MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Charlie S's picture
Replies 6
Last reply 12/22/2011 - 12:47am

As his Thanksgiving present Jerry was moved from the hospital to physical rehab but he crashed and burned last week and was sent back to the hospital to stabalize once again. 

Now for his Christmas present, he has been cleared to go back to rehab after working out some insurance glitches.

In speaking with him today, he was quite lucid and very Jerry and not operating under the fog of better living through chemistry.  What a time he has had but he continues to slug away.

Once his move is complete, I'll get an physical address for you that would be so inclined to send him best wishes.  He's not able to respond right now to e-mails; but heck, load up his in-box will give him something to do !

Please keep Jerry in your good thoughts.


Charlie S

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Gene_S's picture
Replies 6
Last reply 12/21/2011 - 11:13pm
Replies by: Charlie S, Anonymous, Gene_S

Melanoma is almost completely curable if caught in time, yet 30% of malignant lesions go undetected due to human error. With a 98% accuracy rate, you would think a breakthrough, non-invasive diagnostic device called MelaFind® would gain swift FDA approval. In this exposé, we reveal why this technology languished in limbo for years–and how stifling agency bias and negligence are sending similar innovations overseas.

Click Here
Read the full story


I found that downloading pages 84 to 91 using the .PDF icon in the lower right part of the page made it a lot easier to read this article!

Best Wishes,


Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Neeq79's picture
Replies 4
Last reply 12/21/2011 - 9:47pm
Replies by: CLPrice31, Camp Host, Neeq79

Hello Everyone,

I hope you don't mind me posting here.  I have not been diagnosed with Melanoma, instead I am waiting to receive initial results. 

I have dark blond hair, blue eyes, and many freckles.  I was unfortunately one of those teens and early 20 somethings who thought looking better meant having a tan.  I never went to a tanning bed but spent many days out in the sun with little to no sunscreen.  I am now 32 and definitely have put those days behind me, what was I thinking?  I knew you could get skin cancer from sun exposure so I have always been good at checking my face, arms, and torso.  I knew I had freckles and moles on my back, but, my back was rarely sunburned (I always hated a burnt back so it was not often exposed). 

I had a physical last month and asked about my back, my doctor sent me to a dermatologist.  I went  and unfortunately, I had three irregular moles that were removed by punch biopsy last Thursday.  I asked her if they came back positive what it would be, and she stated Melanoma.  As I sit her with stitches and waiting for results, I wanted to do research on what exactly Melanoma is.

I am so glad I found this website and I have thoroughly enjoyed reading your stories. Thank you so much for posting something so personal.  I feel like my eyes have finally been opened to what I took, in a sense, casually.  I am praying nothing comes back positive for Melanoma, however, I know I will need yearly checkups which I will always be on top of. I also want to get the word out to everyone that Melanoma is something you may not realize you have until it is too late.  It goes way beyond sun exposure, as I'm an example, the parts with very little sun exposure are the places with the irregular moles I need to monitor.  I wish our culture was one of health, true health, not the thinking that a tan appearance equals health.  I wish Melanoma awareness and education was as easy to find as a tanning salon is. 

I am very nervous about my results, but no matter what they are, my attitude and outlook have definitely changed.  We're blessed with one body and one life, it's up to us to take care of it the best we can and to not take it for granted.  

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Low CoQ10 levels and Melanoma Metastasis.

Best Wishes,
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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j.m.l.'s picture
Replies 5
Last reply 12/21/2011 - 10:12am

I had 4 mel tumors removed. That was the easy part. Latest is tumor laying on arm artery. Dr. says inoperable. no wide margin, etc.

Tried IPI-side effects but no shrinkage, just growth. On Decarbazine but I know this drug is a very low responder. Will try other chemos but this takes months of try and error.DOES  ANYONE KNOW FROM A LAYMAN'S TERMS WHAT THE DANGER ARE INVOLVED WITH SURGERY TO REMOVE THIS TUMOR LAYING ON AN ARTERY. OF COURSE I WILL CONFIRM W. DRS. BUT I WOULD LIKE TO KNOW FROM ANY IDEAS OUR THERE.


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LaneyMcg's picture
Replies 7
Last reply 12/21/2011 - 1:29am

Hi just a little history, I had my 1st primary just over 5years ago . 2.7mm off upper back snb clear. since then I have had 5moles removed 3 ok, 2 mel in situ. I have recently found a lump on the right side of my head just behind my ear it itches and has bled once. I went to my primary doctor who confirmed it was a mole and has referred me back to my cancer hospital. I know I'm probably running ahead with this but I'm scared because it is a New mole that has appeared out of nowhere like my original primary, unlike the others that I have had removed which were existing. I'm waiting to see the specialist at the moment. I am sorry to be so trivial when so many of you are battling so hard, my thoughts and prayers are with you all.
Love across the pond,
Laney x

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gabsound's picture
Replies 5
Last reply 12/20/2011 - 9:28pm


I finished up biochemo treatments the end of october. Unfortunately the lump at the bottom of my lymph node scar started to rapidly grow. PET/CT showed marked uptake in that region-rest of scan was clear as was brain MRI. Core biopsy of region conformed melanoma. My surgeon based on the biopsy results did agressive surgery, as if I had a sarcoma, and took large margins around this area. LARGE piece of tissue removed 20 x 10 x 5 cm on 11/25/11. Even took out some muscle.  Posterior margin is questionable as to whether it is clear. My oncologist is treating me like I am a stage 4 patient since metastatic disease has ocurred twice in the leg. Plan is to start Yervoy tomorrow and will meet with radiation oncologist fairly soon.

