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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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 8
Last reply 6/28/2017 - 11:00am

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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Newmanbell's picture
Replies 5
Last reply 6/22/2017 - 11:07pm

My husband Mark, who is Stage 3b, had 3 infusions of ipi and cannot continue the 4th due to side affects is on a high dose of prednisone now and trying to start wean him off.  I read somewhere that this steroid is known as “Satan’s tic tac”.  I can certainly see why.  My husband who is never grouchy, wired, hyper, or weepy, is all of these things now.  I’ve never seen him talk so fast either! 

He was up all night typing like this mad professor finishing up a late project.  I asked him what he was doing and working on.  His comment is I am writing a story about all that I have been through with this cancer.  In the 26 years together, he has never done anything like this.   He said I don’t know if it is the drugs or what, but THIS will be the funniest story I have ever put together.  Mark has a great sense of humor so I really am anxious to see the final story!  Watching him furiously type, I may be retiring early due to his best seller….

You have to find some humor in all this.



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Anonymous's picture
Replies 3
Last reply 6/23/2017 - 1:11pm

I've been experiencing some sharp pain in my right lung for 3 weeks or so. It's not unbearably painful and doesn't effect breathing etc. I did not have lung mets per most recent scan, but that's obviously the worry. What's best way to discuss this with onc in a way that doesn't lead to "pull the immuno drugs because this may be immune related"? Is there a scan that would give us a good idea of what's going on? Has anyone had similar pains that were a false alarm?

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TexMelanomex's picture
Replies 6
Last reply 6/24/2017 - 12:19am
Replies by: Anonymous, Nick C, TexMelanomex, MichelleRHG, jennunicorn

Hey Warriors!

I recently finished my 3 month (post surgery) CT and MRIs and everything came back clear which was awesome to hear...but as many of you know there is sometimes a good and not so good result from our visits.

The not so good was the identification of a lymph node that was "concerning" a week later back to MDA for ultrasound of the neck and fine needle biopsy. Interestingly, the node of concern was not of concern to the radiologist but she identified a different node on the opposite side of the neck that looked "possibly problematic" so the fine needle biopsy proceeded just in a different location on the opposite side of my neck. I am learning that phrases such as these are not what you want to hear in an oncology hospital BUT they don't always mean anything terrible.

I got the call today that the "possibly problematic" node was benign and I got the 3 month NED badge today.

In other super exciting news the donor site for my skin graft is finally healed and closed!! and the graft site is nearly completely healed. To my surprise and delight it is much smaller than it started out and doesn't look too obvious since its on the crown of my head and it just looks like I'm balding there. Never thought male pattern baldness would work out to my advantage!

I am taking some time to get caught up on all of you and I just read that Jenn's scans are looking good which is super exciting! I hope you are all fighting, living life, and enjoying each and every day as much as you possibly can! Stay in the fight Warriors!




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Anonymous's picture
Replies 3
Last reply 6/22/2017 - 9:07am
Replies by: Bradley75, Ed Williams, Anonymous

I had 39 axillary lymph nodes removed 6 weeks ago. I kept the jp drain tube until this week although i still had 60 to 70 draining daily. Dr. removed drain anyway. It has been 2 days and the armpit area is tight and swelling and my breastfeeding on the affected side is swollen and slightly red. I was not given much instruction at the office at time of removal other than of a swollen ball area comes up maybe call or maybe it will go away on its own. The whole area is tight not just a ball area. Does this sound like anyone else experience and normal or should I be calling the dr.?

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Marymary's picture
Replies 4
Last reply 6/22/2017 - 3:33pm


i had a .4mm melenoma removed in January. My treatment plan is to be checked by my derm every 3 months.

i understand that I caught my melenoma early.. but can I really just "cut it out" and move on? 

Should I be switching to a specialist now that I've had melenoma? I live close to Tampa.. should/ can I go to the cancer center there? 

i just want to make sure I'm doing everything I need to be doing. I'm not a fan of being told "standard care" , I want to make sure I'm being my own advocate and doing everything possible.

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Julie in SoCal's picture
Replies 10
Last reply 6/24/2017 - 6:44pm

Greetings Friends!

We have a plan!!! And it's a good one!

Next Tues afternoon I will start my first (of four) rounds of a chemo combo (carboplatin and pemetrexed). The thinking is that this is the treatment that makes treating two cancers (Melanoma and NSCLung Cancer) comparatively simple. It's quick (only 12 weeks) and very well known. After being in the land of amazing new medicine (I'm talking to you Ipi and Pembro!!), it is strangely comforting, knowing that there shouldn't be any mystery side effects to deal with. After chemo I will start 35 or so sessions of radiation. Then Larry the lung cancer will have been cut, poisoned, and burned!

This is my first trip into the chemo-beamo world and while I like the "known" aspects of it, I'm not really wild on those known things happening to me.  I know I'll be fine. I have an amazing team and am surrounded by crazy friends and crazier family.  So I'll be very well supported.  But I'm still a bit apprehensive. And of course, I may (or may not) get to keep my hair.  

This has been one long, scary roller coaster ride and I've hated waiting to figure things out. But this waiting time has given me opportunity to think and pray about what I want in treatment. It's easy to say that I want to be cured (and my 23 year old body back as a side effect). But it's much harder to figure out what I'm potentially willing to give up. This extended time has helped me figure this out. And I'm so grateful.

Thanks for coming along with me on this long, scary ride.



Stage 3  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017) 2017 Non-small cell lung cancer VATs

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MovingOn's picture
Replies 1
Last reply 6/21/2017 - 6:57pm
Replies by: Julie in SoCal

I'm taking this PET scan as a success (but I'll be looking for the clavicle thing to disappear in the next scan).

Results statement:

"When compared to prior examination, the activity identified in the left neck, region II has resolved.

There was a mild focal area of activity seen in the region of the left proximal clavicle with no correlate on CT imaging and may represent some mild arthritic change."

Diagnosed Jan 2017 (stage 3b with unknown primary). Radical neck dissection Feb 2017 (4 positive nodes in level 5A). Ipi started Mar 2017 - ended May 2017 (Hypophysitis)

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dhwriter's picture
Replies 2
Last reply 6/24/2017 - 7:08pm
Replies by: dhwriter, Janner

I had my followup with the nurse practitioner today about excision of a biopsied moderate atypical mole. Here is the pathology report:


Gross Description: The specimen received in formalin labeled with patient's name and as "lower back left of midline" consists of skin measuring 0.5 x 0.5 x 0.1 cm. ES, 2y / 1bs

Microscopic Description:

Sections demonstrate skin with single cells and nests of moderately atypical melanocytes which bridge adjacent rete ridges. Within the dermis there is papillary dermal fibroplasia and an inflammatory host response. A dermal component of the nevus is present.

Based on the report I was okay with a conservative excision. However the NP said she would be doing a WLE with 4mm margins. I decided to go with a 3 month observation of the area to see if anything recurs and then go from there. The mole was biopsied because it was offered by the NP, not because of any issues with mole. Had it since I was early 20s, possibly late teens, 34 now. No history of melanoma, family or otherwise.

A 4mm margin WLE felt excessive, but she said it was standard for a 5x5mm biopsy. Does this sound right? I've read a small conservative excision should be enough.

The NP seemed perfectly okay with observation. I'm just confused and a bundle of nerves.

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Bubbles's picture
Replies 2
Last reply 6/22/2017 - 11:19am
Replies by: Bubbles, Ed Williams

Sorry for 2 days of radio silence.  2 long work days happened!  But here's the latest:

Hopefully just 3 more ASCO posts to go!  Gotta get her done before the end of June!!  Luck and love to you all. celeste

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