My age at diagnosis was 68; I am presently 73. I was diagnosed in December 1996 with a PSA at diagnosis of 145; Gleason grade of 7 Staging: T4. The Treatment I commenced was radiotherapy, followed by hormone therapy.
During April 1993 I had an open Turp for an enlarged prostate. A biopsy of the gland revealed no cancer.
During June 1996 I started passing blood in the urine. A cystoscopy revealed polyps on the bladder wall which the urologist cauterized. While this operation stopped the bleeding, the same problem occurred six months later. Another cystoscopy/ cauterization was performed and for the first time a PSA, which then read 145. A biopsy followed and this revealed prostate cancer.
What a traumatic period in my life! For five (5) days I was so ill that I thought I was going to die. Thank God for my Psychologist daughter who counselled and helped me over this period. The Urologist at the time recommended radiotherapy.
In January 1997 I attended a hospital's oncology department for treatment plus a course of Androcur every two weeks. At the end of the treatment my PSA had dropped to 11.9 - I had never really come to terms with the fact that I had P.C. until the day when my wife came across a short article in one of the "Quality of Life" magazines relating the experiences of Michael Korda as set out in his book "Man to Man, Surviving Prostate Cancer".
After reading his book I decided to make an in-depth study of the disease and found that it was not as frightening as I, in my ignorance, had thought. In addition to all the information given to me by my NEW Urologist, I started my own library, mainly information extracted from the internet. Now, I don't profess to be an expert on the subject of PC, but I wish I knew back in 1996 what I know now.
Undoubtedly my cancer problem has played a major part in the changed way of life of my wife and myself. I've been on hormone therapy following the 33 sessions of radiotherapy in 1997.
At present my PSA is 0.5 - sure, loss of libido and sex is now a way of life - but, hell, it's not the end of the world - thank God I have a loving and understanding wife. Apart from the impotence aspect I still do the things I did before - gardening, golf, etc. I even undertook the 'Race to Rio' Yacht Race last year (January 2000) as navigator on my son's 40ft catamaran. At 72 years of age I was the oldest "sailor" amongst the 80-odd yachts that competed (we came 1st in our Class, after 26 days at sea across the Atlantic ).
Over the years I have come to realise that there are so many men out there who are as ignorant about BPH and PC [Prostate Cancer] as I was. Like, in Michael Korda's book, a PC Support Group was needed in my home-town to educate and make men aware of the disease. In February last year my wife and I visited our daughter in Sydney, Australia. During our stay and quite by chance (I prefer to call it fate) I happened to come across a prostate cancer office in Lane Cove, a suburb of Sydney. The people I met there very kindly provided me with information about support groups in and around Sydney. In addition I was given excellent tapes and literature on the subject of P.C. as well as dates of support group meetings.
During my stay I attended quite a few of the meetings and was so inspired that I resolved to pursue the start-up of a P.C. Support group in my home-town , Port Elizabeth. In collaboration with the local Cancer Association, the inaugural meeting of the Port Elizabeth Prostate Cancer Support Group was held in the training room of St George's Hospital in July 2000. The Group meets on the last Monday of every month and to date we have 65 registered members. Guest speakers from the medical and associated professions are only too willing to give of their time to do presentations at our meetings.
[Update 23 April 2002] Certain things have changed since we last communicated....I now have a rising PSA...from 0.5 to 2.0 ng/ml which resulted over a period of one year ending March 2002. OK, so a PSA of 2.0 isn't a train smash....however, any rising PSA, in my book, is suspicious. So, I thought , why not nip it in the bud and find out what's going on.
In discussion with my Urologist on this, he agreed to "throw the book at me". So, in March, I had a bone and CT scans done, as well as a biopsy.The bone and CT scan results were negative but the biopsy was still positive with a GG of 8. My Uro maintains the cancer is-confined (at the moment) and at a "B something" stage. I am still on CAB.(Zoladex and Casodex).
I think it's time for another opinion......so I've made arrangements to see the Oncologist who handled my EBRT way back in 1997....Surely there is something that can be done to contain my rising PSA....a change of medication, maybe? who knows. Any other suggestions will be welcome.
(Update 12 Feb 2004) Although my PSA is still on the high side, I feel fine (no aches and pain) At 76 years of age, I did another Atlantic crossing last September/October, this time to the Caribbean Islands and then spent Xmas and New year with my family in Sydney, Australia.