Im wondering about a connection between estrogen and melanoma. My Oncologist seems to think there isn't one however, my initial lesion changed after I was on hormones for a while and my most recent tumor seemed to change rapidly between biochemo treatment 3 and 4 when I started  using my hormone patch again. Could be coincidental, but I have asked the surgeon to have them test my tumor for estrogen sensitivity.

I'm recovering well from surgery and only took 1 week off from work. Incision seems to be healing well. I think I have some increase in lymphedema in the leg since the last surgery, but I will be getting a stronger pair of compression hose. I'm wondering how much worse my leg would get with radiation treatments.

I feel like this agressive surgery followed by the Yervoy and possible radiation is my best shot at hopefully stopping this. It's been just one thing after the next, this year. I already feel "cured" from the surgery. What a relief to not have a growing tumor in my leg. I really feel great right now and feel very positive. I'm hoping the Yervoy will be a piece of cake after doing high dose interferon and 4 inpatient biochemo treatments!

Happy holidays

Julie from Las Vegas

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I ave posted a new topic andit has come up on a different board I think it was under view all topics? Stats and can people still see it x

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Carver's picture
Replies 4
Last reply 12/20/2011 - 5:39pm
Replies by: LaneyMcg, Carver, Kimmer

I noticed someone below asked how to start a new topic so I thought I'd test that out. After I logged in I looked on the right, I saw I had the option of starting a new topic with my name or anonymously. For the record I'm not 3 years old but for now I'm using a VERY old shot of me as a young girl for my profile. I tried changing it to a cropped one that didn't cut my head off but once I saved my profile shot it didn't seem to let me change it so for now you might want to be careful what you upload.

"A closed mind is a wonderful thing to lose"

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carol b's picture
Replies 5
Last reply 12/20/2011 - 5:29pm

Merry Christmas everyone. I pray all of you have a wonderful Christmas. I pray that you all have an abundance of PEACE, LOVE and JOY in your hearts this Christmas Season. I pray for Christmas Miracles for us all. heart

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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Judy in CA's picture
Replies 5
Last reply 12/20/2011 - 3:51pm

I have been in contact with Dr. O'Day.  He confirmed that he has parted ways with The Angeles Clinic.  He will be practicing in the Los Angeles area and he hopes to be seeing patients in early 2012!  If you would like to contact him, his email is

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glewis923's picture
Replies 9
Last reply 12/20/2011 - 11:19am
Replies by: martimus04, MariaH, Cate, Anonymous, WendyPam, lovingwifedeb, Fen, sharmon

As I look back over the year, I realize how fortunate I have been.  I also think of the many friends on this board who are no longer with us.  Let's take a moment to reflect on their lives.  I can think of a few right off hand, but please add to this remembrance list if you want.

Shelly from Switz., Amy Busby, Sharon from Reno, Eriic, Nicole NicOZ, Sharyn, and many others I cannot think of at moment.

They shall all be missed by many.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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Sherb's picture
Replies 6
Last reply 12/20/2011 - 11:15am

Question for all of you...... My mom has stage 4 with tumors in her liver (5) and 1 (4cm) tumor in her messentary,and throughout lymph nodes . We are waiting for the results of BRAF. She has been having stomach pain each day, multiple times a day and then vomits every other day and then feels a bit better. Anyone have a guess as to what could cause this? This has been going on for 2 weeks. It is frustrating waiting for results. She has failed 10mg Ipi. Just waiting for results from BRAF so we can move forward and figure next step. Sorry for the rambling.

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BarbieGirl's picture
Replies 18
Last reply 12/19/2011 - 11:03pm

I don't come here much anymore, but for about 9 years, I was here every day.   I'm (still) raising 3 grandgirlies, and my mom has been here a while, too!  

My original surgery was in Oct--diagnosed on my 39th birthday.  The surgery I had 11 years ago still showed melanoma, so my NED date is today!  I am so blessed that I found this place, which was then called Melanoma Patients Information Page.   The information and support from here is incredible, and I'm blessed to have been able to meet many people, in real life and online, from this bulletin board!  Sadly, many are now angels.  But many more, from 11 years ago and beyond, to today, are not only still alive, but thriving!!  (Hey old-timers, give a shout-out!!) As NIcky said below (and is also celebrating 11 yrs. NED today), there is ALWAYS HOPE!!

I love you all and wish you and yours the most wonderful Christmas of all!  And Happy New Year!!!!! 



Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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kjkaralekas's picture
Replies 12
Last reply 12/19/2011 - 10:56pm


I was diagnosed with Stage IIIB melanoma (Sept 2011) when a freckle I had removed from my nose (Jan, 2011--melanoma) had spread to a lymph node under my chin (the sential node biopsy didn't work). My PET scan came back negative. I had the lymph node with the tumor removed along with 30 other lymph nodes on one side of my neck (Oct 14). The tumor was encapsillated and no other melanoma was found in any of the other lymph nodes. I was asked to be a part of the clinical trial (ippy/interferon). With only a 7% chance of it helping and the fact my tumor was encapsillated (no breakage around it), I am hoping this could be the end of it. My local oncologist along with my surgeon understand my not taking part in the trial. I'm going on the 50% positive side that the melanoma could be cured at this point. I will continue seeing my dermotologist & cancer surgeon every three months, my oncologist at Mass General every 6 months and my local oncologist every 4 months. I have been taking a tablespoon of lemon everyday, vitamin D, exercise regularly, eating the super foods and lowering my alcohol intake. I'm hoping this will work. Has anyone out there had Stage III melanoma for years with no spreading? I'm hoping I'm doing the right thing. Any info would be appreciated.


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