MRF Blog

Brian Williams and Hope

March 9, 2012 | Categories: Treatment

 

The online community for melanoma patients has been abuzz today about a report by Brian Williams on a patient who had a remarkable experience with melanoma.

She was being treated with Yervoy, one of the two new drugs approved last year for metastatic disease, but was not responding well.  Her multiple tumors were growing and a particularly large one was pressing against her spine, causing severe pain.

Doctors decided to use radiation to shrink that one tumor in order to ease the pain.  As expected, the large tumor shrank in response to the treatment.  Rather unexpectedly, however, they saw shrinkage in all of the tumors—a truly remarkable result.

The thinking is this:  the radiation damages tumor cells, causing them to shed bits and pieces into the bloodstream.  Proteins from those damaged cells, called antigens, stimulate the immune system, which has already been activated by Yervoy.  The immune system then attacks all of the tumors—even the ones that were not irradiated.

Frankly, I don’t know how to feel about this report.  I am skeptical of the hyperbole that too often accompanies news coverage of cancer research.  Just look at some of yesterday’s headlines:

·         New Treatment Successfully Targets Tumors

·         New Melanoma Treatment—A Turning Point Against Cancer?

·         New Treatment Halts March of Melanoma

Little wonder that patients are excited, asking if this is the magic bullet for which they have waited.

I also know that good researchers--including Jedd Wolchok, M.D. of Memorial Sloan Kettering Cancer Center and the doctor in this study-- have a wealth of knowledge and experience that they bring to circumstances such as this one.  These physicians are tireless in their efforts to understand  how melanoma develops and spreads and grows – and how to stop it in its tracks.    But I know that Dr. Wolchok, and any of the other physicians and researchers on MRF’s Scientific Advisory Committee will tell patients the same thing – one case does not make data.  It gives us promise, hope, and a really good lead. 

For these advances to be born out in a broader spectrum we need to see a rigorous study over time.  We need to temper optimism with reality, inform hope with a genuine understanding of how the scientific process must work.

What do you think?  Do stories like this give you the encouragement you need to stay positive in the face of melanoma?  Do you think it distorts the picture and gives people a false sense that the hard work of curing melanoma is nearly done? 

Comments

- (3/9/2012 - 12:33pm)

I think it gives us hope to battle on, however I think the way the media paints one remarkable result is unfair to those of us who know the reality and struggle to accept it everyday.

- (3/16/2012 - 7:23pm)

Hi, I have 2 yervoy infusions under my belt and had a brain melanoma radiostatically radiated 2 days ago hoping for a similar result. My radiology oncologist told me about 20 people have had this response but they are treading lightly on the results as the sample size is still too small to be significant and they don't want to make a strong claim unless statistically supported. It is still huge news as something is going on with this combination that is helping some people currently. The number of people positively impacted and the durability of the response will be key. There is a copy or brief of Dr Wolchuk's paper up on his profile on the Memorial Sloan Kettering website. Fingers crossed. Good luck to all.

Do stories like this give you the encouragement you need to stay positive in the face of melanoma?  NO...... !

Do you think it distorts the picture and gives people a false sense that the hard work of curing melanoma is nearly done?

YES !!!!

These anouncements give what may or may not be a realistic hope for the future, not necessarily for myself.  One of the problems with the hyperbole that the news media produces leads many (especially non-melanoma patients) to think that melanoma is not a serious problem any more (after all it's JUST a defeated kin cancer, ISN'T it?) 

    I hve been told that I should quit talking about melanoma, (inpication that melanoma has been defeated!).  After all I have survived 5 years at the stage IV level with  out ever even beiing NED.  SO what's my problem?

    My problem is that around 90% of the people diagnosed as stage IV around the time I was, are DEAD.  Many that were diagnosed later at earlier stages are DEAD.  Yes, melanoma researchers are making headway into the mechanics and pathways that melanoma makes when discovered in our bodies, but todate they cannot even tell me how I am likely to have produced the DNA mutation for my melanoma.  Every report that I read that tells who should watch out for the possibility of ever getting melanoma, leaves me with the understanding that I have no worry of having it.  Sure wish the pathology reports agreed!

    I like to read about things that sound promising, but most news raleases need to be more relistic about where the info stands i n the real world fight for survival we are currently in.

I'm me, not a statistic. Praying to not be one for years yet.

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Hope...the media gives us the option of hanging on to hope. It also promotes further study, learning for both researchers and the diagnosed & loved ones. I think that the reality of cancer is front & center for those whose lives have been affected. People I've interacted with in the theater of cancer have a sense of what it is (or isn't) and consider the medias delivery of the latest and greatest remedies within that theater from their own intimate points of view. Staying abreast of the latest research via the media (?) (and my persistance & blessed benefits of our employer) extended the life of my beloved. So do I think that the media provides encouragement-yes I do. Do I think it distorts the work to be done for a cure-no, exactly the opposite. I think when something so amazing as an extension to life or decrease in growth works, I think hope prevails and demonstrates the wiliness of melanoma (cancer in general) AND the continuing work in progress with r&d and education, education, education. Carry on media, just be sure you share your information sources! 
Side bar commentary: I personally don't care how bored folks get listening to me rage and ramble about melanoma....I never cease to be amazed by the "just skin cancer" comments. It is my mission to get anyone who will listen to understand the reality of melanoma.

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