"The Pill"

OK... Time to start my magic pill. The pill that's going to shrink the tumor and get all of my messed up hormones back to where they should be. Dostinex is it's name. It's so little... about half the size of a baby aspirin. My dose is half of a pill too.

11/30/08 1st dose - no side effects so far. Cool.

12/04/08 2nd dose - Still moving along with no side effects. Hopefully this will be an easy treatment.

I continued to research the type of tumor and treatment for it. The more I looked the more I realized this was something that I was most likely going to have to deal with for a long time if not forever.

12/07/08 3rd dose - and here come the side effects. Headache, nausea and dizziness. All but the dizziness were treatable with over the counter medications. If things don't get too much worse this should still work out OK.

12/11/08 4th dose - Same issues as the as 3rd dose. Again treatable with the OTC meds. Apparently though I have become a bit 'short fused’. I'll take Lori's word for it.

12/14/08 - Oops, missed my dose. I'm told I'm still rather cranky as well and perhaps it is getting worse. I start to wonder if this is going to continue like this for months I would have been better off having surgery!

12/18/08 5th dose - Headache, dizzy and REALLY cranky. I have absolutely zero patience for anything. The slightest things set me off. Something new began this time as well, I started spacing out after taking the pill. It lasted for many hours.

Unfortunately I have no idea how long I will have to take this freggin pill. I know I need to take it at least until I see the doctor again in 6 weeks but at this rate I'm not sure I can do that. Perhaps once I get used to it the side effects will wear off. I hate the thing at this point.

12/21/08 6th dose - Almost the same as above but we added 24 hours of weakness. AWESOME! I guess the good news was the nausea was not a factor anymore.

12/25/08 7th dose - Christmas day. I take my pill right after Christmas dinner. We're at Tim and Nancie's house with the family. After I take the pill and start spacing out it's almost like I wasn't really there. Like I was watching everyone as they were talking to me and about me but I wasn't actually there.

Overall the crankiness was wearing off as the weakness and spaciness increased. I continued to get the headaches but they were treatable with Tylenol. The dizziness was hardly there as well. I just hope the thing is working.

12/28/08 8th dose - Some serious sleepiness and weakness now. Both lasting for about 24 hours.

01/01/09 9th dose - Same as 8th dose. I am basically useless at this point for 24 hours. I can't work. I can't do anything. I have to keep going though, I have my next appointment with the Endocrinologist on the 29th. Lori and I decide that no matter what I have to go at least until I do my labs before that appointment to get an accurate reading on what the medicine is doing.

One thing we decided to do was for me to change my dosing schedule so I can be as productive in my up time as possible. Here's what we figured might work. Friday night, after work, I'll take a pill. That will make Saturday a do nothing day. Tuesday morning, after I check emails and make any phone calls I need to make, I'll take the next one. Hopefully doing it this way I will only lose Tuesday and will be OK by Wednesday, even if I have to sleep in a bit.

Oh yea, I started showing signs of depression as well at this point. Perhaps finding the quote "once a pituitary patient always a pituitary patient" didn't help.

I did find this as well which I'm guessing didn't help either. "After a normal serum prolactin level has been maintained for 6 months, Dostinex may be discontinued, with periodic monitoring of the serum prolactin level to determine whether or when treatment with Dostinex should be reinstituted." 6 MONTHS!!!! AFTER MY LEVELS ARE NORMAL!!!! Holy Crap! There is no way I can do this for who knows how long! I have to figure something else out.

I start looking for someone who specializes in pituitary tumors. I have to find a true expert so I can get the absolute best care and the most accurate answers to my questions.

01/06/09 10th dose - An incredible amount of weakness and fatigue but still lasting for only 24 hours. Unfortunately even the headaches are responding less to Tylenol.

Something happened January 8th. I sat up to go to bed and suddenly got a sharp pain right behind my eye. A long night later I'm sitting on the couch at 5:00am literally in tears debating on whether to go to the hospital. The sharp pain still there and when I stand up it's unbearable. I have never had such a pain in my life! A few hours later Lori and I decide I should go to the hospital. Due to her non-existent immune system Lori can't go to the hospital so we wake up Mike and he takes me. Lori thinks I'm having some kind of stroke or something, me, I just think the tumor popped! After an MRI they tell me the tumor is still there and is OK (I thought for sure it had ruptured or something). The MRI did show an infection in the sphenoid sinuses. Great, that's all I need. Something else to give me headaches. 10 days of antibiotics for me. I don't believe a sinus infection can cause the pain I was having but as long as the pain was gone, the MRI looked OK and the pain didn't return I really didn't care what the cause was.

01/09/09 11th dose - The fatigue and weakness continued but now it's lasting a bit longer than 24 hours. I also started getting tremors. First in the hands then at times my whole body but mostly the extremities. I can hardly hold a cup of coffee.

01/13/09 12th dose - The extreme weakness and fatigue lasted for almost 30 hours this time. My depression symptoms were very obvious to others.

We find there are a few "pituitary clinics" around. One at Shands Hospital in Gainesville and one at the Emory Clinic in Atlanta. We'll have to look more into both of these...

01/16/09 13th dose - The side effects are lasting longer and longer, at least 36 hours now. It is becoming increasingly harder to concentrate for around 48 hours. My work is seriously suffering at this point as well.

01/20/09 14th dose - Fatigue, general weakness, headache, tremors & brain fog. All lasting for over 36 hours. The brain fog continued for another 24. I have decided at
this point I can no longer continue to take this medicine in it's current dose and have stopped. I did my lab work for my appointment on the 29th. Even if the medicine was working we will have to do something else.

We are going to keep my appointment with my current Endocrinologist but have decided to go to the Emory Clinic in Atlanta for further treatment. We will get the latest labs on the 29th as well as a copy of the doctor's notes. A few years back, when Lori was having serious trouble with her kidneys (Lupus Nephritis), we went to both Shands and Emory. Everything at Emory was so much better than at Shands we felt it was worth the extra drive time to go there.

01/29/09 Dr Appointment - well as it turns out the Dostinex was working. It's just too bad the side effects were unbearable. The Doctor has "some ideas" of what we can do next but we have already decided to not return. We don't tell him because we want his notes on what he wants to do next to be based on my returning. We were afraid he would hold back if he knew we were not returning and we did not want that. We also want to see if his ideas were close to those of the "experts" at Emory.

Next stop - The Pituitary Center at The Emory Clinic in Atlanta Georgia!