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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Ingekk's picture
Replies 4
Last reply 7/31/2017 - 6:21pm

I am so relieved right now. They where only able to find cancer in one lymph node. It appeared to be "closed", and showed no signs of spreading. They checked 80 other lymph nodes and none of them had any cancer.

They told me this means they do not even recomend Radiation treatement. I will be followed up every three months for 10 years to be shure that the cancer does not come back. And I will also have a couple og  pet scans the first years. 

They think that the cancer came from the melanoma I had removed for 15 Years ago, that had spread to the lymph back then. This time we took all the lumph nodes on  the neck and my muscle, and all the blood vessels on the neck. 

I feel like I won the lottery on this one, and are not scared anymore of the checkups to follow. I understand that it has a chance to come back other places on by body, but surgents told me that after looking at the evidence, in my case the chances are close to 0. 

I am celebrating with my family tooday, and finally I can relax a bit, and get our well earned summer vacation.


Inge Kristian


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Anonymous's picture
Replies 4
Last reply 7/31/2017 - 5:58pm

I have a question my father in law was recently diagnosed with stage 4 melanoma what should we expect and what is the life expectancy ha has been offered a clinical trial how smart is it to involve him in that 

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Ingekk's picture
Replies 2
Last reply 7/31/2017 - 5:41am
Replies by: Jacquie, J.bun

So I am back home from surgery. Still recovering, and my neck is looking like something from a Frankenstein movie. I dont mind it, but they removet a tooth from my lower back jaw, and that really hurts. GOing back next friday to hear what they found in the removed tissue. They told me that they could not se anything else than one large lymph when doing the surgery, so I guess that is good news. They still tell me thet the surgery are going to heal me, and they tell me that it will not likely come back again, as there is no evidence of any melanoma spreading trough the blood system. Still they recomend me to take radiation to be shure that any leftovers from surgery are taken care of. At this point there is no other treatment available for me as they think I should be free from melanoma after this surgerey. At the same time they also states, you never know for 100% with this diease.

Inge Kristian

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Anonymous's picture
Replies 1
Last reply 7/30/2017 - 7:21pm
Replies by: Janner

I recently had a mole shave biopsied. It was my first experience with any changing mole (I'm 45). It started feeling like there was a pimple underneath it and it got reddish. By the time I saw dermatology (about 8 days later), the symptoms were fading -- discomfort was gone, redness was gone, though the original mole was a still a bit raised at that point. I have no known family history of melanoma. 

The shave biopsy came back as "Compound melanocytic nevus with congenital features and mild to moderate junctional atypia. Junctional atypia focally extends to the margin."

I was sent to dermatology surgery for excision. The surgeon told me these rarely turn into melanomas but that hte standard is to excise.  When I asked about the reasons, he told me that when they get into that "moderate" range they like to remove them, and that they also wouldn't want me to forget about the spot and not notice changes in the future.

I did my own research and what I'm finding is studies that suggest the outcomes for moderate atypia are similar to mild in that they don't turn into melanomas, whether excised or not. Further, recurrence of the atypia is low (4%). (for example, this, this, and this).

Am I missing some research that conflicts with these conclusions? I understand that the conclusions in these studies aren't absolute --- that they can't say there isn't any risk, but they do seem to suggest that risk is pretty low of just observing plus annual skin exams rather than excision.

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MindyD's picture
Replies 28
Last reply 7/30/2017 - 1:35pm

Hi all,

New to the forum, as I was diagnosed earlier this month.  It's been a crazy couple of weeks, and I have learned a lot from stalking this forum.  ;-)

I am one week out from having the WLE and SLN biopsy, which removed 5 axillary nodes - all negative.  Yay!

This puts me at at Stage IIa.  My surgical oncologist decided to submit the tumor for a new test that they've only been doing for about 6 months.  It is called DecisionDx - Melanoma, performed by Castle Biosciences, Inc.  It is a gene expression profile test...  Quote from the site:   "...a molecular test which has been shown to identify tumors at high-risk for metastasis more accurately than the factors currently used by doctors, including the depth of the melanoma (Breslow's thickness)".

