Wednesday, April 8, 2009

Ugh.
















Just to show some comparison photos of my condition: the first is me and my wife back in 1993; the second photo is me and my Aunt in 2005.

So, got some annoying news today from my Endo. My IGF is 506... 2 months after surgery. It went from 641 in Dec '08, to 591 in Jan '09 and now 506. We are so disappointed, only because we really were hoping for good news on the numbers. I now have to discuss "treatment" next week with my Endo. Does this mean radiation and/or meds? Will I still be able to work? Will I still feel ok after going through more treatments?

This actually doesn't come to much of a surprise to me, although I was hopeful. The reason being because I still have those wierd twitches each morning that I've had for a long time, and I always knew I didn't feel right. And then since the surgery, I still get hot flashes and really do not feel much better. But I don't have that pressure in the back of my head anymore.

I went back to work a week ago. It felt good to think that I was healed. And now I am sort of confused as to what my future will be like now.
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8 comments:

  1. AnonymousApril 13, 2009 at 2:47 PM

    MrPaul,

    Don't be to disheartened, but I'm sure you are disappointed. Pegvisomant is a medical solution that results in normailisation of IGF-1 in almost ALL patients. Also, Octreotide LAR (Sandostatin LAR) is effective at reducing IGF-1 in over 70% of patients. Pegivsomant is a daily injection (just under the skin so it's real easy to do), whilst Octreotide/Sandostatin is one nest given by a nurse (but only need to ben given once per month). I have met a few people who work with acromegaly (in fact, I work full time, despite not having had an operation yet, but I'm on Octreotide/Sandostatin).

    Don't give up hope. I'd personally explore other options before any form of radiotherapy - but that decision has to be made between you and your endocrinologist.

    All the best,
    Trys
    www.acromegaly.wordpress.com

    ReplyDelete
  2. MogeJune 26, 2009 at 9:14 AM

    Read your blog, thanks for sharing your story. Hope your feeling better. One frustrating disorder this acromegaly is. Take good care.

    ReplyDelete
  3. polarchipAugust 9, 2009 at 10:33 AM

    Hi Paul,

    How's it going? I noticed you haven't posted in a while and I was wondering what's the latest news with you. I hope you are doing well.

    I remember discovering that my levels will still high after the surgery (despite the surgeon pronouncing that he "got it all!" to my family in the waiting room). I know it is a disappointing and frustrating, but Trys is right, there are lots of medications that can help.

    Best Regards,
    Ellen

    ReplyDelete
  4. SaraJanuary 5, 2010 at 3:46 AM

    I do remember the moment I was disappointed after the op, too. My peripheral vision was back right after the op, so it was a good news. However, my IGF-1 and GH were not within the expected (normal) range. I don't think they will go strait to the radiation, but they may try medication first. I'm wishing for your best :)

    Ayaka

    ReplyDelete
  5. Acro2010July 23, 2010 at 11:45 AM

    Hi Just wondered one year on what happened? Did you opt for radiation or meds? Did you go back to work? How was it returning?

    I am just about to go for radiation. I had op 14 th April 2010 felt much better then been feeling like you as though not quite right and then found that IGF levels still too high. So have opted for 3 days of Gamma Knife to get the residual tumour. Then I plan to return to work.

    Would like to know what you decided in the end.

    Caroline

    ReplyDelete
  6. Starbucks AddictSeptember 28, 2010 at 10:01 AM

    It's definitely frustrating to deal with this Acromegaly roller coaster on a daily basis. I hope you're doing well.

    Jenny

    ReplyDelete
  7. New LifeDecember 9, 2010 at 12:08 PM

    Paul,

    It must be sooo frustarting. I too have acromegaly. I had my surgery a year ago and while i have been lucky and my IGF-1 level has come down to almost normal ranges, my cortisol and wacky and is not at all under control. I wish you the best of luck, and I'd like you to know that reading your blog comforts me.

    Krystle

    confessionsofachronicwanderluster.blogspot.com

    ReplyDelete
  8. UnknownDecember 29, 2010 at 4:33 PM

    Hi there,

    My name is Rochelle. I don't know if I have contacted you in the past or not.
    I am a fellow Acromegliac and thought I would just drop by and say hi, "HI"

    Feel free to contact me anytime you might like to chat or share stories.

    Hope to hear from you.

    Regards
    Rochelle

    www.rochellebuckley.blogspot.com

    ReplyDelete

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