Time out from Acromegaly

So i haven’t written anything about myself for a few weeks now so thought it was time to knock something out.

Well it’s actually been a weird few weeks and in which time i’ve had a fair few blood tests, an mri, what seems like a lot of waiting around, some sickness and oh some wildlife action. This latter is the most interesting!

In terms of treatment, i think i am due to start treatment this coming Friday and i have opted to take part in the Phase II ATL1103 drug trial for Antinsense.

Over a couple of weeks, i was given other treatment (chemical) options via my specialist at The Christie but given that The Christie is also HUGE on research and that my specialists are so respected in their respective fields of endocrinology, pituitary tumours and acromegaly i wanted to do my bit.

“ATL1103 is is a second generation antisense drug designed to block growth hormone receptor (GHr) expression thereby reducing levels of the hormone insulin-like growth factor-I (IGF-I) in the blood and is a potential treatment for diseases associated with excessive growth hormone and IGF-I action.”

This new drug works differently to other current drugs used that act as a synthetic analogue of somatostatin, a naturally occurring inhibitory hormone which blocks the release of several other hormones, including growth hormonethyroid-stimulating hormone (TSH),insulin and glucagon.

Medication for acromegaly may decrease GH secretion and production of IGF-1

Whilst you are reading, alternative chemical treatment options for acromegaly are:

Somatostatin Analogues — Somatostatin, a naturally occurring regulatory peptide, acts on receptors in the pituitary gland, causing an inhibitory effect on the release of many pituitary hormones, including GH. Somatostatin analogues mimic the body’s own natural behavior in the treatment of acromegaly1,2 (octreotide / lanreotide)

GH Receptor Antagonists — Suppress IGF-1 secretion by competing with GH at the GH receptor binding site3 (Pegvisomant)

Dopamine Agonists — Proven occasionally effective in selected patients, including those with modestly elevated IGF-1 levels, these agents lower both GH and prolactin levels3,4 (cabergoline)

Basically, ATL1103 is a completely new way of reducing these potentially damaging growth hormones that induce excessive hor-moaning! ;)

Yes, i stil have some residual (functioning GH/IGF1) pituitary tumour. Following the recent MRI, as i understand it, it wasn’t too easy to spot any specific tumour mass but i havent as yet had the full explanation of the imagery from Prof himself. It may well be that there is fluid or perhaps that there are tissue changes hiding what may be a smaller tumour mass where my old tumour was. I should find out more on the mri imagery this week.

Yes, this residual pituitary tumour is causing the acromegaly to become active and uncontrolled it is/maybe/will do all sorts of nastiness to me. If you are really that interested in the Clinical Manifestations and Diagnosis of Acromegaly then click the link and have a read from top to bottom. Some pretty serious potential risks hence the importance to get this controlled chemically short term and it may result in radiation treatment down the line.

Before moving away from the treatment subject, i will be asking Prof if i am allowed to discuss the results during treatment on this blog before posting anything in the coming weeks. Professional courtesy i think we call it in the medical fraternity :)

Now you are probably asking what the flip has all the above got to do with time out from acromegaly? Well absolutely sod all :) This is my point.

Anyone with an active pituitary tumour and a related condition such as acromegaly needs to take time out for themselves. Why?

Potentially it will take over your life, if you let it and you can become totally self obsessed. Luckily I think i’ve been ok but i can absolutely see what an impact this last twelve months has had on my character, soul and spiritually. Yes i am a soulful person and i like spirits!

Seriously though for anyone dealing with a chronic illness of any sorts or any other life changing event do your best to take time away for yourself and do something that takes you away from the stress, the what if’s and all the hassle that comes along with it. If you dont make time to smile, i guarantee that these things can and will bring you to your knees at some point. Maybe not straight away but at some point you risk a meltdown. It may manifest itself in irritating your clinical symtoms, personal relationships or to the extreme lead to depression and anxiety.

So, what do i to to keep positive and keep a lid on things? Dead easy it’s free, you can’t get in too much trouble and you can do it whenever you want…….get out into the fresh air, look at the world, nature etc and BREATH! Putting everything else to the back of your mind and chill!

Yes this is my advice so get out there, look at nature, the sky, wildlife or even the internet! Do whatever you can do to adapt your mindset for a few hours. It works for me!

If you didn’t know I’m big into both my naturist exploits ;) and my wildlife! Here’s a small slideshow of photos to back this up and they are all my own work. If you get from start to finish well done…….you are on the road to positive thoughts.

To speed up the slideshow just click a picture with your mouse and it will change much faster.

Feel free to find out more about wildlife in wigan and and join me on Facebook.

 

On a last note, if none of this has made any sense then apologies, it works for me!

 

One Comment

  1. I attended hospital yesterday and had the opportunity to review all my recent MRI imagery with my specialist. It was really great to go see the changes compared to pre/post-operation. You can clearly see significant tissue change following the removal of the pituitary tumour and you can clearly see remaining tissue.

    It may be down to the contrast that was injected for the MRI to highlight a tumour but it’s just too early to tell exactly how much of the remaining tissue is residual or perhaps new tumour.

    Suppose you should take into account that the tumour removed had been growing for a 5+ years so expecting to see change in 6 months post operation is silly. It’s clear that the acromegaly is active hence the elevated IGF1 serum levels but things could be a whole lot worst and i’ve started treatment so i’m happy with all of that.

    In terms of the new drug trial, taking into account the importance of this study I wont be posting any specific updates about the trial until after the study is completed.