supplement hype

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 7/13/2008 7:10 AM (GMT -6)   
Last week I did a live 2 hour radio call in broadcast to promote a survivor benefit in my local community, Naturally I gave out my phone number and email address. Much to my surprise after the broadcast was over the vultures came out. I had call after call of MLM's with claims of miracle cures, and if someone like me would help them get the word out, just think of the lives we could save. I will admit I was shocked, outraged and heartbroke that people would try to take advantage of cancer fighters at their most vulnerable time. Granted the people pushing these products have also been sold a bill of goods. Please understand I am a huge proponent of vitamins to build our immune systems and energy levels and to promote general good health. I know the day will come for many of us to enroll in clinical trials and I am prepared for that, what I am not prepared for is trying every miracle cure that comes along. Not sure this has a point. I guess I have come to love all cancer fighters and care givers and it really hurts to see anyone take try to take advantage of us. Thank goodness we have HW to vent to.
 
peace and love
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
cancer in 4 of 6 cores
92%
80%
37%
28%
 


dutchy
Regular Member


Date Joined Jun 2007
Total Posts : 75
   Posted 7/14/2008 7:24 PM (GMT -6)   
We're keeping the amount of supplements and vitamins to a minimum. Most supplements don't work, and I don't know of any supplements that have proven to make a difference on patients with advanced PCa. My husband does take vitamins though, to increase his resistance. Dutchy
Dutchy's husband
Diagnosis: 7/6: PSA 1,946, multiple bone metastases in thoracic, lumbar spine, pelvis, bilateral ribs and proximal left tibia, 2 weeks Casodex (50 mg)

Treatment: 3 monthly Lupron injection (22.5 mg) + Zometa (4 mg IV). Added daily Casodex (50 mg) in September 2007.

25/06: PSA 407
20/08: PSA 3,7
29/09: PSA 0.7
14/10: PSA 0.17
18/12: PSA < 0.003
15/03: PSA <0.003
15/05: PSA <0.003

May 2008: diagnosed with advanced colon cancer


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 7/15/2008 4:33 AM (GMT -6)   
I agree, that does seem to be the consensus, when i was prescribed my vitamin regimine which is very simple, that is exactly what the doctors told me, it was increase resistance, improve energy and help with immunity, basically they are trying to help offset some of the effects of Lupron. As for energy I have plenty so who knows, i will not add to nor take away until the doctors say.

peace love and grace
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
cancer in 4 of 6 cores
92%
80%
37%
28%
 


Paralleli
Regular Member


Date Joined Jul 2008
Total Posts : 123
   Posted 7/19/2008 4:48 PM (GMT -6)   
TC-Vegas stated:

“Most of whom don't have faith in God but will swallow these supplements blindly. Interesting.”

That is interesting, TC-Vegas! You are implying that people who don’t have faith in God are more gullible, less able to make rational decisions, and less intelligent! It is interesting, so I’d like a bit more information:

1. Are there any studies that back your statement up?
2. To be less gullible and more intelligent, does one need to believe in a Christian God and/or Jesus Christ?
3. Are Jews, Muslims, Buddhists, agonistics and atheists on the whole more prone to buying into quack cures than you?

Maybe you could ask your minister. Thanks for any further insight you can provided on this issue……

myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 7/19/2008 5:34 PM (GMT -6)   
Merkleman,
After 2 weeks of reading all of the religious/non religious posts I think probably everyone has had enough. Discourse not needed - start trouble elsewhere, please.
Susan

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/19/2008 6:19 PM (GMT -6)   
I misworded that. My apologies to everyone. I think a lot of people blindly take supplements ~ regardless of reigous affiliation.

Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 9 '08): <0.1
I will continue HT until May '09. 
Years in Remission (3/23/07): 1
Visit my Journey at:
And at:
 
STAY POSITIVE!
 
 

Post Edited (TC-LasVegas) : 7/20/2008 6:43:52 AM (GMT-6)


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 7/19/2008 6:51 PM (GMT -6)   
Tony & Susan-


Ummmm??????



-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 7/19/2008 6:56 PM (GMT -6)   
Susan-

I agree with you - I think I've had enough, too. If it walks like a duck and quacks like a duck.......hollow apologies and all that.

Bye.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 7/19/2008 7:07 PM (GMT -6)   
Tony-

As a former moderator, can you tell me how to un-register? I've tried deleting all my info, but it just comes back.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 7/19/2008 7:20 PM (GMT -6)   
Nothing.
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.


