Medical Forum / Diseases and Disorders / Prostate Cancer / December 2004
John Preston makes the news
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jimhoney - 30 Nov 2004 01:09 GMT Lifting the shroud on the Big C
For years, cancer has been seen as a death sentence. In this special report, Jo Revill reveals how the tide is turning
Sunday November 28, 2004 The Observer
http://observer.guardian.co.uk/focus/story/0,6903,1361272,00.html
Heather - 30 Nov 2004 02:14 GMT Wonderful news!!!! And if memory serves me right, didn't his wife come on here thinking that there was nothing they could do?? And you fellows suggested he get into a trial?? That is simply excellent!!
And the article was interesting from many angles. I lost my mother to pancreatic cancer 18 years ago, for instance. Plus our rad. oncologist was telling us of the great strides that were being made in cancer research and mentioned 'taxotere' as being one of them.
Thanks, Jim.....that made my day!! I am so happy for John and his wife.....Carolyn, I believe.
Cheers.....Heather
> Lifting the shroud on the Big C > [quoted text clipped - 5 lines] > > http://observer.guardian.co.uk/focus/story/0,6903,1361272,00.html jimhoney - 30 Nov 2004 02:47 GMT Yes, that's the couple. They are helping to advance the state of medical knowledge.
jimhoney
> Wonderful news!!!! And if memory serves me right, didn't his wife come on > here thinking that there was nothing they could do?? And you fellows [quoted text clipped - 19 lines] > > > > http://observer.guardian.co.uk/focus/story/0,6903,1361272,00.html Carolyn Preston - 30 Nov 2004 12:44 GMT Hi Jim, as we speak John is being filmed by a film crew riding his motorbike!!!!. They have been here all morning filming him ready for the launch of taxetere for advanced prostate cancer in the UK. They intend to tell his story in a DVD that will be sent to all professionals by the company that market Taxetere (Roche i believe?). John is doing very well, look forward to seing you at the christmas dinner next week.
love carolyn
> Yes, that's the couple. They are helping to advance the state of medical > knowledge. > > jimhoney jimhoney - 30 Nov 2004 13:10 GMT > Hi Jim, as we speak John is being filmed by a film crew riding his > motorbike!!!!. They have been here all morning filming him ready for the [quoted text clipped - 3 lines] > John is doing very well, look forward to seing you at the christmas > dinner next week. Wrong Jim, but great to hear from you two.
jimhoney in the States
> love carolyn > [quoted text clipped - 3 lines] > > > > jimhoney Carolyn Preston - 30 Nov 2004 13:34 GMT whoops!!!! love Carolyn
> > Hi Jim, as we speak John is being filmed by a film crew riding his > > motorbike!!!!. They have been here all morning filming him ready for the [quoted text clipped - 16 lines] > > > > > > jimhoney Jamie - 01 Dec 2004 11:33 GMT Hi Carolyn
the last time you posted, John was on Omnitarg and Taxotere at the Marsden. From your post I got the impression that things were not that hopeful. Can you give us a resume of that treatment and how John is now.
Jamie
(hope springs eternal......)
> Hi Jim, as we speak John is being filmed by a film crew riding his > motorbike!!!!. They have been here all morning filming him ready for the [quoted text clipped - 11 lines] >> >> jimhoney Carolyn Preston - 01 Dec 2004 23:57 GMT > Hi Carolyn > [quoted text clipped - 3 lines] > > Jamie Hi Jamie, John here.
Brief history:
Dx April 2003, PSA 640, Gleason 3+4 T4x with widespread bone mets. Started Casodex then Zoladex PSA down to 14 in the summer of 2003. Started monthly Zometa for the bone mets.
PSA rose steadily to about 50 by April this year when I started the trial. Phase 1 trial - Combination of (though a drip separately) Taxotere and Omnitarg (2C4), a monclonal antibody given every 3 weeks and the trial lasts for 6 cycles. There is a weekly check-up (physical) at clinic with full blood testing, PSA every 2 cycles, regular heart (Muga) scans, 12 lead ECGs & lower abdomen CT scans.
The Omnitarg is currently being Phase 2 trialled on its own over here.
As I was having little or no side effects I am intending to stay on the trial indefinately so there will be at least some results from extended dosing & I intend to continue untill I become unwell through the drugs or untill the drugs start to lose their effect. Will be having cycle 12 in two weeks time.
Results to date are that bone mets have not changed since original Dx and PSA has stopped rising and is currently bouncing around the mid to low 30s
Anything else - please ask.
-- John Preston GSX1400
Jamie - 02 Dec 2004 19:19 GMT Hi John
thanks for the info. Keep us all posted on your progress.
I'm on a trial of Cyclophosphamide (100mg daily) at St Georges. It's keeping my psa at around 25.
If they can give you Prostap instead of Zoladex(same effect) it's less painful when injected. A fine 50mm needle.
