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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mrsaxde's picture
Replies 13
Last reply 3/17/2018 - 1:01pm

Hello Everybody,

There hasn't been anything going on with me lately, so I've not been around much. But last week I got the call from NIH that my cells are ready for transfer.

Dr. Shindorf told me that my melanin cells weren't "sticky" (her word) enough for them to do the newer protocol they had been looking at for me. But she said my cells grew well and are reactive, and so they are ready to do the bulk TIL transfer.

I go to NIH to be admitted on Monday evening (3/19). I'll get scans and have a tunneled catheter inserted, and then on Friday 3/23 I'll be starting the chemo preparatory routine. The cell infusion is scheduled for Friday 3/26.

I'll provide updates as things go if and when I feel well enough to do so.


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bjeans's picture
Replies 3
Last reply 3/17/2018 - 11:32am
Replies by: bjeans, Bubbles, Janner

My husband had an SLNB - actually 3 SLN's - and a WLE on 3/9. The SLNs didn't look abnormal, though the surgeon said that didn't mean the melanoma hadn't spread. And it had - to the right axillary and supraclavicle SLNs. 3C. 

It wasn't unexpected, given Breslow (9+) and ulceration, but still was a gut punch with tears (mine). OTOH, we've been impressed and comfortable with the melanoma center team, and assuming no negative surprises from a brain MRI, CT, labs, EKG, etc., he'll be in a 2,000 patient study for nivo/ipi (modified) or nivo, with the first infusion 4/6.

Good timing - the day we met with our oncologist, he had just found out the study was closing four days later. He changed our appointment time so he could answer all of our questions and spent two hours with us. We met with the research coordinator for another couple hours.

And thank you all. Reading Bubbles' *important!* primer and thoughtful guidance, and posts by so many of you has grounded me - and my husband. He's a calm one-step-at-a-time guy; I'm not. But thanks to you and the people at the center, much of the terrible first days' anxiety and terror has dissipated. Information and a plan helps.

This is bad stuff but we're lucky: for the study, the melanoma center being <30 minutes away, for a nearbyoffice my husband can work in on infusion days (if he feels well) instead of driving into the city, for options if he can't complete the study. Plus a $50.00 per visit debit card from the drug company for date night. It could be worse. 


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Anonymous's picture
Replies 4
Last reply 3/17/2018 - 11:13am
Replies by: kst, Bubbles, valuad

Ten days following my first treatment with IPI and NIVO, i developed colitis that set me back nearly two weeks.  Did anyone else have a reaction like this so early on?  How did it effect your treatment going forward?  My Oncologist feels I will not need any treatment since he believes my immune system is elevated and should be attacking my tumor(s).


Any thoughts on this?  Thanks,.

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samiam's picture
Replies 4
Last reply 3/17/2018 - 9:15am
Replies by: samiam, Janner, Anonymous

Two weeks ago, I went to my dermatologist for an abnormal mole on my mid-back. I'm a 34 year-old male. The derm did a punch biopsy and the results have come back positive for "malignant melanoma  approximately 0.2 mm in thickness." The notes say "The melanoma is only focally present in the dermis. The lesion extends to the lateral margins." it also says "Abnormal melanocytes disposed as solitary units and in nests are present within the epidermis and the upper part of the dermis"

Other information from the pathology report:

Mitoses/mm^2: <1

Regression: present

Ulceration, intravascular involvement, satellite metastasis, and neurotropism are all absent. 

T classification: T1a

Now, I thought the T1a classification and 0.2mm thickness was relatively good news, but my dermatologist wasn't willing to comment much and said that we still won't know the stage until I get a wide excision (scheduled two weeks from now). I definitely was not getting "good vibes" from her about my outlook, but I may be looking for the worst.

My questions: Is the stage determination (T1a) from a punch biopsy unreliable? Should I worry that regression is present? Do you see anything else that would cause you to worry about this being more than T1a?

Thanks for your help in advance.


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Replies by: CancerSpouse, Anonymous, doragsda, Bubbles


I have just been told that I have Stage 4 metastatic melanoma of the liver/lung/lymph nodes.

I am currently researching physicians to see and places to go.  I have an appointment with a local oncologist in Ventura County.

I also have appointments with Dr. Hamid in Santa Monica and Dr Kim Margolin at the City of Hope

My wife would like me to consider MD Anderson (possibly starting out at Scripts as they refer to MDA), Also Cancer Centers of America and/or Mayo Clinic.  I am not so inclined to leave the state.  Is the care better??

We would love and appreciate suggestions.  We have no idea of what to expact.


