Dr. Harbour Answers Are IN!!!!

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12/13/2012 5:16pm
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Replies: 10

Hello everybody!  Thank you so much for participating in the recent CURE OM Q & A session with Dr. J. William Harbour from Bascom Palmer Eye Institute and CURE OM Scientific Steering Committee Co-Chair.  I apologize in the delay in getting the answers out to everybody.  The link below will take you to the questions and answers.  Thank you again for participating and for your patience!  

http://www.melanoma.org/sites/default/files/u13882/Dr.%20Harbour%27s%20Q%20and%20A.pdf

Don't forget to "Like" the CURE OM Facebook page!  The link is provided below.

http://www.facebook.com/cureom

 

Molly

The battle was lost, but the war must go on until a cure is found.

Sue33CT - (12/14/2012 - 10:26am)

First, thank you for your hard work at getting these questions answered, and for disclosing the fact that Dr. Harbour is affiliated with Castle Biosciences Incorporated. It's a normal thing in the medical community to write articles that support your position on any given subject, rather than in a neutral way.  We learned recently from an investigation of the FDA drug approval process, that all a company has to do is present their positive results to the FDA for review...they are free to leave out all the ones that fail to support their application for a drug approval.

So knowing that, I respectfully request to know who else is on the CURE OM Scientific Steering Committee, because I looked all over the website and can't seem to locate that information.

Because patients such as myself have our lives hanging in the balance...and because I know from private conversations, I know I am not alone in wishing to learn both sides of the story.  There must be "some" reason our doctors are recommending, and putting together treatment plans, based on the testing of abnormalities to chromosomes 3, 6 and 8 in uveal melanoma tumors.

I would also like to have Dr. Harbours opinion presented to some doctors who continue to use the monosomy 3 test, and ask their opinions, too. Doctors such as the Shields and Dr. Sato. Thank you.

"Because of my recent move from Washington University in St. Louis to the Bascom Palmer Eye Institute at the University of Miami in Florida, my plans for starting a clinical trial for treating high risk class 2 patients with an HDAC inhibitor such as valproic acid have been delayed."

This is very insightful.  I am finding I am far more naive than I ever realized - I just assumed that if, for example, my doctor had a better job offer and suddenly up and left the office, the office would not leave their patients hanging! I would assume the relationship is between patient and office/institute/hospital and should the doctor leave, become too ill to practice, win the lottery and run off to Paris, or even die - someone else would step in to care for their patients!  I guess this situation is a good lesson in looking beyond your individual doctor and look very carefully at where they work, too.

I wouldn't read too much into the Caslte affiliation.  There weren't many presenters at the Philly conference who didn't make such disclosures, and these are docs who've been in my gut up to their elbows.  I still trust them.

As for Harbour leaving St. Louis, it's not terribly unusual for patients to follow doctors to new locations, and note that he did say Sato might  have an hdac trial in the pipeline, so rumors of that project's death are indeed premature.

 

--Tom

Keep Rowing!

How is it that the above post ran afoul of the spam filter before I changed "hdac" to lowercase?

No offense, kids, but this forum architecture sucks.

--Tom

Keep Rowing!

Sue, 

In the link provided you will see who is affiliated with CURE OM.  

http://www.melanoma.org/learn-more/types-of-melanoma/cure-ocular-melanoma/about-cure-om

I agree, it can be very frustraiting when physicians leave their current practice.  Unfortunately, with OM, there aren't many physicians that are vested in finding a cure.  And yes, it is unfortunate that many times hospitals can not provide the same level of care after a particular physician leaves.  Like Tom said, it is not uncommon for a patients to follow thier doctors to their new locations.  And yes, at times, it's not cost effective to follow them.  Was Dr. Harbour your physician?

On a side note, the CURE OM website can be very cumbersome and unfriendly.  We are aware of this and working on it.  

