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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Lori Bierschwal's picture
Replies 10
Last reply 3/13/2018 - 4:46pm

HI everyone- 

I am new to this site as far as posting, but I have been reading one's posts for over a month trying to soak up knowledge! I was diagnosed with Melanoma a few months ago- Dec 1, 2018, to be exact. It's funny but you remember dates like those. I was shocked and broke down so much those first few weeks. Then I went on a rampage of digging to understand this. Afterall, Melanoma is so misunderstood. People take skin cancer so mildly. Anyways, my anger today results from how my General Surgeon handled my case. Unfortunatley, I did not go to a cancer center at first. I had a punch biopsy in Nov,2018 from my G.P., which led to the diagnosis. Afterwards, on Dec 12th I was directed to a General Surgeon (did not specialize in Mel). He said initially that after looking at the 1st path report that he wants to do two procedures: SNB and wide excision. You see, I was .76mm Breslow and Clark level 3 with Mito at 1/  he thought it would be good to do the snb. I had already done some research and agreed (even though I was in that phase of .76 borderline for snb.  Moving now to Jan 18th of surgeries. To my surprise, as I lay in the hospital room with I.V.'s in my arm an hour before surgery, the nurse informed my that only ONE procedure was on the books for me- just the Wide excision! I was dumbfounded to say the least. I knew the chances were not great that it had moved into my lymph nodes, but we were going to make sure! My surgeon entered the rrom 5 min prior to surgery time and was not even going to tell me of the change of plans! I also knew that the SNB should be done PRIOR to the WLE. But i let him do the surgery ...12 days later I get the call on my path report: it was twice the depth (breslow) it is 1.6mm, with a Clark Level 4 !! They said he now wants to do a SNB. I said NO and that I wanted a copy of my path report NOW. So, here we are today, knowing that the mapping part of the SNB could be screwed up because he did the WLE first. But I called Siteman Cancer Center in ST Louis,MO and in two days I will see the leading researcher and surgical oncologist there. He is the tops. I am thrilled to say the least! He is doing his own path report and I will talk and set in motion with him the next steps. Really, I have not even been staged yet- Just 1B according to latest, without doing the SNB. I have been encouraged to learn of so many of you that are doing research to become your own advocate in this fight! We have to! And keep doing it- keep up with the latest developments! And THANK YOU all for being on this site, so now I can recieve much needed encouragment and hope to give some back as well! ((HUGS))!!

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Lori Bierschwal's picture
Replies 4
Last reply 3/13/2018 - 2:33pm
Replies by: Lori Bierschwal, Anonymous, BillB

Hello again...

I am getting ready to have my next surgeries at Siteman...anyone have any experience with this facility- good or not so good? Please help...

Thank you in advance!

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BillB's picture
Replies 2
Last reply 3/12/2018 - 4:12pm
Replies by: BillB, Bubbles

Completed Keytruda Treatment 11 on 3/8, uneventful and side effects since infusion #8 have been pretty minor. 

Last week On March 1st I identified a very small lump in the incision from my clnd/parotidectomy May of 17. Along with that very small lump comes all of the worries we are all familiar with. Since I knew I was coming down to MSK for treatment on 3/8 I contacted MSK and they set up additional testing for me to determine what was going on.  To echo the advice that bubbles, ed and Janner give to all new people, go to a melanoma specialist at a major cancer facility. I competed labs, ultrasound, infusion, oncologist visit, visit with surgeon, and biopsy in 3.5 hours. Everyone was fantastic and it’s more than worth the minor inconvenience of driving 4.5 hours to get here every three weeks.

When I met with the surgeon, he looked at my neck and immediately knew with very high certainty what the lump was. It was only 5-6 mm.  He sent me for a biopsy just for confirmation. The biopsy was conclusive and not conclusive at the same time.  The pathologist made two attempts to get a sample but each time all that was obtained was fibrous material, no cells. I encouraged him to try a third time but because of what he got the first two attempts he stopped and agreed wth the surgeons conclusion.

