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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Laurus's picture
Replies 1
Last reply 6/24/2017 - 5:16am
Replies by: Laurus

Hi everyone,

I'm 35 years old and I was diagnosed with stage 3b melanoma in November 2016. I live in Japan and melanoma is very rare here. There is very little information about the treatment of melanoma. So I need your help.

I had the surgery to remove the melanoma around the knee and two lymph mets around the groin/pelvis in December 2016.

I had 4 infusions of Opdivo from January to April 2017 to treat one more lymph met around the pelvis. But PET scan showed old one(same size) and new lymph met(11mm) around the pelvis in April, so I had 2 infusions of Yervoy from April to May 2017. And I got side effects, which were severe diarrhea, headache and fever. I've been taking Prednisolone but sometimes I still have headache and fever.

My latest PET scan showed the growing lymph met from 11mm to 19mm in June 2017.

Next week, I'll start a infusion of Keytruda and have a CyberKnife for the growing met. In Japan, the Yervoy/Opdivo combo and Yervoy/Keytruda combo haven't been approved. After some infusions of Keytruda, I'll try some infusions of Yervoy again.

My doctor is a specialist in cancer immunotherapy and he thinks the CyberKnife is the best way and the only option for me. I did some research and I've just found Keytruda might work after failing Yervoy/Opdivo, so there is a ray of hope of the Keytruda treatment in my case as well.

And I've just found there is T-VEC clinical trial here. Currentry I've been searching for other ways.

Are there any other solutions to this situation? I am very interested to know if anyone else has/had a similar experience to me. CyberKnife is the only option in my case?

Thank you,


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cammeronwall's picture
Replies 1
Last reply 6/23/2017 - 10:54pm
Replies by: jennunicorn

Hi all! I hope you're feeling good today! We received our news on my scans from yesterday. All clear other than an inconclusive tiny spot on my liver but the surgeon said it's not a tumor. We are scheduled to speak with plastic surgeon on Monday then hopefully set for wide excision sentinel biopsy next Friday. They said I have a 30% it will be found in my nodes... first biopsy on templecwas .61mm (shave), second biopsy ( punch) was ... to me 30% sounds low. My husband was very upset. Thoughts? 

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baesill's picture
Replies 1
Last reply 6/23/2017 - 9:10pm
Replies by: Anonymous

I have a feeling this is going to be me. I had an X-ray almost five weeks ago where the shadows looked the same or maybe worse and another one yesterday that was the same. However this past week feels like the meds started kicking in. I had first side effects--super high fevers, slightly elevated liver numbers, and more. 

My big scan is next week. I'm already sad.


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Jamie1960's picture
Replies 1
Last reply 6/23/2017 - 10:36pm
Replies by: Ed Williams

Any recent stage 2 (or 3) patients with current experience regarding depigmentation / vitiligo around atypical nevus ?

Have had a 1/4" pink nodule / bump "puff up" in a depigmented area. Bump sloughed a layer and has started to recede. Similar pattern as a prior melanoma with ulceration / regression (came, went, came back). Biopsy scheduled for this coming week.

I've read some encouraging articles that depigmentation may be favorable from an immuno response perspective, but want to get on this in the event of regression and reduced ability to correctly gauge depth (2015 experience).

Thank you for any personal experiences regarding depigmentation prior (important) to beginning immunotherapy.

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Anonymous's picture
Replies 4
Last reply 6/24/2017 - 2:06am
Replies by: Anonymous, stars, Ridingaroundwith27Jennifers

29-year old healthy male. Went to Dermatologist on 6/22/2017 with a lifelong mole (literally on my right thigh my entire life) that had crusted/scabbed over and bled a little bit (I may have been scratching it as I was out in the woods with mosquitoes the day before I noticed the blood). He said it is "more likely than not" melanoma, but would not counsel on what type or depth. Did a punch biopsy and sent to lab. Awaiting Results. Are doctors ever wrong after dermatascope or are they pretty adept at diagnosis w/o biopsy?


A few things: there was hair growing in the mole. Is this a good sign? Also, I have a nasty bruise on the inner thigh semi-close to the mole site. Is this dangerous? Thank you for your comments. The waiting game sucks. G-d bless all of you.

