On the War Path...

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11/11/2010 6:39pm
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Replies: 8

I have been away for some time, livin life and working to pay previous medical testing and the like.  Received some sobering news that I have some nodes/lesions/mets (? I don't know the proper terms) in my right lung.  I am  BRAF: exon 15 V600K mutation.   Please share treatments that have kept the Stage IV Warriors on the War Path.

My best to all with biggest of hugs and loads of blessings from above!  Most importantly...Many Thanks to You All Who Brave the Waters of Fear and Keep Us Informed!!!

Suzan AB  Stage IVa...well maybe Stage IVb now...Purple Painted Warrior Against Melanoma!  With a splash of bright Yellow!

Life is great, PTL!!!

Presently...One Day At A Time.

Charlie S - (11/11/2010 - 7:32pm)

Yes, life is indeed great, however wtf is Stage IVa?   Is that like almost dead, about dead, already dead?: same goes for IVb, wtf is THAT, 'bout dead, beyond dead, barely breathing beyond breathing or what? 

 

Point is, medically, there IS no Stage IV a, b, c, d or anything else, you are Stage IV...........no incremental classifications.

 

I'm Stage IV and have been for quite some time so please understand my tumor humor with a caveat of be sure to know what you are dealng with.

 

There are no lymph nodes in the lungs, closest thing would be hilar nodes which are around  the lungs(mainly around the "wishbone" and slightly above), but not in them.

 

Three questions: 1) What medical test revealed that you have lung mets and 2) Have those test results had a second read and 3) Are you using your BRAF testing to explore a particular clinical trial, and if so, which one?

Charlie S

Anonymous - (11/11/2010 - 8:22pm)

It's true, there is no stage IVa or b.

 

The confusion comes from the complexities of the TNM staging system. This system has three components: 

- tumor size

- lymph node involvement

- metastasis (M0: no metastasis; M1: presence of metastasis)

For melanoma, M1 is further divided into:

- M1a: remote skin or lymph node metastases

- M1b: lung metastasis

- M1c: metastasis on other organs

 

But regardless of the M value, someone with remote metastasis always just  stage IV.

(For the other stages I,II,III there are real subcategories.)

Charlie S - (11/11/2010 - 8:49pm)

Point well taken anon, but that is exactly why I just gag with these "granulated" Stages.  It is also why I think these granulated stages are of absolutely zero value to a patient other than to instill fear, because, of yet, there is not medical value of decision making for the patient in these values.

Spitz Nevus is regarded as Stage O melanoma which mean no cancer.  Yet the AJCC promotes fear of a no cancer to be a cancer.

With a SNB, with a micomet, there is absolutely zero patient information or guidance of what to do forward given a Stage III diagnosis.relative to patient decisions.

 

Yes, matted and with extensions in a SNB are good decision makers; the mere existence of a single cell (which is not yet defined in a SNB in a quanitative way) hardly are solid decision points to have either a LND  or do interferon..............both of which are on the medical decision tree under these circumstances.

What I think the MRF ignores as well as patients is enabling patients to make informed decisiions, not for a cure, but for a way forward to offer the individual patient.........................and I DO think what is lacking is the support fort patients to consider what is next and what they should do.

 

It is not always about a cure, but how to cope.

 

Charlie S

 

 

Cynthia C - (11/11/2010 - 10:45pm)

Hi Suzan AB,

Often those "things" in the lungs are called nodules. Nodules are not necessarily mets even if you carry a diagnosis of cancer. I think most nodules are found on a CT scan. If they are big enough to show and are metabolically active on a PET scan they still need to be biopsied to be sure what type of cancer they are to better determine treatment. I know nothing about Stage IV treatments (and hopefully I will never have to know) but this board is full of knowledgeable Stage IV survivors. I know you will get lots of suggestions and good advice. I wish you only the best.

Cynthia C

Stage III, my actual staging is T3bN2aM0,  NED  almost 10 years!

Jim in Denver - (11/11/2010 - 11:30pm)

Suzan,

You don't say if you have had any treatment to date.  Lung nodules may or may not be melanoma - a biopsy will show that.  It sounds like you die have a nodule biopsied at UCSF.  If so, then they should have told you about treatment options - did they not?  You best option, if you want to go the "targeted" route, might be this one, although you might have to go to LA:

http://clinicaltrials.gov/ct2/show/NCT01037127

Best Wishes,

Jim

Suzan AB - (11/12/2010 - 1:21am)

Wow, sorry about the mistake regarding the staging, Yikers, Charlie S.   I am Already Undead and thought I would be proactive and ask about what has worked for others.  Please forgive my tumor humor.  The Braf information was just that , information incase someone here could share their story with me and others.

A little history...I live 4 hours away from UCSF, my local physician called me today with the results from my recent tests one of which was my 6 month PET.   I have an appt in less than two weeks with the Oco Doctor in UCSF.   UCSF will complete a second opinion before I have my appt.  So, if there are those of you who would like to share, please do so.  However, no more beatings about staging...

My best to all!

Suzan AB, Stage IV

Presently...One Day At A Time.

Jenjen - (11/12/2010 - 1:36am)

Hi Suzanne. I dont really have any advice but I love love love UCSF and Dr. Daud. They are very patient, understanding, smart and competent doctors. Please keep us posted on how everything goes!

 

Jenjen 3a 27, 15 months NED

Suzan AB - (11/12/2010 - 1:48am)

Thanks, I do love Dr. Daud.  He and his staff are wonderful!  I was on GM-CSF for one year and just two months shy of being NED for two years.  

I love your saying...being beautiful is Not about being tan!

My best, Suzan

Presently...One Day At A Time.