Jamie
> Hi Jamie, John here. > [quoted text clipped - 5 lines] > John Preston > GSX1400 Lorelei - 03 Dec 2004 03:35 GMT John, Curt wanted me to post to you. If you remember, Curt is 40 and had mets to bone and lymph (lung?).\ He also went resistant to hormone therapy in 9 months. He will be on chemo by Christmas. COuld you describe the side effects you have encountered from the chemo?
otherwise, Rock ON dude!! keep it up. here's to days of feeling great to you. Curt and Lori MIller
> Hi John > [quoted text clipped - 17 lines] >> John Preston >> GSX1400 Carolyn Preston - 04 Dec 2004 13:59 GMT > John, Curt wanted me to post to you. If you remember, Curt is 40 and had > mets to bone and lymph (lung?).\ [quoted text clipped - 5 lines] > you. > Curt and Lori MIller Hi Lori
Side effects from the trial have been minimal - slight loss & thinning of hair & loss of nearly all of eyebrows, eyelashes & nose hair.
Occaisional diahorrea (about once, maybe twice a week) we are gived Loperamide (Imodium) for this and domperidome for any sickness (not needed so far).
Taste - hard to describe but every thing tastes bland & "just not nice" and there is another effect that food "feels pastey". After about 6 cycles of treatment everything (solids not drinks) tasted slightly burnt. The other two guys on the trial have hsdd very similar side effects.
Apart from these very minor inconveniences I can't see any reason to stop the trial at the moment.
John
Danny McCarty - 03 Dec 2004 17:35 GMT >Subject: Re: John Preston makes the news >From: "Jamie" jamie@nospam [quoted text clipped - 10 lines] >If they can give you Prostap instead of Zoladex(same effect) it's less >painful when injected. A fine 50mm needle. ;-} 50mm? That's 5cm, about 2 inches...? do you mean 50 um? (micrometers)
>Jamie > [quoted text clipped - 7 lines] >> John Preston >> GSX1400 Jamie - 03 Dec 2004 18:03 GMT Silly it's the length I'm taking about. The Zoladex needle is about 100mm or more and goes in quite far. I found it akin to having a burning brand across my stomach. I hardly feel the Prostap(lupron) needle going in.
Hope this explains my suggestion.
Jamie
> >Subject: Re: John Preston makes the news >>From: "Jamie" jamie@nospam [quoted text clipped - 26 lines] >>> John Preston >>> GSX1400 Danny McCarty - 03 Dec 2004 19:20 GMT >Subject: Re: John Preston makes the news >From: "Jamie" jamie@nospam [quoted text clipped - 4 lines] >or more and goes in quite far. I found it akin to having a burning brand >across my stomach. I hardly feel the Prostap(lupron) needle going in. OK. There is a difference between small diameter and large diameter needles- the larger diameters started giving me bruises for blood draws. 50 um is 0.05 mm is about one five hundredth of an inch, very thin. I doubt anyone outside the US understands what I'm saying anymore.. ;-}
>Hope this explains my suggestion. > [quoted text clipped - 30 lines] >>>> John Preston >>>> GSX1400 Stephen Jordan - 03 Dec 2004 21:17 GMT On December 2, Jamie wrote, in pertinent part:
> .....The Zoladex needle is about 100mm or more and goes in quite > far. I found it akin to having a burning brand across my stomach. > I hardly feel the Prostap(lupron) needle going in. I, too, found the Zoladex implant quite painful. Complained; told my onc that I wanted Emla cream or patch (lidocaine + prilocaine) for the next one. Instead, he prescribed Lupron.
Had my first Lupron implant on Monday, November 29, in the gluteus maximus. Piece of cake. N more sting than any other injection. Very minor ache for a couple of minutes while the implant was solidifying, then nothing.
Unexpected benefit: hot flashes are fewer and less intense than with Zoladex. Therefore, I've elected not to proceed with prescribed (and expensive) Effexor to relieve them.
Dunno whether anyone has ever compared this SE of the two medications.
Regards,
Steve J __ "Never give in--never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy.'' --Sir Winston L. S. Churchill
Danny McCarty - 03 Dec 2004 17:30 GMT >Subject: Re: John Preston makes the news >From: "Carolyn Preston" carolyn.preston@ntlworld.com [quoted text clipped - 18 lines] >Started Casodex then Zoladex PSA down to 14 in the summer of 2003. >Started monthly Zometa for the bone mets. Hmm, just occured to me, my bone scans show mets at several locations but my excellent oncologist still has not ordered a single Zometa. He mentioned it two years ago. Perhaps because I still have no bone pain...
>PSA rose steadily to about 50 by April this year when I started the >trial. Phase 1 trial - Combination of (though a drip separately) [quoted text clipped - 20 lines] >John Preston >GSX1400 Psillyme - 04 Dec 2004 17:28 GMT The way my doctor explained Zometa to me was that it is not only a palliative for pain, but it strengthens the bones and makes them more resistant to new bone mets and slows the spread of the existing ones.
> >Subject: Re: John Preston makes the news > >From: "Carolyn Preston" carolyn.preston@ntlworld.com [quoted text clipped - 47 lines] > >John Preston > >GSX1400
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