Skip to main content

New medication?

I had my followup appointment with my endocrinologist today.  It went MUCH better than I was expecting.  I thought I would go in, have her tell me to do more tests, and we'll wait to see what the tests show.  Instead, I will be having consults with a radiation oncologist and an adrenal surgeon so I can weigh my options, I scheduled another MRI to check to see if we can see any more tumor, and I was prescribed a new medication that might help while we wait.  The medication is usually used to treat prolactinomas, which are also pituitary tumors but instead of secreting ACTH like mine, they secrete prolactin, which causes irregular periods, infertility, and lactation.  My doctor has had 2 patients with Cushing's on this medication and one saw great results from it.  It has very few side effects and I only have to take it 3 times a week, but the one (pretty big) side effect I have to watch for is any change in my depression status.

One of my biggest struggles with Cushing's has been depression.  It's a different kind of depression than most people I think, it's more of a mood instability than a depression.  I just feel out of control of my emotions most of the time.  For me, this means crying ALL THE TIME about things that don't necessarily deserve tears.  I can't imagine how annoying that is for everyone around me.

If this medication works well for me and helps with a lot of my Cushing's symptoms, then I would feel more comfortable with radiation as a long term option because I could continue taking it while we wait 2-3 years for the radiation to work.  We'll see how the next couple months go.  I go back in July, hopefully to make some more long term solution decisions.  I'm still not too thrilled about either option...hopefully this medication will help me make up my mind one way or the other!

As far as the petechiae - she called her husband who is a hematologist that does research with platelets and he asked her to order a few more blood tests to see if we can find out what's causing it.

Comments

Popular posts from this blog

Talk About the Sh*t you Don't Want to Talk About

I haven't updated this blog in a very long time.  I actually deleted a ton of posts while I was applying for social security disability. I posted about Cushing's Awareness day earlier this week on facebook, so I guess I'm in a sharing mood. Anyway, for anyone who even reads this, I was watching a documentary on Netflix about a teenager with anorexia and mental illness who found meaning in her life through yoga. (It's called I Am Maris). It's kind of the reason for this post. To start - let's go back to June 2018. My grandmother died.  She lived a wonderful long life, but it was especially hard on me.  She was the reason I got out of bed every day, my best friend, and so much more. I actually don't remember how I got through most of the summer. In the span of two weeks at the end of August, my mom turned 60, we went on a family vacation to the vineyard, my best friend got married, and I wanted to kill myself.  Yeah, you read that right. The day after re

The Challenges of Getting a Diagnosis

I have been asked about this so many times, and talk about it a lot, whenever someone asks me about Cushing's.  So many people have the same experience - KNOWING you have Cushing's, and seeing 5, 10, 20, or more doctors over the course of many years before you officially have a diagnosis.  I would say this is one of the most common links I have with other "Cushies".  We all fought for a diagnosis, heard we were just fat and depressed, waited with hope after every test, until a day came when one test came back high, or a brain MRI showed a tumor in the pituitary gland. I think the reason I haven't written about it is because it's one of the hardest things to sit down and spend time on.  It's painful, and of course, I can't help but wonder what my life might be like today if I was diagnosed sooner.  Would I have needed an adrenalectomy?  Or for that matter, a second pituitary surgery? Would I have as many health issues after Cushing's?  It's ha

Yet another health update...

As many of you know, things haven't been that great with my health lately.  I just had an appointment with my endocrinologist at MGH that was very informative, although not very exciting.  My ACTH levels have increased dramatically since a few months ago.  This is to be expected after a BLA and since I likely have tumor tissue left in my pituitary gland, this wasn't too surprising.  She seemed a little concerned about this recent increase and took a look at my MRI from July.  I hadn't actually seen the images, I just read the radiologist's report that said everything looked normal considering the 2 surgeries.  She thought my pituitary stalk looked pretty enlarged (the stalk comes up vertically from the gland and connects it to the hypothalamus).  This could be because I have tumor growth, which would make sense because of the increased ACTH.  She is going to have my neurosurgeon look at the MRI to see what he thinks, at the very least this increases my MRI intervals to