I am still on CHT (Combined Hormone Therapy)i.e. Zoladex and a second-line antiandrogen viz, Aminoglutethimide + Hydrocortisone which I started in July 2003. My latest PSA reading is 8.2 ng/ml, down from 10.7 on the 1st December last year.
While I am very grateful for the drop in PSA, I am not altogether enthused about this Amino treatment. Is there anybody out there on this treatment? If so, I WILL BE VERY PLEASED TO HEAR FROM YOU. I will be seeing my oncologist again this week and I forsee that he will advise remaining on this TX for a few more months.
Derek has recently suffered a minor stroke and will not be able to respond to any correspondence for the present.
Derek is now 77, he has done well after his stroke and is back on the air. Here is his update:
A year ago I said my PSA was still on the high side. I am still on CHT. I had a Orchiectomy in Oct 2004. In November, my oncologist and I decided to try another second line anti- androgen, LDH+HC (Low dose Ketocanazole +hydrocortizone)as the Aminoglutethemide (AG)was not working for me anymore. (rising PSA)
I take 600mg of LDK per day. It did bring down my PSA after 3 months to 13.7 and seems now to be hovering around the 15 to 16 number. In a telephone discussion with my onco today, I suggested we double up on the meds ie 1200mg per day, but he advised not to as there was no PSADT to speak of and although the PSA was on the high side, as least it seems to remain steady around 15ng/ml.
The Keto plays havoc with my liver so I take "Legalon" tablets to ease the pain. Regular LFT blood tests are important. I can handle the PCa, no problem.....it's the Stroke I had a year ago that I cannot come to terms with.
I'll be happy to respond to anyone who would like to correspond with me.
I've not had any real improvement in reduction of PSA, it still hovers around the 10 to 14 mark. The last time I spoke to my Onco he said to try "withdrawal"..... "go off all meds for a month", which I did for 2 weeks. But just to have a look see, I had a PSA and what do you know it went up 2 points from 12.2 to 14.3. (in just 2 weeks) Funny thing, on my own, I tried the similar lay-off for a week last year when I went to see my son in Cape Town and my PSA came down to 7 almost 50%.
The trouble of course and like my wife always tells me, is that I read too much on the lists how others have gotten their PSA's down to 2 decimal places from some figure way out, and here I am with no pain, no large tumours, no mets but dissatisfied with 12 to 14 ng/mL So am back on LDK+HC and a.1mg Estradiol patch changed twice a week, which has for the last 18months kept my PSA where it is. Don't want to try DES or patches full time because of my recent stroke, and I don't think I'm a candidate for Chemo just yet. To top it all, my oncologist with whom I had a good rapport, is leaving Port Elizabeth, so I don't know....... what's left medically speaking isn't the best.
The Low dose Keto worked for five months last year but then the old PSA started rising again. My Oncologist suggested we try Androcur injections.......after a few months, that failed. At my suggestion, we tried ADT3 (150 mg Casodex and Avodart, Orchiectomy same as LHRH) but another five months later the PSA had risen to 27.3 ng/ml. So now what.......(oh for a medical oncologist who specializes in PCa)!! I've tried all the local treatments except DES (not available in this country) Patches, and Chemo. So it's off to the Oncologist once again. This time I insist we go the Chemo route i.e. LD Taxotere, once a week, rest 1 week. He talks me out of Taxotere and suggests we first try Estramustine (Emcyt) a chemo tablet, 1 tab twice daily. What can I do, so it's away with ADT3 and start Emcyt in Feb 2007.
Well at least we got a drop in PSA to 15.8 ng/ml at the end of May '07. Next test in July, hopefully it will keep dropping. One thing though, from what I've read-up on this medication, I should be taking 3 tabs twice daily.......but oh boy, even with 1 tab twice daily, the side effects are most unpleasant, mainly constipation, ankle swelling, skin sores and fatigue. On my last visit to my Onco, I mentioned that in May I had taken a 2 week "holiday" from the tab and since it did not effect the PSA result, I am now going to apply taking this medication on a 6 weeks on and 2 weeks off basis. What did he say? What can he say; It's my body........
Regrettably my PSA rose to 20.4 in August 2007 with another rise to 28.9 in December 2007. In February 2008 the PSA doubled again to 55.6.