Thank you,



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sarahsmiles1207's picture
Replies 13
Last reply 3/17/2018 - 12:42am

Hello everyone. My wife has just been diagnosed with a very aggressive form of melanoma following the birth of our son three months ago. She had no symptoms at all and went to the ER for acute abdominal pain last week. It was the shock of our lives when advanced melanoma was found on her ovary, liver and brain.

Just two days after the diagnosis, we received news of leptomeningeal metastases. From everything I've read this carries a dismal prognosis (and portends only days to weeks to live).

I am an utter wreck. I need some kind of hope--there has to be some kind of new treatment out there that could cure her or at least prolong her life? Does anyone have success in treating this? I can take her anywhere at all for treatment. Thank you so much.

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as I just found out BRAF 600e . At Stage 3b so an adjuvant therapy. The side effects of these two drugs seem really scary ! Anyone been on them ?

I had a selective neck dissection (unknown primary) 1 lymph node 3.2cm inner partly maliganant outer shell benign other 61 lymph negative. ENT surgeon (oncologists) very pleased said 70% to 80% no reoccurence next 5 years.

Melanoma specialist oncologists not on same page says 40% to 50%  for the next 5 years. The stats on this drug combo seem great but the potential side effects high.

If anyone has had this therapy stage 3 or 4 please let me know how it went.....thanks

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geriakt's picture
Replies 2
Last reply 3/16/2018 - 10:43pm
Replies by: Toby0987, Bubbles

I was diagnosed as 3B April 2015. After tumor removed and nodes removed in Sept 2015 I entered in to a clinical trial of 50 weeks of NIVO (25 treatments of Nivo). During that time  and until November 2017 I have had full body CT scans every 12 weeks. All negative. I finished Nivo treatment Sept 2016 and now I am on CT scans every 6 months.

My question is when can I move to CT scans every year or just stop. The CT scan are very expensive at about $5000 each out of my pocket.  I stopped contributing to the clinical trail because the CT scans at the treatment hospital cost $5000 each out of my pocket since I have a high deductable.  My other option is having CT scans at an Imaging Center for $2500 each.


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Anonymous's picture
Replies 1
Last reply 3/16/2018 - 10:12pm
Replies by: lindanat

Hey LA Warriors:

Anyone else planning to attend the MRF education symposium at City of Hope in LA on April 7th and want to meet up? John and I will be going. Please see link below for info on that and other symposia being offered across the country:




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Bubbles's picture
Replies 12
Last reply 3/16/2018 - 9:13pm

I felt so incredibly lucky today.  I was able to piddle about in my yard with the love of my life, feel the warming breeze on my face and see one more spring.  Melanoma is more than able to take that moment, this day, from any of us.  So as I tried to soak in the spring beauty that life afforded me once again, I thought about things.  And first and foremost it was this...

You folks have been so kind and generous as to give me a shout out once or twice.  It really warmed my heart and gave me strength to continue whatever it is I do.  So I felt the need to return the favor.  Ed has provided so much incredible information and support to me in particular, as well as so many others on this forum.  I know that my posts can be too wordy and "sciency" (I like that new word, my dear Adriana's Rob!!!) for some.  Ed is amazing at finding the perfect web footage to fit the person in need!!!  We all learn different ways and are so fortunate to have the avenue he provides.  Additionally, he is ALWAYS ready to help those in the most dire straits.  He never turns away.  He steps up.  Giving us the best and latest in melanoma data and reports.

For me ~ he's made me laugh out loud more times than I can count.  Yes, Ed...I think you're very smart and funny!!!  Now don't let it go to your head!

We are all different peeps.  In all different stages of melanoma.  In all different stages and places in life.  It takes a village.  And this forum is an amazing one.  So....thanks to all of you for what you've shared with me all these years.  And thanks to my dear Edster, my mousie brother, for being you and for being willing to put yourself on the line for so many!

love, celeste

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Roxanne218's picture
Replies 1
Last reply 3/16/2018 - 7:28pm
Replies by: Janner

Hello fellow mel patients. I am newly diagnosed with a 2.6mm, non-ulcerated, and clear margins on path report after WLE. 2nd report followed from DecisionDX Melanoma saying my turmor is a class 2b, which is  high risk! Anybody else opt for the Decision DX test and receive worse results than your path report as what happened to me? What were your next steps after receiving class 2a or 2b results? PET scan? adjuvant treatments? I'm not sure what to do now. I prefer the Wait and See approach, but it may not be the best for me at this point. Thanks for reading.


