6 Month Follow-Up

October 11th, 2016 was my 6 month check-up for Operation Peapod Extraction. I was so excited to go honestly, so I could see my results. And, who doesn't like going to Ann Arbor (such a cute town!)

By the time we arrived at U of M, we were 15 min late which set everything back! I'm pretty sure that stressed my mom out, and well, me maybe just a little bit! But, all was well. My MRI was scheduled for 1:30, and I finally got strapped in around 3:15. If anyone has ever had an MRI, you know it's one of the loudest procedures you can have. They give you earplugs - and this time, I got noise cancelling headphones, too! They strapped my head down, and got me all nice and ready and in I went.

The results were in by the time I got up to see the doctors - looks like no tumor present in the MRI. There is some whiteness that can either be residual tumor, or scar tissue. Dr. Sullivan wanted to wait to even look into that until my IGF-1 results came back in, which takes a couple of days.

Like the impatient person that I am, I kept logging into MyChart to see if my results are uploaded..finally, today, results were in!  And.. the results are NOT GOOD.

Acromegaly is measured by how high your Growth Hormone and Insulin-Like Growth Factor 1 is. The higher the number, the more symptoms arise and the more evident that you are not in remission and that Acromegaly is still very active in your system. Your IGF-1 should fall within a standard range of 94 - 252 ng/mL. I was getting so close in June - just needed to drop 200 points and I would be in the clear! But for some reason, now, I am back up almost 200 points. For females, your Growth Hormone should be 0-5 ng/mL. Although I am not much over the range, just 4 months ago, I was in a very healthy range.

I have emailed Charlotte, my Endocrinologist Nurse Practitioner at U of M, to find out the next steps. I will also be emailing Dr. Barkan, my Endocrinologist , and Dr. Sullivan, my Neurologist, to follow up. With everything that is going on right now (the blood clots, the 4-6 weeks of Antibiotics to continue to clear up Staph, taking Xarelto (blood thinner) for the next 6 months to help prevent future blood clots, postponing a very much wanted and needed hysterectomy until I am off the Xarelto, taking medications to stop my crazy heavy nasty period (TMI?), I really do not want to add additional medication, but add additional stress to my life.

I have the following options to lower my IGF-1:

• Synthetic Hormone Injections
• Lanreotide (Somatuline)
• Octreotide (Sandostatin)

• Dopamine Promoters
• Cabergoline

A future option may be oral medications - but unfortunately, the FDA has not approved the pills yet. There was a clinical study conducted, but there were not enough participants on the study, so the FDA refused the oral medications. When there is less than 20,000 people in the United States that have Acromegaly, and even a smaller number who are taking medications, it's difficult to meet the high number that the FDA wants for their clinical studies. Luckily, on the repeat study (which the FDA has said we can move forward with) the FDA opened up the study to Acro's who live outside the USA. Sadly, I haven't heard much about where this clinical study is at this time.

Dr. Barkan has used estrogen therapy over the past 30 years with loads of success, however, with my being on blood thinners, they do not want you to be on estrogen as it increases your risks of blood clots tenfold and is extremely dangerous combination from what I am picking up (after talking to 2 OBGYNs while in the hospital).

Up to this point, I was certain remission was in my near future, and I would not need to worry about hormone levels increasing. I was so positive I could beat this and avoid those HUGE ASS NEEDLES that come with the Somatuline and Sandostatin. Now, I am not so sure. I knew that Acromegaly will always be a part of my life, and I have learned to embrace this fact. What I have not learned to embrace is the thought of not being in remission and having to be on a lifelong regimen of HUGE ASS NEEDLES.

Dr. Barkan likes to write letters to my PCP and send me copies with his notes from our appointments - which is pretty cool. In this week's letter, he wrote:

Addendum 10/13/2016

GH 5.9 ng/ml; IGF-1 635 ng/ml.

Dr. Sullivan will call her to discuss reoperation.

I guess we are looking at Operation Peapod Extraction 2.0 in the near future (after we yank out the uterus, dammit)

One good bit of news I did get from my U of M MyChart is that the financial department has applied financial aid to my balance, so now, I have a $0 balance. After all these hospital / doctors visits, tests, meds, etc., it was an amazing and most welcome message!

And the fun continues..............................