Hello Again,

I have been off this site for some time now and thought I would update my history. Don’t think I have not been active during this time with my NET Cancer that I have luckily and fortunately had the right people at the right time.

I have been boosted at my very busy cancer hospital by two NET doctors one being an Endocrinologist and the other a Net Specialist.

I believe that this is paramount for anybody suffering from a NET to get referred to one as soon as possible after diagnosis to give you a much better chance of survival. I know that this is not always the case but if you can get a Doctor is forward thinking and you research the subject and politely advise that this is not possible for various reasons but certainly appraise them to look up Neuroendocrine tumours from recognised sites.

You can get a vast amount of information from the NET PATIENT FOUNDATION site a centre of excellence where there is a shortage in the UK. They have a booklet that can be purchased at a small cost and this is an excellent reference to NETS.

I won’t go into dates, but we are talking over the last eighteen months/two years. If you have read my story I have been very lucky as I should have passed away twice in that time, but I am still here, thank God for the last twelve years with my cancer returning after 5 years but still surviving.

The point is AWARENESS and NEVER GIVE UP. By no means has this been an easy time for Myself and my family who have also been affected by this nasty horrible cancer that grows anywhere in the body over time and mimics other illnesses such as IBS etc. I have had most of the drugs for my cancer and coped reasonably well apart from one that out of a massive long shot I was on the drug EVEROLIMUS.

At this time my immune system was low, and I caught a life-threatening brain bug Encephalitis four years ago but survived again with an effect on my family as it threw my whole body into turmoil. I had to give up work as a serving Police Officer for 26 years. I caught epilepsy and could no longer work or drive.

This was a very traumatic time but the family as still all together. It was a rare side effect but hit me very hard physically and mentally but for several reasons, determination, a great family, excellent care team along with my family.

After a period had elapsed my options were running out and my team saw that the cancer funding was moving to my region.

My excellent Specialist recognised this and sent me to Sheffield where I saw a Doctor and despite nearly dying accepted on the course when it was due to stop two weeks later by the NHS. He said to me that he would give me 3/4 treatments, and this was managed by an MDT.

I will not go into treatment details as this can be researched under PRRT Lithium 90 targeted radiation

The treatment details can be located on most trusted sites.

Despite my very poor health I was amazingly accepted for the PRRT Y90 DOTATATE Therapy treatment by Specialist Doctor. The procedure involves receiving an infusion of the hormone octreotide linked to radioactive Yttrium-90. This is made abroad in the EU and transferred to the United Kingdom where it was shipped to my hospital just in time for each treatment.

This was a massive boost to Myself and my family including my Wife who is my rock and could have never had progressed with out her love and help.

Everything was going well, and I had eventually had seven treatments that was extremely costly and provided by the fund.

There are issues why the drug was removed from the NHS as this is subject of on going discussions to have it placed back on the list as it is vital to some NET patients who need this treatment.

The treatment was centred on my lungs where the cancer had returned and was in operable.

During the time of the treatment we believe it reduced the size of some tumours and reduced the density of one of the larger ones.

I am due to have a CT\MRI in May 2018.

I had the treatment for nine months and it was decided to stop the treatment at this time due to the potential risk to my kidneys.

At this point there was no issues whatsoever with the Doctor, staff hospital or PRRT Treatment.

The results were very pleasing, and it was expected to suppress cancer for an unknown time and at this point my health was good and I could exercise and do a lot of things that I was unable to perform prior to the targeted therapy.

Everything was fine until a period later my potassium levels were starting to affect my kidneys, and this continues today with my Specialist recommending that I avoid certain high potassium foods including. Bananas, fresh yogurt tangerines and more foods that may cause me problems.

This involved frequent return visits to my hospital to have my blood levels checked on a very regular period and following sum low results I was admitted to hospital to allow the staff to administer treatments to get the amount down prior to leaving the hospital.

I was also advised to drink water at regular intervals to help my kidneys that were also struggling to clear creatine that was remaining and was causing blockages.

I have also had issues with my sodium levels.

I omitted to add that I have taken the lanreotide injections for some time that involves a cancer restricting treatment.

This has continued as it was not known whether PRRT or the Lanreotide was working. That remains the current situation and I am now on the injections below once per month at my local hospital.

In April 2018, I had a routine appointment with my endocrine Specialist who conducted a hormone test on Myself that was conducted in the Chemo therapy day unit at the hospital that took about forty-five minutes. This included injections in my arm but that was not a problem to Myself.

I received the results of the test in May 2018.

It concluded that I was producing a very small amount of the important body hormone cortisol.

This hormone is responsible for many important functions on the body and it is not known how long I have been without it?

I am now on Hydrocortisone Auden tablets three times per day and this acts a replacement for my lack of cortisol.

I have only been on these tablets for a week so at this time I cannot add anymore details at this time.

My NET Doctor concludes that my kidneys are still working but need assistance with added water intake from Myself and may need visits and treatment to my levels when they become too high or low?

The Doctor also does not believe that it is due to my NET cancer but the possibility that it may be down to my time obtaining PRRT treatment?

I know that the drug had completed trials a short time earlier.

I am still training at my local gym to keep exercising as I believe that if it is possible to maintain a healthy lifestyle to cope mentally and physically with the situation.

The two weekly checks on my levels continue and I have the fortunate circumstances of a Councillor who was adopted via my Specialist with a referral to my GP and the Counselling is known here as ‘LETS TALK’.

This is to try and help me with being kind to my family but being also able to deal with all the medical, appointments, admissions and new medications. Also, to cope with my day to day life.

This is not proving very easy at present as I have having massive personal move swings.

I do not know If my cortisol tablets are working but I have managed to cycle to the gym this morning and do an hour worth of exercise.

Please except my story as an example and at times it is very hard but please take from it what you want.

NET Cancer is an extremely hard cancer to treat due to the wide range of symptoms and where it is situated.

All I can add for some reason I am still here living a life.

It is very frustrating not being able to drive, work and ride my high-powered motorcycle with my Daughter creating great memories that are now with us.

I must be realistic and not selfish and realise I cannot do the above things anymore.

PLEASE IF THERE IS A CHANCE NEVER GIVE UP AND TRY TO GET A GOOD AWARENESS OF HOW YOUR CANCER ACTS AND THE TREATMENT OPTIONS THAT MAYBE BE AVAILABLE?

Some of my dates maybe slightly out but I have done my best to help.

Thank You

Dorro1.