Oma2's Journal

Journal Entry for September 25, 2007 Mood

Tuesday, September 25, 2007

I found out that I had acromegaly in Jan. 2007. After months of headaches. The end of April I had surgery. The end of May and the whole month of June I had radiation treatments. Friday I started the injections. Its been a very trying experience. I'm still not work. Which is making things difficult.

Hug Oma2

Send to a Friend

Comments

Hello Oma2, This is doughboy's Mom. You are going through the same thing Doughboy did. He is not working now. He will finish radiation next week then he is suppose to start injections again. He tried one before the radiation. It didn't help any. I get so upset sometimes. This tumor is so hard to understand. We don't know anyone here with one, so all the info we get is from the friends on the computer. I just wanted to say hello. I don't know where you are from. We live in the U.S.A. Take care. Doughboy's Mom

Doughboy
Hi doughboys mom. It is very difficult. I knew nothing till Jan about acromegaly. Never hear of it even. I am from Illinois. Glad to hear from you. Someone that understands and is supportive.

I started the injection octreotide. Had a time with the ins. co. to get the injections. Nothing has gone really smooth. And its does seem like there are not a lot of people aware of acromegaly.
Oma2

Oma2
Hello Oma2, You sound like you have been through a hard time since you found out you have acromegaly and nothing is never simple with acromegaly but heres a warm welcome from me.

J0KEYJ
Thank you! Today I have to stop the injections. Making me sick to my stomach and having severe headaches again.

Oma2
Hello Oma2, This is Doughboy's Mom. I have been so busy and am sorry I haven't wrote you. We are from Georgia and you Illnois. There are two people in U.S. with acromegaly. Today is October 13th. I hope things are better with you. Your last comment you said you have to stop the injections. How are you now? The meds are so expensive too. I just wanted you to know I am thinking about you. Let me hear how you are. Take Care. Doughboy's Mom

Doughboy
I'm doing ok. Started monthly injections. Lot of upos and downs. Your right the cost of the injections is unreal. Hope Doughbioy is feeling better.

Oma2
Hi, my daughter was diagnosed last year with Acro she is 27yrs old,2 trans ops and 5 weeks of radiation, she is also on Lanreotide every 3 weeks 120 mg, the levels are still too high 25GH.she has been on this drug for 6months now, they increased the dose last month so we hope by the nect blood test it will have gone down, anybody else have this high GH Thanks

spiegal
Hi Oma,

How are you getting on, are you on another drug now, I hope you are, this is such a cruel disease, and so debilitating at times, I hope you got some good news from drug people.

spiegal