Acromegaly Signs and Symptoms

Before:

After:

Better?

Sorry I have been posting SO MUCH lately, I guess I have too much time on my hands... I like to think of my body transforming into a Sea Monkey body because my hands and feet are so well suited for swimming now.

Is this the new medication you guys were talking about?

"Somatuline® Depot (lanreotide) Injection is now FDA-approved and will be available in pharmacies the week of October 15th."

"(also marketed as Somatuline® Autogel® outside the
United States)"

While I'm at it

I found a calendar on the Pituitary Network's website. They also listed this event:

SAVE THE DATES
Pituitary Days 2008
Laws' Lecture Series
University of Virginia Pituitary Clinic

Pituitary Days 2008 and will be Friday, April 11th 2008 and is designed for patients and their families. The second meeting is the Laws' Lecture Series and it will be Saturday, April 12th and is a CME-sponsored event for physicians and clinicians.
Details to be announced.

More Date Saving (New York)

Sunday November 11th, 2007 the Brain Tumor Foundation is having a Brain Tumor Awareness Day. I know a pituitary tumor isn't exactly a brain tumor, but they let me go to their support group back when I was first diagnosed so if they'll accept us, we can accept them! (And I'm sure they're happy to accept donations from anyone.) Actually, meeting people at their support group was really nice. I was so desperate to find anyone with any kind of similar experience that meeting people who had gone through the whole surgery ordeal was very comforting. Details and RSVP on their website.

Save the Date (Los Angeles)

Cedars-Sinai Pituitary Center is having a Pituitary Patient Awareness Day on Sunday December 9, 2007, from 9:30 AM-3:00 PM. I know because they sent me a a letter, but I'm having trouble finding any info about it on the web that I can link to. Okay, I'll retype the stuff here:

"Please Join us for an informative day- current treatments, follow-up care and emotional well-being. Friends and family welcome!"

You're supposed to RSVP but I feel weird about posting someone's phone number on the web without asking permission first, so if you want to RSVP you can email me and
I'll send you the info.

Familiar Story

This story showed up in the feed that was added on the right hand side of the page....I thought the author did a good job of describing a classic, long-undiagnosed case of acromegaly.

My First 2 Weeks with Sandostatin

The following might be too much information for most people, but as I was experiencing extreme side effects, my boyfriend was desperately searching the internet to determine if the severity of my side effects were considered typical. He had trouble finding comments from people who were using Sandostatin to control acromegaly, so I thought I'd toss my experience out there.

Sandostatin has a very contradictory list of side effects- it's almost comedic. Sandostatin is sometimes prescribed to control diarrhea, but when used in other situations in can cause diarrhea It can also cause constipation. You can get Hypoglycemia or hyperglycemia.

I had the sub-cutaneous test and experienced slightly loose stools, but other than that, I was fine. I therefore assumed that everything would be fine with the LAR (long acting) dose. Here's what happened:

Friday: Got the shot. Soreness from injection made it hard to go up stairs/stand up/sit down. Could walk OK but felt like I looked like an old lady. Slightly traumatized but overall, totally fine.

Saturday: Felt better, soreness pretty much gone. Noticed that joints seemed to be "popping" more- hips, shoulders felt looser.

Sunday: Felt good enough to go to ballet class. Noticed that feet and spine seemed more flexible.

Monday: Felt fine. Looked for signs that skin was less oily, but didn't see any dramatic difference.

Tuesday: Felt fine. Went to ballet class. Noticed that overall, tendons were looser.

Wednesday: Ate fast food for dinner. Went to bed feeling with stomach feeling gurgley, woke up in the middle of the night with gas, abdominal pain, chills, and diarrhea. Blamed fast food for giving me food poisoning.

Thursday: By midday, my intestines cleared and I felt good enough to have carrot cake after dinner. That evening, I felt abdominal distress again, and I suspected the carrot cake was also tainted. Did not sleep all night because of discomfort and diarrhea.

