Friday, May 30, 2008

Starting the treatment

It took me weeks on the phone to find an endocrinologist who was willing to see me sooner than in one month. I didn't know what kind of tumor I had and that was extremely depressive. I was blessed to find a very decent and honest endocrinologist who agreed to see me. In a couple of days it became clear that I had a giant prolactinoma, which excessively co-secreted prolactin and growth hormone.

I was put on Cabergoline, which whelped me feel more energy. I will know soon whether whether it has any effect on my hormone levels and tumor size. I also asked my endocrinologist to prescribe me Androderm, because my testosterone levels were very low and it affects the mood very much. That helped even more to increase my energy.

Having done something about my prolactin and testosterone I needed to deal with the growth hormone. Sandostatin LAR was the most obvious choice. It took me another week on the phone to negotiate with my insurance company and my nurse how to get it. For some reason it was not covered by pharmaceutical benefits, but by medical. This meant that the drug was supposed to be injected in the hospital and delivered to the hospital with a courier.

In any event, I got my fist injection in mid-May. It is strange, but the very moment I was injected my tiredness returned and I felt extreme weakness and all improvements made by Androderm and Cabergoline were gone completely. I felt so fatigued as never before. On the next day I felt much better, but still felt worse than before Sandostatin.

3 comments:

Anonymous said...

You are not alone. Please let us know how you get on. I've just been diagnosed with acromegaly (IGF1 level above 999). Awaiting my MRI scan on Dec 12. Good luck. Keep up your blog - it's very encouraging for all of us.

Regards,
Trys

Anonymous said...

Any more news or updates at all?

Unknown said...

Hi there,

My name is Rochelle. Don't know if I have contacted you in the past or not but I am a fellow Acromegliac. Thought I would just drop by and introduce myself and say hi - "HI"

Feel free to drop me a line if you would like to chat.

Have a great day

Rochelle

www.rochellebuckley.blogspot.com