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.
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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
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
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
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
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
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
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
Hi Em & Michael,
Love what you’re doing here as there are quite a few Stage IV melanoma stories that encourage folks to persevere in their fight – you never know, right?!. Super happy for you guys! I remember during my Stage IV mel. fight in 2002-2003 the only story I could find was Kenneth Shapiro’s who had survived at that time for 20 some years – still, that was a huge hope for me! They gave me days to live in May 2003 and on August 13, 2003 they declared me NED – cancer free. Just had a PET scan in August and I’m still clean – 11 years! I attribute my remission to God and medicine. We’ve started a ministry to support cancer patients – Stronghold Ministry – http://www.mystronghold.org. Check us out and add me to the list if you’d like. Please feel free to contact us & we have a blog here: http://www.mystronghold.org/blog/
take care,
Joe Fornear
September 30, 2014 at 6:01 pm
I had a Stage IV diagnosis 12 months ago tomorrow. Last September 2014 the doctors were ready to assign me to palliative care. I continued on Nivolumab and a scan on 11 December showed 80% regression. My latest scan early March 2015 shows no tumours. stay strong and positive because melanoma can be beaten.
March 22, 2015 at 12:13 pm
One week ago I was diagnosed with a breslows 4.5 melanoma on my arm. At the end of this week I have an appt w/ a surgeon to discuss my pathology report. I am scared !
What can expect? Any help is appreciated.I’m
not sleeping very well, web stuff is overwhelming me, and have a new grandchild due any day now!
Kathleen
June 2, 2015 at 2:07 am
Hi Kathleen – I am sorry you are dealing with this. Most likely you will discuss the next steps with your surgeon and that will be to see if the original removal of the melanoma had sufficient margins and to discuss additional surgery to get clear margins if they did not – to be honest, you will most likely need surgery to get clear margins and to test your lymph nodes in your armpit area for melanoma to see if it has spread there (stage 3). Remember that surgery is the best thing for melanoma. They will also discuss the pathology to see if the melanoma was ulcerated or not and the rate of mitosis. Those are important to know for risk of recurrence. The web can be very scary – but first step is to see the doc. I have read a lot and women with primary melanomas on their limbs have a better prognosis. My husband is Stage 3 and doing well 5 years out. Please contact me with any questions. Best, Emily
June 2, 2015 at 8:53 pm