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Medical Forum / Diseases and Disorders / Prostate Cancer / May 2008Which Ideas Helped Me the most
RP 14 months ago; T3a, nerve invasion, Gleason = 9, lymph node invasion (4); PSA since <0.007 Two things, which were of the biggest help: 1. A cancer patient advised keeping a detailed journal beginning with the first doctor visit. I bought a hardbound journal. My wife went to see doctors with me and wrote in it while they talked. It went with us to the hospital and my family kept notes in it: every visit from a doctor, nurse or anyone else was recorded in detail. I have kept it going since and it has been of immense help to look back on for information, which would have been lost and forgotten otherwise. 2. I took a cane with me to the hospital. I was in the hospital for a week. It was great for walking at the hospital. It was great for leaving the hospital and during the 4-hour car trip home - and for recuperating at home. Really helped when getting out of a chair or off the couch. > RP 14 months ago; T3a, nerve invasion, Gleason = 9, lymph node > invasion (4); PSA since <0.007 Interesting about the cane, but that doesn't touch the rest! T3, lymph involvement, G9, and now after an RP you're at 0.007? That's fantastic! >> RP 14 months ago; T3a, nerve invasion, Gleason = 9, lymph node >> invasion (4); PSA since <0.007 > >Interesting about the cane, but that doesn't touch the rest! T3, lymph >involvement, G9, and now after an RP you're at 0.007? That's fantastic! Pete I agree with Steve. Great stuff. What treatment did you receive after the RP - any? Thanks. MikeHi On May 16, 6:24 am, mik...@anon.com wrote: > On Thu, 15 May 2008 17:33:20 -0400, "Steve Kramer" > [quoted text clipped - 10 lines] > > MikeHi Mike - I received no other treatment after the RP! I attribute the success so far to my surgical team. My doctors were truly amazed. They have enrolled me in a Clinical Trial. I have been randomized to a defered treatment group. When PSA reaches 0.4 I am to receive a combination ADT (Eligard) and Chemo (Taxotere). I have been wondering if I ought to proceed with this "doubly whammy" at that point - or not............... > I received no other treatment after the RP! ... > When PSA reaches 0.4 I am to receive a > combination ADT (Eligard) and Chemo (Taxotere). I have been wondering > if I ought to proceed with this "doubly whammy" at that point - or > not............... I am making no such decisions until the time comes, as the PC treatment world is changing rapidly due to very high levels of attention and many ongoing trials. When my PSA reaches some magical point, I'll resume my research and move in with my oncs. Only then will we decide whether to treat then according to the newest information or wait until I get symptoms. If the latter, we'll all go back to observation mode and reassess options when symptoms appear (or PSA goes ballistic). At present, I'd have to say I'm not leaning towards further treatment until it will *improve* my QOL, and I'm probably many years from that point. So far, 42 months post-op, my PSA is still just bouncing up and down at random between 0.006 and 0.033 in the supersensitive zone. The normal PSA tests would still just show "undetectable". If my PC wants me to make sacrifices for it, it's going to have to sit up and beg more loudly than that. I.P. On May 16, 11:10 am, "I.P. Freely" <fuhgheddabou...@noway.nohow> wrote: > > I received no other treatment after the RP! ... > [quoted text clipped - 21 lines] > > I.P. Lucky guy! - enjoy it and hope it stays there! Lud >> >> RP 14 months ago; T3a, nerve invasion, Gleason = 9, lymph node >> >> invasion (4); PSA since <0.007 On Thu, 15 May 2008 17:33:20 -0400, "Steve Kramer" wrote: >> >Interesting about the cane, but that doesn't touch the rest! T3, lymph >> >involvement, G9, and now after an RP you're at 0.007? That's fantastic! On May 16, 6:24 am, MikeHi wrote: >> I agree with Steve. Great stuff. What treatment did you receive after >> the RP - any? Thanks. HF replied: >Mike - I received no other treatment after the RP! I attribute the >success so far to my surgical team. My doctors were truly amazed. They [quoted text clipped - 3 lines] >if I ought to proceed with this "doubly whammy" at that point - or >not............... MikeHi writes: HF..Thanks for info. I've had similar diagnosis + seminal vesicle involvement. All knocked off with minimal side effects by HIFU. But now my PSA is whipping up. I haven't been suprised by the jump - because of the G9. I had always anticipated metastasis ever since the score was established, whatever was done to the primary. So that's why I agree with Steve you've done marvellously well - great to learn. May we also know please what was your PSA pre-op - and any side effects at all in the 14 months? I'm a poor student compared to many on this ng but I can't quite understand why you're going on ADT AND chemo when you haven't had (it would appear from the low present figure) a PSA relapse? I would add that IPF's views about going on to ADT (the post after mine) tend to coincide with the way I'm feeling at the moment.. But as I say I'll record what's what soon. Kind regards HF Best wishes to all MikeHi > I would add that IPF's views about going on to ADT (the post after > mine) tend to coincide with the way I'm feeling at the moment. Although I stand behind those views in general, keep in mind that I have extra incentives to avoid premature ADT which tip my scales. I.P. >> I would add that IPF's views about going on to ADT (the post after >> mine) tend to coincide with the way I'm feeling at the moment. I.P. replied >Although I stand behind those views in general, keep in mind that I have >extra incentives to avoid premature ADT which tip my scales. > >I.P. Hi IP Thanks for your note. But I'm not copying you - everybody on this ng has all sorts of different parameters deciding their treatment. I read as much as I can of their experiences. I listen a lot to the combative experts on the Prostate Cancer Update pods I've pointed to previously. I read you - and the guys here who have quite different views. It's why the ng is so valuable. Be lost without it. I haven't made any decisions but I'll probably be asked to in the next few weeks. It just happens that at this moment for my own reasons I' 'tend towards' the views you hold on accepting ADT. Also at this moment I don't know quite what I'll be offered - or what my answer will be. Best wishes to all MikeHi On May 17, 3:11 pm, mik...