Skip to main content

6 week post op visits

Monday I had my official 6 week post op appointments with my endocrinologist and surgeon.  They went pretty much as expected.  My cortisol levels keep rising, and while not abnormally high yet, this is not a good sign and we will consider me not cured of Cushing's.  My surgeon said that since I am past the 6 week mark, I would officially be the longest delayed cure he has ever seen if my cortisol levels started to drop, so I think it's safe to say that the second surgery was not a success.  I could tell he felt bad about it, because he seemed interested and engaged in our conversation, where before surgery he was Mr. Business and didn't have a warm, fuzzy personality.  We discussed my options, and I managed to just make it into a clinical trial of a new drug.  I just have to have a high 24 hr UFC first, and hopefully the one I brought yesterday broke that normal limit so I can get started.  The medication should take away or improve all of the symptoms of Cushing's.  I should be able to lose weight, lower my blood pressure, have more energy, and feel better in general.

The nice thing about this clinical trial is that it buys me some time to think about long term treatment options.  I will continue to have MRIs, and if a tumor shows up again, my surgeon said he'd be happy to go back in since I tolerated the surgeries so well and have no loss of hormone function that we see so far.  If nothing shows up, then we can resort to proton beam radiation, which will hopefully kill the ACTH secreting cells.  It can take up to 5 years for the radiation to work, so hopefully I would tolerate the medication and it would be available for me to take for those 2-5 years while we wait.  My other option would be to have a bilateral adrenalectomy, which would cure me, but would leave me steroid dependent for the rest of my life.

I'm frustrated with everything, I'm sick of being sick, but there's not much more we can do at this point.  Things could always be worse, but that doesn't make me feel any better about things right now.  Hopefully this medication will give me some hope and a glimpse into my life without Cushing's.

Comments

  1. Danielle,

    It's nice to see your update... been wondering how you're doing. So sorry to hear that your second surgery was a failure :( Ugh! It's been such a long road for you and you so deserve to be healthy! Very cool that you'll be partaking in a clinical trial, tho. Sounds like the medication could provide a whole lot of relief, and you'll be helping future Cushies to boot! Good for you! Does the drug work by blocking cortisol production or by shrinking the ACTH secreting tumor? What's it called, if you don't mind my asking?

    Xoxo,

    Sarah

    ReplyDelete

Post a Comment

Popular posts from this blog

2 Years Since my Adrenalectomy...would I do it again?

On September 2nd, 2010, I spent the day in one of the many operating rooms at MGH.  I had spent the night before talking and texting to friends and family, after seeing Wicked and going back to the hotel across the street from the hospital.  I cried a lot, because of the scary and fairly dangerous surgery ahead, because of the hope that this disease would FINALLY be behind me, and because of the long recovery ahead.  I woke up early and walked across the street with my mom, and my dad met us there.

The wait that morning was incredibly long, my 2 other surgeries in the 9 months prior had been very early and a pretty short wait.  I cried some more (no one should be surprised by this), and finally headed into the prep room.  I met with my surgeon one last time, and kissed my parents one last time.  As I waited in the cold, dark, cement hallway outside the numerous operating suites, a surgical resident marked the incision sites.  I knew there would be many small incisions, but having the…
4 comments
Read more

Cushing's Awareness Challenge - Day 4

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?  
It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was.  I wouldn't be questioned by my boss when I called in sick.  My friends and family would be more supportive.  My doctors wouldn't question my symptoms.
Maybe my life would be easier.
But, maybe this would not be true.  I am not looking to find out.  Chronic illness is lonely.  It seems, from the outside, that cancer is not.  Most people know someone with cancer.  Most people know what cancer involves.  Endless appointments, surgeries, maybe even chemotherapy or radiation.  Cancer is life threatening. Did you know that a lot of chronic illnesses involve all of the same things?  
With Cushing's, a lot of people have multiple surgeries.  I have had 3 directly related to Cushing's, and…
Post a Comment
Read more

Cushing's Awareness Challenge - Day 29

Post a Comment
Read more