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.

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Hi everyone. I am new to this forum. This week I was diagnosed with Melanoma after watching a very small change on my leg over some time. I am glad I got it checked out, as my GP didn't think it would come back as anything. My diansosis after the initial encision is Melanoma In Situ (no ulceration) supervening on active regressing compound melanocytic naevus. I was told this is good news as it is in situ. My concern is that on the report it states that the tumor was found in the top layer of the skin extending to the granular layer. it states however "in the papillary dermis most of the change comprises of an infiltrate of lymphocytes and melangophages with a small number of bland naveoid melanocytes. These changes represent active regression in a melanocytic tumor. There is no ulceration. Deeper levels wer performed which confirm the changes discribed.". This has me worried as there has been regression. Does this mean that they can't actually determine how big the melanoma was as it may have started to regress? Are they able to be sure it is insitu in this case? I am terrifed. I have been referred to a dermatologist who I see in two days to see if I will need a wider excision as the margin is only by 0.3mm at present. 

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My significant other has Stage IV melanoma which moved from the original location (his back) to his stomach.  The melanoma has only traveled to his stomach and has not metastisized to other areas.  He has been on an Opdivo and Yervoy regimen since April (he has gone through 5 rounds).  A PET scan was done a week ago which revealed there has been no improvement, so we need to look at other options for treatment.  He is NRAS positive and the oncologist recommends putting him on molecular targeted therapy, specifically a combination of Binimetinib and Trametinib.  This has been quite a week with this news, but we are trying to hang in there.  

Has anyone who is NRAS positive gone through targeted therapy?  

Thank you. 

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Aaron's picture
Replies 1
Last reply 8/26/2016 - 9:45pm
Replies by: BrianP

I am just posting on here to give an update on what's going on in my world for anyone who may be wishing to read it.  As a reminder, I am on an ipi/nivo trial with a braf inhibitor arm to follow.  Shortly after my third infusion headaches began with my pituitary being compromised and developing vitiligo all over my arms.  4th treatment of infusions were cancelled with ipi probably being permanently off the list.  i understand this and am ok with it as I know I am stimulated.  Last night I visited with Dr. again and am up for my first scan next Thursday.  i have not been weaned off prednisone in anyway shape or form and do not believe I will begin being weaned for a few more weeks.  I was informed that I may no longer be able to participate in the trial since I no longer fit in their parameters and if I do continue on the trial, they may want me to go ahead and move onto the BRAF arm.  It is questionable as to whether or not I will be able to take Nivo anymore as well, since I did have to take benydryl during my last infusion (though I can't help but believe that we will at least try it again). There are still a lot of looming questions out there, but i feel it is in my best interest to pursue the nivo option rather than continue of trial with BRAF at this point in the game.  I feel in my gut that I will see an improvement in my first scan, just don't like the idea of being denied the use of the trial altogether or giving up on immuno prematurely.  I am still thankful though that even if I am off trial that the nivo component is still readily available to me if I have the consent of the drs.   

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JohnA's picture
Replies 7
Last reply 8/27/2016 - 1:23am

Hey folks, 

My wife has 4 brain mets and is about to get SRS next week for them at a major medical center.

Ipi+nivo eliminated all body and previous brain mets in 3 cycles, but these 4 new brain mets grew while on therapy. Bummer.

The question comes to what to do after the SRS.

I know of the data (thanks Celeste!) on nivo + SRS from the retrospective study from Moffitt released earlier this year. Basically, if you get Nivo within 4 weeks after SRS, outcomes are improved.

BUT - she's only had 3 cycles on Ipi+Nivo, so technically she could have 1 more Ipi+nivo.

Clearly, the concerns are that side effects will be enhanced in the brain by combining SRS and Ipi+Nivo, and if the side effects are bad enough then she'd have to come off treatment entirely and maybe miss the chance to have the Nivo maintenance doses.

Anyone aware of any data (experiences?) on which to pair with SRS (Nivo only or Ipi+Nivo) and how closely they should be paired in time? I imagine you want the brain inflamation to reduce from the SRS before starting anything new?

Thanks.

 

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Anonymous's picture
Anonymous
Replies 10
Last reply 8/27/2016 - 3:56am
Replies by: stars, ida_aud, debwray, Prd10

This board has been a blessing. I was diagnosed with malignant melanoma 3 weeks ago from today. 

