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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Anonymous's picture
Anonymous
Replies 2
Last reply 8/28/2016 - 10:02am
Replies by: ldub, debwray

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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Sflynn's picture
Replies 10
Last reply 8/28/2016 - 9:59am

Good evening everyone... 1 year to his diagnosis, I lost my husband to this terrible this disease on Thursday 8/25.  He was only 50. I pray everyday that a cure will be found. I am left to pick up the pieces at only 40 years old with a 16 and 19 year old. It's not fair. 

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Anonymous's picture
Anonymous
Replies 6
Last reply 8/28/2016 - 7:26am
Replies by: Anonymous, MoiraM

I keep seeing situations where stages I and II patients end up with stage 4 years later. Other than self checks and dermatology appointments what are things like signs or symptoms we can look for? Without any kind of treatment we are just left to play the lottery with this disease. Any information is appreciated while doing this watch and wait stuff. 

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stotes's picture
Replies 11
Last reply 8/27/2016 - 8:41pm
Replies by: desertsun, Bubbles, stotes, Polymath, Anonymous, BrianP

Just wanted to reach out and hope to hear from others dealing with Stage IV as I am devastated and heartbroken.  First diagnosed as Stage 1A on L thigh in Feb 2008 and had wide excision wih no other treatment.  Almost exactly eight years later found a lump in L groin and found to be metastatic melanoma.  Had all superficial inguinal nodes removed and three were positive for melanoma and extranodal extension.  Had radiation to that area and started Yervoy at 3 mg dose in adjuvant setting (Stage lllC).  After first dose of Yervoy found a lump on right upper back but negative for melanoma.  Had two more doses of Yervoy and the lump grew back and is now testing positive for melanoma.  Awaiting PET scan on Monday.  I am BRAF negative.  I am completely devastated by how quickly I progressed from Stage lllC to Stage lV while on Yervoy.  I live in South Dakota and have been fighting insurance to get a second opinion but have been denied.  I don't have access to top melanoma specialists and feel desperate for some advice about what to do next.  I just feel like I have had the worst case scenario at every turn this year and I am terrified to find out what the upcoming PET will show.  Any advise will be appreciated - thank you!

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I have been on MEK combo for 16 months and my last scan was in April and showing regression of tumors. This past week I have been having low grade fever and body aches, I haven't had this but one time when I first started meds. The pharmacist said it was rare that people development side effects this late on the meds. Does anyone have any experience with this? Or if it stopped working for you, how did you find out. My next scan isn't until April and I am concerned we shouldn't wait that long. I appreciate any feedback you can offer.

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keepthefaith11's picture
Replies 3
Last reply 8/28/2016 - 5:45am
Replies by: Patrisa, Bubbles, Maria C

Eva, been thinking about you wondering what decision you made about treatment. If you see this, let us know how you are.

Annie

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Nikkib's picture
Replies 5
Last reply 8/28/2016 - 7:07am
Replies by: debwray

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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sallyandree's picture
Replies 3
Last reply 8/28/2016 - 2:50am

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 2
Last reply 8/27/2016 - 9:22am
Replies by: Maria C, 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 8
Last reply 8/27/2016 - 10:53am

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 11
Last reply 8/27/2016 - 10:54am
Replies by: ida_aud, stars, 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 4
Last reply 8/27/2016 - 10:30am
Replies by: Gene_S, 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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