We immediately stopped the Emcyt and started single agent Chemotherapy, Taxotere at 40mg with the usual pre-meds the day before chemo, on the day, and day after. However, after 6 infusions, (2 cycles) the PSA was 60.5
Now the Onco suggested increasing the chemo to 60mg for the next infusion, which I flatly refused and I suggested a change of chemo protocol as the Taxotere was not working. He suggested single agent Navelbine 50mg with 40 mg HC per day. The PSA doubling in Feb this year after all the treatment, is of major concern to me.....and of course the fact that after 6 infusions of Taxotere, the chemo is not working. Also the PSA is now at 100.4 after 2 sessions of Navelbine!!!
After the 6th infusion of chemo I spoke to my onco about combining the taking of Taxotere with Emcyt. He was not in favour. I also suggested that we try a combination with the Navelbine. He also disagreed.
Unfortunately, we do not have a "medical oncologist specializing in Prostate Cancer" in the city of Port Elizabeth where I live. In fact, I am not aware of a PCa specialist in any part of the Republic of South Africa, so we have to be satisfied with a "general" oncologist. So far I am free of any pain (no mets) thank God.
On the 8th May we started another chemotherapy, viz, Navelbine single agent with week one IV and the next week oral. Then rest for 1 week plus 10mg Prednisone per day. 2 weeks later I fear the PSA now 104.6. Oh boy! So, after the 2nd cycle of this Navelbine treatment and with a PSA now at 106.5, I suggested to my Oncologist that as I was planning a visit to my son in Cape Town in June, I intend taking this opportunity to go for a 2nd opinion. At this stage, let me make it clear, that I have a wonderful working arrangement with my present Onco. He is a very caring and most receptive gentleman who is not afraid to try new Treatments. I just wanted to satisfy myself. So no problem, he agreed to provide the Doc of my choice with a "history" of my Prostate health for discussion purposes.
I was told by a friend that I should see Oncologist, Dr Hart, who they gave me to understand "specialized" in Cancer of the Prostate. I regret, the time spent with this Doc (at great expense, I might add) was no better than all the time and the treatment I currently receive from my own Doc back home. I was hoping that Dr Hart would at least come up with another agent in combination with Navelbine. What a waste!
So, time to take the bull by the horns and demand it, so to speak. So in July 2008, with a PSA having reached 128.7 ng/ML, I quit the Navelbine and suggested to my onco that we now go with H Hansen's experience with Mitoxantrone plus HDK and HC (Ketaconzole and Hydrocortisone), plus leukine. He agreed and following Medical Aid's approval for this regimen, we started on this combination treatment on the 26th August 2008. One month later the PSA result was 89.6 Since then the PSA has dropped steadily and has been consistent in the 60,0's for the last 3 months.
With this Chemo one has to have regular Echocardiograms, Bone scans and blood tests. Fortunately, all checked clear...... no pain and am tolerating the meds very well. What to do after completion of this treatment has not been considered or discussed at this stage. We'll worry about it when the time comes.
Derek has been in hospital recently after breaking his femur. His current PSA is about 200 ng/ml. Although he is somewhat weak and has difficulty in answering e-mails, no doubt he would appreciate supportive mails.
Hey Terry .. long time since the last update, but here I am alive and kicking. So much has happened to me this last year that we're hoping 2011 will be back to normal.
Starting at the back .. in November 2010 my dear wife tripped and fell and fractured her right femur. Three days later I tripped and fell getting out of bed to go to the loo and bust my leg in the same place as my wife, landed up in the same ward as her where we both spent 14 days following our ops by the same orthopaedic doc ... unbelievable, but it's true.
My PSA also climbed sky high over this period. In December 2010 it was in the 300's. but the result of my latest test, end of January 2011, my PSA DROPPED 100 pts. And that with not taking any Cancer medication for oh about 3 months.
I do have pain....so will start off with another bone scan this week....we'll then move on from there if they find any mets. I was diagnosed with a collapsed vertebrae also in 2010 plus fracture of my left shoulder following a previous fall and so it could be that. Anyway, I'll try and keep up this episode in my life and fill you in on the results.
Until then, cheers.
Derek's wife, Iona writes:
I know that Derek had flagged your ems intending to reply to you but unfortunately before he could get round to it his health took a turn for the worse and Derek passed away yesterday (Saturday 17th) very peacefully and at home which was his wish.
His physician took him off warfarin and did warn us that should he have another pulmonary embolism it could be fatal if not treated pretty quickly so this is apparently what happened.
For a long time now his body was tired and starting to break down and the medics reckon it was only his brain telling his body to keep going that kept him alive.
I will miss him terribly but then my love must release him from the terrible pain he was in. I know he valued your interest and friendship very much and the children and I thank you for that.