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Intermittent Hormone Therapy I suspect that there are others apart from me that have now been put on to intermittent hormone therapy. The concept is generally understood and the stopping and restarting of treatment is dictated by PSA levels. In my own case my PSA count went down very successfully once hormone therapy started and after about 8 months was below one. Whilst still on the implants (Zoladex) it remained at that level quite happily for another six months and it was then decided to take me off the treatment. That was 9 months ago and it may be imagination but I feel better for it. I have more energy and the weight that I started to put on has now disappeared. I was delighted therefore when in October last year my count was still 0,6. A test last week however (Just 4 months later) came up with a reading of 8.3 and I am told that I should go back on to the treatment when it gets to 10. As a result I am due to have another count taken in 3 months and I imagine that by then it will have reached that figure. It looks likely therefore that in the future I will be on and off the treatment like a YOYO. If that is what it takes then so be it but I would be interested to hear of other members experiences on the same subject. We have our telephone directory primarily for men recently diagnosed but it occurs to me that it would also be beneficial for those in for the long term. Is there for example anyone who has been on Zoladex but has switched to Casodex, which is my likely route? I am in the telephone directory but anyone wishing to swap war stories can phone me on 01395 513611 or E-mail perrattj@aol.com Editor’s note: What John did not tell you is that he had been selected to run for the England team in the home International veterans cross-country championships at Dublin on 12 November 2005. At 67 John runs consistently at national standard and could show many half his age a clean pair of heels.
This soup might just be able to help slow the growth of your P S A or even lower your PSA. It has done just that for my husband Stan and some other people. How did this happen? In August 1998 Stan had Radical Surgery and for 18 months we thought everything was fine. However in February 2000 his PSA started to increase. Stan had regular 3 monthly blood tests and saw his consultant every 6 months. His Consultant Urologist at the R D and E Hospital in Exeter, Mr Stott, told us about one of his other patients who had been taking a daily bowl of Armenian Soup* with the result that this man's PSA reading started to go down. Apparently there is hardly any incident of prostate cancer in Armenia. Off course we could not wait to try this soup. Stan started taking a daily portion of the soup in August 2002. From this time his PSA took 12 months to increase the same amount it had been going up in 3 months. We were delighted. We have added broccoli and tomato puree to this soup, because they are so good for you and we now call it PSA soup. We know the soup is doing him no harm and has no side effects and we think this soup has slowed up the PSA growth. Stan does eat a healthy diet with lots of fruit, vegetables and Soya with few dairy products in his diet. For the recipe click here
Prostate Cancer and the Internet For the prostate cancer sufferer wishing to inform himself about his disease and the latest treatments, there is no better place than the Internet. It is no secret that advances in treatment have mainly arrived from across the Atlantic. There are a number of doctors in the US and Canada who have pioneered new treatments and whose writings are available on the Internet. With the help of the Google search engine, you can access their published papers. All you, or a friend or relative have to do is to put "prostate cancer" into a Google search followed by their name. Thus "prostate cancer labrie", "prostate cancer myers", "64 prostate cancer strum" and "prostate cancer lebowitz" will enable you to read the writings of Doctors Labrie, Myers, Strumand and Lebowitz. The former Chairman of NEDPSA, John Cartwright, also has a massive list of other sites and I am sure he could arrange for that list to be photocopied. If you would like to join a PC email discussion group, which is mostly UK based, try ProstateCancerSupport@yahoogroups.com
Extract from “Life from a New Angle” by the Reverend Allan Bowers of Sidmouth.
The treatment for the first six months advised by my consultant was “Watching and waiting”, which made me smile as one of our well known hymns; “Blessed assurance, Jesus is mine”, had the line in the third verse “Watching and waiting, looking above”. Fortunately a bone scan revealed all was clear, but my consultant said it was necessary to have special medication every day. My dear wife, family and friends gave me all the support I needed and my brother Stanley, said, “This will enrich your ministry"; it most certainly has and with faith it will continue to enrich it. Copies of “Life from a New Angle” are available from: Allan J. Bowers, Treetops, 25 Woolbrook Park, Sidmouth Devon EX10 9DX at a cost of £9.50 which includes postage and packing.
Bladder problems are often common in men diagnosed with prostate cancer. This can be for a number of reasons; sometimes an enlarge prostate causes outflow problems in some men, also treatments such as radiotherapy or brachytherapy can cause an overactive bladder in others. It may also be the case that coincidentally, the bladder is overactive as well as the prostate being enlarged. Whatever the cause, the result are side effects that are very uncomfortable and sometimes embarrassing, i.e. urgency and frequency.
Urgency and Frequency Urgency is when you suddenly need to go to the toilet immediately and if you do not, your urine may leak. Frequency is when you go to the toilet a lot, eight times or more in 24 hours, but only pass small amounts of urine.
When your bladder is filling up, the bladder muscle is relaxed. When the bladder is becoming full it sends a signal to the brain. Then, when it is convenient and we decide to go to the toilet, the bladder muscles begin to contract Adults usually go to the toilet between four and seven times a day, and no more than once during the night. When we first feel the need to go to the toilet, we can usually hold on until it is convenient for us to go.