My doc says that if it comes back in the Class 2 (high risk) category, then there is a better argument to have further tests/scans to check for spreading, which insurance is more likely to cover.  He also said risk for recurrence would be higher, so we might go ahead with adjuvent treatment.

I am thrilled that something like this now exists, as I did not like the idea of the "wait and see" approach for the next 5 years.  Especially since it had been 6 years since I had seen a dermatologist prior to having this mole removed.  Who knows how long it's been there...  and I've heard several examples of Stage 2 skipping 3 altogether and goind directly to 4. 

From the studies I've read, the accuracy of past patients has been highly accurate.  I should get results in a couple weeks.  In the meantime, I tried to find some threads about this topic, to no avail.  Has anyone had this test done that would like to share their experience? 


- Mindy

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Detroit97's picture
Replies 5
Last reply 7/30/2017 - 12:03pm

Hello everyone! My name is Julia, I'm 38 years old and diagnosed yesterday with melanoma. I've had this spot on my back, literally on the skin above my spine, for several years.  Recently I've been really sick but now I'm wondering if this is all related.  I'm also wondering that if it did metastasize, would it go to my spine? I'm still waiting to hear back the specifics from my doctor but I do know the sample size was 4 mm. I saw the sample and it did have some depth to it. Has anyone gone through a similar situation? Thanks for all of your help and support! I'm nervous. sad



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Anonymous's picture
Replies 10
Last reply 7/30/2017 - 9:31am

  If one had to choose one over the other--which would it be?  Does one have fewer side effects?  I realize everyone will resond to the treatment differently.  I just would like some input on why one is "better" than the other.  

Thank you

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jennunicorn's picture
Replies 4
Last reply 7/29/2017 - 3:08pm

Hi guys! Just wondering if any northern cali peeps will be at the Miles for Melanoma 5k tomorrow in Golden Gate Park?

Team Jenn will be out there walking our butts off :)

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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thinkingofu's picture
Replies 6
Last reply 7/29/2017 - 11:58am

Hello everyone

Thank you so much for being so helpful in the past. I have another question regarding your experience with treatment. 

My mother has stage IV Melanoma, mets in brain (3) and in the lung (1). 

There was swelling in her brain caused by two of the mets (liquid around them) which was taken care of during the operation. Two of the mets were taken out during the op and 1 is still there. 

We are preparing to move her to another hospital, but doctors are considering giving her first round of treatment now. 

We have mentioned Keytruda to them which they know about and think it may be helpful, but they are saying that Keytruda may produce another swelling (liquid) in her brain. 

Is that a known side effect of Keytruda and other immunotheraphy drugs?

Thank you 


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Mat's picture
Replies 3
Last reply 7/28/2017 - 8:48pm
Replies by: Bubbles, Mat

Hi folks, I'm generally doing well and will post a more detailed update.  In the meantime, question--my latest side effect is pneumatosis (gas bubbles in colon wall).  It is asymptomatic, but has been showing up on scans--and increasing--over the past several months.  Has anyone seen this as a side effect of treatment (nivo) or prednisone use?  If so, how has it been treated?  Thanks.

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Anonymous's picture
Replies 2
Last reply 7/28/2017 - 2:15pm

For those of you who responded to my queries about coumadin and biopsies, I wanted to thank you again and let you know that my husband's biopsy today went very well and that he did not have to stop his coumadin.  The surgeon said he thought the lesion was squamous cell and no danger but we'll get the formal results within a week.  We don't anticipate further issues.  The personal stories you shared alleviated so much stress for me.  Thank you all!


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msitz's picture
Replies 6
Last reply 7/28/2017 - 2:13pm

My father was diagnosed with stage 4 Melanoma (primary unknown) in March 2015 with lung, bowel and lymph node metastases at the age of 59. He had a very large tumour burden with multiple huge (up to 8cm) tumours and had a bowel perforation prior to starting treatment. There were no treatment options available for him in Canada so we brought him to MD Anderson for an opinion.

He was started on Keytruda in March 2015 and had a near complete response. He did have an inital scan immediately after starting treatment that looked like progression but this turned out to be pseudoprogression as subsequent scans showed a dramatic reduction in the size of all of his tumours. Once his CTs stabelized, he underwent a PET scan that showed that he had just one tumour that was still active. This one tumour remained active on PET for 6 months so we decided to remove it in case it was a resistant piece of melanoma.

