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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Carol Taylor's picture
Replies 14
Last reply 5/17/2011 - 3:02am

Everyone, this is an SOS for Eric. Jill just posted on the facebook page she has about what's going on with him. It's not good. I'm not going into detail, but please trust me on this. They both need your support and prayers like never before.  Bombard the throne of heaven.

Lord, in Your mercy, be merciful now! Amen.

Life's short. Eat dessert first. (This blog post contains links to my story).

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CLPrice31's picture
Replies 14
Last reply 5/16/2011 - 9:09pm

Hi all. I went for my latest CT/MRI scans...everything is clear except the new development of a thyroid nodule. My oncologist said he was concerned, that we need to do an ultrasound, but that most thyroid nodules are benign. Should I worry? (Of course I am going to regardless...but....) Has anyone else had an issue? I am still set to begin the ipi trial at Memorial Sloan Kettering on the 20th, so he must not be *that* concerned...right? frown


"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy.

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gabsound's picture
Replies 13
Last reply 5/16/2011 - 8:54pm

Hi, I live in las Vegas and was recently diagnosed with stage 3 melanoma (thick lesion with ulceration, 1 positive node). About 5 years ago I had a basal cell cancer on my upper back and have had quite a few atypical moles removed that were moderate to severe dyplasia. My melanoma started as a pink lesion on my leg inside the knee region. Two different PA's from different Dermatology practices saw it and were not impressed. Finally I kept pestering with "what is this" and the edge got frozen because it was getting crusty like an actinic keratosis. At first it got smaller and peeled, but later started bleeding after I picked at it and it never healed. Biopsy came back melanoma.My PA thought was going to be a squamous Cell so did a shave bx (i;ve read that was not good). About 3 weeks ago I had a wide local incision and sentinel lymph node bx. Unfortunately sentinel node was positive with micrometastasis and woke up from surgery with rest of lymph nodes in the groin removed (I knew this was a possibility). I'm healing up fairly well and have tried going back to work part time this week,

My blood work LDH is normal. I am awaiting results of my PET scan. Prior to pet scan I met with my oncologist, who said treatment for pt's like myself, fall in a "grey area". He said the interferon treatments are falling out of favor and said he was recommending a watch and wait for now. He is also checking with an associate who does more melanoma research (dr. Samlowski) to see if there are amy clincal trials I should be in.

In doing research, I see for stage 3 adjunct therapy MAY be offered. Initially I was relieved thinking I could just get back to my life, but find myself doing more research and wondering if that is the wisest choice. The statistics for this cancer are pretty grim. The oncologist said interferon " is like having the flu for a year"-I don't know that I could handle that. Also, from what I have read it doesn't sound like it improves the overall survival rate, but delays return by about 7 months. So you kinda lose a year up front to get some time later-this sounds like kind of a wash.


I'm wondering if any other stage 3 patients can comment on if they were given the watch and wait choice and what you decided to do and why.

Also please feel free to correct me if my understanding of what I've heard and read so far, appears wrong.

Sorry if I rambled a bit. It is such a relief to find this site and read these posts from people going through exactly what you are!!

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Lisa13's picture
Replies 2
Last reply 5/16/2011 - 6:35pm
Replies by: Lisa13, Carol Taylor


Many impossible things have been accomplished for those who refuse to quit

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MMarieMetcalfe's picture
Replies 5
Last reply 5/16/2011 - 5:51pm

Does anyone know of any doctors in Delaware that specialize in melanoma that they would recommend?

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kjshaner444's picture
Replies 4
Last reply 5/16/2011 - 5:48pm

I have Melanoma. I begin Interferon on Monday. Thank you.

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shellebrownies's picture
Replies 6
Last reply 5/16/2011 - 5:18pm

Anyone on this trial? Just wondering about response rates and levels of side effects...


Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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kim2712's picture
Replies 3
Last reply 5/16/2011 - 4:48pm

My son is very, very ill as you know from my post titled "my son's journey thus far". He continues to decline. His lungs are full of fluid and tumors, as well as many other area's of his body. He also has horrible lymphatic swelling from the diaphragm down to his feet. The doctor will not give him anymore chemo as it did nothing for him. He did agree to give him a dose of ipi a week ago yesterday. He has gained over 60 pounds of fluid weight in the last few weeks. He and his wife want to try Gersen therapy but can't find anyone here to administer it. I don't know that he has enough time for that to work anyways. Is there anything else out there that may help him?

Thank you,


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shellebrownies's picture
Replies 5
Last reply 5/16/2011 - 4:46pm
Replies by: chenrydh, Anonymous, RMcLegal, Carol Taylor, Terra

My husband will be starting a trial tomorrow and he will either be taking just ipi or ipi and GM-CSF. Can someone let me know what kind of side effects are common to experience? 

Also, I've been told it can take some time to work...I also read about the tumor sites becoming painful and warm. Does that happen regardless? Or does that only happen in the patients that the medicine is helping?

Sorry to be bombarding the board as of late, but I'd like to have as much information as possible going into the appointment tomorrow. Thank you!


Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Here is a link for a newspaper article written about my son on Friday, May 13th. It will only be on the site until Monday afternoon, May 16th, so check it out soon if you want to read it.

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Rendergirl's picture
Replies 28
Last reply 5/16/2011 - 2:26pm

Hi I'm Becca, stage III. I don't know if I'm 3a, b or c... can't seem to get an answer from my doc. Anyways, had Melanoma on my upper chest, had a wide excision done, Lymph node biopsy in right armpit was positive for cancer. Had all lymph nodes removed 1 1/2 weeks ago in that arm, they all came up negative, so only the initial node was cancerous.

My oncologist has been waiting for surgical to get done with their part before he suggested further treatment, and now they are done. I'm scheduled to see him the day after tomorrow and I'm wondering what he's going to suggest. I know he's not a big fan of Interferon. As he said, it makes you feel like you have a bad case of the flu for a whole year. That doesn't sound like fun. My mom says she's going to push for observation, but I want to be proactive and make sure it doesn't come back. I don't want to just "wait and see". So what do you think my oncologist will suggest? And if he does suggest only observation, what does that mean? What kind of scans and/or tests and how often?

Thanks for any feedback...

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Terra's picture
Replies 2
Last reply 5/16/2011 - 12:28pm
Replies by: Terra, emilypen


He does have mets in his liver, bone (ribs), one in kidney, and muscle, and I a few other places.  He has ct and mri coming up and was just taken off of P13K and Mek trial because of cv levels in blood (muscle breakdown). He needs a 28 day wash out period for ipi, it has been 10 days already, so nervous about waiting the next 18 days and waht can happen.  Next plan is TIL in Washington at NCI. Mentally and emotionally it is taking its toll. 


I know I don't want to hear these answers but Derek has some unexplained swelling in his wirst and forearm.  He has nerve issues in this arm and it is also where he has had numerous surgeries.   He also has been incredibly itchy all over - anybody have this coming off a treatment?


Thank-you so much,


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rainsberger.tony's picture
Replies 6
Last reply 5/16/2011 - 10:40am

Hi All,

Just wanted to share a little joy/hope:


This brief history of my wife's journey with melanoma. 

6/06:  Initial diagnosis, stage IIIC with lymph involvement in her left armpit. Partial basin resection, several large moles removed (primary never identified), clean PET scan

7/06-8/07:  Treatment: adjuvuct therapy with leukine 

8/07:  Disease progression, stage IV

8/07-11/07:  Treatment: IL-2 with partial response but significant growth as well

12/07 – 7/08:  Treatment: Off trial chemo cocktail – avastin, taxol, carboplatin

8/08-9/10:  Treatment: Clinical trial compassionate use Ipi(now called Yervoy) along with several surgeries to remove localized growth that didn’t kick her off the trial

