Friday, November 5, 2010

Inspirational melanoma survivors

A friend of mine, whose husband has Stage III melanoma put this list together of melanoma "survivors" and melanoma "warriors" recently. I think it's good to read these inspirational stories of survival, because the stories of the lives of those that melanoma took are very abundant (which are hard to read when you're in the thick of the trenches). Thank you Emily for putting this together-you inspire me! I might be a melanoma warrior right now, but soon I will join the ranks of survivor!!!


SURVIVORS OF STAGE IV MELANOMA

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

http://www.cpmc.org/about/e-health/2008/q2-kariworthfiveyearcelebration.html - Stage IV survivor Kari Worth also did biochemo in San Francisco

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)

I also personally know two other survivors of Stage IV melanoma. Both of them did the same exact treatment, biochemo, as I with the same doctor in SF. One is named Tina Rosenthal who developed lung mets 5 1/2 years after being Stage III and "cancer free". She is now 4 years out of treatment and N.E.D (no evidence of disease) still. She has become a great friend, has visited me in the hospital, and is such an example of doing it "all" to keep herself healthy. And all with an optimistic attitude. The other friend that I know that is a survivor is Sue Lescure, also from the Bay area. She is 4+ years out of treatment and remains N.E.D. as well, even though she has had multiple surgeries to her eye (she has ocular melanoma). She is also a great inspiration to me and really helped prepare me before treatment.


BLOGS OF MELANOMA WARRIORS

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” t-shirts and fun events to support the cause.

http://www.caringbridge.org/visit/mindylanoux
Mindy Lanoux was featured in a NY Times Article on the MD Anderson Cancer center. She is Stage IV and has done many chemos and clinical trials. She is a teacher with young children.

http://iloveyoumorethanmost.blogspot.com/
Mother of a 6 year old with Melanoma – and such a great writer.

http://www.smelanoma.com/ – A father in his 30s with Stage IV melanoma. Mike Brockey chose to do the Gerson cancer therapy (juicing/enemas) when he was given a year to live – that was one year ago. Instead of chemo, he chose carrot juice. He is now healthier than he was a year ago (even if he has turned slightly orange). I think he is on to something. Most of the time (80%) chemos and other toxic drugs just make melanoma spread faster. Keeping your body in a stress-free state seems to work well with melanoma – and that’s what I have heard from Stage IV survivors.

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://thewilemansjourney.blogspot.com/ (Please support Andy - a police officer and father of young children fighting Stage IV melanoma)

6 comments:

Julie said...

Christina, you are such an inspiration!!! I've always admired you but you truly are an amazing person and I love your positive attitude. I am SOOOOO happy to hear the treatments are working and you are a survivor!!!!!!!!!! I can't imagine what you have been through but I am so glad you can blog and inspire other people. Love ya girl!!!

jimmy_B said...

Christina,
Thank you for those Kind words. In 2007 I made a promise to a mother in Boston, who lost her daughter to the terible Monster, Melanoma. I Promised I would not stop reseaching until a cure is found or developed. As a stage IV survivor, I was able to jump start my own immune system to recognize the cancer. It was done with combinatorial therapy. This is where you do a combination odf therapies systematically.
The drug that has played a pivital role is call Ipilimumab (Ipi for short). This drug takes the brakes off the immune system. There are also BRAF inhibitors that attack the tumor cells but the tumors must have the BRAF mutation. It works great until the cancer finds another pathway around the (BRAF pathway). IT is short lived for about 6 to 10 months. But this therapy may help to knock down the tumor burden so is to allow another therapy to work. Please stop by and or drop me a line if you have questions on therapies. I continue to learn new things that may help a patient.

Jimmy B

Amy said...

Thank you for posting this list. My husband was diagnosed with Ocular Melanoma two years ago, and I know full well how hard it is to find "survivor" stories out there! May God bless you & your family as you fight this beast!

Anonymous said...

I need advice, I need help, my granny was diagnosed with a melonoma 2 years ago. It recently reappeared and she has been diagnosed with Stage 3 cancer? Is there any treatment that might save her, doesnt matter how much it cost, she is still so young and full of life. I am losing my mind, my heart is breaking... I don't know how to deal with this..

Christina said...

Anonymous,

I know the feelings you (and your granny) are experiencing--the hopelessness, the panic and anxiety, the fear of the unknown. Know that you are not alone. Please don't lose hope though--there are options for late-stage Melanoma (Stage 3 and 4).

You need to do some research though, find a good oncologist that specializes in melanoma, and lay out your treatment options. If I were you, I would go onto the Melanoma Research Foundation's website. There is a forum where other patients communicate and that might a good way to find out what other Stage 3 patients are doing. They also have resources and I think, a nurse on call, where they can help direct you to the right doctors.

Most importantly, don't pay attention to statistics. There are LOTS of people beating the odds and living well past their given "prognosis". I was technically given a year to live and I've been in remission for 2 1/2 years! I know other Stage 4 and 3 patients that are around 5, 7, 10 years later! There is so much hope and lots of exciting research and advancments in medicine being made now. You just need to become edcuated about those options and find a good doctor!

Anonymous said...

My son had his first treatment of Ipi last week. He has brain mets and several throughout his body. I'm looking through all the information and wondering if anyone has research on any of these cancer diet changes and if there is any evidence that it helps prevent further spreading of the melanoma. I'm looking for anything that could possibly help his immune system. I have him drinking green shakes, fruit shakes and a lot of vitamins and herbs.