He just underwent surgery at MD Anderson last week to remove this piece of tumour. The final pathology report is back and there was no melanoma in the tumour, just inflammatory cells. He had a complete response to Keytruda!!

I am posting this to let those of you out there know that there is hope despite a large tumour burden. My was extremely sick in March of 2015 (details in previous posts). Positive stories on this forum kept our family going so we are hoping to pass along the good news.

All the best to everyone.

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selenarae's picture
Replies 2
Last reply 7/27/2017 - 9:46pm
Replies by: selenarae, SABKLYN

I had a mole biopsied in early March and it came back as a "Compound Melanocytic Nevus with Moderate-to-Focal Severe Atypia". The lesion extended to the deep biopsy edge. I then had it excised and got myself a tiday 18 stitched in my back and there was no remaining nevus after excision.

Now, a couple of weeks ago, I had 4 other suspicious moles biopsied. I just got the results and only 1 is recommended for excision with the other 3 being given the option of "wait and see" or "excise if you want to"...My question is, what would you do? I'll be discussing all of this with my doctor, of course, but I'm curious about other people's opinions. After describing the 4 lesions, I'll add other details.

These are the 4:

1) Lentiginous Junctional Melanocytic Proliferation with Moderate Atypia. The lesion extends focally to the deep edge. Conservative re-excision of this lesion is recommended.

2) Lentiginous Junctional Melanocytic Proliferation with Mild Atypia. The lesion extends to the peripheral biopsy edge.

3) Lentiginous Junctional Melanocytic Proliferation with Mild Atypia. The lesion extends to the peripheral biopsy edge.

4) Compound Melanocytic Nevus with Mild Atypia Extending to Deep Edge.

OK, so obviously #1 has to go. I think #4 is fine, with monitoring, and doesn't need further excision.

#2 and #3, however, though they have mild atypia, extend to the peripheral biopsy edge. In my lay opinion, it seems to be that the medical assistant just didn't cut widely enough, and missed getting some of the mole at the surface level. Would that be a case where they could just re-do a wider shave, or is it OK to just leave alone and watch it? The reason I am hesistant to excise any more than I need to, is because #s 1-3 are all along my spine. :( I'l already concerned about having a "conservative excision" so close to the middle of my spine, just under my bra line. Then again, I figure if they are going to cut me at the top of my spine, what's 2 more cuts? 

I'm pretty new to this and I know these have not yet reached full melanoma status, but I feel like I am working to stay ahead of them, so that they don't have a chance to turn into melanomas. Any insights would be greatly appreciated. 


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Casitas1's picture
Replies 8
Last reply 7/27/2017 - 6:56pm

Well, after a long day... An hour and a half drive, (luckily along PCH ) three hours of scans, needles, blood and waiting. You all now the routine! My Oncologist ( Rock Star) after what sounded like an ear full from a not so happy patient next door(These Drs. have highs and lows just as we do) came in and told us your scans are perfect! You are still NED!  Ned and i have been hanging out for a year now and have been off Pd-1 Pembro after jumping ship due to side effects 8 Months ago... Thank you all for loads of support and tons of the best info around!

Best wishes to everyone, Paul

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Anonymous's picture
Replies 4
Last reply 7/27/2017 - 11:41am

I will be starting immunotherapy treatments next week.   Nivo.   Naturally my Dr. discussed side effects with me but here's what I didn't ask.  As far as nausea, rashes, fever, etc., are concerned, for the most it typically something that starts right after treatment and then gradually subsides until your next treatment or is it something that stays with you.  I know everyone is different and experiences different side effects, but I would like to hear about your experiences.  If I do have some or all of the side effects I would like to know if it will remain an issue or if I might start feeling better after a few days or a week.  Also, does it get any better after additional treatments or stay the same.  In other words can you build a tolerance the side effects once your body is more used to the drug.  From what I'm reading it sounds like that's unfortunately not the case; as some people mentioned having to stop a particular treatment because of side effects.  

Thanks everyone, and as always hoping and praying for the best for all of you!


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