So for everyone that has had a parotidectomy/clnd of the neck this might be of interest. The lump that I found was a neuroma. During the surgery, a nerve that runs through the neck up to the nerve has to be cut. Apparently it’s very common for the cut nerve to form a neuroma. I had felt the lump 10000 times since last week but when the surgeon felt it he also squeezed it and it hurt, kind of confirming his diagnosis. I still can’t figure out why he squeezed it the second time, I guess confirmation or my wife asked him too since I might have been a major PIA the last week. Also of interest, it has been 10 months since my surgery so it doesn’t have to happen immediately.

hope that this information might help someone else, keep fighting,



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sister of patient's picture
Replies 10
Last reply 3/11/2018 - 5:31pm

Hi folks,

My sister Leisa has been having chest pain for a couple of months (just admitted this, grrr!!!) and her "nivo fatigue" became much worse at the same time, even though still on steroids.

All scans are clear, she's still NED.

Onc has ordered an echocardiogram for Monday, so she is "on it" at least. If anyone has had any kind of cardiotoxicity as a result of nivo infusions, I'd be interested in hearing about it - symptoms and treatments. I've already got great info from Celeste's blog, it's the personal experience I'd like to hear more about.

I'll update this post too as we learn more, in case it's of benefit to anyone else. Have an excellent Friday everyone!


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So I am one of those very unfortunate people whose melanoma went from stage 1 to stage 4 in three months. I would like to develop and implement in myself an extremely strict natural treatment program, and am looking for guidance and resources. Can anyone point me to websites, books, or personal stories of natural treatments that have worked in very aggressive melanomas?

As background, I am a 36-year-old wife of an amazing husband, and I gave birth to our only child 6 months ago. My doctors think that pregnancy may have hastened my cancer (I had a very pronounced "mask of pregnancy" and very dark skin tags during pregnancy as well.) I also have a strong family history of melanoma, as both my mom and aunt died of it in their 70s.

It was discovered that I have two primary melanomas. The first was in a 2mm spot on my shin that was very, very dark (almost black), very irregularly shaped, was slightly raised, and had some regression. Here are photos in case anyone is curious to see:

I also had a 1mm spot on my leg (that had been light brown, then developed dark black spots, and is now mostly light brown again). I also have other little spots on my body that I am suspicious of as well.

While my melanoma was thin (under 1mm at time of diagnosis) and my sentinel lymph node biopsy was negative, just three months later I developed splitting headaches and abdominal pain, which revealed mets to my brain and liver. It was also discovered that I have suspicious nodules in my lungs. It is unknown whether the cancer traveled through my lymph nodes or bloodstream.

So obviously, this is a very aggressive cancer. Based on discussions with my doctors and extensive reading, I am thinking about forgoing traditional treatment (as my melanoma seems to be a very unique and aggressive case, and hopes of a response to treatment is slim). The doctors give me a couple of months to a year to live.

What protocols, books, websites, blogs, or other resources can you recommend for healing and strengthening the immune system to fight this in any way possible? I will be eternally grateful for any help and information you can provide.

Thank you,

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I had a CT and PET scan within a few days of each other (long story). Interestingly, the results were quite different:

CT showed 2 1.5 cm-sized mets on the liver, while PET showed no areas of FDG uptake in the liver.

I have considerable pain in a bone met (shown on CT) but again there was very little uptake on the PET. 

My doctor hasn't really said what to make of this (we're focused on a lung spot that showed up on PET primarily), but I can't help but wonder if the PET means the liver lesions are just scar tissue or "cysts" as the radiology report indicates?

Previously, the liver mets had shrunk considerably, and were the main "target lesions" over the course of PD-1 treatment. There were almost certainly active lesions there at some point. What should I make of this?


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MindyD's picture
Replies 29
Last reply 3/11/2018 - 1:42pm

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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TexMelanomex's picture
Replies 5
Last reply 3/11/2018 - 11:16am

Hey Warriors,

I completed round 8 of Pembro yesterday and no noticeable side effects as of today. It seems to be getting smoother as I go, no problems with labs and in fact they have all remained within normal limits for the past 4 treatments. If it weren't for the surgery recovery I'd be good to go today!