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mrsaxde's picture
Replies 2
Last reply 6/23/2017 - 6:35pm
Replies by: CindyJ, Christine.P

As promised, I wanted to come back to give everybody an update on my experience in the anti-LAG3 (BMS986016) trial at Johns Hopkins.

I had my first infusion on Tuesday (6/20). Pretty uneventful in my case. I received Opdivo first, followed by the experimental medication. Everything went smoothly and I have experienced no side effects so far. The research nurse who is overseeing all of us on the trial there told me that another patient who also started on Tuesday had an entire range of side effects. But I've been just fine. As I told her, I hope outwardly things go smoothly while on the inside it's eating up the cancer. But I won't know for sure until my first scans, which I think come at the end of the first or second 45 day treatment cycle.

My next infusion is on July 5 due to the holiday. I'll update again after that one, or sooner if I start noticing any side effects or anything else noteworthy.


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There have been many questions about this type of blood test on this forum and I've been posting about it for years.  Now, there's this:

I'd say it's time to make this a reality, right????  Happy Friday!  Celeste

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Tabbott's picture
Replies 2
Last reply 6/23/2017 - 1:00pm
Replies by: Tabbott, Anonymous

Could someone recommend a Melanoma specialist in Alabama? We live near Mobile, Al but willing to travel for the right specialist. I appreciate any information provided. This is all very new to me and my family. Thank you!

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So I'm a stage IV melanoma patient.  I've been on medical leave since 3/24 when I found out I had a brain tumor which was aggressivly growning after taking a break from Ipi/Nivo treatment due to complications.  I had been off treatment for about 5 months but tumors were shrinking and then bam, brain tumor.  They were quite concerned that the tumor would cause motor issues if not removed immediately so I was immediately scheduled for surgery.  I ended up with loss of feeling in my right leg and foot which is coming back slowly but still not all the way back.  Then the MRI 10 days post op showed the tumor growing back.  The original post op MRI was perfect.  Now the drs were really moving quickly.  They wanted to start radiation with nivo immediately.  It was a wednesday so we started on Monday.  Things were going OK until I had severe muscle cramping and spasms in my right foot then leg then abdomin and neck.  Of course this was memorial day weekend.  The drs are confident that this was a seizure due to edema from the radiation.  They put me on Keppra and informed me about a driving ban.  So long story longer... I have to go back to work tomorrow and I can't drive until November.  My husband is going to drive me into the office one day a week and I'm going to work from home the other four days.  Honestly I don't feel ready to go back or to deal with the schedule juggling.  I had a busy day today between watching my two children, going out to lunch with my in-laws, and getting ready for tomorrow and sure enough I had another seizure.  It was smaller and I was able to quickly take some adovan to stop it but I was home alone with my 5 year old and this always makes me nervous.

 This is my second medical leave since my initial diagnosis last year.  Mentally I'm still a bit of a mess and with all the meds I'm not feeling up to leaving the house or being glued to my work computer.  What if I have another seizure?  Does the clock restart on my driving ban?  Just when I think the cancer has taken everything it's going to take then it goes and takes away something else.  I'm still bummed out about losing my hair from the radiation.  I'm still bummed out about gaining twenty pounds from the steroids.  I can't really exercise because of the numb foot.  I used to be a runner.  Now I'm a tentative walker.

How have you handled working and stage IV?  I guess I've just been trying to power through it but lately I feel like it's all catching up to me.



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CindyJ's picture
Replies 5
Last reply 6/23/2017 - 6:07pm
Replies by: CindyJ, marta010, Bubbles

Hi everyone on the board. I've been lurking for some time, but needed to join to ask a few questions.

My Mom, who is 79 moved to Stage 4 in March of this year. Some background; what she thought was a blister on her foot in August 2015 turned out to be an ulcerated, deep, high mitotic rate melanoma with surface spreading to toes. She had two surgeries to remove it all and had all the lymph nodes in her right groin and right iliac removed (7 of 16 positive). It was so hard on her. She also had bad lymphedema which has been resolved. No further treatment at the time because too far away for trials and her body and spirit were shot.

