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keepingon
Regular Member


Date Joined Mar 2008
Total Posts : 30
   Posted 7/6/2010 12:22 AM (GMT -6)   
Is there anybody out there that has stage T4N1 out there? And what are you doing about it? Its on my mind evey min. of the day.
Found out Jan. 07
g\8
psa 116
The doc said chemo or radiation was not an option.
Started Lupron to shrink it before surgery, did not work.
Radical prostentechomy Sept. 5.
Couldn't get it all, it was outside the sack and into lower lymph nodes.
Cathader removed about 3 months.
Incontinont for about 3 months
Peranial rectal absesses w/ drains for about 4 months
Continued Lupron until Oct. 08 .
Started losing weight. <194 to 170>
Now trying Zoladex, next shot in Dec. 18, then we will see what the PSA is, before deciding on future treatments.
Now in the T4 N1 stage.
Side effects:
Lupron=memory, tired all the time, joints and muscle aches, hot flashes.
Zoladex=memory, tired after doing something, left back rib cage is tender when inhaling, all joints and muscles below the waist ache, the worst is the right hip.
Went to the doc's today 12-18-08, stopped Zoladex today waitin on blood work to come back.
Blood work came back .07. now back on Zoladex for three months then we will see what happens.
PSA came back .08, back , see what happens in three more months.
Zoladex quit working., Now back on Lupron.
Had a  tumer removed from back right hip.
Psa still rising.3-2-10
Still on Lupron.
The last doctors visit, he said He was suprised to see how well I'am doin. He also told me he had second  thoughts of doin the surgery, because he thought I was too far gone, But I will show em.
5-5-10 PSA has doubled in the last year from .01 to .1
weight now 163#
Now having trouble with my right femar and knee  we think it might be a side effect from Lupron
Had a bone scan, it came back good. Dark spot on my left side of my skull wich has gotten smaller since my last bone scan
PSA stayed the same .1  6-14-2010


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/6/2010 5:27 AM (GMT -6)   
My thoughts you should have gotten further opinions and had knowledge of what a nomogram is, the only possible reason for surgery on a patient with those kind of stats would be to "debulk" overall tumor burden, no way for curative. I have never seen any patient with stats even close to that with cure at 10 yrs. out, or even probably 5 yrs. out afte surgery. You should join this group for further information (worldwide): www.hrpca.org  atleast you can find the kind of answers and questions that will be helpful. The Lupron, Zoladex kept your psa down for awhile and masks what surgery alone would show for psa numbers and your doc knows all these wonderful things.

You have options that are not so profittable for your doc, but probably profittable for you, start studying them: DES, estradiol patch, emcyt, ketoconazole and others (these can work against refractive PCa, when those high priced drugs you got stop working) These drugs are used by some oncologist docs, although no uro-doc will probably give them to anyone. Dr. Fred Lee inventor of cyro therapy is a PCa patient himself, he has or still is using emcyt for maybe 8-10 yrs. now with fabulous results, which he has a written piece about. He must be dumb for not doing Lupron (LOL)??? Emcyt also costs way less too.

You just entered the Twlight Zone (humor intended), I had high stats and bad prognosis, switched from Lupron/Zoladex after 2 yrs. of fun on ADT3 combo with Lupron, went to DES, huge differences, still working well 6 yrs. later with it and costs about nothing (no patents) and if someone actually reads Journal of Urology article Nov. 2003 about it...would find out all the pluses on it vs. Lupron and other LHRH drugs. Alot of docs use scare tactics and tell people this drug will cause blood clots and therefore kill you, that is not what the Journal article says and is not the whole truth at all. Oncologist docs would evaluate your risk factors and probably give you coumadin blood thinner along with it as protection, plus Journal says 1-mg dose is considered generally safe, in the old days it was given in 5-mg w/o blood thinner some got clots. What is failed to be mentioned about the old days, (drug was used on PCa for 3-4 decades and still is),it worked well in patients for control for some very well. Just no money in it and plenty in the drugs which are pushed unto us. (Oh is pushed to harsh?- google lawsuits on Lupron (Tap Pharma) and on Zoladex (Astrazeneca) Learn PCa history, these are the good guys? These docs whom joined in this, these are the good guys, putting the patient first (LOL) bribed to make sales, caught, court finded them collectively over $700 million dollars (the cost of doing business?)...it is the same profit ideas on other therapies, usually they do not prescribe the cheaper stuff, look at the costs of these:
Leukine, Chemo, Zometa, Provenge ($93K), and many others...yeap nobody is trying to cashin on us patients. All is fair in this game, patients are on a level playing field, never given agenda, biased or marketed too or taken advantage off. All patients are given full disclosure on all options, drugs possible, all side effects, even told to go get further opinions????
 
