Survivors

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11/8/2010 11:30am
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Replies: 25

I am 30 years old and was diagnosed with melanoma in June 2010. Over the summer, I had a WLE and SNB. One of the lymph nodes had microscopic melanoma in it. I then had a lymph node dissection of my left groin in August. Luckily, those lymph nodes were clean. I am stage 3a. In September and October, I went through the induction phase of Interferon and now am in the maintainence phase. I am lucky to not have many side effects and am working full time.

This forum is great for all us melanoma survivors to connect but lately I feel I'm seeing a lot of people who have succombed to this awful disease. Right now I'm at the point where I could use a little inspiration - I want to hear stories of people who are kicking this disease's ass! I know that there is a chance this could come back but I need to hear from those of you who's has not come back . I need to know that that is a possibility for me....for us.

jag - (11/8/2010 - 12:10pm)

Well, if you look at my patnet, it has comeback for me multiple times and it hasn't been easy, but I have been NED for >2yrs now.

Best

John

Insert Generic Inspirational Motto Here

debbieVA - (11/8/2010 - 1:07pm)

Hey There.....

Stage 4 since 2006....Kicking A$$ everyday!  Plan to be here years from now saying  the same!  Running this race to win...sounds like you are too!

Best to you...CHEERS...

 

Debbie Stage 4 NED

makedoandmend - (11/8/2010 - 2:30pm)

hey kate,

 i am stage III person as well. Had the WLE and having full groin dissection on friday.  What are your plans after interferron? Just curious because it seems like there isn't many options for those at stage III.  I feel like I wasnt to get a head start on this battle but there aren't many options. Hoping to hear some good stories in response to your post! I could use the inspiration as well.

-pat on long island

makedoandmend - (11/8/2010 - 2:30pm)

hey kate,

 i am stage III person as well. Had the WLE and having full groin dissection on friday.  What are your plans after interferron? Just curious because it seems like there isn't many options for those at stage III.  I feel like I wasnt to get a head start on this battle but there aren't many options. Hoping to hear some good stories in response to your post! I could use the inspiration as well.

-pat on long island

Fen - (11/8/2010 - 3:46pm)

 

I am stage 3 or 4 (no primary) and just celebrated 5 years of NED. There are many Stage 3 and 4 survivors out there but oftentimes they stop visiting the board and get on with their lives.

You *are* lucky to have few side effects of interferon. Here's hoping it does the trick!

Fen

lhaley - (11/8/2010 - 3:57pm)

Stage IV since 06!!   I have had a few recurrances that were treated with surgery - last one 3 weeks ago. Currently NED with no treatments planned.  I plan on being around to see many new drugs developed! 

Where are you being treated?

Linda

Bruce in NH - (11/8/2010 - 3:59pm)

Hi Cate, I was diagnosed Stage 3B in 2003, had surgery and made it through 8 months of Interferon before melanoma returned. More surgery followed by radiation treatment, then leukine injections for a year in a clinical trial. However, this combination kept me disease free for over 4 years. There is always hope. Stay positive and enjoy life as much as you can.

Bruce

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

BethA in VA - (11/8/2010 - 4:51pm)

I have had MM for 17 years.  Diagnosed at age 39.  I am Stage 3B and 6 years NED.  I celebrate every day and know that may change tomorrow...but I don't have a crystal ball, so anything can happen.  I hope and pray every day for MM to stay away!!      Beth 

Melanoma tends to cut into your looks!!

 

Jydnew - (11/8/2010 - 7:14pm)

Hi,

My husband was dx'ed in 2002 at age 26 with stage iiia melanoma - primary in his arm, microscopic deposits in 1 lymph node.  His only intervention was surgery - a WLE and complete lymphodectomy in the right arm basin.

He remains NED - will be 9 years in January.  We've had scares (not relapses, but completely benign stuff showing up on scans), but we know we are blessed...  We've done some awesome things since his diagnosis - moved several times, traveled the country, had 2 children - he earned a second college degree and a masters... and basically kick back everyday of our lives and enjoy each other.  Can't say it was always easy... the aftermath of his diagnosis threw us both into a tailspin (he was dx'ed a few weeks after our wedding) that lasted a good 2 years until we got our feet under us again, but life has been sweeter than ever since then...

I would guess there are loads of people like my husband out there... it's hard for me to come here anymore because the fear immobilizes me, and I need to live in our present and future - I have the tendancy to stress and rehash the pain of the past.

I hope everyday for a cure for this horrible disease.

CarolA - (11/8/2010 - 8:11pm)

Jydnew's response is prompting me to respond.     My orig diag was March 2005, Stage III, micro mets to 2 nodes of 3 of the sentinal nodes, left axilla.    Total LND October 2005, no evidence of disease in those nodes.   Did not do interferon, just observation, annual CT scan, chest x-rays at first every 4 months, now 6 months.    Recurrences on the left breast, several WLE's, ultimately leading to mastectomy in 2008.    And, so far so good!

I haven't posted here since the new format.    I also backed away before that as I found myself getting overwhelmed emotionally at times;  and then feeling guilty for not contributing,  as this board was so much of my lifeline during my "early" years.    This melanoma can screw with your mind!    This is why I mentioned Jydnew's post prompting me to write and I thank you for your honesty.

I did see my oldest daughter get married, saw all three kids graduate from college and move out of the house, and I am now spending enjoyable early retirement days with my wonderful husband----things I worried I would never see.

We are out there, survivors we are!

CarolA

Stage III and hanging on!