However, every three month scan (PET or CT) we did, while giving us a couple scares, were clean until December 2016 when a right iliac chain lymph node began growing. . A biopsy was done in March which came back positive. She was put on Keytruda on April 26th by our non specialist oncologist (but my mother loves him). We had our first scan today. It's only been eight weeks. Her node is bigger 4.4 x 3.6 cm (before it was 2.8 x 4.2 cm)  SUV really high at 17, and now a new nodule (though their count is wrong as this new one makes what she always totals) in her lung at 2.5 x 1.2 cm SUV 5.3. She had one lung nodule biopsied before her journey began in 2015 and was ruled an alveolar hemorrhage. All other lung nodules has been consistent.

She has gene mutations for CCND1, PTEN and TERT. Our Dr. told us we could try the trial for Palbociclib (CCND1) or Everolimus/Temsirolimus (PTEN) if Pembro didn't work. We started Pembro before the testing was complete.

Question for anyone with knowledge. Is eight weeks too soon to rule Pembro out? Could her tumor has grown in the month before she started Pembro? Does anyone have advice on the lung situation? If she does a trial I'm assuming we'd have to move? I am SO sorry this is so long, it's just I'm so heartbroken. We thought we had it beat, then thought we had a miracle drug. Thanks for listening, and thanks to everyone who has educated me so well in this forum along the way. Much love. Cindy


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Anonymous's picture
Replies 4
Last reply 6/23/2017 - 8:04am

My husband was recently diagnosed with stage IV melanoma which has spread to his Lymph Nodes.  We are still waiting for some additional test which will determine which type of treatment will be suggested.  So far we like the Oncologist just fine and he has a good reputation as a Oncologist/Hematologist.  I'm not sure how much Melanoma he has delt with, he seems knowledgable, but he's not a Melanoma specialists.  How important is that? 

What about getting a second opinion (like on the treatment for example)?  I'm not sure what would be involved since we've already seen him several times and I don't want to waste time before getting started, also not sure if that would be covered by our insurance.  Like I said, I have no reason to believe my husbands Dr. doesn't know what he's doing, it's just with something this serious we want to make the best decision. 

Interested in feedback by others who have been through the beginning steps. 

Thanks so much!



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I figure you've had to make some tricky decisions by now.  How you do'in?????  c

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Anonymous's picture
Replies 2
Last reply 6/23/2017 - 12:34am
Replies by: Anonymous, Jamie1960

Hello, I am hoping someone can help me understand this pathology report a bit more. I have not yet been able to see a doctor to have them explain it to me. I understand the gist of it but the dermis portion in the microscopic description I'm thrown off by. I had a small mole that I cannot see change recently. Its approximately 8mm wide and in the crack of my buttock so its very hard to see. My family doesn't want me to see a general surgeon for this and would rather me go to a Melanoma Center to have it properly handled. We live in small area with limited services. Any help interpreting this report would be very appreciated. Thank you so much.

It says-

Final Diagnosis




Comment: based on the amount of cytologic atypia and partial sampling, a re-excision of the remaining pigmented lesion is recommended for further diagnostic consideration.

Gross Description

Received in 10% neutral buffered formlin labeled Right Buttocks Mole, is a grey tan skin punch biopsy specimen measuring 0.3cm in diameter and exised to a depth of 0.5cm. Tissue is inked and submitted whole in cassette 175k-4257 dh/STH:lw

Microscopic Description

Sections show skin with a melanocytic lesion having extensions of the junctional component beyond the dermal portion. In the epidermis, melanocytes are disposed as single cells and as nests on elongated and distorted rete ridges. Cytologic atypia ormelanocytes issever. The papillary dermis is fibrotic. 

Clinical History

37/F with disorder of skin and subcutaneous tissue.

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Hey guys, 

Just when I think, "I got this!!!"  Wow!  I get a surprise.....  For what it's worth:

We may have to take this one with a grain of salt, a little go-gurt, a fair tolerance for BS, and a long soak in a tub with lots of soap, soap, soap!!!  Who knew ASCO humor existed????

Have a great Thursday!  celeste

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Maureen038's picture
Replies 6
Last reply 6/23/2017 - 2:01pm

My husband, Bill will have laparoscopic surgery on one 1.5 cm liver met next Tuesday. I believe this will be his eighth surgery. It's so nerve wracking and being in the liver for the first time it's just so unknown to us. He has a top rated surgeon so we're not worried about that. I guess it would be great if someone else had a success story with liver surgery. Thanks for any help and support!!!


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