I hope all of you are fighting the good fight. As always, thanks for being there and for the support! 



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tedtell1's picture
Replies 2
Last reply 3/11/2018 - 10:22am
Replies by: gopher38, ed williams

After being diagnosed with stage IV because my tumor was identified as a secondary coming from somewhere else, all my news has been good. All my scans were clear and after the second surgery to "clean up" the pathology showed clear margins. I started Opdivo two weeks ago and will be having that every two weeks. Another question comes up. How often will I have scans and what kind of scan will I be having? Or is that recommended? Curious. Thanks everybody. So far the Opdivo is treating me okay after one treatment I got some serious body aches for a couple of days but that was it! 


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Ridingaroundwith27Jennifers's picture
Replies 14
Last reply 3/10/2018 - 9:41pm

Hi All,

Just wanted to share that after a very long and intense year and 5 months of very scary ups and downs with this disease my last CT scan showed only ground glass areas.  The oncologist was happy to announce she considers me NED!  She then told me that since I had the brain tumor the last time I was off treatment that we needed to continue with the Opdivo at least another year.  

Despite the great news I'm hesitant to be too happy and reluctant to consider myself in the clear.  I worry that this will not be my last dance with this devil.  I'm still bearing the scars from the brain surgery and radiation.   My right foot is still numb from the crainiotomy.  I'm still not mentally whole.  

Thanks to all of you who have helped me carry on and stay strong.  Your guidance and support have meant the world.  To those who feel like they are in the worst of it please stay strong and keep fighting.  May your NED diagnosis be just around the corner.  

Good wishes to you all,



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Hello Everyone,

My Doctor suggested this DecisionDx test to see how likely my melanoma is to return.  Has anybody had this test done?  What is the cost? Does Insurance cover it?  

Thanks for any comments.


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tedtell1's picture
Replies 3
Last reply 3/10/2018 - 5:33pm

Dear Friends;

I am a teacher and I have the first week of April off. The family and I are going to San Diego in between my bi monthly Nivo treatments. I am new to this but know I must be protected when in the sun but I still want to be on the beach! Any cheap/reasonable suggestions for clothing for the beach would be appreciated! As my wife is also going through breast cancer treatments (her last chemo is next week) this will be a hugely needed getaway for us.

Thanks in advance for any help,


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Scooby123's picture
Replies 7
Last reply 3/10/2018 - 5:28pm

Hi all
Been today for check up and results from scan. I am on antibiotics for a sinus issue but feeling more myself after a bad week. Treatment Monday as normal,did not seem concerned about my sinus isues.

Had CT scan did not do head scan think they are doing head every 6 months instead of 3 months due to been clear for the last 2 years after Gamma knife. So body my lymph nodes was up in chest one at 2.4 other 10 millimeters when started treatment. First scan after 3 months reduced nodes by half. Second set of scans no mention of the small one but larger one reduced to 10 millemeters. He classed that node as normal. He said if he did not know I had melanoma the scan he would say is normal. My question was so could they be no cancer in nodes then. But could not say yes or no.

Take that result for now, my birthday on mothers day so I will have a glass of wine.

If this post shows more than once am sorry when submitting it said error so I kept trying it.

Scooby x

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I had originally wrotd for the first time here end of Feb 2018. Seems as if my new surgeon, after looking at the latest path report wants to go back into the original Wide excision, and take more. The margins were not enough (need 2 cm clear all around). But FIRST he will do the lymph mapping and then SNB. Finally. That procedure should have been done PRIOR to my WLE. I am angry but at same time grateful for my new expert surgeon from Siteman Cancer center in St. Louis. Now I have to wait until Apr 13th for those surgerys...He is one of the leading researchers in Melanoma and surgical oncologists. My team is getting stronger. He said chances are 15-20% that it has spread. We will find out. But I just wasted all this time and money the last few months! How to stop being angry? Not sure. So many emotions...anyone have dealings with The Siteman Cancer Center team (St Louis) ? Lastly, I am grateful for all of you and this site. No one understands this terrible cancer and that is so sad.


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