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

Access Sandostatin LAR ~ FREE program for Acromegalics

I am pleased to write that after a stressful search for a nurse to administer my Sandostatin injections, my Endocronologist shared with me (which she herself just find out about this program) that the company who makes the drug supplies FREE nursing services all across Canada!!!!

I called and inquired and shared my story. The representative was very warm and understanding and very efficient on the phone. She explained that my physician needs to fill out the enrollment forms and I should hear back from them immediately. I called my Endo's office (once again it is the patient who does all the leg work), gave the great news to her secretary, and explained that the doctor must request access to the program and fill-out paperwork. I will give it a good 2 to 3 weeks for both my Endo and Novartis to get back to me. If I do not hear back from either of them, I will call my Endo's office. The patient must always be on top of things.

Access Sandostatin LAR Program
1-866-281-4688
*This program provides free nursing and financial services for individuals who use the medication Sandostatin. For example a person diagnosed with Acromegaly.

Now a family of 4

Sydney was born on Thursday August 19th, 2010 at 8:34pm. She is very healthy and a great baby. We are all happy to be home and enjoying our time as a family of 4. Labour was intense and now I am in the process of healing and have an appointement today to receive my Sandostatin injection (yipee). I am anxious to get the benefits and start feeling better. As I mentioned in my last post, I was experiencing Acro symptoms -snoring, sore jaw, bizarre sensations in my head and trouble sleeping just to mention a few. However, with pregnancy, my symptoms were 10x worse. As a result, I am bottle feeding and cannot breastfeed. Mom needs to be at her best to care for her children!

I have asked my family doctor to administer my injection as I am still in the process of seeking a private nurse. My Insurance Company has sent me the paper work for my Endo to fill-out. After speaking to a representative from my Insurance Company, my chances of being accepted are good. In the meantime, I hope to have my family doctor keep administering until this is all sorted out. Kinda sad when the patient is the one who has to be her best advocate.

All the best,

Julie

38 weeks pregnant

Been experiencing contractions but not often enough to head down to the hospital. I am still vomiting and am now feeling more Acro symptoms ie. swollen eye lids, bizarre sensation in my head just to name a few as other symptoms are also related to the pregnancy ie. swollen lips, hands, feet...just lovely hehe.

Results of IGF-1 during pregnancy:

Mar 3rd/2010- 251 ug/l & GH results 1.66

Apr 19th/2010- 210 ug/l

Jul 5th/2010- 307 ug/l

Augt 5th/2010- pending

As a result of my IGF-1 going up it was decided that I will resume my Sandostatin treatment every 3weeks starting mid-september and not wait for the August 5th bloodtest as it takes 1 month for results. I will at least have a few weeks to breastfeed. My husband and I are really ok with the decision as I do not want to fall sick again because I need all my strength to care of our newborn.

I also was told that I am no longer able to use our local clinic to receive my injections. It is no longer in their mandate to offer clients with intramuscular injections that service (I am very very disappointed with that news). They want a family member/friend to inject me (totally out of the question!) or that I pay for a private nurse in that case I can use the clinic. I am in the midst of trying to find the best possible option for me and hopefully the service will be covered by my insurance company. I will keep you posted both with the birth of our daughter and my search for a nurse.

All the best,

Julie