Amherst, NY   

CarolA

EmilyandMike - (11/9/2010 - 9:04pm)

Love these stage 3a stories! My husband is also in the same boat. 15 months NED with observation. Treatment options suck so we just try not to stress and keep up with latest research just in case. All my best to everyone!

Emily www.emandmichael.com

Our experience with melanoma: http://emandmichael.wordpress.com/

SuzannefromCA - (11/8/2010 - 10:36pm)

Hi Kate,
I was diagnosed stage IV in November 2006, did 18 months of Biochemotherapy and am 4 years NED, there is hope out here, never give up!

Every day I wake up is a gift!

Anonymous - (11/9/2010 - 5:30am)

I was diagnosed stage 3a as well, in Feb 08. I had a right groin dissection and did one month high dose interferon. I've been NED ever since!! Although I face a daily battle with lymphadema, I feel as though my fight with mel is behind me. It took some time and lots of tears, but I have gradually overcome my fear of "when will it return?". I am now living life as a proud survivor, sharing my story and letting others know that there is life after cancer. I've continued to visit this forum to follow the stories and to offer silent prayers to those who have to fight the battle harder then I did. I will send one your way with hope that you too will have a positive outcome to your journey.

 

scots - (11/9/2010 - 6:59am)

I was diagnosed Sept. 2010. Thanks to everyone who posts here.  Reading the posts have help me to try to stay positive during the diagnosis and treatment phase.  Day 1 of HD interferon done.

 

Scot

kateboston - (11/9/2010 - 4:40pm)

Thank you to everyone who responded - this helped so much! I've been having a tough time and your success stories have truly helped me realize that if it can happen to you, then a life NED is possible for me!!

Cynthia C - (11/9/2010 - 11:38pm)

Hi kateboston,

I was diagnosed 12/2000 with kind of a gross lesion on my right lower leg, Clark's IV, Breslow's depth 3.1 mm. WLE and SNB with complete right groin LN dissection 3/2001. (Two lymph nodes were positive). My primary was ulcerated. So at age 46 I was stage 3b. I lasted through only 8 or 9 doses of IV interferon. And that's it. No other treatment. No problems, no symptoms, no recurrence.  Almost 10 years have passed. I think there is always a little uncertainty or I probably wouldn't be here reading this board. So yes, there is a strong possibility it will never come back. Every day open your arms wide, tilt your face up to the sky and breathe in life's goodness.

Cynthia C

 

Anonymous - (11/11/2010 - 1:29am)

Hi Kateboston,

My husband was diagnosed in may '09 with stage IIIa melanoma. Micromets in primary node, clear nodes when they did the dissection. Over a year now and still NED!!! Stay positive. Don't look back unless you're given a reason to!

Jim M. - (11/11/2010 - 7:10am)

I'm stage 3C dx'ed in 11/07, had an LND to the right axilla, 6 weeks of radiation and a trial with Ipilimumab + peptide vaccines. My immune response was at least 5 times over baseline. I have been NED just over 3 years. I didn't know if I'd get to see our daughter graduate from high school. I did and now she's a junior in college! Each day is a gift from God!!

God Bless,

 Jim M.

 

Alicia15 - (11/11/2010 - 12:38pm)

I am a long term survivor. I don't post often anymore because the new board format is cumbersome, need to login, etc.

I was diagnosed stage 2b when I was your age - 20 years ago. I am still here alive and well, living a normal life, working, etc.

I became stage III in 1993. Then stage IV in 2003. I have had mets lo my lung, spine, brain and small bowels. I have been stable/NED for 5 years.

There is hope, if I survived all these years you can as well! Find the best doctors and do your research on treatment options.

Best of luck,

Alicia

     

Alicia15 - (11/11/2010 - 12:38pm)

I am a long term survivor. I don't post often anymore because the new board format is cumbersome, need to login, etc.

I was diagnosed stage 2b when I was your age - 20 years ago. I am still here alive and well, living a normal life, working, etc.

I became stage III in 1993. Then stage IV in 2003. I have had mets lo my lung, spine, brain and small bowels. I have been stable/NED for 5 years.

There is hope, if I survived all these years you can as well! Find the best doctors and do your research on treatment options.

Best of luck,

Alicia

     

Suzan AB - (11/14/2010 - 11:56am)

Please share your treatments with us.  Inquiring minds would like to know.  Thanks,

Suzan AB

Stage IV

Possible lung mets will know on Monday...Thanks again

Presently...One Day At A Time.

Bill G - (11/13/2010 - 4:13pm)

I wound up Stage IIC -- worse prognosis than Stage IIIA and B.  Still NED and kicking after more than 13 years.

washoegal - (11/13/2010 - 10:45pm)

I was waiting to reply until I got my most recent PET/CT results.  I am also 3a, Diag in Jan 2010 and just got clear scans!  I had 2 lymph nodes with microscopic amounts of cancer.  Had complete lymph node dissection but no further treatment. 

So far so good!  I am now just working to stay healthy and have fun!

 

Mary

Stage 3

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

dian in spokane - (11/14/2010 - 1:33pm)

I guess I don't really fit into your category, since for me, melanoma DID come back. More than once.

I had 3 primaries in 1983, when I was your age, 30. I was free of recurrences for 30 yrs, but advanced to stage 3B in 2003. I did interferon, then went another 5 yrs before advancing to stage 4 two years ago. I have been NED now for 18 months.

Dian in Spokane

shadowace - (3/29/2013 - 9:41am)

thanks to your post here and all of those that have followed with their story

thanks to all of you,

for me i am at 1 yr, been NED since surgery, still on chemo yervoy-ipilimumab

getting 8 doses of that, it is good to see that there are survivors that are still around 10 or more years

i am here to learn what is there after treatment