I noticed two "funny" looking moles on my lower leg and had the dermatologist check them. She did a biopsy and both came back as melanomas. Since then, I had a fully body check, had 2 more that looked suscpicios send back for biopsy and both came back normal. As for the two melanomas I had them both removed with a wide local excision 1 week ago. Lab on the skin removed came back clear and with clear margins so both were completely excised. I'm aware of how lucky I am. However, I had a couple of questions about the initial biopsy report: 

2 moles,

2-3 cm from each other,

one .15mm and the other .65 mm Breslow thickness,

no ulceration,

mitotic index Zero per mm square,

deep margin absent on one and "positive at one side" on the other,

regression absent,

microsatellitosis absent,

perineural invasion absent,

Lymphovascular invasion absent, AJCC/TNM classification: pT1a NX on both. 

(no Clark scale mentioned, but I read that classification is considered outdate by some in the medical community, hence why probably not reported here. Report shows a primary pathologist and another pathologist of the same lab concurring with results). 

Comment from pathologist: he "suspects synchronous primaries, presence of two close to each other may indicate the alternative of local epidermotropic metastasis" 

Surgen that removed the moles suspect that proximity of the two moles is coincidental and not metastasis as they are so thin and no other involment is evident as far as they can tell. 

No other test are planned according to both derm and surgeon. Surgen is a national expert in Moh's surgery (melanoma experience is all over his credentials). 

Questions I still have for this board (whatever answers I can get I'll be immensely grateful) 

Has anyone had 2 primaries so close two each other? Can I assume one of them appeared first (the deeper one) longer in the past and the other one just appeared as a local metastasis of the primary some time after? The fact that they were so close to each other worries me. Given the fact that I have so many moles all over my body and that a skin check where the derm just looks at moles with a naked eye seems to me a little superficial given the stakes. 

Do I ask for more tests? 

We were already planning to start trying for our first baby in the fall. I read most studies can't find a correlation between pregnancy and melanoma diagnosis and/or prognosis but I read a lot of post on the board of women that reported anecdotal evidence of what they thought happened to them- pregnancy bringing on or worsening their melanoma. Any suggestions, personal experiences any of you can bring will be so appreciated. This whole thing has put quite a damp on all the excitement of having our first baby. I'm 33 and waiting 2-3 yrs before getting pregannt (as some suggest) is harder for us. 

Thank you in advance for your time, patience, compassion and input. Wishing every one on here the best of luck! 

I. 

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/26/2016 - 8:02pm
Replies by: ldub, jennunicorn, Anonymous

So here it goes.... I have this mole on my scalp,always had it, it was about the size of a sharpie marker tip, well about a week ago my wife noticed it was bigger...a lot bigger, and dark,black in color and raised, so I set up an appointment with a dermatologist,got in quick, next day actually. The derm looks at it measures it, he says about 8-9mm, then looks at me and says it's benign. He says it looks fine because the edges look good. That's it nothing more, I tried asking questions, didn't let me get a word in, by that time I was pretty frustrated. He said he wouldn't even recommend taking it off because it's on my head and not really visible. He didn't give me an explanation as why it grew in size in a matter of months....should I be concerned, or am I overthinking this? Everything I read says that growth and color change is bad,I guess I just some opinions, should I get a second look at it from a different derm?

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Shaneswife's picture
Replies 1
Last reply 8/26/2016 - 8:33am
Replies by: Anonymous

Hi

If your primary lesion is located on the left trunk and with a negative snlb on both sides, and your primary spreads to the right side lymph nodes is that considered a regional or local metastisis?

Thanks in advance.

Janis

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Anonymous's picture
Replies 4
Last reply 8/26/2016 - 9:52am

Hi all! 

So suffering from all the side effects of immunotherapy I became curious to see if there are any alternative or maybe supplemental treatment options. There is so much literature on herbal medicine, dietary changes, etc. 

Just wanted to see if anybody has tried any holistic approaches? What lifestyle changes have you guys made since the diagnosis? Im trying to change my diet now and eat cleaner, maybe try to stay active with some yoga. Any suggestions? 

 

Thanks! 

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jvictoria's picture
Replies 2
Last reply 8/25/2016 - 6:33pm
Replies by: vickiaa0529, Bubbles

Hi everyone.. well, I've been pretty down the last couple of months... had to be taken off the ipi/nivo trial due to side effects and a recurrence in a lymph node in my arm. Then came the news of nodules that grew in my lungs and failed lung biopsy to determine if it was metastatic.

