visit to the cardiologist. (I requested the test after reading your post.) I’m not sure what to ask for next. I am sure that I have to be my own advocate.
My doctors are required to spend no more than 15 minutes per patient unless a planned extended appointment for 30 minutes has been made. They’re overworked so I’m not laying blame. I’m 72 and need to lose 40 pounds. I walk a brisk 30 minutes most mornings and take yoga classes twice weekly. I’m recovering from the loss of my son last year. Do you have any advice that I may take to my next cardiology appointment? Thanks
Hi Faith - I can't give you specific advice but certainly you need close follow up with the cardiologist and a trial of either another statin or other cholesterol-lowering, cardioprotective medication given that high calcium score. I am sorry you have had such a difficult experience! LMM
Thanks! I have an appointment with my cardiologist next week and I’ll mention this.