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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 6 months instead of a year.  Worst case scenario - I need another surgery or radiation.  I think the MRIs are more anxiety provoking than the possibility of surgery!  I hate MRIs!

Along with everything else going on, she also thinks that I might need further testing to see if I have a growth hormone deficiency, although we can't treat it if I have active tumor tissue (it would cause it to grow).

I get the results of a skin biopsy on Thursday, so I'm getting a little nervous about that too.  Hopefully it will be good news!


On another note, take a look at this video!  It's good to know that there is research going on so someday people with Cushing's might not have to have multiple surgeries to be cured, maybe there will be a medication to treat it.

Comments

  1. I really appreciate your honesty about your situation. I have to decide if I want the bla and I'm agonizing! Would you do it again, if you had to decide now? Do you feel any better? Do you have more energy? I would love any advice you could give me! Thank you and have a wonderful night!

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    1. Someone did a survey recently on quality of life post-BLA. Most, but not all, would make the same decision again. For me, it was a no brainer. I knew I couldn't live like I was living anymore, and this was the best option. It has been almost a year and a half since my BLA and I have lost 70lbs total, and feel like it was a good decision for me.

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