A blog about us…and journey with Melanoma

Stories of Survival

I wanted to share stories of survival that we have found to be inspirational.  If you have melanoma, you know the survival stats and they range from being excellent to devastating …as noted on the other page – “Stories of Devastation“.  I personally know a number of people with inspirational Stage 3/4 survival stories.  One of them is my Italian neighbor (he doesn’t have a blog) who was diagnosed with stage 3 melanoma 5 years ago after presenting with swollen lymph nodes in his neck.  They never found the primary mole/tumor. He hasn’t done a single chemo drug to treat the melanoma… but he swears by eating tons of garlic!  He is alive and well and as healthy as can be.

At what point do you become a survivor? The minute you are diagnosed.

Many people continue to thrive with melanoma and here are some of their stories:

SURVIVORS OF STAGE IV MELANOMA

The young father that founded WAM (War Against Melanoma) had brain and lung tumors at the age of 31 and underwent high dose Interleukin 2 with radiation.  After surgery, he has been NED since 2006.

http://collabrx.com/ourstory.php – Marty Tenenbaum is a 10+ year survivor of Stage IV melanoma.  He started a company that offers “personalized oncology” and genetic testing.  It is a very expensive right now, but I hope some day this will be available for every patient with cancer – this is the future of oncology.

http://melanomamissionary.blogspot.com/ Jimmy B is a long time Stage IV survivor – and such a great resource for research

http://cancerguide.org/kshapiro_story.html – Stage IV survivor – his last update to the page was in 2008

http://www.cpmc.org/services/cancer/erick_davis_il2.html –  Stage IV Biochemo patient from San Francisco.   We met Erick at the MRF gala in San Francisco in May 2011.  He is such a nice guy and credits Dr David Minor with saving his life.

http://www.cpmc.org/about/e-health/2008/q2-kariworthfiveyearcelebration.html - Stage IV survivor Kari Worth also did biochemo in San Francisco with Dr Minor.  She is such a lovely lady – we met her at the MRF Wings of Hope Gala in May 2011.

http://carverblog.blogspot.com/search/label/melanoma%20and%20more - You can chat with Carver on the Melanoma Research Foundation forum (where there are many more survivors)

BLOGS OF MELANOMA WARRIORS

http://strongenough-christina.blogspot.com/ Christina McEvoy.  We met Christina at a Melanoma conference in San Francisco when she was Stage IIIb in May 2010.  By July, she had moved to Stage IV with lung mets.  Devastating news. She is a young, fit, mother of 2 adorable little boys. She had a mole removed 2 years ago and 2 years later she is Stage IV.   That’s how melanoma rolls.  She is super resourceful and responding very well to biochemo right now – one of the toughest chemo regimes out there.  She uses acupuncture, hypnotherapy, exercise, diet, and faith to keep her stress levels down.   Update: Christina just started Yervoy and is doing well.  I know she will be a “complete responder”.

http://melanomagirl.com/ – Andrea is a stage IIIa survivor who has created a great melanoma brand “Melanoma Girl”.  Check out her cool “Proud to be Pale” tshirts and fun events to support the cause.  She is working on her non-profit status and I hope to do some co-sponsored events with her. Update May 2011: We were so shocked that Andrea was just diagnosed with Stage 4 Ovarian Cancer after a recent scan.  She has started treatment and we hope that it knock out both of her cancers.  Through all of this she continues to be suck a charming, lovely, funny beautiful woman.

http://iloveyoumorethanmost.blogspot.com/
  – NEW: http://littlestwarriorspot.com/ Danielle is the mother of 6 year old with Melanoma – and such a great writer.  She has actually created a blog for young children with melanoma – called the Littlest Warrior Spot.

http://kerpie.blogspot.com/ (Kerri is a Stage IIIa melanoma survivor and just celebrated clear scans)

http://missmelanoma.blogspot.com/ (Stage III – young lady with melanoma)

http://hotelmelanoma.blogspot.com/ Rich is a Stage 3C melanoma survivor since 2003.  He comes up with some great Melanoma songs..like the Hotel Melanoma (sung to the tune of the Eagles’ Hotel California)

http://williamfightingcancer.blogspot.com/ William is Mike’s age (44) and was diagnosed with Stage 4 in 2011  after being diagnosed Stage 2 – 10 years prior.  He is doing an amazing procedure called TIL/Adoptive Cell Therapy at MD Anderson. TIL (tumor infiltrating lymphocytes) is a treatment where your immune system is first destroyed with chemo (in the hospital) and then your own harvested TIL cells are put back into you to create a new and improved immune system… one that knows it should attack melanoma.  It has a response rate in the 50% range but very few are selected to do it (William was only the 46th person to have it done at MD Anderson).

