Combidex scan in Holland!

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dakina
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/25/2009 10:34 AM (GMT -6)   
Hello all fellow members with prostate cancer. Perhaps this is repetitive but people need to know this scan is a life saver. As it now stands however there is only the hospital in Nijmegen Holland where it is available. I had a radical prostatectomy in 2001 at the Mayo Clinic in Rochester Minnesota. For six years I was in remission. Then my psa became detectable. The problem: What to do? Radiation was the only option but not knowing where the cancer was made it improbable that it would succeed. To make a long story short, I saw a prostate cancer medical oncologist in Virginia, Dr. Charles Myers, himself a victim of prostate cancer.  I went to Holland, had the scan in the late spring of 2008, and the results showed four positive lymph nodes in my left groin. I began radiation treatments at the Dattoli Center in Sarasota Florida in early August 2008. So far my psa is not detectable. I know the combidex scan gave me a chance to live, without it I would have died. Dr. Barentz and his staff are very friendly and helpful. This is truly a miracle of modern medicine, and I would be very surprised if it didn't become standard practice here in the US. People are dying for lack of access to this proceedure.
 

Carlos
Regular Member


Date Joined Nov 2009
Total Posts : 486
   Posted 11/25/2009 11:10 AM (GMT -6)   
Why hasn't the Combidex scan been approved for PCa use in the US? Has approval in the US for use with PCA been sought?

Carlos
Diagnosed 2/2008 at age 71, PSA 9.1, Gleason 8 (5+3)and stage T1c.  CT and bone scan neg.
Robotic surgery 5/2008, nerves spared, bladder neck spared with pelvic floor reconstruction.
All margins, SV and lymph nodes were neg. 
Staged pT2c, Gleason sum 8 (5+3).
Continent at 6 weeks. 
PSA <0.1 at 18 months, Nov. 2009.


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4235
   Posted 11/25/2009 5:25 PM (GMT -6)   
The scan is just an MRI with a powerful Telsa 3 MRI; it the imaging agent that is not approved. The agent is Sirinium and is nano iron oxide particles that is given IV the day before the MRI. A cancerous lymphnode will not let the particles in, whereas an infected node will. The MRI picks this up as it images every node. The imaging agent is not approved anywhere and it is classified as experimental in Holland.
The agent is perfectly safe if given slowly, over an hour's time. If it is given faster it will cause back pain that goes away as soon as the IV is stopped.
The Combidex is 96% accurrate if it classifies the nodes as clear. There have been false positives; not anywhere close to prostascint. A single suspected node can always be biopsied to confirm PC, but if a string of nodes is positive you can be fairly certain it indicates PC. Dr Barantz and his assistant review every scan independently then compare their results. Every lymphnode is classified on a scale of 5 as to it's level of suspicion.
I had one node with a low suspicion level of 2. Because of its location and the low probability on the scan I was classified as being clear of lymphnode PC. It saved me from having to go on full blown HT and having my upper and lower lymphatic system radiated.
I don't know why the FDA is dragging their feet, but everyone I have talked to that has had the scan has found it very valuable as they were able to target the infected lymphnodes with radiation.
The same agent with size 20 nano particles is approved for use in detecting liver cancer. I think they use either a size 1 or 5 nano particles for PC.
Myers, Scholz and Strum routinely send their patients for Combidex scans. These are the only doctors in the US that do, but patients from all over Europe and Austrailia go to Holland for the scan. The cost is very reasonable at about $2500, far less than an MRIS, bone or CT scan which will add little to your DX.
None of my other doctors that were experienced in PC had ever heard of it.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 11/25/2009 6:19 PM (GMT -6)   
 No comments

Post Edited (zufus) : 11/27/2009 5:59:07 PM (GMT-7)


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2216
   Posted 11/26/2009 8:01 AM (GMT -6)   
Very Interesting as I live in the Netherlands (and have done for over 25 years)


I had not heard or read of the Combidex MRI procedure until I saw this post. And have just been trying to read up a bit on the Internet (Fortunately I can read the articles in Dutch too!)



Maybe this is something that I will have to ask about in the future if my PSA doesn't get lower or doesn't stay down. I had my Da Vinci at the Antonie Van Leeuwenhoek Ziekenhuis-Nederlands Kanker Instituut in Amsterdam, (You can understand why it's called the AVL-NKI or even just the AVL)



I assume that the newness of this technique means it is still at the experimental stage and thus has to wait for a few green lights about its proven usefulness as a diagnostic tool (and safety) before it is unleashed.

And in addition to the equipment and procedure being given the okay, there will also be a need to give doctors who may want to use this elsewhere adequate training to interpret the images correctly etc before having it all to themselves (it seems that at present Dr Jelle Barentz does all the analysis himself.)