9/10:  Treatment:  Dacarbazine, cisplatin, vinblastine

12/10-Present:  NED

I feel it is important to note that my wife is a firm believer in the power of intention and the importance of visualizing the outcome you wish to create.  While we have had our share of tears and fears, she works at creating a positive attitude; it pervades her daily life.  She spends hours visualizing/feeling: “what it is like to live in a healthy, cancer-free body”, makes gratitude lists, listens to positive affirmations, and works with a counselors and support groups.  Given any opportunity she will celebrating the little victories and does a great job of looking beyond the set backs to the next victory, always hopeful of the next treatment.  She decided long ago that a scan simply indicated when a treatment change was necessary and told her oncologist to skip the minutia of numbers associated with every little lesion. 

There is no research suggesting that this particular treatment path would help a patient reach NED.  Maybe it is her particular disease, maybe her treatment sequence, maybe her ever-present faith in good, maybe a combination.  Personally, I believe that miracles happen every day, faith and hope are important, and while medicine/science are wonderful tools, they certainly don’t have all of the answers.

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Rocco's picture
Replies 1
Last reply 5/16/2011 - 8:19am
Replies by: Laurie from maine

JUST FYI in case you're interested in attending...SPRING SYMPOSIUM 2011

Integrative Therapies and Cancer Care: 

Learning About the Potential Impact On Your Wellness and Wellbeing

An opportunity for education, discussion & connection for patients,
survivors, families & friends

Tuesday, May 17, 6:30 – 9:00 pm

Dana Farber Cancer Institute
Jimmy Fund Auditorium
35 Binney Street, Boston, MA


David S. Rosenthal, MD, Medical Director, Leonard P. Zakim Center for
Integrative Therapies, Dana-Farber Cancer Institute
Stacy Kennedy, MPH, RD, CSO, LDN, Senior Clinical Nutritionist,
Dana Farber Cancer Institute
Deborah Steele, MA, ATR, Manager of Support Services Programming, Norris Cotton
Cancer Center, Dartmouth Hitchcock Medical Center
Amy Grose, MSW, LICSW, Clinical Oncology Social Worker, Department of Psychosocial
Oncology and Palliative Care, Dana-Farber Cancer Institute

Melanoma Foundation of New England at (978) 371-5613 or

Free Admission, Refreshments, Free Parking (in the Smith Building at 1 Jimmy Fund Way)  

Luke 1:37

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carol b's picture
Replies 11
Last reply 5/16/2011 - 3:24am

Had my pet scan last wed. I got my results this week... Four of my tumors are completely gone. No sign that they were ever there.. Prayers are working, Thanks for all of them.. The black monster under my arm grew about 3 more cm. But thats ok.. I got back to Vandy next week on the 18th to do another round of IL2. Pray that i can take at least 10 to 12 bags. It did shrink it over half its size last time but me and the doc got way to confident and set the IL2 appt to far apart and it allowed mel to grow back and increase in size. I will get 7 days to recoup after the first round and go back on June 1 to do another round. The treatments are horrible, those of you that have taken it know. I need as much of this med in my body as i can handle and i know i cant do it without prayers. But when it shrinks it this time my surgeon is gonna take it out and hit me with another round of IL2 and make me NED.. I will become one of the miracles.. In Dec i was told i had 9 months to live, 5 of those r gone now and i know im gonna beat the death sentence i was given, well mel ain't gonna get me anyway,, something else could happen but it wont be mel..I believe with all my heart that the prayers i have received have helped me get this far in my melanoma walk. I read so many post on here and feel ashamed to report anything good when so many here are suffering. I've learned how to pray and to believe from you all. I have learned too be strong and brave. I have learned to love people i don't even know. I thank you all from the depths of my soul. I will be sending up prayers for you all everyday. You all are special to me even if i don't post it all the time. I just get to emotional and cant, but you are always in my thoughts and in my prayers..May God Bless You All With His Grace..

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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