Sunday, April 1, 2012

What I've been saying about "indolent melanoma"!

It is pretty clear to me that everyone with melanoma is in for a difficult ride.  The other part that is very clear, is that some people are diagnosed and within a year or two they succumb to it's evil tide. At the same time, there is a relative handful of others...like myself...and some I have found through the boards and in studies...who, though still having their own challenges....have managed to have relatively long stretches where the disease seems to lie dormant.  Clearly, no matter which group you're in at the start...once melanoma kicks into high gear....."Girl! You're in danger!!!"  Though I cannot consider myself in that group any longer, I was termed for years as a patient with "indolent" disease.  I went 4 years between my first dermal primary (albeit with a positive node) to my next and then another 3 years until "something" was found in my lung.  The "something" sat in my lung for at least one year....unchanged.  Granted, after the bronch that determined it was, in fact, melanoma....I rapidly found that I had crap in my brain and soon after that I had crap on a tonsil. During all of those years I had no treatment other than surgery to remove the offending crap.  Luckily, now...I have been NED (no evidence of disease) for over 15 months.  But....why the difference?  How do some people rapidly spiral down...just moments after diagnosis and others of us last 7, 10, 17 years......disease free?????

I have been ranting to Brent about this for some time.  Telling him that THIS is what they need to be studying!  THIS is what makes a difference.  Something in the folks who remain "indolent" needs to be found.  How do they do this?  How do they beat the beast into submission...if only for awhile?????

Well....finally...they are:
http://www.ncbi.nim.nih.gov/pmc/articles/PMC2821074/?tool=pmcentrez

Dormancy of Metastatic Melanoma   By:  Ossowski and Aguirre-Ghiso

"...disseminated melanoma cells do enter periods of prolonged dormancy and that finding ways to induce it, or to prolong it, might mean an extension of symptom free life for melanoma patients."


"Ultimately, understanding the biology of dormancy and the mechanism of dormant cell survival, might allow for their specific targeting and elimination."

In their study, more than 20,000 patients/charts were examined and patients with cutaneous melanoma who had a delay in metastatic disease for 5-10 years totaled 10-20% of those patients.  Patients with a delayed met development for more than 10 years totaled only 0.8-3.5%.  (See why some people still say interferon works?????!!!!!)

Anyhow....can't really say what all this means.  But, I think it is critically important for the future of melanoma patients.  Thanks and kudos to Ossowski and Aguirre-Ghiso! - c

PS I'll give a zillion dollars to the peeps who recognize where the first quote in bold comes from!!!! -c

5 comments:

  1. Ding ding ding! Whoopi in Ghost FTW!
    And I'm so glad you were indolent! It gave you time to get to antiPD1! You are right, if we could figure out what your body was doing to the cancer during that time, we would surely be able to figure out a cure! I love you!

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  2. Finally a medical term that resonates with me...NED! Love it!!

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  3. Man!!! I thought I had y'all! Whoopi is right and so is Ruthie!!!! Yes, NED is pretty good. Not a regular word in medicine or even for most cancers. They get to be in remission, but in melanoma world....NED is the best you can get...so I am glad. Love you both!!

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  4. PS....where should I wire your zillion dollars, Ruthie????!!!

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  5. Hmmm... Not really a fan of wiring and such. I prefer a person to person transfer... Plus, I would get to see you! ;)

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