Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 Hi , I have been on treatment for a less time than yourself. As a 74 year old with a history of 3heart attacks; TURP in 1985, triple coronary artery bypass in 1985 I have been solely on Hormone Therapy. Diagnosed Oct 1998; PSA 49.7; Gleason score 4+3=7; MRI and bone scans clear. 29/12/98 Started 3 tablets 100mg Cyprostat daily 17/6/99 PSA 3.3 changed to three monthly Zoladex 10.8mg injections/implants 10/08/00 reached nadir of PSA 0.6 05/10/01 slow irregular rise to PSA 1.5 To Date PSA fairly stable within range 1.2 to 1.5 Practice in Aberdeen has been to put those whose PSA fell to 0.1 to undetectable, on an intermittent regime of Zoladex allowing PSA to rise to 10 before restarting the injections. I understand that Royal Marsden now consider that this regime could also apply to those with a fairly stable low PSA. I am seeking an appointment with my consultant urologist to discuss going on to an intermittent regime although I do not meet their normal criteria. Best Regards, How are you all? > This group seems to have been a bit quiet recently. > > Perhaps we ought to ask how you are doing - it would be interesting to see > what treatment people are finding effective. > > I just wonder who has the longest time on the group since surgery, > brachytherapy or on watchfuul waiting without a significant recurrence of > the cancer. > > My stats are at the poorer end > > Surgery in 1996 > > Slow PSA rise to 9 in 4 years then to 19 in 6 months > > 18 months on Casodex 150mg monotherapy > > Nadir 0.4 at 12 months > > Slow rise since to 10.6 (have been on vaccination trial since PSA started to > rise which may or may not have slowed the rise) > > No progression picked up by recent scans. > > Best wishes > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 Jan You are as bad as me - on the computer at all hours - but it's a great way to stay in touch with people all over the world and a great place to learn of each other's experiences. Thanks for watching details of the trial - the 12 months is up in June and then it is decision time - what comes next, the one good thing is that I have lots of extra monitoring which is no bad thing. By the way how is your saga of a book coming on - your posts about you and Tony's fight were riveting, I hope that you find it easy to get a publisher. You are still a light to us all - many men wonder how life is going to be for their wives if they pass away - your continuing support for us all shows us that despite grief there can be positive times too! Thanks again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Dear , Intermittent zoladex injections. I am not a medical man but my simple understanding is that with long term continuous zoladex implants the cancer cells eventually become androgen independent and can develop their own blood supplies - the zoladex alone is then no longer able to control the cancer. At this stage there are the options of trying total blockage - zoladex plus flutamide - or forms of chemotherapy. It has been American practice for some time, and has now been adopted by most UK treatment centres, that when the PSA readings of patients on zoladex come down to 0.1 to undetectable for a few consecutive readings, to stop the zoladex but continue to monitor PSA , Lutenising Hormone (LH) and testosterone on a regular, preferably monthly , basis. When the PSA rises to say 10 the zoladex is restarted. I know of several men in the Aberdeen (Scotland) are who have periods off zoladex well in excess of 12 months and up to nine months is not uncommon. The advantages of an intermittent regime are to prolong the effectiveness of zoladex before having to consider more drastic measures. In many cases the side effects of the zoladex also reduce and can disappear. Some patients stop having hot flushes and younger men who have not been on zoladex for too long can experience a return of libido and resumption of normal sex life, the osteoporosis effect is also reduced. .. I did not hear about zoladex patients with a low stable PSA being considered for intermittent treatment until a week or two ago. when I contacted EPCEL the European Prostate Cancer Education site and learnt that this was being practised at the Royal Marsden - hence my intention to pursue this locally for my own case. I will let you know how I get on in case other group members are in a similar position Best regards, RE: How are you all? Thanks for your post. I was thinking Aberdeen Washington state for a minute as we are going there in May, then I read the comment about the Royal Marsden and realised you were much nearer home, funny things happen to our thought processes. from waht I have read and the experience of others I have talked to if hormone manipulation treatment can be intermittent it seems to prolong effectiveness. This is the first time I have heard of stable and low PSAs being treated this side of the pond by intermittent treatment - it would be good if you can find out more! Best wishes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 He et al I would like to think that you all are so well, there is little to say. As the saying goes 'no news is good news' I was thinking that it would be good to ask specific questions to help encourage discussion. Like when you mentioned impotence due to treatment. There was some really good responses, and I'm sure everyone found them interesting, I think just to be able to mention them freely must give some relief. Have I any suggestions? Not at present but I've just sat down, so watch this space. One thing I would like to do at certain points is to through in little research questions to find out how men are feeling about certain things, like treatments as you mentioned. Men continually ask which treatment is most successful, and alas there is no way of knowing. We could look at things like that. Anyways this is all just off the top of my head