Friday: Like the day before, felt fine by midday and ate tuna salad at dinner and had same intestinal problems as the previous two nights. I blamed the tuna salad but started to suspect that something besides food poisoning might be creating the problem.

Saturday: Ate home cooked dinner at Aunt's house: Turkey, mashed potatoes. gravy. Slept through the night for the first time since Wednesday and digestion was almost normal. Thought maybe I had gotten through the food poisoning.

Sunday: Felt a little better. Went to hot tub/sauna spa with friend. Ate at salad bar buffet for dinner. Start to feel worse almost immediately after dinner- gas, diarrhea gurgling, chills, and sweats again. Chewed on some immodium tablets which helped temporarily (a few hours after each tablet), but couldn't sleep because of discomfort and going to bathroom.

Monday: Felt horrible again (still cramps, bloating, diarrhea Tried to take another immodium tablet to feel better. Within 10 minutes of taking tablet, ran to bathroom and projectile vomited a huge quantity. Feel better immediately, but was still concerned about diarrhea. Called my doctor, who believed that it was a side effect from medication, recommends drinking electrolyte drinks, and suggests going to ER if I can't keep liquids down. My doctor assured me that the side effects would gradually lessen. Dinner: rice "chowder" soup, carefully chewed.

Tuesday: Ate only soup, bananas, tea with honey and electrolyte drinks. Headache and tired but diarrhea is limited to the morning.

Wednesday: Still had diarrhea in the morning. Consumed only soup, tea, bananas, drinks, and really soft foods. Had weird burps.

Thursday: (Today) Still got diarrhea in the morning, but at least I can sleep through the night and I can eat a few things. I've lost 3 lbs, and I still have a headache whenever I stand up. I have to talk to my doctor next week about whether or not I should try to continue with Sandostatin. Of course I want it to be working but I kind of hope that it doesn't so I don't have to risk going through all of this again. Maybe it will be better once my body adjusts to it.

largest man in the world; a mystery

Watching a special on TLC about the largest man in the world with a pituitary brain tumor that is very strange. He was diagnosed when he was 12 because of headaches. His brain had swelled to dangerous levels so they implanted a tube in his brain to drain off the fluid caused by the growth of the brain tumor. He has had no treatment since then but has kept growing. In fear for his life an endocrinologist who heard of his case went to visit the man and found that he had no abnormal levels of GH or IGF-1. They did an MRI and found that the tumor had died on it's own for reasons they cannot explain. So the big mystery is WHY DID THE TUMOR DIE? HOW? How did relieving the pressure on the brain kill the tumor? What is the link? Anyone care to speculate?

Hypochondriacs, Rejoice!

I was listening to the radio today, and the author of the book pictured above was talking about all the crazy stuff in our environment that causes cancer or may cause it. I know we don't have "cancer," but we all had tumors, which is close. I think about what might have caused my tumor all the time. The doctors all say, "A single cell mutates, and it goes from there..." but that's not really an explanation. What caused that mutation? For most people, it's not hereditary, so it must be something external. I've talked to some of you about your suspicions, and I totally believe they are true.

Since the tumor, I've become pretty paranoid about freaky chemicals and any kind of radiation. I am frequently amazed at how indiscriminate most people are about the fumes they breathe, the chemicals they slather on their skin, and the "food" they eat. I'm all for the wonders of modern technology, but I also agree with the author that we we need to be more careful before we determine some newly synthesized molecule that has never existed before is "safe." The medical world seems to focus so much on treatment, where's the prevention aspect of it?

If you're interested, you can listen to the radio interview here. There is some discussion about hormones and chemicals that act like hormones being all over the place and wreaking havoc. I wonder, has the prevalence of acromegaly gone up over time? I would hope that detection and diagnosis is getting better, which might make it seem like the numbers are going up, but is it actually occurring more?

If anyone wants to read this book and write a review of it here, I would love to know more.