NY Times Article on Genetic Testing to OM.

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7/9/2012 8:13pm
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Replies: 6

Todays NY Times featured an article on the genetic testing for OM featuring Dr. Harbour.  Here's the link:

http://www.nytimes.com/2012/07/10/health/genetic-test-changes-game-in-cancer-prognosis.html?_r=1&pagewanted=all

For those of us that attended the CURE OM conference there's nothing new here, but for others there's some valuable information.  

I posted the following on the Ocu-Mel list, so apologies to those who read both!
 
As a Class 2 patient, I am really not happy with this article. Okay, the description of the test is correct. The statistics are correct, and I acknowledge that they are grim. But many of the interpretations are overly bleak and negative (can you be overly bleak here? Yes!).
 
"As for those in Class 2, 70 to 80 percent will die within five years. Their cancers will re-emerge as growths in the liver. For them, there is no cure and no way to slow the disease."
 
There is no cure as yet. The clinical trials that Dr. Harbour mentions are among a number of approaches researchers are taking towards a cure. There are ways to slow the disease, particularly if metastasis is detected early. Knowing that one’s tumor is Class 2 means that one can be more frequently monitored (as I am), in hopes of detecting liver tumors when they are very small. Particularly when they are detected early, there are definitely treatments that will slow the progress of the disease. Some people are starting to talk about “living with” Stage 4 ocular melanoma as a possibility. If tumors are detected early, and treated, maybe one can live long enough for better treatments (or a cure) to be developed. I am hoping, by the way, that I can get into Dr. Harbour’s clinical trial when it starts up.
 
"The results will either give them reassurance that they will survive the cancer — or near certainty that they will die from it."
 
I don’t consider 70-80% “near certainty”. Sorry. Maybe it’s only because I need to look at it this way for my own mental health, but I think the other 20-30% is significant.
 
“Why would you want that information when we don’t have anything we can do for you?” Dr. Flaherty asked. “That is the fundamental question that has caused people to pause.”
Nothing has been shown to prolong the lives of Class 2 patients, said Dr. Evangelos S. Gragoudas, an ocular oncologist at Massachusetts Eye and Ear Infirmary. Not more frequent monitoring of the liver, not more aggressive or earlier chemotherapy. Nothing.
 
Again, the idea that there is ‘nothing they can do’, and that nothing will prolong the lives of Class 2 patients is NOT true, according to what I’ve been hearing on this forum and at the Patient and Caregiver Symposium in Philadelphia.
 
“… those in Class 2 have no real options other than to wait for the inevitable.”
"...Class 2 patients, most of whom are doomed anyway"
 
Gina Kolata (the writer) should definitely not consider a second career in genetic counseling.
 
Dr. Harbour has a different view, and conveys it to his patients. He tells them that if they are Class 2 he will monitor them closely, doing liver scans every six months and blood tests in between, and will treat metastases with chemotherapy, delivered to the site of the cancer’s spread, as they occur. 
 
Yes, that is the type of approach that the leading clinicians treating O.M. are taking.
 
Also, being diagnosed with a type 2 tumor has led me to explore other options of fighting cancer, in the hopes of making my system as strong as possible to fight off the cancerous cells, and the environment in my body as inhospitable as possible for them. This includes – currently - changing my diet, getting lots of exercise, meditating, taking some supplements, and seeing a Chinese medicine specialist associated with the oncology program at UCSF.
 

In any case, if I weren't going to live for long, I wouldn't want to think about it as "waiting for the inevitable". What a fatalistic statement. In that case, maybe everyone's life is just "waiting for the inevitable". Everyone is going to die some day.

Deborah
DX ocular melanoma 6/30/11
Class 2 by Castle Biosciences test
proton beam treatment 8/11
Currently NED by liver MRI and chest CT

Hi Deborah and everyone,

Deborah, I both agree and disagree with your assessment of Gina Kolata's article.  Everything she said was technically, scientifically correct.  There is no cure, period.  Whether early intervention extends life is unknown--i.e., there are no data to support a conclusion one way or the other.  In other words, it has not yet been shown that early intervention can prolong life.  That doesn't mean that it doesn't, it just means that it has not yet been demonstrated in any scientific way.

But for us, we who have been afflicted with OM, what else is new?  Hardly anything we encounter has been demonstrated in any scientific way.  Take even Yervoy, which had enough supporting data to convince the FDA to approve it for melanoma.  OK, but if you look closer, the data support its efficacy on cutaneous, not ocular.  So, is there scientific data to show that it can, sometimes, prolong the life of a metastatic OM person?  Not really.

Does that mean we should not try it?  Of course not.  Does that mean we should not hope that it might work?  Of course not.  I agree with you completely that we OM patients would be better off adopting the philosophy that there is hope out there, at least that there may be hope out there.  And I would much prefer seeing a doctor who has also adopted that philosophy and is willing to try the hopeful new things in the pipeline.

