Prostate Cancer Survivors

 

YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

 

Return to Website

This forum is for the discussion of anything to do with Prostate Cancer.
There are only four rules:

  • No fundraisers, no commercials (although it is OK to recommend choices of treatment or medical people based on your personal research; invitations to participate in third-party surveys are also acceptable, provided there is no compensation to YANA);
  • No harvesting e-mail addresses for Spam;
  • No insults or flaming - be polite and respectful at all times and understand that there may be a variety of points of view, all of which may have some validity;
  • Opinions are OK, but please provide as much factual evidence as possible for any assertions that you are making

Failure to abide by these simple rules will result in the immediate and permanent suspension of your posting privileges.

Since this is an International Forum, please specify your location in your post.

General Forum
Start a New Topic 
Author
Comment
Dr Strum and Combidex

Dr Strum will be known to many of you for his book A Primer on Prostate Cancer: The Empowered Patient's Guideand his work on the P2P list. He is looking for men to agree to join him in his aims of getting a better deal for men with PCa. His first target is to try and find a way of keeping the Combidex scan and this is the mail he sent to members of the P2P List:

Dear Folks,

Some of you have been responsive to my urging that we must be involved and committed to ensure that we have not lost the most critical imaging tool in detecting lymph node metastases--COMBIDEX. I have added, one by one, a total of 84 names to a group email list. Through our unity we can change opinion and hence actions. There are 9 million PC patients in the USA and with those 9 million there are probably a dozen family and friends that can be associated with each one of those names.

What I am saying is that 84 names is not a bad start but I would like to see at least 200 names for this mission to likely have a chance of success. Remember, I am taking the time to add each person's contact information to the Combidex Group Email List. This is time consuming for me and my work load is already heavy.

I urge you to communicate by email and find additional persons and to send your contact information to Nancy Peress at nperess@charter.net. Remember that Nancy is also having to process each one of your emails and then send them to me so she too is putting in significant time to this mission.

The format I would prefer that facilitates data entry to my Contacts is:

John Doe
1234 Chestnut Street
Camden, Maine 12345
T: 123-455-5666
F: 344-666-0000
M: 123-444-9999
E: john@needmorenames.com

If you have no fax or mobile (cell) info, then just omit those lines.

"Our humanity lies in our human unity."-- Stephen Strum, MD

Stephen B. Strum, MD, FACP
Medical Oncologist specializing in PC since 1983

Re: Dr Strum and Combidex

For those of you that dont know what Combidex is, here is a very good link explaining the treatment.
http://www.lef.org/magazine/mag2009/mar2009_Combidex-Detecting-Metastatic-Cancer-Lesions_01.htm

Unfortunately it is not available in Australia, as far as I am aware. I had a CT scan and an MRI in October 2009, the CT scan came back clear, but the MRI showed a 2.5cm lymph node in my pelvis was invaded. I had the same result a month later. At that time because the scans were for admittence to a Trial Medication, they only wanted me to have a CT scan, but when I insisted on an MRI as well, I had to pay for it, or I should say the DVA did.

Any treatment that will enhance the chances of detecting cancer, can only be good. why are they delaying the approval of this MRI contrast infusion? when all the trials etc. have been so positive.

Re: Dr Strum and Combidex

John,
It is much worse than simply delaying approval. Because of the length of time taking for approval the company making the imaging agent has stopped making it and the Combidex scan is being discontinued as of April 10.
This is the only scan that has been proven to detect lymphnode PC at a 96% accurracy with about 8% false positives. As a comparision prostascint has a 47% detection rate and a very high % of false positives.
I travelled to Holland in Feb 2009 with a G4+3 and a psa of 40; stats highly suggestive of lymphnode PC. without the combidex scan showing all nodes clear I would have had to undergo full body radiation and 13 months of HT. So I was one patient that greately benefited form the scan.

Re: Dr Strum and Combidex

Has anybody got DR Strum's Email address to join his campaign?

John
Australia

Re: Dr Strum and Combidex

John,

Dr Strum does not like receiving mail directly so his e-mail address is no available for the public.

The piece I posted is clear if you want to join his List:

I urge you to communicate by email and find additional persons and to send your contact information to Nancy Peress at nperess@charter.net. Remember that Nancy is also having to process each one of your emails and then send them to me so she too is putting in significant time to this mission.

The format I would prefer that facilitates data entry to my Contacts is:

John Doe
1234 Chestnut Street
Camden, Maine 12345
T: 123-455-5666
F: 344-666-0000
M: 123-444-9999
E: john@needmorenames.com


All the best

Terry in Australia

Re: Dr Strum and Combidex

sorry Terry, I thought thay I had deleted that reply, I realised that the email address was in the letter, after I read it again

Re: Dr Strum and Combidex

Dr Strum really has the bit between his teeth now and, as is so often the case is not satisfied with the 200 members he originally aimed for - he wants more. So please consider joining him - this is not a big site; we don't have a very large number of visitors, but there are enough to make a difference. How many of you have responded to Dr Strum?? Go to it.

All,

I have 297 names & contact information relating to patients and/or loved ones willing and anxious to be part of a pro-active movement to advance imaging in PC (prostate cancer). A man cannot be intelligently treated with the hope of control of PC unless we can assess his true STATUS as to where the PC is. Why bother to select a RP or Cryo or a Seed Implant or HIFU if imaging techniques reveal metastases to the lymph nodes? What's the point in doing prostate bed RT after PSA recurrence (PSAR) following RP, Cryo or HIFU if there are nodes in the pelvis or beyond that are not being treated by the typical radiation field used in PSAR following these kinds of local procedures?