Had full set of scans recently, CT, PET, MRI and was going to the surgeon for a chat about VAT to have the nodules removed. I'm fully thinking they have doubled or tripled since my last scan. In he comes and says, I won't be able to operate on you... you're nodules have shruken down to pre-treatment size and some are just specs now. The emotions, feeling and gratification are indescriable.

I keep on pinching myself... I feel like I'm in a dream.

It's not a cure, I still have to have scans every 3 months..., I'm having hormone issues (Pit/Thyroid). But, I lived another day... and I am thankful to all.

Thanks to all you that have followed and helped along the way. I'm not leaving. But, will keep posting and helping others as I can.

 

Juan

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...so says a recent study.  I know sentinel lymph node dissection (SLND) is a hot topic and difficult decision for those of you recently diagnosed.  I put up a post today that includes the abstract of this recent study, links to prior posts re the odds of having a positive sentinel node as well as another that addresses the murky recommendations for and against CLND (complete lymph node dissection).  SLND is done with the needed wide excision, while the CLND is done later IF that is what you decide to do and is a seperate, different,  procedure.

So if any of that interests you, here's the link:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/sentinel-lymph-node-disection-important.html

Wishing you all my best.  celeste

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vickiaa0529's picture
Replies 22
Last reply 8/26/2016 - 6:26pm

Stage 4 

brain met at MDA

scared to death

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/25/2016 - 3:33pm
Replies by: jvictoria, Polymath

I had a thin melanoma removed in 2011, stage 1A, clear margins and follow ups with dermatologist. It came back earlier this year in my lymph node in the arm. Had SLND and 1 out of 7 lymph nodes were positive, but the 1 lymph node they are pretty sure were multiple lymph nodes matted together. I also had extracapsular extension. I am totally confused as I have two different Oncologist,  the hospital (a research hospital) where I have gotten my initial treatment and surgery and then my local oncologist for follow up. The hospital options given after surgery are s Clinical Trial, Interferon, or watch and wai, with no radiation. The hospital I went with for surgery did not offer Yervoy, as they feel the risk does not outweigh the results. My local Oncologist, is recommending Yervoy, but they wll only adminiser it at the 10mg dose, and  he is strongly recommending radiation. I traveled back to the hospital for a follow up from the surgery and advised of the local oncologist recommendation of radiation and he responded that it was my decision but in his opinion is not necessary due to it only lessens the chance of local recurrence in that one area and if it did come back there, they could again remove with surgery. He feels the complications with my arm from radiation may outweigh the results.

 I don't understand how every Dr. can have different opinions on treatments..

Any advice?

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/25/2016 - 7:15am
Replies by: Capt jack, Patrisa

For those that have gotten a response from Keytruda, how long did it take for shrinkage of tumors?  I have in transit tumors and can feel them under the skin.  The area around the tumors turns red at times so I am assuming it is some type of inflammation.  Have any of you experienced redness of the skin around subcutaneous in transit melanoma tumors?  I am not sure if this is from Keytruda and is a good sign that it might be working or if it is common and something that happens in the lmphatic system when fluid is blocked by tumors.  It does not appear that the tumor has shrunk any after 2 infusions.  Thank you for any responses. Take care everyone.

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stevecathy's picture
Replies 2
Last reply 8/25/2016 - 2:08pm
Replies by: stevecathy, Andrew1725

I am looking for thoughts?? Short version of my husbands journey. Diagnosis July 2015 , 3a . Originated on 4tg toe which was amputated. Lymph node disection 4 nodes positive 1mm or microscopic. Completed 4 infusions of yerovoy. Right after completing 4th dose , had 2 Mets in transit on thigh. So then ctca started mek/taf combo. He is still on mekinist and taflinar half dose since January. So far had 2mm and 5mm in lung , 5 mm gone in March 2mm still there June. Now last week's scan 2mm still same and reading states likely scar. With this we are over joyed with relief. Dr. Still want to continue combo. My mind wonders if he was responder to yerovoy as I read many have Mets in transit. So I have to wonder did ctca give enough time and is combo over kill. OK, this is not short , but my mind is always on overdrive. Just looking for thoughts. Thanks everyone

Cathy Jewell

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