In May 2003 I started to experience lower back pain which got steadily worse and started to affect the left hip area. When I bent forward in a certain position I got what I called the "red hot poker" pain which made me yelp. This went on for about three months with my GP prescribing pain killers and testing for a hernia. Suddenly, the GP said "I think we'll take a blood test". The result came back with a PSA of 57! Within two weeks I was in the Urology Department at the local hospital and PCa was diagnosed with bone metastases in September 2003.
I immediately started Hormone Therapy, initially Cyprostat and then Zoladex (3 monthly) I had a bone scan which indicated "hot spots" in the lower spine, rib and femur. Eventually, after various cancelled appointments, I had a Biopsy on 27 November and was told to make a clinic appointment for two weeks later at the local Community Hospital (11 December) to get the result. A doctor, who turned out to be a locum, eventually turned up and together with my wife we attended the consultation. I was first asked "Why are you here?" and on saying to get my biopsy result was told "I don't have that". I had prepared a whole list of questions such as "Do I need to see an Oncologist?", "Do I need any form of scan?" and the reply came back "If the pain gets unbearable, come back and see us"! My wife and I could not believe what we were hearing. I eventually got the biopsy result over the telephone which was Gleason 7 (3+4). In all this time I had never seen the Consultant.
To cut a long story short, I immediately went to my GP, told him the story, and requested that I should have a second opinion and, if possible, at The Royal Marsden. (My son has a French friend who is an Oncologist and he had recommended this)
Within two weeks I was at The Royal Marsden and, after an initial consultation with a Registrar, was seen by the Consultant. I was certainly made to feel a person rather than just a hospital number. That same day I had a series of X-rays and the following week an MRI scan. Subsequent to this I was given Radiotherapy (5 doses) to my lower spine.
My PSA, which had reached a high of 65, came down to 0.46 in February 2004 and by October 2004 was down to 0.24. It then started to increase again April 2005 - 0.55, October 2005 - 2.0, January 2006 - 4.2.
I was the prescribed Casodex (50mg) in addition to the continuing Zoladex, but by April 2006 the PSA was up to 9.2. Following this I had another Bone Scan and MRI scans of the spine and pelvis. This showed up signs of trouble in the right hip area and I had a further X-ray and PSA test on 1 June 2006 which was 10.9. Radiotherapy (5 doses) was given to the right hip and by August 2006 the PSA was down to 5.0. Again in September it was down to 4.2.
In January 2007 the PSA had shot up to 33.8 and I was told to stop taking the Casodex. Had an X-ray of the now painful right hip area and a further bone scan. The result was not happy reading as "Multiple osseous metastases noted. Significant progression from previous scan (April 2006) Metastatic lesions now extend well beyond the right femoral head. In addition metastases were noted in the upper spine T3 and T6". In February 2007 the PSA had increased to 59 and by mid March to 73. Had a CT scan and then at the end of March started Chemotherapy (6 sessions of Taxotere). Despite this, the PSA has continued to rise to April - 98, May - 106 and June - 115.
A further CT Scan (after the third Chemo) showed that things were stable, but slight fractures in the right hip ball joint had shown up. It was decided that the Chemotherapy was not having the desired affect and after three sessions it was decided to stop and I was prescribed the Oestrogen - Diethylstilbestrol (1mg/day) together with Aspirin (75mg/day) to counter any tendency to blood clotting.
About a week after the first Chemo session my right hip pain became much worse and I have been walking with the aid of a stick ever since.
I am now anticipating some more Radiotherapy to the right hip area in the hope that this will alleviate some of the discomfort. I am taking Ibuprofen and Co-codomol as painkillers.
Time to update I think. Since June when my PSA was 115, I started on Diethylstilbestrol and the PSA went to 79, 86, 77 and now 99 on 12 October.
I have had pains around my back and across my chest for about 6 months and an MRI scan in September detected "disease progression with new partial collapse of T6" in the upper spine. Further signs of new metastatic disease were found in other areas of the spine including T3 in particular. As a result I was given urgent and immediate Radiotherapy to the T6 area (5 treatments totaling 20Gy) and at the same time a one off blast (8Gy)to my left pelvic area which had started to give trouble. This area now seems to be OK again. At the same time as the Radiotherapy, I was given a high dose of the steroid - Dexamethasone which was then tapered off to a daily dose of 0.5mg.
I am still very much troubled by the mets in my right femur and right pelvic areas (I have had 2 Radiotherapy treatments to the right hip joint area)and at the last clinic visit on 17 October I met Dr. Chris Parker, Consultant in Clinical Oncology, based at The Royal Marsden in Sutton. He proposed that I should now have radionuclide treatment by injection of either Strontium-89 or Samarium-153 which is intended to provide Radiotherapy to all the "Hotspots" around the skeletal system. I have just had a further Bone Scan prior to this treatment which, I have now been told will be Samarium-153 delivered by infusion into the vein. It is generally less harmful to the bone marrow and white cells than the Strontium-89 alternative. I expect this to take place in the next 10-14 days. (The product has to be ordered specially from the manufacturer and made up according to my weight)
My palliative care is now administered by the Macmillan nurses based at the local Woking Hospice. This includes Fentanyl (an opiod) patches with strength just being increased to 75mcg/hr plus Gabapentin 300mg tablets (3 times/day x2) plus Ibuprofen 400mg tablets (3 times/day x1). I also have Oramorph to take as and when necessary. I recently started Zometa (Zolydronic Acid) infusions which are administered at the Hospice every 4 weeks. This is intended to strengthen the bones and can help with the pain.
Will keep you posted on the Samarium-153 treatment in due course.
George Hardy writes to say:
It is with great sadness I have to tell you that one of my friends (and a YANA mentor) has died. Peter Michaelis, from Dorking, Surrey, England, passed away on Wednesday. He had just celebrated his 74th birthday and had fought his PCa for five years.
Peter was a stalwart of the Bollocks to Pca gang [There is no real equivalent of the British term 'bollocks' in US English, but essentially it is contemptuos - 'to H*ll with PCa" might be the nearest equivalent] and we met on numerous occassions. He was a remarkable, witty, friendly, funny, really nice guy.
Damn this bloody disease!