 This is what we are up against, so hire and fire docs if necessary, get what is best for you or your choices, find an oncologist which is where you are right now, no uro-doc should be treating you or radiologist either. Or you can stay with your current doc and witness what I mentioned. If you have the money seek out the top PCa oncologists in the USA, and you will notice a dramatic difference in their approach and knowlege of this beast. No cures, better care, quality of life, longer life... those small differences that you might be interested in. I am trying to help you and make a point to others, yeah it is not coombye ya reading, you need alot more than that for this part of the journey in PCa. Best to you I mean you no harm I would like to slow down the profit taking off of patients (taking advantage of the ill is lower than low) , some more references:

www.paactusa.org  (has newletters, phone consultation free too)
www.pcref.org  (Dr. Barken)
www.prostate-help.org
www.hrpca.org
www.yananow.net
www.ustoo.org
www.prostate-pointers.org

Dr. Strums book: A Primer on Prostate Cancer (you should read it closely)

 


Youth is wasted on the Young-(W.C. Fields)

Post Edited (zufus) : 7/6/2010 9:05:20 AM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/6/2010 8:36 AM (GMT -6)   
New Friend,

Your PC journey is hard to read, its a serious situation and it sounds like you have already been through the wringer. Hope you can find some comfort and possibly answers here among the caring brothers and sisters There are several dealing with advanced stage PC, so hopefully they can give you some direct answers.

Please stick around and keep us posted. I wish only the best for you ahead.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, 7/2 - Caths #18 & #19


keepingon
Regular Member


Date Joined Mar 2008
Total Posts : 30
   Posted 7/6/2010 10:58 PM (GMT -6)   
Thanks Zufus. Its the most info that I have gotten.
Found out Jan. 07
g\8
psa 116
The doc said chemo or radiation was not an option.
Started Lupron to shrink it before surgery, did not work.
Radical prostentechomy Sept. 5.
Couldn't get it all, it was outside the sack and into lower lymph nodes.
Cathader removed about 3 months.
Incontinont for about 3 months
Peranial rectal absesses w/ drains for about 4 months
Continued Lupron until Oct. 08 .
Started losing weight. <194 to 170>
Now trying Zoladex, next shot in Dec. 18, then we will see what the PSA is, before deciding on future treatments.
Now in the T4 N1 stage.
Side effects:
Lupron=memory, tired all the time, joints and muscle aches, hot flashes.
Zoladex=memory, tired after doing something, left back rib cage is tender when inhaling, all joints and muscles below the waist ache, the worst is the right hip.
Went to the doc's today 12-18-08, stopped Zoladex today waitin on blood work to come back.
Blood work came back .07. now back on Zoladex for three months then we will see what happens.
PSA came back .08, back , see what happens in three more months.
Zoladex quit working., Now back on Lupron.
Had a  tumer removed from back right hip.
Psa still rising.3-2-10
Still on Lupron.
The last doctors visit, he said He was suprised to see how well I'am doin. He also told me he had second  thoughts of doin the surgery, because he thought I was too far gone, But I will show em.
5-5-10 PSA has doubled in the last year from .01 to .1
weight now 163#
Now having trouble with my right femar and knee  we think it might be a side effect from Lupron
Had a bone scan, it came back good. Dark spot on my left side of my skull wich has gotten smaller since my last bone scan
PSA stayed the same .1  6-14-2010


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/7/2010 6:35 AM (GMT -6)   
I admit it was high dose on the information , I'm sure your current doc will say those alternative drugs I mentioned as junk or such, ask him if he read the Nov 2003 article on DES in The Journal of Urology on it? Ask him if he knows whom Dr. Fred Lee is, then mention what Dr. Lee has used to fight his PCa? Ask him if he has read Dr. Strums book on PCa, a leading PCa specialists in oncology? Or does he even know whom Dr.'s like: Strum, Scholz, Volgezang, Lam, Meyers, Labrie, Barken, Leibowitz (and others I missed)? Alot of these expert surgeons and radiologists and even some onocology docs, don't even know these guys names, let alone what they do and how they treat PCa patients. Seems alot of blinders worn by docs, so you gotta ask yourself why?

As a patient shouldn't you be allowed to have choices and make decisions on your body, life, side effects, costs, and major decisions??? So, whom is helping you to look at 'all' possible options or atleast more possible options? Even if you cannot win the battle on PCa, is ones quality of life in types of treatments, your right and possession...do you want someone else to dictate a one method only pathway without a say in how you want to basically lose the war, maybe among going their way is leaving you maybe pennyless, broke and broken, drained of everything including immune system, bone density, memory loss, muscle mass and other variables? Does it have to be this way for everyone? I say question everything and do it all the time for your own sake and other PCa brothers whom may be traveling the same unpaved Jungle roads, maybe all to soon. Patients have been in some cases: cashed in on, agendad, biased, mislead, cheated, mistreated, misinformed, underassessed in their disease levels, and not given full disclosures...being a witness to some of these cases and my own. Hopefully, people will question everything and find out alot more. Now what did the hypocratic oath proclaim as first? Oh yeah first do no harm to the patient! That must be 100% these days (lol)?
 
Dx-2002 Mar-Apr.- emergency room total urinary blockage (caused by PCa), age 52, bPsa 46.6  12/12 biopsies-all 75-95% PCa in everyone of them, Gleason scores found 7,8,9's and two sets of those about equal parameters, too;  ct and bone scans (worthless) but showing all clear, 8+ opinions I quested for, ADT3 (per Bolla Abstract Study) prior to radiations (neutron followed by photon), switched to DES in 2005, still using it 2010.
Currently in better shape than 2003-5  as to side effects, weight, even strenght. Go figure!


Youth is wasted on the Young-(W.C. Fields)

Post Edited (zufus) : 7/7/2010 6:45:04 AM (GMT-6)

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