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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Richelleras7's picture
Replies 1
Last reply 3/14/2018 - 6:12pm
Replies by: Janner

Hi everyone,

Im new here. Was just diagnosed 2 days ago with stage 1. I’m only 35 and have 2 little kids, 3 and 1. I am so so scared. I have my surgery on Tuesday to remove more. After the initial biopsy it is .38mm. Any advice would be appreciated. Thanks

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nat75's picture
Replies 9
Last reply 3/15/2018 - 8:03am
Replies by: nat75, Janner, Linda5, Anonymous

i posted a couple times on this board about fear about strange mole. i called clinic today because i didnt know if i could go into the city for biopsy tomorrow because of car trouble and was told i have to come in because biopsy is abnormal. with other symptoms i have of pain in neck and weak arms, weight loss,swollen lymph nodes etc im afraid it has already spread.

i am so scared and sad and in shock right now if anyone can give me some advice right now it would be greatly appreciated. im in shock i can barely think :( i hope this post makes sense.

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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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bjeans's picture
Replies 10
Last reply 3/19/2018 - 6:59pm
Replies by: Bubbles, bjeans, Linda5, 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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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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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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MichelleRHG's picture
Replies 2
Last reply 3/14/2018 - 12:03pm
Replies by: MichelleRHG, Bubbles

SO SCARED!! December CT scan showed a 1.1 cm hilar lymph node which Dr. Amaria was not concerned about then. Yesterday's scan showed it had doubled in size so will have a biopsy next week via bronchoscopy at MDA.So scared, bc it means the Opdivo isn't working if this is positive for recurrence. Oncologist here not crazy about surgery or radiation if its positive and wasn't sure I have enough "disease" for a trial. What questions should I ask the pulmonologist? Oncologist? Has anyone had this procedure? What to expect? Thank you in advance.

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Anonymous's picture
Replies 2
Last reply 3/14/2018 - 9:11am
Replies by: Janner, jetdoctor67

Hey all. My partner and I live in Chicago and are low income. He has applied for Medicaid and is waiting for it to come through (they bungled things for his initial application). Thing is, he has a mole that has been glowing/bleeding/changing colors, and he has risk factors for melanoma (uncle has it, he has lots of moles, sun exposure). Got a referral to see a dermatologist to get it removed from a sliding scale GP, but having a hard time finding any sort of sliding scale dermatologist in Chicago without a wait list months long. Wondering if any of you know anywhere to go in Chicago with sliding scale or anywhere that won't charge right away and thus we could get Medicaid to reemburse when it finally comes thru. Otherwise, we are left debating whether or not to bite the bullet and pay tons of money to see a dermatologist now, or wait on insurance to come through. Thanks for any advice.

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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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Alce123's picture
Replies 4
Last reply 3/13/2018 - 7:59pm
Replies by: Janner, Alce123

Hello all!

I came on this board a lot when I was first diagnosed with stage 1a melanoma in 07/2016. It really helped but, like many other early stages, I had pretty much gotten back to living life lately.

Before being diagnosed with melanoma I started IVF treatments. I do not think this was related to my primary because I noticed the mole at least a year before I started fertility treatments. Anyway, I waited a year to get back to trying for a baby and am currently set for an embryo transfer (putting the embryo back in :p) tomorrow.

Yesterday I noticed a dark brown/blackish spot in the scar tissue of my WLE. It seemed to come out of nowhere. I had my mother, who is an oncology NP but doesn't work at all in derm, look at it and she said it looks like a blood blister to her. My husband agrees and is insistent he wants to "pop" it lol. I had just looked at my scar earlier in the day and didn't see anything. I noticed the spot just after returning from a run so... I guess that's possible.

At any rate, I called off of work and am obsessively calling my derm for an appointment. I know none of you can tell me if it's melanoma or not... just looking for support. How often have you seen local reoccurances? My lesion was only .44. It seems unlikely but I also haven't noticed anything like this anywhere else on my body.

Thanks for reading and sorry for rambling :)



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TexMelanomex's picture
Replies 18
Last reply 3/17/2018 - 10:53pm

Hey Warriors! 

I just saw my path results from my surgery on the 2nd and I can now say with certainty that PV-10 did its job and did it well. The treated area resulted in "0% viable tumor". Time for me to buy some more Provectus stock! This is a big win in the battle, now....on to the remaining two nodes with more Keytruda, I just wish they could reach them with a long needle full of PV-10! 

Just wantred to share some positive news with my fellow Warriors. STAY IN THE FIGHT!!


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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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Lori Bierschwal's picture
Replies 4
Last reply 3/13/2018 - 2:33pm
Replies by: Lori Bierschwal, Anonymous, BillB

Hello again...

I am getting ready to have my next surgeries at Siteman...anyone have any experience with this facility- good or not so good? Please help...

Thank you in advance!

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kst's picture
Replies 3
Last reply 3/13/2018 - 8:47pm
Replies by: Bubbles, kst

Just finished 10th of 24 Nivo infusions for stage 3C Wednesday. By Saturday had to go to the local ER with dehydration, joint pain, nausea, diarrhea, and fever.  Transferred to Houston same night.  Blood work, ct scan of abdomen, and just about every other test they could give confirmed colitis. After IV (6 litres so far), multiple antibiotics, and steroids every few hours I'm starting to feel better. 

My melanoma doc is meeting me at 7:30 tonight to go over treatment.  I assume treatment is over for me at this stage since I am Ned.  My worry is this treatment will be unavailable to me if I have a recurrence.  Any advice on questions to ask would be greatly appreciated.

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I had a CT and PET scan within a few days of each other (long story). Interestingly, the results were quite different:

CT showed 2 1.5 cm-sized mets on the liver, while PET showed no areas of FDG uptake in the liver.

I have considerable pain in a bone met (shown on CT) but again there was very little uptake on the PET. 

My doctor hasn't really said what to make of this (we're focused on a lung spot that showed up on PET primarily), but I can't help but wonder if the PET means the liver lesions are just scar tissue or "cysts" as the radiology report indicates?

Previously, the liver mets had shrunk considerably, and were the main "target lesions" over the course of PD-1 treatment. There were almost certainly active lesions there at some point. What should I make of this?


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