Dynamic contrast-enhanced MRI

My husband and I finally travelled to Toronto today.  To and from home, it was about 10 hours in the car.  It was a draining day but sunny.  Met with Dr. Gentili and his team.  Overall, the appointment was positive (my husband's words).  I was trying to think positive because at this stage of the game I am so damn fed up.  I was going into this appointment determined NOT to have another MRI and have a "yes I will operate or no I will not" kind of appointment.  Well, you think I would get the drill by now...off I go for another MRI.  Dr. Gentili is sending me for a Dynamic contrast-enhanced MRI (which I have never had in the past).  He has requested these images and stated his reasons very clear.  They do make me more comfortable.  He needs these  before he makes his final verdict on possible surgery again?.  He did explain that he does not go in blind and needs a target.  I get that.  Also, my pituitary is intact (which I want it to stay that way).  He also went on to say that he does want remission for me YAY  (what does that entail?!?!).  So, now I wait for my MRI appointment and a follow-up visit with him (all in Toronto).  Wait, wait, wait, is what I do. 

 

Thinking of you all,

Julie



COMPLETE BREAKDOWN...But Not Giving Up!!!

I have not had surgery.  It has been a very draining wait.  I’m still off work and am now waiting to meet a new Neurosurgeon, on May 12th, in Toronto, Ontario Canada.  I already had a Neuro who was going to do the surgery, but to my complete surprise, he is not.  I did not have any explanation as to why not either.  I had a complete breakdown in his office.  I was alone for this appointment as my husband and I are so used to the routine.  We were under the impression that the appointment was to discuss pre-op, book a date for surgery etc hence the reason I went alone.  Instead, he sent 2 of his fellow residents to speak with me and they would not stop talking about my bloodwork telling me that my level were fine.  I explained that my recent bloodwork was taken just a week after my Sandostatin injection.  This has been my nightmare since 2006.  The meds don’t last and I get my Acro symptoms creeping back.  Boy, was I ever in a huff and was so confused because I could not understand where all this was going?  At that point, I was shaking and on the verge of tears.  I told these resident doctors that I’ve had my consultations with Dr. Agbi and his fellow surgeon and they both confirmed that they felt confident to operate.  Well, then Dr. Agbi finally walks in to the room and just looks at me and says...SO!  I lost it.  I replied back “so?, what do you mean so???” he then just said to me: “tell me about your symptoms?” Oh my goodness, I grabbed my coat and purse and was so in shock.  I started to cry and could hardly speak.  I just managed to say: “I don’t want the operation”.  What I was trying to say was how could you get my hopes up?  You said you would operate!  I just had enough strength to walk out and while I did, I heard him say: “OK”. 

It is still unbelievable to me how, as a patient, you really need to take control.  Here I go again.  Still not giving up hope.  Truthfully, my wish is to not ever be a patient again!!!

Timeline Photo

No Radiation For Me (at this point)

Had my visit with Dr. Agbi and we both decided that surgery is my best option.  No Radiation. The residual tumour is not near the cavernous sinus and is not close to my optical nerve.  However, it is near my carotid artery.  He is confident about the surgery.  I told him that I am concerned about loss of pituitary function (it is always a risk).   I must go for more test and meet another Neurosurgeon before we prep for Transsphenoidal surgery again.  There is no date scheduled.  I am a little apprehensive but believe that this is my best option as medication is not helping me. 

Rarely Feeling Good

Hi fellow followers,

I'm just wondering if any of you have these following episodes?  I just got back from a walk (well 1hour ago) with my son around our block.  When we got home I had to go straight upstairs as I was vomiting again and feeling quite dizzy.  This has been my "normal" for many years of and on.  Does this happen to any of you?  I know it is all related to Acro either directly or secondary to it and its meds.  I'm trying to feel/be healthy but am usually faced with the above.  Now, the way I feel right now will last most of my morning grrrr.  Am I alone in this????

Surgery Again or Radiation???

I've visited my new Endo and am very happy with her.  As of today, I am back on Sandostatin.  However, I am at a lower dose of 30mg every 4weeks.  The Somavert injections were not agreeing with me.  I am so relieved to be off of the daily self injections for so many reasons.  Now, I am in the "waiting game".  I have seen a whole new set of doctors from new Endo and 2 neurosurgeons and 1specialist in Radio.  All of whom are part of my new "team".  I am so grateful for this.  From now until my final decision, I will have a team to work with.  I have already had several consultation meetings and am now awaiting my appointment with my neurosurgeon. 

Somavert daily injections

I'm sick and tired of this disease and its meds.  The daily Somavert injections of 10mg has dropped my IGF-1 levels to a dramatic low of 180 but let me tell you I feel TERRIBLE all the time.  I'm nauseated, fatigued, dizzy to mention a few and can not even go for a walk to the corner store without almost passing out and vomiting (literally).  I'm being followed with a new Endo and am in the process of meeting another new doctor to consult on Radio hopefully soon.  I really think that all these years with the meds have had a toll on my body and mind.  I'm still off work (since February) and will continue until all this is sorted out. All I want to do is get back to life with my family and get healthy. 

New Treatment Plan...

I've been off work now for 7 weeks and will continue to be off work while I start my new treatment plan.  If this does not work, we are considering Radiotherapy. 
I will still be on Sandostatin (lower dose 40mg every 4weeks instead of 60mg) and will be introducing Somavert daily injections starting at the lowest dose 10mg and see how that works????  I really thought that the increase of Sando to 60mg was going to do the trick but sadly no.  I have been off work (off and on now) for approximately 4 consecutive years because of my active Acromegaly.

Hopefully, this time around, with this new treatment plan, I will see/feel long lasting results where I can go weeks/months/maybe years without returning symptoms!!!

Thinking of all you,
Julie

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

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

5 Months Pregnant

5 months pregnant and counting. I have been quite ill throughout and am now off work until the delivery of our daughter in mid-August. I still wake up and cannot believe that I am still pregnant. I just can't wait to see her.

I'm being followed quite closely with both my Obstetrician and my Endocronologist. They both have been very attentive to my pregnancy and the fact that I have Acromegaly.

Happy Easter,

Julie

January 25th, 2010 ~10 weeks and 4 days pregnant and counting...

On December 17th, 2009, I found out that I was pregnant. Could it be true after 6 miscarriages in 5 years??? Well, it was confirmed with a blood test. I knew that I had to stop my Sandostatin and Diovan ASAP and call my Endocronologist.

Here I am today, full of nausea, fatigue and Acro symptoms already. My eye lids are slowly swelling, my nose is enlarging and my jaw and joints crack daily. It is all worth it though. The residual tumour will be monitored by Visual Field testing at the Optomotrist (No MRI for me) and lots of bloodwork. The baby is fine at this time. I had an early Ultrasound and the heart was beating and everything else was were it was suppose to be. My next Ultrasound is on Feb 10th.

My husband and I are still cautious but really hope that I carry through my 9 months!!!