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mbrrna's picture
Replies 12
Last reply 3/16/2018 - 12:23pm
Replies by: mbrrna, CindyJ, Bubbles

Hello. My beloved 84-year-old mom was finally diagnosed this past December with acral lentiginous melanoma on the bottom of her foot, after being misdiagnosed for over two years.  We don’t have the pathology report yet (even though she had the WLE with 2cm margins and skin graft surgery at the beginning of Feb) but this is what we do know:

- Minimum tumor thickness 1.9 mm with ulceration present and mitotic rate of 1.  (Visually, the tumor covered the entire bottom heel area of her foot, so it was pretty radical surgery.) 

- CT scan of the abdomen shows a right lower quadrant mesenteric mass measuring 1.8 x 1.3 cm. There are also abnormal enlarged lymph nodes in the right groin and along the right external and common iliac chains with markers in the right groin, 2.3 cm and right common iliac, 1.4 cm.

- PET scan confirmed FDG avid nodes in the right inguinal region, right iliac chain, ileocolic and right retroperitoneum, in keeping with nodal metastases. The doctor says surgery is not an option as there is too much involvement on the right side.

- Chest and head CTs clear.  Blood work normal.

I'm assuming this is kinda good news though, meaning the cancer has not spread to any organs, or am I being overly optimistic based on the type of melanoma, the length of time she's had it, and her age?  Her doctor is recommending Keytruda, but doesn’t want to begin treatments until her foot has healed more.  Should I be concerned about more delays before she gets treatment?  Is melanoma only terminal once it spreads to the organs or is lymph node involvement enough?  Isn't there a risk of it spreading more if we don't get on it asap?

Thank you.  I can't ask the doctor questions in front of mom, as she doesn't want to know, but I'm trying to educate and prepare myself for what's to come.

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Anonymous's picture
Replies 4
Last reply 3/16/2018 - 12:19pm
Replies by: Anonymous, Janner

Hi All,

I am so glad that I found this website. I am 25 year- old female. I am Chinse and arrived US two years ago for graduate study. In China, few people know anything about  Melanoma and that is why once they notice it, it has already been too late.  I was lucky to hear a story about a young Chinese girl's Melanoma story right before I came here and had some knowledge about it. However, when I first noticed a new mole about 2mm on my left temple in May, 2016, I was not worried about it at all. I thought it was totally normal to develop new moles at my age. However, seven month later, the mole doubled in size (almost 4mm) and I went to see a dermatologist. She cut it and it came back as " severe dysplactical mole". I received another surgery to fully remove all atypical cells in Feb. 2017. I don't have any family history of Melanoma, but I do have a really fair skin compared to other Asians,  and also A LOT of sunburn( skin peeling) when I was 12 years old. I went to outdoor swimming pool for everyday for two summers without putting any suncream.  Last week, I noticed another mole on my face suddenly got darker and changed shape in only 2 weeks, my dermatologist biopsied it again and the biopsy just came yesterday as moderate atypical. My dermatologist recommended me to do another surgery by plastic surgeon because it was right above my lip. How long can I wait  until I receive another surgery ? The surgeon can only do it probably one month later. Will it become severe in a month? After my first severa atypical mole, I became so paranoid and stressed, thinking that no mattered what I do, I will definitely have melanoma in my future because of severe sunburn when I was a kid. I cut 6 moles in 1 year and 3 of them were atypical. one mild, one moderate and one severe.  I had nightmares almost everyday and my immune system got so weak.  Do three atypical moles mean that I have a high chance of getting melanoma? I am still developing new moles, I noticed a new one every two or three months.  Do I need to biopsy them once I notice them? I really don't live the rest of my life in fear and my doctor said I may show some sign of depression. Thanks so much for the help. 

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AndyZ's picture
Replies 11
Last reply 3/16/2018 - 10:34am
Replies by: AndyZ, laulamb, Toby0987, doragsda, Rob578, tedtell1, Anonymous

I was found a month ago with a 1.2 mm (the second biopsy although showed 0,54 mm, no mitotic rate, Clark level II, no micronetastasis, clear margins) I had wide escidion and Sentinel Node biopsy which the told me today-after 10 days- it came positive (although it was not swallen and seemed fine). I fainted and panicked. Can not breath since. But they told me that this just a first estimate and I have to wait for the final biopsy which will be ready next week. 

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Amanda&#039;s Mom's picture
Replies 4
Last reply 3/15/2018 - 11:37pm

My daughter now has to decide on a clinical trial of Cavatak & Ipi or standard of care of Tveck(sp?).  Has anyone done this trial?  ANy suggestions?  She is 34.  

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