We seem to find ourselves right in the middle of a mini quantum leap in new treatments and diagnostics etc fro PCa



Alfred

dakina
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/26/2009 1:10 PM (GMT -6)   
Nice to see all the replies. As one already mentioned the combidex scan is identical to what is available here, the scanning machines are the same, it is just the iv iron nanoparticles which give the improved contrast. It is craziness why this is unavailable, there are many, many thousands I would think who could benefit, and not just prostate patients.
 
    Alfred: You should go to the hospital in Nijmegen for an evaluation if your psa rises. If I had my treatment choices to make over again I would opt for the combination of seed placement and external beam IMRT over surgery as offered at the Dattoli Center in Florida. With surgery there is the skill of the surgeon involved, the fact that he doesn't know exactly where the cancer is, or isn't, when operating. I Believe in the future radiation will be the option of first choice. But I also believe it is important when having raditation to go where they are very experienced, and I also believe just external beam isn't enough in many cases, especially those patients where the cancer is suspected of escaping the prostate. That is why for high risk patients I believe seed placement, followed by IMRT at a latter date is the best option available at the present. Hormone replacement therapy isn't fun, and it does things to your body that take a long time to recover from if at all. Per Dr. Myers in Virginia I will be on Avodart for the rest of my life. This drug is not innocuous, it takes away much of whatever sex drive is left, at least it is my experience so far. As far as I know the company AMAG holds the rights to the injectable contrast agent here in the US. Why they aren't persuing a more active course with the FDA I don't know. I will have to speak with Dr. Dattoli about it when I see him in April.
 
Sherman
 
 

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/26/2009 1:54 PM (GMT -6)   
Not to crack holes in the conspiracy theory, but Combidex (ferumoxtran-10) has well publicized issues. In fact they are attempting to develop a new agent that will hopefully improve the accuracy of the test. In the attached link and study, 19.6 percent of patients in the study showed clear lymph node invasion. But only 75% of those were confirmed positive during biopsy after the Combidex scan and a whopping 24% were inaccurately diagnosed with false positives in the lymphatic system. I believe that Combidex is a good test, but it's accuracy rivals the PSA test.

prostatecancerinfolink.net/2009/06/17/combidex-mri-and-identification-of-nodal-metastases/

Tony
Prostate Cancer Forum Co-Moderator

Post Edited (TC-LasVegas) : 11/26/2009 1:20:10 PM (GMT-7)


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4235
   Posted 11/26/2009 10:56 PM (GMT -6)   
Tony,
It's true that there were 24% false positives. This is offset by the fact that 41% of the confirmed cases were found outside the normal lymphnodes that would have been removed during a surgery and would never have been discovered using the normal surgical dissection protocols. I think that this is very signifcant. Also omitted from this study, but inculded in other studies is that 96% of those showing clear by the Combidex scan were confirmed to be clear. The test is not perfect but does give us more information about lymphnode involvement than any other scans and surgical lymphnode dissection.
Also the suspected nodes can be biopsied to confirm involvement; this is still far better than surgical removal.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 11/29/2009 2:53 PM (GMT -6)   
Thanks John T. you do know alot about this proceedure, enough so that you know the arguements that are discussed. Years ago Dr. Strum mentioned that this was 'the best'(or most definitive) scanning method that was available to us patients(he admitted, also it is not perfect), does not surprise me. He is amongest the better informed oncologists on PCa on any level, his book speaks for him as of his expertise.

John how old is proceedure now by Dr.B, like 10 yrs????? Is is not brand new and has a track record. You can inform us some more on this, it would be worth listening to as our current scanning methodology is lacking.

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4235
   Posted 11/29/2009 4:00 PM (GMT -6)   
Zufus,
I got to spend about 1 1/2 hours talking to Dr Barantz. He's a brilliant guy that has devoted his life to researching PC and better ways to detect it. He spoke about the recent research in which Combidex discovered significant PC in lymhnodes that were outside the path of surgical removal and dissection. This surprised him and all the researchers and was considered a significant discovery. Combidex has been around for 7 or 8 years and is also used to DX other types of Cancer including bladder cancer.
Dr Barantz is now working on trying to fuse images from CDU, dye enhanced contrast MRI, and MRIS in order to get more of a complete picture of the prostate.
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


dakina
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/29/2009 6:46 PM (GMT -6)   
There aren't any perfect tests. I've argued with some doctors who are ignorant enough to suggest psa screening tests for their patients aren't helpful because "there's too many false positives". My reply was: Dr. if you had the cancer, you might feel differently", that got a negative response as well, "I don't want to talk about it anymore". If you're getting the run around, go see a real specialist like those mentioned here. I had a gleason 9 tumor post surgery with a psa of 2.5 (the day of surgery)  and clean margins per the path report at Mayo. I almost went for radiation following surgery, it was all set up, then I cancelled it. Who knows what would have happened if I had the radiation as planned.
All I know for sure is when I needed to know where the cancer was located, the combidex scan shone clear and true. Without it I would be a dead man walking.
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