Paralleli
Regular Member


Date Joined Jul 2008
Total Posts : 123
   Posted 7/19/2008 7:41 PM (GMT -6)   
Susan:

TC-Vegas gets a walk after disparaging everyone that doesn't share his faith? I AM THE ONE THAT should not cause trouble???????? You want the discussion to end? Direct your comments to TC-Vegas. It's O.K for him to to talk trash but nobody can respond? Do I need to be a member of some inner circle or I get told to shut up and drop it? What's the deal Susan? I'd like to stick around, I'm one of the few that have gone the radiation only route, ..I think I have something to offer...........SUSAN ANSWER MY QUESTION... CAN I CONTRIBUTE WHAT I CAN WITHOUT HAVING TO BE TALKED DOWN TO AS A NON-BELIEVER? If TC's trash talk offends me, do I just have to take it? PLEASE ANSWER these questions.

T C-Vegas:

Answer my questions...........if I don't share your particular religious views, am I stupid or something? Am I going to hell? PLEASE ANSWER ME HERE ON THE BOARD. You want to be able to express you're faith, here's your chance ...if your not sure, ask your minister, let me know what he or she says. BUT ANSWER MY QUESTIONS. HERE, ON THE BOARD, LIKE YOU WANT......

Paralleli
Regular Member


Date Joined Jul 2008
Total Posts : 123
   Posted 7/19/2008 7:56 PM (GMT -6)   
Gordy-

You need to contact the owner (or whatever he is) of the site. He's the only that can get rid of your info. I did it once before during the GREAT MODERATOR EDITING SPREE a month or so ago. All your posts will go also. I felt a bit bad about that, maybe some fellow could have learned something about IMRT. At any rate, the other option is to just stop posting and your old posts will stay, on I think. I'll probably just get booted this time!

Best of luck to you from Denver...

Paul

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 7/19/2008 8:01 PM (GMT -6)   
I hope no one will mind if I answer this. I realize with cancer whether you are a fighter or a caregive that emotions are on the edge, heck my are as well. Being on hormone therapy and facing a grim prognosis sometimes makes us say and do things we otherwise would not do. I think at this point we all need to appreciate each others views and try to share love and peace, realizing with day comes a new challenge. Instead of these types of arguments keeping going, I am asking for us all to call a truce.

Peace and love to all
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
cancer in 4 of 6 cores
92%
80%
37%
28%
 


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 7/19/2008 8:36 PM (GMT -6)   
Post deleted, poster has been banned by the owner of this Forum.


James C.

Ok James you can live with banning a revolutionary PCa treatment. Fine you show where you're at. My god can you believe this? it's nuts.

Post Edited (realziggy) : 7/19/2008 8:48:46 PM (GMT-6)


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 7/19/2008 8:44 PM (GMT -6)   
My hope is none of this thread gets deleted, I believe it is imperative that people get their emotions out for healing to happen. I also hope no one leaves HW just because of a few threads. There are so many useful threads here and so many people needing our support. I am sure that all of undergoing treatment are not the person we would aspire to be. With that being said who ever is moderating tonight please do not delete any of this post. Lets allow our people to comment, and hopefully we can get past the bitterness.
There are still those of us who are trying to live a dream through this some how some way
RealZiggy I suppose I missed your threads and I would love to read what you have to say. My concern with people peddling supplements were the get rich quickers that had an agenda other than my well being.

peace and love
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
cancer in 4 of 6 cores
92%
80%
37%
28%
 


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 7/19/2008 8:47 PM (GMT -6)   
Post deleted, poster has been banned by the Forum owner.

Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 7/19/2008 8:51 PM (GMT -6)   
livinadream said...
My hope is none of this thread gets deleted, I believe it is imperative that people get their emotions out for healing to happen. I also hope no one leaves HW just because of a few threads. There are so many useful threads here and so many people needing our support. I am sure that all of undergoing treatment are not the person we would aspire to be. With that being said who ever is moderating tonight please do not delete any of this post. Lets allow our people to comment, and hopefully we can get past the bitterness.
There are still those of us who are trying to live a dream through this some how some way
RealZiggy I suppose I missed your threads and I would love to read what you have to say. My concern with people peddling supplements were the get rich quickers that had an agenda other than my well being.

peace and love
Dale


Post edited, poster has been banned by the Forum owner.
 

Post Edited By Moderator (James C.) : 7/19/2008 8:54:06 PM (GMT-6)


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 7/19/2008 8:51 PM (GMT -6)   
realziggy, I am not withholding anything.  You were banned for abusing the Forum by the owner.  If you wish to be reinstated, contact the Forum Owner and ask to be reinstated.  In the meantime, you have been banned and continue to post with altered logons.  That is neither honest or reasonable. 

Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 7/19/2008 8:53 PM (GMT -6)   
post edited, poster has been banned by the Forum owner.

Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 7/19/2008 8:57 PM (GMT -6)   
James C. said...
realziggy, I am not withholding anything. You were banned for abusing the Forum by the owner. If you wish to be reinstated, contact the Forum Owner and ask to be reinstated. In the meantime, you have been banned and continue to post with altered logons. That is neither honest or reasonable.


reasonable would be able to do as I said I would after my quarterly psa., that is give its results.later with no comments But ok if you want to silence a new cutting edge research study let it weigh on your shoulders not mine. at least you don't think merkelman is me since his posts are still there. Yes Tony it is a coincidence. I'm gone ..what a PCa support group. Really unbelievable.

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 7/19/2008 9:00 PM (GMT -6)   
realzippy, go ahead and post, I am going to bed, and am not gonna sit here editing your posts.  I would like to state that if you have useful information to share, and am not here to attack, ridicule or abuse others, then I am sure the owner will be willing to reinstate you priviledges.  In the meantime, I wish other members to know that this poster has been banned by the owner at least twice for abuse of rules, and abuse of other members.  This forum can't be watched every minute, so he will be able to post anything he wishes while others rest and sleep.  If his violation of basic rules of decency doesn't bother him, then he can and will continue to come back with altered logon names, so in the long run, banning someone won't work for the persistent.  Good night, all.
 
James C.

Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 7/19/2008 9:12 PM (GMT -6)   
James C. said...
realzippy, go ahead and post, I am going to bed, and am not gonna sit here editing your posts. I would like to state that if you have useful information to share, and am not here to attack, ridicule or abuse others, then I am sure the owner will be willing to reinstate you priviledges. In the meantime, I wish other members to know that this poster has been banned by the owner at least twice for abuse of rules, and abuse of other members. This forum can't be watched every minute, so he will be able to post anything he wishes while others rest and sleep. If his violation of basic rules of decency doesn't bother him, then he can and will continue to come back with altered logon names, so in the long run, banning someone won't work for the persistent. Good night, all.


James C.
my last post ...
I did not violate basic decency. I disagreed with the heavy handed censorship, and Tony wanting all conversations here to be acceptable to a symbolic 15 year old girl. I objected to when In a PCa forum men are asked to take it elsewhere to discuss ED problems. I also held a view that women should not be moderators here. Nothing personal gals but I don't think men should be mods at a cervical cancer forum either. That was twisted into Tony saying I didn't want women to post here at all which is ridiculous. That all in all was my "indecency." Maybe my view on women mods may not be popular but neither that or my objections were ever indecent. That said I thank James for allowing me to finally post my defense without his deleting it as quick as Tony did. I also wish I just maybe had the normal surgery or radiation (well not really) for if so I would feel no guilt about not keeping this forum and cancer patients informed of what will be common soon in the future. And I would've never posted here again. If not allowed to post my TFT updates I will be gone but I won't feel guilty about it anymore. For it will be the mods and the forum who says don't do it.. bye all

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 7/20/2008 2:44 AM (GMT -6)   
Gordy,
I hope you are not really going to pull the pin. I would be truly saddened to see you no longer posting here for you are a great asset to the forum with so very much to contribute. Maybe it's time for us all to take a deep breath and start again. Our collective experience is what makes this forum so great.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07----4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.1 undetectable

Post Edited (BillyMac) : 7/20/2008 5:48:11 AM (GMT-6)


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 7/20/2008 5:05 AM (GMT -6)   
"Misery makes a man seek strange bedfellows".......William Shakespeare

Di
Husband Pete
dx Jan 2001 age 67 gleason 4 + 3 PSA 16.5
seed implant and conformal radiation Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06
Fistula operation 2/07 MSK
Many cystoscopies and ER visits with strictures
catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/07
In line for AUS possibly in Sept 08

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, April 21, 2018 4:50 PM (GMT -6)
There are a total of 2,954,039 posts in 324,070 threads.
View Active Threads


Who's Online
This forum has 162132 registered members. Please welcome our newest member, stinknuggets.
314 Guest(s), 10 Registered Member(s) are currently online.  Details
Kent M., 3 putt, ArtAngel, NiceCupOfTea, Octobrsky13, Jerry_Delaware, blksteeda, 8L8L8, straydog, suchatravesty