after only one cup of tea. I will keep thinking and run things by you. Well to you all out there. Keep well and stay in touch. Just thought of a question? How many of you (or partner) have kept a diary/journal of your experience to date? Do you chart your PSA? If so how? Sorry that was 2 Bye for now Cohen Information and Support Nurse The Prostate Cancer Charity Prostate Cancer Awareness Week 24th March to 1st April How are you all? This group seems to have been a bit quiet recently. Perhaps we ought to ask how you are doing - it would be interesting to see what treatment people are finding effective. I just wonder who has the longest time on the group since surgery, brachytherapy or on watchfuul waiting without a significant recurrence of the cancer. My stats are at the poorer end Surgery in 1996 Slow PSA rise to 9 in 4 years then to 19 in 6 months 18 months on Casodex 150mg monotherapy Nadir 0.4 at 12 months Slow rise since to 10.6 (have been on vaccination trial since PSA started to rise which may or may not have slowed the rise) No progression picked up by recent scans. Best wishes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 At 09:54 AM 25/02/2003 -0000, you wrote: >Just thought of a question? How many of you (or partner) have kept a >diary/journal of your experience to date? Yes, I have kept a fairly detailed diary since my first PSA test 5 years ago. >Do you chart your PSA? If so how? Not exactly chart but I have a record of every PSA value. Tim tgpett@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Hi Pat > > Just thought of a question? How many of you (or partner) have kept a > diary/journal of your experience to date? I do Do you chart your PSA? If so how? > Excell http://www.prostatecanceruk.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Hello , Yes I have been following your journey like I was there with you. It has been very gripping. Do you find it helps you to write it all down? It helps me to get a better perspective of what men may be going through, so thank you. Keep well and never say never. There is always something. I am going to email your site to our press officer, who may contact you at a later date if that is ok. Kind Regards Support & Information Team The Prostate Cancer Charity 3 Angel Walk Hammersmith London W6 9HX Helpline: 0 (Monday - Friday, 10 a.m. - 4 p.m.) Tel: 020 8222 7622 Fax: 020 8222 7639 This email is confidential and may be legally privileged. It is for the use of the named recipient(s) only. If you have received it in error please notify me immediately. Please do not copy or disclose its contents to any person or body, and delete it from your computer system. Internet communications are not secure and therefore The Prostate Cancer Charity does not accept legal responsibility for the contents of this message. Any views or opinions presented are solely those of the author and do not necessarily represent those of The Prostate Cancer Charity, unless otherwise specifically stated. If the content of this email is to become contractually binding it must be made in writing and signed by a duly authorised representative of The Prostate Cancer Charity. Re: How are you all? Hi Pat > > Just thought of a question? How many of you (or partner) have kept a > diary/journal of your experience to date? I do Do you chart your PSA? If so how? > Excell http://www.prostatecanceruk.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 HI ! How are you? I am doing better! THanks for asking. I am 3 weeks and 1 day from my NSRP and am doing ok. Still a little incontinent and a lot impotent but am looking forward to the future. It looks like I will have a good one too. I am only a week and a day from having the catheter removed and am doing better just not good enough for me. I'm being too impatient I guess. But I am doing better. I still can't believe I have gone though this but I have and the reality has set in. I am dealing with the aftermaths of the surgery and hope I will be back to normal soon. THanks again for having me and I hope to gain more knowledge from everyone here and hopefully give some to anyone who needs it! Bye for now! Tom > Just thought I would put a note on giving you all my best wishes. > > All seems fairly quiet on the group at the moment so this is just to let you > know you are still on the list. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Hey Tom, hang in there, good to have the operation behind you and brighter days ahead. I am two months after surgery now and things are a l m o s t back to normal. Except the woody thing....but I can wait, I am cancer free and so happy. Will keep you in thoughts and prayers, keep on keeping on buddy. Brad >From: "Tom" >Reply-To: ProstateCancerSupport >To: ProstateCancerSupport >Subject: Re: How are you all? >Date: Tue, 16 Mar 2004 21:36:22 -0000 > >HI ! How are you? I am doing better! THanks for asking. I am 3 >weeks and 1 day from my NSRP and am doing ok. Still a little >incontinent and a lot impotent but am looking forward to the future. >It looks like I will have a good one too. I am only a week and a day >from having the catheter removed and am doing better just not good >enough for me. I'm being too impatient I guess. But I am doing >better. I still can't believe I have gone though this but I have and >the reality has set in. I am dealing with the aftermaths of the >surgery and hope I will be back to normal soon. THanks again for >having me and I hope to gain more knowledge from everyone here and >hopefully give some to anyone who needs it! Bye for now! Tom > > > > > > Just thought I would put a note on giving you all my best wishes. > > > > All seems fairly quiet on the group at the moment so this is just >to let you > > know you are still on the list. > > > > > Get rid of annoying pop-up ads with the new MSN Toolbar – FREE! Quote Link to comment Share on other sites More sharing options...
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