MRI machine to arrive in my hometown by December 2012!!!

Jenna and I have been happily supporting the fundraising of a new state of the art MRI machine that is slated to arrive in our hometown by the end of 2012.  We have been privileged to share our story of Acromegaly in a variety of outlets such as:  radiothon; Community Wide Meetings; Publication; and now a video and we are asked to continue being involved.   We are doing what we can to contribute to this very important iniative to get this new state of the art MRI machine in our local hospital and to make it even better, we are creating lots of awareness for ACROMEGALY.

Below is the link to the video...Enjoy:
http://www.youtube.com/watch?v=ebq2OVoptsM&feature=plcp


Julie

"Rare diseases are rare, but rare disease patients are numerous" Orphanet

I was so pleased to stumbled across this press release today.  I only shared the first paragraph.  After clicking a few times, I was pleased to see "Acromegaly" as a documented Rare Disease in their international link.  I went ahead and gave my name to ensure that our "Canadian launch of Orphanet" has Acromegaly on their radar.  I will keep a close watch for an email response and will keep you posted.

P.s.  I'm still benefiting from my 60mg of Sando every 4 weeks.  I go for my IGF-1 bloodwork next week and will discuss the results during my December follow-up appointment with my Endo.

All the best,
Julie




Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.

http://www.orpha.net/consor/cgi-bin/index.php?lng=EN

 OTTAWA - The Honourable Leona Aglukkaq, Minister of Health, today announced two initiatives aimed at bringing new hope to Canadians with rare diseases: the Harper Government will create a new approach for the authorization of "orphan drugs" and announced the Canadian launch of Orphanet - a comprehensive database of information and services for rare diseases.
http://www.hc-sc.gc.ca/ahc-asc/media/nr-cp/_2012/2012-147-eng.php

60mg of Sandostatin LAR every 4 weeks is working for me!

It has now been a couple of months since my new increase and I feel wonderful.  Actually, I even stopped taking my blood pressure meds as my BP was too low.  When I asked my Endo if there was a recent study that allowed her to increase my dosage she explained that she is just experimenting right now.  It is an "old" drug and she is trying to find the right dosage for me.  Well, 60mg every 4wks works for me.  My GH levels in January 2012 were 4.37 and IGF-1 were 291.  After my increase dosage my GH levels dropped dramatically to 1.31 and my IGF-1 level went down a touch to 282.  What matters to me is not so much the numbers but how I feel.  For now, we are staying with the new dosage and will have repeat GH and IGF-1 bloodwork in December 2012.   My MRI results did not show any signs of growth.  Actually, they had difficulties seeing my residual tumour. 

Smiles,
Julie

Dosage Increase and Acro support in my hometown!!!

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

September 2011 marks 5 years post surgery

Haven't posted in a while. Being a mother to 2 children keeps things very busy. Overall, my health has been good. I have been back on my Sandostatin injections every 3 weeks (20mg) right after the birth of my daugther (Aug 2010). My IGF-1 levels have been dropping and returning to normal. Wow, was looking for a picture to post of my family and could only find a christmas picture. I will use this picture taken at Easter of my daughter and I and will update hopefully soon (hehe).

IGF-1 results:

March 2010: 251

April 2010: 210

July 2010: 307

August 2010: 518

Sept 2010: 447

Jan 2011: 275

April 2011: 254

Happy summer and best of health to you!

Me with my kids. Time flies with 2. Sydney is great. We have lot of fun together. She is going to be 4 months on December 19th. Devon just adores his sister. He is a great big brother and loves to help.

I did receive results of my last IGF-1 tests: August was a reading of: 518 and September was: 447. I was just at the Lab this week for another IGF-1 blood test to see if my levels are going down? They are still quite high for me. Pre pregnancy, my levels were in normal range, around the 200. I'm also scheduled for my MRI on Tuesday December 7th. I'm looking forward to the results. I'm still experiencing certain symptoms and hope that it will be rectified once my levels are stablized. Once I get my latest IGF-1 results and the results of the MRI, I will be scheduling an appointment with the Endocronologist in Montreal to discuss maybe increasing my Sando for a while until I'm back on track.

The holidays are fast approaching. May you all have a wonderful Christmas with your loved ones.

Private Nursing Services Arranged...YIPEE

Great news, within only 2 weeks of filling out the Enrollment Forms, I was set up with a wonderful Nurse who comes to my home to give me my Sandostatin injections...all FREE of charge thanks to Access Sandostatin. The program also involves follow-up phone calls, assessments and replacement drugs if the nurse should happen to damage the vial.
Another great thing about this program is I will have the pleasure of having the same nurse administer my Sando. These nurses have had intense training on properly administering the drug.
I, along with my family, are so thankful for this wonderful service. I've been spreading the news...local pharmacy, family doctor ....

Julie