How Do Urgency and Frequency Happen? Urgency and frequency happen when the bladder muscle starts to contract before we go to the toilet. This can happen if you get into the habit of going to the toilet 'just in case', which means that the bladder only has a small amount of urine, instead of waiting until the bladder is full. Urgency and frequency can be affected by:
Drug Therapy You may need to take tablets to help your bladder relax. Unfortunately, some of the drugs prescribed to treat this can take over 12 weeks until a change is noted and some have unpleasant side effects which can make people stop taking them. However, there is now a muscle-relaxing drug available called Vesicare (solifenacin) which can start working within a week or two. Recent studies have also shown it can cause less unpleasant side effects than some other similar drugs.
Further Help It is important that you talk to your GP or Urologist about any drugs you may want to try as some drugs may be contra-indicated because of other existing health problems or other medication you are taking. This item is taken from Checkmate the Newsletter of Torbay Prostate Support Association.
The Nineties were ten years of blissful ignorance for me. I thought the hesitation before passing water, the stop and start and the weak flow were just that I was getting older, even though I was only in my late forties. We all know an 8 year old boy can pee a considerable distance and a 90 year old often gets his shoes wet’ I was somewhere in between, but much nearer the 90 year old than I cared to admit. And that back ache was surely just the result of heavy lifting and handling cattle for all those years. On June 27th 2000, I had an x-ray on my back which showed an enlarged prostate and cancer hotspots on my spine. My PSA was 55, Gleason 3 + 4 and a bone scan showed multiple metastases all over my skeleton. Under pressure from me, my urologist told me that, as I was only 53, it was not all bad news. I could have up to five years survival but to only expect 2.5 good years. Well, that was over 3 years ago and to celebrate passing the average prognosis, my son and I ran The London Marathon in 4hrs 20 mins (raising £4,400 for The Prostate Cancer Charity) and I recently completed the 84 mile Hadrian’s Wall path - walking this time. I still run about 4 miles, 3 times a week followed by half an hour of light weights to keep my bones as healthy as possible. So, what have I done in the last three years. In some respects I was ‘lucky’. The cancer had spread so I didn’t have to make the mind-blowing decision of what to do with my prostate. I still have it, untouched, except for a biopsy. I took the advice of a veteran prostate cancer fighter, Roy Nixon, who said, “Engage your cancer, read all your head can carry and take charge of you own treatment”. I became sort of’ computer literate so I now read thousands of emails of diagnosed men talking to each other and discussing every aspect of the disease. I sometimes join in asking questions and can now help others who are newly diagnosed just as others helped me and still do. I can even ask advice on my case from top oncologists in the States who specialise in Prostate Cancer, all for free. Does anyone get to see a prostate specialist in the NHS? I met Sylvia Bevis’ husband Michael, (TPSA) on one list who helped me a great deal and told me about the Torbay Prostate Cancer Support Association which he had started. Now, a few years later, other groups in the South West are only in their infancy. I was offered just one drug, Zoladex, but managed to argue for four, having learnt of their value from the internet lists. The additions were Casodex, Proscar and Fosamax with calcium. I visited Bristol Cancer Help Centre for a two day course which convinced me that no cancer was necessarily terminal and that an holistic approach was essential to have some kind of chance. So, taking Bristol’s advice, I have greatly changed my diet, take several supplements and alternative treatments and as important as any drugs, I believe that mind over body is an incredible weapon. After 18 months on hormone treatment and 15 months undetectable PSA I went onto IHT (Intermittent Hormone Therapy) and remarkably for someone with multiple metastases, I am still off hormones, accept for Proscar, over 3 years after diagnosis. A bone scan last year amazingly showed no tumours on my scan (they had all become dormant). My PSA is rising again now and in a few months I may have to return to hormones but have had a great 20 month run on no conventional drugs other than Proscar. The break from hormones has been good with testosterone levels back to normal. If or when I become hormone retractory, I have no idea how I will cope with chemotherapy and possible severe bone pain but for the time being I have got the word ‘terminal’ out of my head and replaced it with ‘advanced’ prostate cancer. The longer men in my situation can survive the greater the chance new treatments will come on stream but we do need the co-operation of doctors to be a little more adventurous in the administration of these drugs. We haven’t the luxury of time. Unless I have been the lucky one, I believe attacking the cancer from many angles has prolonged survival a great deal. There is so much to learn on so many aspects of prostate cancer that it can be daunting. Even GPs, general urologists and oncologists will admit to a limited knowledge of prostate cancer and it was very refreshing last month when my urologist (in Somerset) actually asked me to supply him with some particular details from my internet lists. After changing my GP, I now feel we are working as a team with respect all round. I believe strongly that progress with prostate cancer will only be made from patient pressure. Women have shown us the way with breast cancer resources many times superior to prostate and their death rate is falling. Awareness is pitiful and needs addressing urgently for all men over 45. We know what the symptoms are, so it has to be our responsibility to pass this knowledge onto the next generation. That goes for politicians, physicians and patients. As The Prostate Cancer Charity say, “For the sake of our Sons and Grandsons”. There is a huge amount that bewilders me still and my experience is of advanced prostate cancer but if anyone would like to exchange notes or ideas then please feel free to get in contact. Some subjects for discussion : Side effects of hormone treatment, why Casodex?, why Proscar?, why a bisphosphonate? (Fosamax maybe Zometa), which diet, red meat, dairy, salt, sugar, supplements, anti-oxidants, advantages of a visit to Bristol Cancer Help Centre, stress reduced life, relaxation, visualisation, alternative treatments, good internet lists and sources of information etc., etc. Contact Peter Loader on Tel. 01460 62935 or email peter@loader66.fsnet.co.uk
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