A couple of months ago, I was not feeling well and instinct told me that my GH was up. Bloodwork confirmed my suspicions. I was previously getting 30mg of Sandostatin every 3 weeks and as of last week, my physician increased my dose to 60mg of Sandostatin every 4 weeks. Since my new dosage, I've been feeling amazing. I was also sent for an MRI and am now awaiting results -hoping that my residual tumour has not grown. For now, I am coping with my new dosage and only working 3 days out of 5. I will visit my Endocronologist in the following weeks to discuss the MRI results and will ask for a repeat IGF-1 bloodwork. In the meantime, my Endo requested that I continue only working short weeks until my results are in from the MRI. I am definitely OK with that.
On a much brighter note, I had a wonderful visit with a new found "Acro" friend. Jenna has recently moved to my hometown "Cornwall" and through our mutual nurse we have been connected. As you can see, Jenna was diagnosed at the young age of 15 and is now 27 years of age and very beautiful. Our morning together was comforting as we shared our stories with this crazy disease.
We shall keep in touch for sure and I am blessed to have met this beautiful, well spoken young lady.
Cheers,
Julie from Canada
4 comments:
So excited you got to spend some time with an acromegaly friend in person! Great photo of everyone!
Was there any side effect transitioning from 30mg/3 weeks to 60mg/4 weeks? Does the injection site get sore, since (I assume) you do both sides every 4 weeks?
Anyway, glad you are feeling great! Such great news!
Hi Ellen,
Yes, it is great to have Jenna. But I also told her how wonderful blogging and finding all of you was for me for many years. How are you?
I did not feel any side effects. If anything, I felt amazing within a day. I was expecting the worst like vomiting and racing heart. Did not experience any. I've never felt so wonderful in all my years of getting Sandostatin. I do have to get 2 injections. 30mg in one cheek and 30mg in other cheek! So far, no soreness. I do go for ultrasound therapy on my cheeks (Chiropractors)and I swear by it. It breaks up the scar tissue.
Thanks for writing.
Julie
That's great news Julie!! I'm so glad to hear it :-) You were one of a few people who inspired me to try to increase my dosage last year after my doctor at UCSF told me I was "maxed" out at 40mg every 4 weeks. I went to 40mg every 3 weeks and I feel a lot better, still not fully normal though. My GH and IGF-1 are in the allegedly "normal" range for me though.
I'm surprised the doctor initially didn't want to change your dosage then jumped from 30mg to 60mg?? How did you doctor calculate that? Based on labs, or just experimenting? That's great that you found Jenna too. It's definitely helpful to meet another acromegalic in person. It helped me to feel more like a normal person, instead of a person hiding with this disease. Keep us updated!
Hi Jenny,
Great question about the dosage increase. To be honest, I went blank when she expressed the dosage increase. I was suggesting a 10mg increase but she went on to explain that 60mg every 4 weeks would be better and after that I don't quite remember her reasoning. I think at that point, I just left it in her hands as I trusted her. Besides, sometimes I have to just stay quiet and let her do her job hehe.
I'm trying to figure out why I was feeling so great with the new dosage last week and as of yesterday I was getting that fog like feeling again in my head. I worked 3 days straight this week and maybe it was too much? Does this disease really affect our capabilities to work full-time? I'm really starting to wonder.
Having Jenna in Cornwall is awesome. And having the ability to keep in touch with all of you is also a great comfort.
Julie
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