My and my families 11 year story with NETS cancer.

Hello All,

I am still here thankfully fit and well.

As i stated i have now been at it for eleven years and it has been very hard on my family but i dont want this to be sad but up-lifting and inspirational.Thank you to all my kind wishes and also for your caring support and comfort for us. It is very kind you taking time to place some nice words.We appreciate it very much.

Yes, things have been hard for me and the family but my moto 'NEVER GIVE UP'. With NETS what is required is awareness of the disease and the sneaky and nasty way it presents itself often sadly too late to find it. I have done some research on the subject in conjunction with the NET Patient Foundation a great place to go when you need information and help. However, the

overiding message from GPs to the top Specilaists is AWARENESS. it is amazing when you delve down to the detail you will be amazed that the ones who dont know a great deal is very surprising. Sadly, the death cases are rising because more awareness is spreading about this cancer. Do not get too down because new treatments are being worked on across the world and more is becoming known about NETS. You now have teams in The Crick Centre in London, a multi million pound building where experts who are coming from the UK. Europe and across the world to put their specilislism together and work in teams sharing their knowledge to work on all these cancers. So dont loose hope as i will summarise my up to date condition. If you read my story you would know that my tumours where acting up and producing too much Calcium in my body for it to cope with and it was starting to worry the Doctors as no treatment would stop it and this involved a large amount of hospital visits but still it kept rising and my treatments were running low, obviously a serious concern for us all. It was at that point my proffessor realised that one of my tumours began acting up requesting too much calcium for my body and this was beginning to threaten my life. Not long after this point he realised that the budgets for treatments was moving regions fro Sheffield to Hull. In what i would clearly state to my body and life he sent all my records to a Doctor in Sheffield wo was dealing in PRRT Y90 Docatate Theraphy that involved infusion of the drug and a fluid to protect my liver. I was very lucky as of October 2015 NICE removed it from the NHS funding list. I saw the Doctor and at that time i was very poorly noy being able to walk. talk very well and unasble to fasten my shirt or trouser buttons. My family helped me but there were also becoming vwery worried for my health and added pressure was being placed on them. I could not believe it as the Doctor took a chance with me and placed me on the PRRT treatment in September 2015 a few weeks before it was removed from the NICE list. I was amazingly lucky as i was being considered for pallative care such was my health. There is plenty of activity on going to have the treatment placed back on rthe list for other patients. In respect of Myself i had one treatment and within a week i felt subtle changes and my health improved dramitcally. Almost everthing started to return in respect of my bodily functions. I owe the Doctor a vast amount of gratitude. I am now part of the gym and can row 6000 mtrs, cycle 5 miles run 3 miles and do plenty of all round body work. It has changed my life from near death to a total new one with my great family. All i want to say to others is never never ever give up hope because luck could be just around the corner waiting for you. You must also not loose your passion to survive but keep on fighting all the time. I still have my dark times and axiety and depression from time to time but this is all part in enduring the disease that appears quiet and steady again almost allowing me to live a normal life again. I have had 8 treatments at 3 monthly intervals and things fingewrs crossed are going well so far. For anyone interested puy PRRT into You Tube and there i9s lots of information. Sorry for going on but i wanted you to know that there is plenty of work going on so i just keep my head down and keep moving with a bit of luck. My very best to you all and wish you the best. If you dont get a NET Specialist then try and gwet one who knows what is happening and can really help you all being well. I have been very lucky but we have endured a lot of worry and concern. Thank You. Andy xx DONT GIVE UP.

  • Hi Andy, 

    Good to see you on the forum again :)

    Thank you for sharing your experience with us. I think it will really help others to know that there is hope and hopefully inspire those who may be feeling low or having a bad time to not give up either. Do join in on other discussions where you feel someone may be in need of your strength and positivity as I'm sure they would appreciate hearing from you. 

    I'm glad your treatment is going well and I hope it continues to do so. Keep us updated with your progress when you can Andy, we'll be thinking of you.

    All the best,

    Steph, Cancer Chat Moderator

  • Hello All,

    I am still here and moving forward.

    I will try to give you an update as i have had another little hiccup but hopefully i have worked with great people and sorted my problem with rising potassium to dangerous levels 6.4 and 7 is cardiac arrest territory.

    I have been informed my kidneys are damaged belived through radiation and scans all given and taken in good faith to help me. I dont like to tempt fate but my NETS are quiet.:)

    Thankfully, my kidneys are damaged but are still working. I have an excellent support team at my local cancer hospital.

    That is it for now.

    All the very best to all you NET Patients and families.

    Andy aka Dorro