Apologies for the dramatic title of this post but it was clearly an attention grabber
Well we all have our little hurdles and challenges in life and i know people right now going through considerable challenges with their little boy’s health but anyway life is all about dealing with things that come your way and appreciating those special people around you.
Well for me, i’ve been thinking a lot about the special people over at The Christie and my treatment. I’ll come back to this shortly as this links back to the title…
So where am i up to in terms of treatment for my residual pituitary gland tumour and related acromegaly (excess igf1 hormone levels)?
Well the residual tumour is measured by mri’s. I had one in september and i don’t think i’m scheduled for a month or two yet. No symptoms to suggest that there is any growth and igf1 hasn’t shot up.
I’ve been on Sandosation LAR monthly injections 10mg for three months but in December my igf1 levels albeit better, where still hovering around the 360 mark which is out of range for complete chemical control. So it was decided that at the end of December the above dosage would be increased to 20mg a month. I had no prior reactions to the drug and it seems a natural progression.
During exam time i noticed that i was getting tired and my sleep patterns were getting a bit weird. I was tempted to blame my condition but i’m not going there!
I had my increased dosed injection two weeks ago of Sandosatin LAR and you can see here a video of what happens as it’s a deep intra muscle injection.
Then a day after my injection, i came down with a strange bacterial infection which i’m told was nothing to do with the injection so if you are a patient don’t jump to any conclusions about Sandostatin.
This bacterial infection literally wiped me out for ten days required three gp visits and lots of time in bed. I came out in a strange rash over my chest and tummy, had a tickley cough and a nasty throat infection. God knows where it came from but my GP, who is amazing, saw me super quick and put me on antibiotics called co-amoxiclav made by Sandoz 500/125g 3 a day. After a week it’s getting me right but I really haven’t been this off since before i was diagnosed!
Oh additional good news is about my testosterone levels which have so much to do with how you are as a bloke…..well on presentation at The Christie i had practically none in my system due to my pituitary tumour and acromegaly. After neurosurgery levels came up very so slightly and have stayed way out of normal range for a long time. Then in December hey presto after at least two years and probably more my testosterone level shot up over the normal range so no need for any replacement which was on the cards!
In addition to this, regular readers may recall that my condition has caused issues with my jaw and specifically prognathism over a few years. This is all in hand and over 18 months i’m having all teeth re-alligned then double bilateral jaw surgery to correct the asymmetrical cross bite.
The first stage of this long process is the fitting of a pallet expander which i had put in last week. Search on youtube if you want to know more. The initial spring tooth separators that were fitted before the expander did cause some discomfort but all ok now. Must say that I am not looking forward to braces on both sets of teeth nor the surgery but hey ho! I am so lucky to have the NHS and the healthcare professionals that i am under.
So going back to the title of this article “pounds not pity” well quite simply i wanted to do something to both thank and help The Christie’s charity objectives, for the care that i get at their Endocrine Unit so this year i have signed up to run three runs for The Christie to try and raise £2,500.00 for their new children’s oncology unit.
Update: I am specifically running as part of Barry’s Project 150 team and the target is to raise £150k for an area within Christies new children’s oncology unit (Google search for Barry’s Project 150 to find out more, it is truly an amazing objective).
I am running:
* The Greater Manchester Marathon / 26 miles / Sunday 6th April 2014
* BUPA Great Manchester Run / 10k / Sunday 18th May 2014
* BUPA Great North Run / 13.1 miles / Sunday 7th September 2014
Feel free to click the above link to find out more about the run’s that i am doing and please consider a small donation to encourage me on my way!
You may have heard of this new oncology unit at The Christie as there is a lovely chap called Barry Thompson who is trying to raise £150,000.00 for the hospital as part of Barry’s Project 150 fundraising.
Thanks for reading.