In December 2009 the diagnosis was metastatic castration resistant prostate cancer, metastatic disease to the bone (ribs, left femur, pelvis, spine). I was prescribed Lucrin [aka Lupron in the US] injections to be taken every 6 months with cyproterone acetate cover. On April 2010 I had an ultrasound which showed a bladder mass. Underwent cystoscopy and TURBT (Transurethral Resection Of Bladder Tumour). Later I found blood clots in my urine and had abdominal inguinal pain. At this stage I was fully confident with the NH system, my urologist and oncologist were eager to take me through my condition explaining in details various procedures ,options and type of medications needed.
On October 2010 another bladder mass was found and another TURBT was performed. A bilateral ureteric stents were inserted to facilitate urine flow.
Between November and December a CT scan and Bone scan did show a progression in bone disease specially in the pelvic area.
On March 2011 I completed radiotherapy to the pelvis. It was an excellent pain relief and lowered my PSA from 30 to 12.5.
On June 2011 I had to stop taking morphine and bicalutamide as I was screened for a new drug trial called Orteronel which I commenced on August. The heading of the trial was TAK-700, C21004 which included Oteronel or placebo plus prednisone. Later I had my stents changed which happens every 6 months.
By September 2011 my condition was improving, the disease was stable so was my PSA reading which now was 9.
In January 2012 CT scan and bone scintigram revealed stable disease. Great stuff However between February and March I had a couple of downturns with pain in my right hip and groin. I was taken off Tramadol and prescribed oxynorm and oxycont which have been working well.
To concludemy story up to April I must tell you that I have no pain or discomfort. I am not taking any medications except the one required for the drug test trial. Throughout the last 2 years my side effects were minimal and some expected such as impotence, fatigue and some memory loss. My relationship with my doctors is still excellent, they really look after me and they do continuosly interact at all times. They did help me to keep positive. Feel free to contact me if you need further details or explanations.
I am still on the TAK700 drug test trial and I take diclofenac regularly twice a day. I have the odd disconfort on my right femur and right kidney , but all very bearable. Overall I have a good quality of life even if occasionally I have some bouts of mild depression. I keep a good and positive state of mind. Anyone is welcome to contact me for a chat or further information about my progress.
I am on the 3rd session of chemotherapy out of 10 and recently I had an assessment consultation with my oncologist. While he was very pleased with my condition as I have very little side effects and pain he was also very honest and open regarding what I am facing in the future. After the first radiotherapy cycle there will be 3 months of "grace" in which we can determine if the cancer has been halted or it will progress again. If needed another cycle will be put into place. After that it will be a guessing game. In reality my life span will not go further than14 to 17 months. However during this period new drugs might be available to prolong it.
I have made peace with my mortality and I have a very positive state of mind. I do not suffer from depression or anxiety like the previous years and I am looking forward to have some quality of life till my demise. I am always willing to give further details of my condition past and present to other sufferers.
Bloody hell, another year has passed by and things have changed a lot. To start with between August 2013 and July 2014, I had 6 infections for which I have been hospitalized and things went downhill phisically, not mind wise! Chemo was finished and I was put on a monthly infusion of Aredia to help my bones to strengthen. My medications were increased as some heavy disconfort assaulted my body. Oxynorm now was Oxydon 30mgs in the morning and 30 mgs in the evening. Oxynorm 10mgs used as breaktrough how many times I need. Diclofenac twice a day. Dexamethason, steroid, once a day. Colecalciferol, vitamin D once a month. Omeprazole, once a day. Laxsol, lassative, twice a day. Paracetamol twice a day. As you can see I am all pumped up! But wait, there is more. A month ago or more, I started to have some pain in my back which wasn't normal. My body Lumbar side wasn't good and my spinal cord compression was pretty bad and started to hurt pretty bad. Well, that's part of my condition in few words. As the pain became a daily occurence I got to live with it! I just hope it doesn't get worse. Otherwise my survival plan will have to be changed. Well my friends that's all for the moment, I hope you are still fighting and the mind stay clear. Ciao
[Sadly, we received the following update from Valerio's sister-in-law:]
It is with great sadness that I write to inform you that my dearest brother-in-law Valerio Longone passed away peacefully, surrounded by his loved ones at 10:30am yesterday, Friday December 19th. He fought a long hard battle and was brave and gracious to the end... a true gentleman.
Valerio will be greatly missed by his beloved wife Dawn, daughters Alexandra and Luisa and son Marcus. Val touched so many lives with his great intellect, wit and passion for food - we will miss you Brother, rest easy.
