Stage 1B - 20 years NED.

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4/13/2012 9:42am
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Replies: 18

I post this mostly for those newly diagnosed early stagers - to give them perspective.  20 years ago I was diagnosed with my first melanoma.  No internet back then.  Even the medical library at the University had scarce material on melanoma - and what it did have was doom and gloom.  I really didn't know what life had in store for me - melanoma-wise, that is.  There was no one I could ask questions of, no resources to scour.  I did one or two followups with my derm, but then my insurance changed and I didn't see another derm for 8 years.  That's when I noticed what I was sure was melanoma primary #2.  Primary #3 followed the next year.  I've had 2 stage IB primaries and one in situ.  I am NED from all of them.  I became an internet melanoma researcher after #3.  Learned too much for my own good.  Who'd have thought the knowledge would come into play again in my own family a few years later.  Both of my adoptive parents have been diagnosed with melanoma in their 80's.  What are the odds? 

Anyway, the real point of this posting is to show that MOST early stagers go on to live normal lives and have no need to come back to this board for help.  I can't tell you the number of early stagers who have come and moved on over the 10 years I've been on this board.  Life does go on.  I know there are warriors on this board who started out as stage I and have advanced, but most do not.  I want to show that there is the other side of the coin and that this BB is not a representative sample for the early stagers.

Janner

http://www.MelanomaResources.info

Moodypoodle - (4/13/2012 - 10:00am)

Janner, thank you for this encouraging post.  I've only posted once but am a dedicated "lurker" who reads all your responses faithfully. Your knowlege of this disease is amazing, as is your ability to impart that information in a straight forward understandable manner. 

Every Second Counts!

King - (4/13/2012 - 10:30am)

Great post, Janner.  Thank you for ALL of your contributions to this Board and to the melanoma community.

Congratulations!!!

Stay Strong
Kathie

lhaley - (4/13/2012 - 11:26am)

Congratulations!  I hope melanoma is never part of your life except for your continuing educating others.

Linda

Minnesota - (4/13/2012 - 1:53pm)

Such great and positive news - thank you for helping all the new people here, and congratulations!

Persistence (sometimes) Prevails When All Else Fails

ksmith27 - (4/13/2012 - 2:08pm)

Thanks for this. Was just diagnosed with my first, a 1A Clarke II (Breslow .54mm) with 0 mitoses, so the prognosis is very encouraging. (Probably wil not even need an SNB). However, it's always a shock when the news is received, no matter how cheerful the outlook. I really appreciate folks like you who share their stories.

Janner,

I personally want to thank you for the time you dedicate to this site and melanoma survivors everywhere.  Your posts are always informative and encouraging.

You are inspiring with your knowledge.

Thank you for your dedication to educate.

Barb

We don't know how strong we are until being strong is the only choice we have.

Tim--MRF - (4/13/2012 - 5:51pm)

Janner,

You are truly a rock star on this board!  Your commitment, understanding, and support have helped countless people.  I am glad you have had these 20 years, and hope for many, many more.

Thank you for all you do.

 

Tim--MRF

akls - (4/13/2012 - 7:02pm)

Janner,

Thanks for all your input over the years.  You have been so helpful to so many and I'm so glad to help celebrate this wonderful 20 year anniversary with you!

Amy S. in Michigan

Stage IIIA 5 years NED Completed 1 year interferon 2009.  God is Good.

Such a SPECIAL LADY. You know what I think of you. And I remember what you said to me once, well, back at you!

What can I really say after what Tim said?

P.S.  This is the first time I've seen your picture.  Wow, not only smart, dedicated and compassionate but so enjopyaable to look at to!  Thanks for being you.

 

Jerry

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

DebbieH - (4/14/2012 - 12:50am)

Congratulations Jan, you exceptional woman you!

I don't know what this board would do without you - you are SO good at explaining melanoma melanoma without frightening people who are already scared to death. 

Here's to a lifetime without it ever rearing it's ugly head again!

Deb

DebbieH - (4/14/2012 - 12:51am)

Congratulations Jan, you exceptional woman you!

I don't know what this board would do without you - you are SO good at explaining melanoma melanoma without frightening people who are already scared to death. 

Here's to a lifetime without it ever rearing it's ugly head again!

Deb

triciad - (4/14/2012 - 1:39am)

Janner,

Congratulations!  Thank you for sharing your wonderful news with us.  You are truly an inspiration to all.  I especially want to thank you for all of your support and guidance through my journey.  Whenever I have a question, I can always count on you to take the time to share your wisdom.  I don't know how you do it....but I'm glad you do!  Best wishes for a lifetime of NED and happiness!

Tricia

LaneyMcg - (4/14/2012 - 4:21am)

Hi janner,
Having read your post and all the replies I think everything has been said because you are truly amazing, not just in the vast knowledge you have on mel but for me the fact you have stuck around all these years to help people whilst NED yourself makes you a fantastic unselfish lady who is a beacon of light at a scary time. You helped me in 2006 when I was diagnosed 2a breslow 2.7mm. You translated my pathology/histology report ( I never know what it's called). And helped e make sense out of what I was convinced was my death sentence.
please continue being the wonderful guiding force for so many, and I hope one day soon all on here will be NED because melanoma would be no more.
My thoughts and prayers are with all the warriors still fighting.
Love across the pond
Laney xx

deardad - (4/14/2012 - 11:12pm)

Janner,

That's great news. I have to echo the thoughts of most of the people here, that your presence on this board has been a real inspiration. The fact that you continued to help others on this board when you could have put melanoma far away from your thoughts, tells us how much you care for others.

The advice you give is always straight forward and well informed and no doubt has helped many newly diagnosed.

I believe you are here because of your vigilance Janner. I only wish my father had pushed harder to have his primary removed when he knew something was not right. 

All the best Janner,

Nahmi from Melbourne

NYKaren - (4/15/2012 - 12:22am)

Hi Janner,

I too echo everyone's thoughts, and I thank you for all your help and advice.

And now it's nice see your beautiful face!

take care,

karen

Don't Stop Believing

Janner - (4/15/2012 - 4:43pm)

Thanks for the kind words, everyone!

Janner

Janner, congratulations on 20 years NED! Your efforts in educating early stagers are truly appreciated.

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

KevinM - (4/18/2012 - 11:22am)

Congratulations Janner!!

I echo what others have said...you are truly special!!! Thank you for such an inspiring post! I hope for a lifetime with NED for you!
~Kevin