Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Hey everyone.
So, I've been silent for awhile... I suppose denial is really to blame. Denial in every area of my life. I've applied for disability, and feel as though I'm losing my husband... He is so strong, and so supportive, but I believe that he's getting sick of having a sick wife, so young, and to not be attracted to her whatsoever. It's so hard, and I feel like I can't contribute at all, in any way. When I have good days, I bounce around and do laundry, clean, design, make jewelry, and it's great, but those days are so few and far between.
I started Lanreotide, and was so sick the first week, and so anxious - it really affected my emotions... then the next couple weeks were the best I'd had in two years!! It was fantastic. Then, I was reticent to get the injection in October because that first week was one of the worst I've had in my whole life, but was looking forward to feeling good. When I had the injection within 10 minutes my lips started stinging and tingling, the feeling like wearing that crazy lip plumping lip gloss :P when i went down to get my GH and IGF-1 blood draw immediately after, my blood kept clotting that it was nearly impossible to get any blood. Weird. Then my lips which were bright red, had gotten a lot bigger and were burning so bad I needed to ice them... my tongue started swelling and i was red all over, veins and blue colors started showing up on my skin. I was having an anaphalactic reaction! So that was fun.
My endo the next day was so surprised because this is such a rare thing to have happen, but the reaction would not have happened the first time for some reason, the second instead. So I can't take it any more and Octrecide is out of the equation too because I'd have the same reaction. Interestingly enough, it was working and my IGF-1 went down, but oddly my GH went up. Now that would happen on Somavert, but not on Lanreotide... peculiar. So, I've gotta start Somavert.
I'm starting it this week, tomorrow maybe. I received it all in the mail today and it was kind of shocking seeing the needles and all the medication, knowing that I'm going to be injecting myself daily... something I've always ultimately feared since I was a child. But I'll get over it... I want to feel better.
My last MRI in May didn't show any residual tumor, and as many of you know my levels were normal until then since my surgery last August. I have a repeat MRI in November so hopefully we will have more information at that point, which would mean ideally more options.
So... Thanks for listening. I really need support and community right now. I feel so alone, and feel like no one understands.
Best,
Lauren
So, I've been silent for awhile... I suppose denial is really to blame. Denial in every area of my life. I've applied for disability, and feel as though I'm losing my husband... He is so strong, and so supportive, but I believe that he's getting sick of having a sick wife, so young, and to not be attracted to her whatsoever. It's so hard, and I feel like I can't contribute at all, in any way. When I have good days, I bounce around and do laundry, clean, design, make jewelry, and it's great, but those days are so few and far between.
I started Lanreotide, and was so sick the first week, and so anxious - it really affected my emotions... then the next couple weeks were the best I'd had in two years!! It was fantastic. Then, I was reticent to get the injection in October because that first week was one of the worst I've had in my whole life, but was looking forward to feeling good. When I had the injection within 10 minutes my lips started stinging and tingling, the feeling like wearing that crazy lip plumping lip gloss :P when i went down to get my GH and IGF-1 blood draw immediately after, my blood kept clotting that it was nearly impossible to get any blood. Weird. Then my lips which were bright red, had gotten a lot bigger and were burning so bad I needed to ice them... my tongue started swelling and i was red all over, veins and blue colors started showing up on my skin. I was having an anaphalactic reaction! So that was fun.
My endo the next day was so surprised because this is such a rare thing to have happen, but the reaction would not have happened the first time for some reason, the second instead. So I can't take it any more and Octrecide is out of the equation too because I'd have the same reaction. Interestingly enough, it was working and my IGF-1 went down, but oddly my GH went up. Now that would happen on Somavert, but not on Lanreotide... peculiar. So, I've gotta start Somavert.
I'm starting it this week, tomorrow maybe. I received it all in the mail today and it was kind of shocking seeing the needles and all the medication, knowing that I'm going to be injecting myself daily... something I've always ultimately feared since I was a child. But I'll get over it... I want to feel better.
My last MRI in May didn't show any residual tumor, and as many of you know my levels were normal until then since my surgery last August. I have a repeat MRI in November so hopefully we will have more information at that point, which would mean ideally more options.
So... Thanks for listening. I really need support and community right now. I feel so alone, and feel like no one understands.
Best,
Lauren
furkidmom
wanted to reply to this, been busy packing for a vacation. Sorry to hear about your anaphylactic reaction to the Lanreotide. It does seem odd that you would have the reaction after the second shot. I'm sure it must be very discouraging to have the recurrence after the surgery. It so unfortunate that in some cases this disease is very difficult to control. But, from what I have read, the Somavert is very effective. So, i should at least work to get your IGF down and feeling better. I am also going to be starting the Somavert, but not until after I get back from vacation. Let me know how it goes.
J0KEYJ
I could fill many reply boxes on the stress of firstly getting people to believe I was not a fruit loop many symptons..I then could write about the sickness on my drug..having the d word and the toilet being my best friend.my hyper moments although will laugh at them as the drug was balancing me out..Ive had a boss in a job saying..I was healthy and strong.. that day I probably did..mmmmm you havent seen me sick and hiding out youre way on my bad days.have you seen the film love and other drugs..I cried my eyes out over that one..What I do love seeing on this forum is the support from the ones who come on for there partners it warms my heart that they want to stay with us who have this conditon because we can have such a terrible battle..Im sure they are here also needing support for them.I got the t.shirt of oh why would someone want someone like me..I have good days of running around and then I can get bad days and I get annoyed at myself ...I feel Im letting others down.sometimes I throw a strop and people think whats that about..well today Im tired..Ive had enough..the fight is to much.but tommorrow I might feel different..I have a t.shirt with out my mind back in five mins..I sometimes wonder where I get my sense of humour from..last night was halloween..My son and I decided to be like kids and we decorated the place and we dressed up..The comments were this is amazing and what alot of work..yes for us both it was and something else happened someone asked for a photo and I let them take one..they said oh it didnt come out..I replied maybe Im dead..they said they was joking..I laughed and they shook my hand.. although its a battle we are not dead yet..we are amazing ..we do have alot to fight..many tears many struggles..but you can do it lauren warmest hugs ever
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