Back in a bed (that’s too short)

So in the last week i have been at The Christie twice.

I have to admit that I rather look forward to going to my appointments. Always made to feel really welcome and i’m given the very best in care. So very lucky to have been referred to Prof and his team!

Firstly, i went in for a short synacthen test to check my cortisol levels then again for a few hours today to complete the Oral Glucose Tolerance Test for Acromegaly.

The results should be in within the next week or so albeit i have already been told that i’m not technically in remission.

Specifically, the removal of my functioning pituitary tumour in November last year hasn’t completely normalised my IGF1, GH and Testosterone albeit there were massive improvements (prolactin level is now normal and i had a prolactinoma).

It follows that there may be remnants of the tumour still active. Perhaps the bit that was wrapped around the carotid artery or even the tumour had invaded cavernous sinus but these are just a guesses.

Can acromegaly function without a pituitary tumour?

Yes, i did some digging and apparently it can result from a tumour elsewhere in the body that secretes Growth Hormone such as lungs, adrenal glands and pancreas. Read more and click this link.

What were my last test results?

  • My last IGF1 was 517nmol/l post surgery in December 2012 (1500+ pre-surgery) Current result given 19.3.13 is 411 nmol/l
  • My prolactin was 113 in December 2012 and was 148mU/l two weeks ago (2000+ pre surgery) and result given 19.3.13 was 129 mU/l
  • MY GH level was a mean of 1.46 three weeks after surgery (5+ pre surgery) Current result pending. 
  • My cortisol was 408 in December 2012 Current result is within normal parameters and fine.

I’ll update these results when they come in.

Some interesting news was that Prof and Nurse M mentioned that dependent on my most recent test results, but given the levels post surgery, i may be eligible to take part in a drug trial as part of a new chemical treatment for Acromegaly. The drug is called ATL1103.

It’s a European trial of 30 Acromegaly patients and if its an option open to me i would love to get involved! Will see what happens but i’ll choose sensibly given the information. Anything that supports research into acromegaly sounds good to me.

The alternatives to the above (if i need treatment ;) are taking a somatostatin analogue like Octreotide which i was on last year. Nasty side effects and if i’m correct it didn’t do much for me. The other option might be taking a longer acting somatostatin like lanreotide.

After the above treatments are exhausted i understand that the next options dependent on my primary healthcare trust (Wrightington, Wigan and Leigh NHS Foundation Trust) is either radiation treatment or another drug called Pegvisomant.

Despite all of the above, I do feel much better then i did before diagnosis and i’m sincerely thankful. This last twelve months has changed me for the better and I am looking forward to firing on all cylinders sometime soon!

Oh later this week i am back at The Christie for a small operation to remove some polyps under general anesthetic :( Not looking forward to it.

 

 

5 Comments

  1. Great news Richard! Hope you get on this trial and hope its successful. Thanks for all your updates. I’ve just passed your details onto a lovely lady near me in Durham! She’s recently been diagnosed with acromegaly and having surgery on the 28th. She’s on octreoride at the minute but says its not bringing her levels down much. Good luck Richard xx

  2. Hi nice to read your comments i have been diagnosed recently with acromegaly and am to have operation on the 28th march im scared stiff im not imoriving with the octreotide injections so im hopefull the operation will help this is a scary thing to go through val bell kindly gave me your details i wish you good luck.xx

  3. So most of the results are in. Testosterone, Cortisol and Prolactin are now all within normal range :) IGF1 remains elevated showing that some remaining tumour is active along with the acromegaly. Now waiting on the growth hormone result from the OGTT which has been delayed. I called my specialist Nurse from The Christie on Monday and i am booked to go back to see her and The Prof in two weeks time. She thinks that i will more than likely start treatment that day which will work at getting things under control. Be that Octreotide injections, a longer acting version or the new drug ATL1103. When i say control i mean focus on active/remaining tumour and suppress IGF1 and GH (i think). Basically, there’s something going on and they will get me sorted which is great. Positive thoughts :)