Melanoma Mom – A young mother with Stage IV melanoma – she is starting TIL treatment (like William above).  She was diagnosed shortly after her baby was born.  I cant imagine being a new mother and having a cancer diagnosis – my heart goes out to her.

Confessions of a Mommy Battling Melanoma 

Brian’s Fight - http://www.howsbrian.com/Brian_s_Updates.html

THERE ARE MANY MORE…

If you have been diagnosed, visit the melanoma online forums below.   Not only will they help you with emotional support and questions – all of the people there are in the same boat and they are so helpful and wonderful!  And I think they know more about melanoma than some doctors.

Melanoma International Foundation Boards

Melanoma Research Foundation Boards

11 responses

  1. Pingback: Survivors. « Em and Michael's Blog

  2. Christina

    Em,

    This is so great!!!! I might have to copy some of your stories and share them on my blog, if that’s ok! You are awesome and also an inspiration!

    November 5, 2010 at 12:15 am

    • Christina – I am working on more survival stories – will send them to you as i find them! I constantly tell others about you and it gives them hope. XOXO

      November 5, 2010 at 2:17 am

  3. Your blog is so inspiring and helpful! Makes me want to fight!! I am a Melanoma survivor myself. I was diagnosed with stage IIIc in Oct 2011. Two surgeries later I have clear scans so far. I am participating in a vaccine trial at Moffitt Cancer Center in Tampa, FL. Hopeful for long term survival and one day a cure. I am grateful for others like you who are sharing stories and encouraging us all. I can’t wait to check out more of the helpful info on this blog!
    May God bless you and your family!! Love, Jessica

    April 6, 2012 at 3:18 pm

    • Thanks for your note Jessica! Which vaccine trial are you doing? We try and stay up on the trials and I am curious. So happy to hear you have clear scans! Take care, Emily

      April 6, 2012 at 6:17 pm

  4. I am participating in a Phase I study of Oncovir poly IC:LC vaccine with the infusion of another drug at the same time. The science behind it is pretty cool. We are hopeful it works, grateful for each God-given day of life. Thank you for your beautiful blog. Blessing to you,
    Jessica

    April 8, 2012 at 2:25 am

  5. jc in TN

    My mom was diagnosed with late 3/early 4 stage melanoma in Apr 2011. It’s now over 1 year later and she’s doing quite well…a real fighter! Rock on Mom!

    May 13, 2012 at 10:00 am

    • Wonderful – please wish her a happy mothers day! Thanks for sharing! Emily

      May 14, 2012 at 8:40 pm

    • Vickie Bruce

      where was your mother’s melanoma? I was currently diagnosed with melanoma on my lower leg. Had surgery & skin graft. It had not spread to lymph nodes or any organs. I see an ocologist April 26, 2013.

      April 25, 2013 at 2:01 am

  6. Angie

    In May of 2012, my husband was diagnosed with Melonoma, Stage 4. He had a spot that was clearish pink on his upper back right where his t-shirt falls on his neck. After about a year of encouragement to get this mole checked out, he finally did. One week later, we met with the surgeon, and had the mole removed. He had a large diameter around the mole removed and several lymph nodes removed to be tested. He had MRIs and Pet Scans to see if the cancer had spread to his organs. Praise God, that all tests came back NORMAL! No Cancer anywhere else in his body. He recently had his full body scan and blood work done at West Clinic in Nov. of 2013, and those tests too were normal! So…just want to say that we are very mindful of our health and sun habits, but are also THANKFUL for every day.

    December 9, 2013 at 12:10 am

  7. Mare Ryan

    Hi,
    My 23 year old son Is now a 6 month NED survivor of stage IV Melanoma (brain and lung mets) after undergoing TIL therapy at the NIH with Dr Rosenberg.
    Truly this new therapy has saved his life and offered hope to us. We continue to pray and thank God daily for this miracle. Hopefully many more affected by melanoma will seek this treatment.
    Thankful Mom

    January 4, 2014 at 9:12 pm

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 49 other followers