My goal was to obtain 200 names but now I want more. There are 9 million men with PC in the USA today and likely 81 million PC patients + loved ones. There are 50,000 members of Us Too, International, 30,000 or so names of PC patients and PC-related physicians in the PCRI database, and I would guess at least 25,000 names in the PAACT (Patient Advocates for Advanced Cancer Treatments, Inc) database.

----> Why cannot those officers within these
groups act in unison to make this effort to bring Combidex to the PC patient around the world a reality? This could be a grass-roots movement that not only will change the level of imaging from the crude and highly insensitive yet costly CT pelvis + CT abdomen to the much more accurate methodology of nano-particle-based imaging using iron particles as a contrast agent for MRI.

Think about how ridiculous it is to have to fight so hard for a contrast agent (not a chemo drug but a contrast agent) to advance the evaluation and CORRECT treatment of men with PC. Think of how so much emphasis has been focused on healthcare costs (HCC), and yet men are subjected INAPPROPRIATELY for RP, RT, CRYO, HIFU at various stages of their illness when nano-particle-based imaging can enhance accuracy and hence efficacy while reducing the occurrence of misdirected treatments that have resulted from unsophisticated staging of metastases. This is billions of dollars each year--WASTED + the opportunities to truly control cancer--LOST.

Let me bring this point home with a true story.
In 1973 I attended a tumor board at Century City Hospital in Los Angeles. The case of an eight year old girl with an osteosarcoma of the femur was presented. The majority of the physicians present recommended amputation of the leg. I had just come from a 2-year assignment at Brooke General Hospital working in affiliation with MD Anderson in Houston. Our oncology department at Brooke was using a new technology called "whole lung tomography". This preceded what you know as CT (computerized tomography) or alternatively referred to as CAT (computerized axial tomography). Whole lung tomography took many "cuts" through the lung field revealing a much better resolution of the STATUS of the lung tissue (parenchyma). With this experience, I related to the tumor board that whole lung tomography would be important to do before subjecting this unfortunate child to a full leg amputation. The other doctors could not conceive that such a test could reveal more. The concept of "depth of resolution" was not part of their mindset. But, they agreed to wait until the study was done and to see the results. The whole lung tomograms revealed thousands of metastases in both lung fields. This child would have been operated on and then within weeks or a month or so her routine x-ray would have revealed hundreds of tumors--and surgery would have been blamed.

The problem was that the level of resolution of the routine chest x-ray was just too crude. The same is true for CT scans and even for PET or PET/CT scans. And the same is even true for lymph node sampling where Combidex in men undergoing nodal sampling at RP detected that 40% of nodal metastases were missed by surgical staging (Prostate Cancer: Detection of Lymph Node Metastases Outside the Routine Surgical Area with Ferumoxtran-10–enhanced MR Imaging. Heesakkers RA et al, Radiology 251:408-414, 2009).

How can we allow such an important advance in the assessment of nodal metastases to be made unavailable in our arsenal against cancer?

I am asking again for your involvement--but not just you but those in your sphere of love and caring. I believe that if you are not part of the solution you are part of the problem. I believe you are the change you wish to see in this world. I believe that our humanity lies in the expression of human unity. I believe that a house divided cannot stand and that there is strength in unity. To this I would add that talk is cheap, but that a commitment is venerable. Go from a place of AIL: Apathy, Indifference to cause, Lack of Unity and move instead to a place of ACT: Action, Commitment, Togetherness.

"At the moment of commitment, the universe conspires to assist you." -- Goethe


Get me more names with full contact information. Send them in the format of:


Stephen B. Strum

Street Address

City, State Zip

T: telephone number

F: fax number

M: mobile or cell number

E: email address


---> Send the information to
miwha@sbstrum.com with the subject "I AM COMMITTED TO THIS CAUSE"


Let's grow the list of constituents to 500 or
even 1,000 or beyond so when the time comes for
interaction with regulatory agencies or
pharmaceutical companies or members of Congress,
we will be poised and ready to assert our opinion
and have a voice in what happens to those whom we
love. I have lost too many dear friends from
PC. I do not want you to have voids in your heart as well.


"Our lives begin to end the day that we become
silent about things that matter."

-Martin Luther King


Stephen B. Strum, MD, FACP

Medical Oncologist specializing in PC since 1983

Member of ASCO, AUA, ASTRO

Re: Dr Strum and Combidex

Good on you Terry,

Come on Guys, lets all get together and support Dr. Strum, it may be to late for a lot of us, but think of those that will follow in our foot steps, as we all should know, with PCa, early detection is the name of the game, if you really want to be cured of the desease.
If Drs. can see where the cancer has spread to, then there is a greater chance of the total cancer being treated, not just the what they think they can see.
40% of missed nodal metastases after surgical staging, is a huge amount and we should not accept this, if there is a imageing agent, that has been developed to find the nodal metastases before surgery, thus maybe changing the decision of what treatment will be given to stop, or cure the cancer.
As the saying goes "The ball is now in our court", so lets belt it with all our might.

John
Australia

Re: Dr Strum and Combidex

Count me in, my contact has been emailed. Don't delay! ALL of you in my beloved YANA Family should send your contact info today! (or tomorrow, for those of you in Australia:-)

send to:
miwha@sbstrum.com
with the subject "I AM COMMITTED TO THIS CAUSE"

format for YOUR contact info:
Stephen B. Strum

Street Address

City, State Zip

T: telephone number

F: fax number

M: mobile or cell number

E: email address

Re: Dr Strum and Combidex

Have there been any updates on Combidex? My father had done it a year ago in Holland however he was also under Lupron so the results did not show much (his PSA was too low at the time).

RETURN TO HOME PAGE LINKS