@anon.com wrote: > >> >> RP 14 months ago; T3a, nerve invasion, Gleason = 9, lymph node > >> >> invasion (4); PSA since <0.007 [quoted text clipped - 39 lines] > Best wishes to all > MikeHi Mike: PSA pre op: 7/21/2006 6.000 1/16/2007 10.240 3/6/2007 12.400 3/12/2007 13.100 Side effects: tiredness, depression, incontinence (now 3 pads/24hrs), ED, spent last night in ER with lots of blood in urine - they say bladder infection - can't tell whether it is a side effect or not - Urologist appointment in next few days. I will not start the treatment until I have PSA relapse. The stack of papers I have read seem to suggest that hitting the PCa early may be a better option. One paper, also, is very intriguing (though it is only a small sample) in suggesting that chemotherapy PRECEEDING hormone therapy or coincidental with hormonal therapy is superior. "Conceivably, patients in whom the primary tumor sites are surgically removed initially (via RP) might be more amenable to disease control at the time of recurrence with systemically directed salvage treatments (such as chemotherapy plus hormonal treatment).............five men have NED 11 to 37.4 months after PAB. These results could be skewed because of the limited numbers of patients enrolled............" ( http://jco.ascopubs.org/cgi/content/full/23/12/2789 ) Of course, by the time I have progression there may be more attractive options. My doctor is involved in bringing a vaccine therapy trial online which I am anxious to look at. Best wishes to everyone. My prayer going into RP was "Lord: help my docotors know more today than the knew yesterday." By the way - I am starting to come out of the depression a bit - which has - in a way - been the toughest part of the entire ordeal for me. H F HF wrote: /Big snip) > When PSA reaches 0.4 I am to receive a >> >combination ADT (Eligard) and Chemo (Taxotere). I have been wondering >> >if I ought to proceed with this "doubly whammy" at that point - or >> >not............... MikeHi wrote:(More snips)...: >> May we also know please what was your PSA pre-op - and any side >> effects at all in the 14 months? I'm a poor student compared to many >> on this ng but I can't quite understand why you're going on ADT AND >> chemo when you haven't had (it would appear from the low present >> figure) a PSA relapse? HF replied: - with my comments: >Mike: PSA pre op: >7/21/2006 6.000 >1/16/2007 10.240 >3/6/2007 12.400 >3/12/2007 13.100 >Side effects: tiredness, depression, incontinence (now 3 pads/24hrs), >ED, spent last night in ER with lots of blood in urine - they say >bladder infection - can't tell whether it is a side effect or not - >Urologist appointment in next few days. Best of luck sorting those HF. >I will not start the treatment until I have PSA relapse. I've got it - but still waiting.Will explain later. >The stack of >papers I have read seem to suggest that hitting the PCa early may be a >better option. One paper, also, is very intriguing (though it is only >a small sample) in suggesting that chemotherapy PRECEEDING hormone >therapy or coincidental with hormonal therapy is superior. HF at this stage especially in your thinking (and for that matter anybody in the ng) have a listen to the pods at : http://www.researchtopractice.net/podcast/feed/PCU.xml I have found them remarkable in being a patient listening to leading specialists discussing in great depth how we could be treated. 'Treatment of PSA-Only' disease dated 26/11-07 I think is relevant to you -and me - and the paper you quote. I often get lost in these expert - and often fiercely disputed - discussions but something useful I'm sure sinks in to my sub-conscious for further consideration. >/snip snip.... >Of course, by the time I have progression there may be more attractive >options. My doctor is involved in bringing a vaccine therapy trial >online which I am anxious to look at. I'm keeping beady eyes in that direction too. Lipitor + Celebrex as good as ADT?? At present only the mice know, but...I hold the rate of research -genes and all - is exponential. Five years time totally diferent discussions. Seven years silver bullet? Ten years for sure. You can quote me, (well, some might say, MikeWho?) >Best wishes to everyone. My prayer going into RP was "Lord: help my >docotors know more today than the knew yesterday." They do HF. So my prayer would be: "Let them all agree for once, so that we know." Five years. >By the way - I am starting to come out of the depression a bit - which >has - in a way - been the toughest part of the entire ordeal for me. You've got lots of good friends here HF all pulling for you and I'm sure you're at an age where with your current PSA readings you'll one day find you're sailing in much calmer seas. Stay undepressed, all will be well. Kind regards Best wishes to al MikeHi |
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