Tom, yes, the forum can be rather difficult as well.  Do you have any suggestions on how we can improve it's use?  If so, please contact me at mstoffa@melanoma.org.  

 

Thank you again for your questions and patience.  If you have further questions, or would like more information about something, please feel free to email me at mstoffa@melanoma.org.  

 

Molly

The battle was lost, but the war must go on until a cure is found.

Thanks, Molly.  Will email you offlist.

 

-Tom

Keep Rowing!

"Was Dr. Harbour your physician?"

No - the Shields practice at the Wills Eye Institute are my doctors. 

And they recommended the genetic testing which looks for changes in chromsome 3, 6 and 8 - the monosomy 3 test that Dr. Harbour claims is basically, worthless, not to be trusted, and not accurate. 

So I was trying to look at the "whole picture" - the person and the way they treat patients, their affiliations, the language they use during interviews and how they conduct themselves - in how much weight I give to their opinions. 

Initially - his opinions made me feel like I might have made a bad choice going to Wills - because of his opinion about this test naturally reflected about their professionalism. 

And because a handful of OM patients parrot his "the test you got is worthless and not accurate and old technology" dogma...I spent my early days after treatment terrified and very stressed out. 

Questioning myself - why didn't I wait before I selected a doctor - why didn't I do more research before I agreed to this genetic test and not even realize there was an alternative.  His outspoken badmouthing of his peers proceedures made my experience much more upsetting than it should have been, especially considering he is supposed to be a healer.

Now with the fuller picture of all the "players"  - I am again very comfortable and grateful that I chose to go to Wills and see the Shields - in fact - more secure and grateful than ever in this choice.  Sue from CT

Sue, 

I apologize for any confusion this may have caused.  The mission of CURE OM is:

 

  • To support research and accelerate the development of effective treatments and, ultimately, a cure for ocular melanoma through innovative strategies including international and interdisciplinary collaborations. 
  • To improve the lives of people affected by ocular melanoma by creating systems and programs to provide education and support. 
  • To advocate for the ocular melanoma community.

in CURE OM's short existence, it has been able to bring together the leading physicians to talk about what they are doing and why they are doing it.  In essence, round table discussions to bring everybody up to speed.  Yes, information can be confusing regarding this disease, and yes, it can be terrifying.  I am grateful that you trust in your physicians opinions.

Are you planning on coming to Eyes On a Cure at MD Anderson in Houston, TX?  It takes place March 3 & 4.   

Molly

The battle was lost, but the war must go on until a cure is found.

No trips to anywhere for me...with a $10,000 deductible (already met this year) - and things like travel not covered (oh...and no job)...the only place we'll be going is Philly.  Got my genetic testing preliminary results today - monosomy 3.  Hopefully Dr. Sato will not think the test is as worthless as Dr. H.

Sue from CT

No trips to anywhere for me...with a $10,000 deductible (already met this year) - and things like travel not covered (oh...and no job)...the only place we'll be going is Philly.  Got my genetic testing preliminary results today - monosomy 3.  Hopefully Dr. Sato will not think the test is as worthless as Dr. H.

Sue from CT

lak - (12/27/2012 - 2:51am)

I have been following and trying to understand the differences between the test Dr Harbour promotes and monsomy 3. I am afraid I do not feel the refereces that Dr Harbour gave  which degraded the monosomy 3 test were not that good references. I dont think he was comparing the state of the art technology that is now used to have the monosomy 3 test. In my expierence 6 years following world wide patients it has only been Dr Harbour's test that has been wrong. I have known 2 class 1 patients get metastases less than 5 years from diagnosis I have not known this in a pateint who is diosomy 3 using the modern techniques. In time it must happen and I wonder what kind of gentetics the people who  survive 20+ years before metastases.  So it seems to me that it is Dr Harbour's test that has historically failed more, I suspect now that it has been altered to Type 1 A or B that will happen less.  I dont understand how he can feel so strongly and not see the flaws in his argument.

Time will tell.