We OMers are on the frontline of science where the ground is more than soft; there may/will be pot holes, sand traps, and quicksand along the way, with no guideposts or directional signs.  To stand still, without treatment, is to say we know we are in quicksand, but should make no attempt to get out of it.  We need to step out of the quicksand we know we are in, and hope that we can find solid ground. 

I also don't understand those who "don't want to know."  They are the ones who will be left sinking in the quicksand, without even trying to get out.

My story:  1980 diagnosed with choroidal melanoma, treated with photocoaguation (laser)

                 1988 recurrence in eye, treated with brachytherapy

                 Annual CT liver scans, blood work, etc. (in retrospect, not frequent enough)

                 2002 two lesions in liver

                 2002-present:  treated with many, many things, and been on many clinical trials.  Cancer pauses then grows and spreads (I now have lesions in liver, lungs, abdominal wall, peritoneum, chest wall, and more.  I am 76 years old, feel pretty good (OK, so I take a lot of naps), have a life, visit grandchildren in other cities, keep up with research on OM (practically a full time job), etc.  So, I have been Stage 4 for almost 10 years, and am definitely "living" with it.

Life is worth living, and I do believe that my efforts at both early detection and treatment have prolonged my life, whether that is now supported by scientific data or not. 

Esther

Hi Deborah and Esther,

Thank you both for your replies. My concern with the article was how it was presented, meaning the tone.  I know it's not a topic that is happy but we do need to have hope and that's important to get across to people.  

I too, think the treatment that has been developed in recent years has prolonged life.  I've been in touch with a woman who's husband was initial treated by a doc that didn't believe in doing any follow up.  A few years later he was diagnosed with MUM and died within about 4 months. I'm hearing less and less of docs not recommending follow up scans but I also know that patients are getting more educated and are advocating for themselves. I believe this is because of all of the boards and forums.

My understanding is that if you're diagnosed with MUM you are considered stage 4 and given 4-6 months to live.  Is that correct?  What do the researchers think is prolonging the lives of all of the people that live longer than that, some for years?

Best to all,

Anne Marie

Anne Marie,

If you have metastasis in a vital organ, e.g., liver, then you are automatically Stage 4, and are given 4-6 months to live.

Yes, some people are getting the word and getting regular scans, but a lot are not.  Think of the ordinary person who is diagnosed with cancer in the eye, the ophthalmologist treats it, then says you are home free--go home and forget about it.  That person is not going to get on forums or listservs or do research or worry about it.  The ordinary person will want to believe that there is no further threat, and will try to forget about it.

The problem is that no one has definitively determined whether early detection and early intervention results in longer survival.  Say two people metastasize two years after the eye.  One has had regular scans and discovers it right away; gets assorted treatments, and lives for another two years.  The other person doesn't get scans, and only discovers that they have mets (by now all over their body) 3 1/2 years after the eye, then dies in 6 months.  Both lived four years after dx in the eye.  Did the early detection and treatment help the first person live longer than they would have if they had not been scanned and treated?

It's an issue that is hard, if not impossible to tease out of data.  How can you collect data to tell you whether treatment helped?  The people who don't get scanned, who don't get early diagnosis of metastasis, well, it takes a while for their cancer to spread, to cause symptoms that might send them to a physician to be diagnosed with mets.  How do you prove that someone who gets early diagnosis and gets early treatment of mets lives longer than they might have otherwise?  That's why a lot of docs still tell people that it isn't worth scanning; that early detection doesn't result in any gain in length of life.

Although you, Deborah and I all believe that early diagnosis and treatment does prolong life, it has not been proven.

Let's remember that the much trumpeted Yervoy, was determined to extend life for only an average of 4 months.  Not that much from my point of view, but hey, I'll take anything I can get.

We must not confuse the psychological benefit of having hope, with the hard, cold facts of this disease.  It is the hard facts and data that will lead to a solution.

Esther 

Esther,

Points well taken (and well expressed)! Thank you!

One additional comment - although the hard facts and data are what will lead to a solution, on an individual level hope is critical, and not only leads to a better life but may possibly prolong life by helping to strengthen the immune system.

Anne Marie,

I agree, my real problem with the article was the tone.

 

Deborah

 

Anne Marie & Deborah,

We do not disagree.  It's hard to separate the emotional from the scientific.  Emotions zip around in leaps and bounds, rising to enormous heights of hopes based on the smallest indication; science crawls along, refusing to give hope until all the number of patients are "enough," the confidence levels are within accepted limits, and all the i s and t s are dotted and crossed.  If we waited for hope until that point, we'd be dead before we even tried to help ourselves.

So, cheers to hope!

(and cheers to science),

Esther