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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Leslie'sHusband's picture
Replies 4
Last reply 4/4/2014 - 1:16pm

Our consult @ Duke yesterday left us with mixed feelings.  We were a bit disappointed that the slides of the tumor and lymph node had not been reviewed by the pathology labs before our visit yesterday.  On the upside of that, we are happy that they are not just taking the other lab's word for things and are looking at things for themselves before making any diagnosis and plan of attack. 

 I was also a little disappointed that my main question about the minimally invasive lymph node dissection was not answered until we got the consent form for the surgery to take home.  I asked "Are you seeing any improvements in recovery times and fewer complications with the minimal invasive surgery?"  The answer was essentially "it's still a trial, that's why we're offering it."  The consent form, however, states that wound complications are about 18% with the laproscopic surgery, and about 65% with the conventional surgery.  Those numbers may be off a little, I don't have the form in front of me now.  They gave us the consent form so that we would have it ready in the event that their lab confirmed the presence of melanoma in the lymph node.  "We see more melanoma in a week than most of the local doctors see in a year, lets wait and see if our labs confirm the lymph node diagnosis before we schedule surgery."

Les is committed to having the laproscopic lymph node removal done at Duke if their lab confirms melanoma in the SLN.  Treatment afterwards is still up in the air...


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My Dr office has LDH at 100 - 250 as normal. Mine has been around 190 for as long as I know until this month.

On 3/3 it was 259. Dr thought it was the T10 vertebrae and the radiation would cause it to drop but it hasn't.

On 3/31 it is 396.

My Dr mentioned it was still high but when I left I got the report and I'm like what the heck. That's a huge jump. I also know I've been feeling a bit lousy for over a month.

Any advice what I should have my Dr do to find out what is going on? Currently he's not planning on doing anything except continuing to try to get me into the Merck PD1 EAP.

Any advice on anything I can do about it?



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Anonymous's picture
Replies 0

Hi Everyone,


I will be in chat tonight at 8:30 tonight.  Hang tough.

Love and Light

Carole K

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jswce77's picture
Replies 8
Last reply 4/17/2014 - 8:45pm
Replies by: jazzygal, tickyloo, Janner, dellriol, jswce77, Anonymous

My husband was recently diagnosed with an amelanotic T1b melanoma on his face. He is having it excised as well as a SLNB this week. Our doctor is hesitant to perform any scans. From what I've read, melanoma is unpredictable. We have young children and I want to error on the side of caution. Should I push for a scan of some sort? Is it typical for a T1b patient to get a scan or chest x-ray? Any advice would be greatly appreciated. Thank you. 

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Anonymous's picture
Replies 2
Last reply 3/31/2014 - 4:42pm
Replies by: laura b, Janner

My dad (69) had a mole removed from his scalp in September 2011 which was staged at IIC. After experiencing some chest pain two weeks ago, we learned after a PET and biopsy that the melanoma is back and contained to his lungs. The oncologist has suggested two treatment options - Yervoy and Vemurafanib, depending on BRAF testing. The doctor expected the results back on Friday, but when we called to find out, we learned Medicare is making us wait 14 days to submit another lab test, and then it will take another 3-5 days for results.

It makes me feel so helpless. We know this is obviously aggressive, and it seems like days/weeks really matter. Does anyone know of a way to appeal to get it faster? 

We are currently seeking treatment at the West Clinic in Memphis, but honestly, the more I think about how few resources they gave us, I would like to move on. It looks like MD Anderson offers many trials for melanoma. Does anyone else have thoughts of where we should look in our area? I feel limited in my ability to research since I have no test results to research and I know the genetic testing is so important. I also worry that they are only testing for BRAF, not other mutations, and will we have to wait weeks for that??

I really appreciate any help that can be offered. This site has been extremely helpful, and has offered us hope when Dad's physician did not. Thank you all so much for that.


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Anonymous's picture
Replies 12
Last reply 4/2/2014 - 12:35pm
Replies by: Anonymous, sweetaugust, Gene_S, Brent Morris, POW

Hi, all-

My mom was diagnosed with stage 3 melanoma mid-February when she was in for something unrelated. She had "superficial" bladder cancer with a 1% reoccurrence rate and they found a 5mm mass in her lower abdomen. Turns out it was a cluster of nodes gone crazy and it needed to be removed immediately. 5 years ago she had a small piece of melanoma that was removed from her skin with clear margains. They did did a due test and removed her sentinel node and found that the melanoma had not entered her nodes. Well, they were wrong. There is apparently a 1-2% error rate in that test, and after they removed it the melanoma decided to go to the next node where it made its home for 5 years. 

Fast forward. They removed both clusters of nodes (18 in total), and 7 of them had cancer in them. It was wrapped around an artery. The nodes were stuck to lining of her stomach (from the outside), and they also found a small lining of cancer near her ovary on the other side, as well as two small masses on that side. The PET scan (a so-called 97-98% accurate) didn't show this.

All VISIBLE cancer has been removed. Because it travelled beyond the nodes she qualifies for ipi, which she starts this coming Friday. She has also completely changed her diet...raw foods, heavy alkaline producing foods --she's a champ!

We have taken the news of no visible cancer as a positive one, as well as the ipi treatment. But since my mom is asking not to know any details from doctor, we are kind of in the dark on where everything stands. She's asked the doctor to provide her only with positive, so at her last appointment he said that people - some - are being cured by ipi, and that technically she doesn't have any in her (other than do they know this?).


Also I'm a bit scared because she has a sporadic light cough over the past year or so. Perhaps the PET scan also didn't show that? Are there other tests that are more accurate??

I guess I'm just wondering what all of this means. Like, it seems like good news...but is it? 

Thanks :/

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Anonymous's picture
Replies 1
Last reply 3/30/2014 - 1:58pm
Replies by: Bubbles

Several months ago I was reading very enthusiastic reports about the Genentech drug attacking PD-L1 expressive tumors which were not rare situations.

I have not heard anything lately, and my oncologist did not even mention that route when discussing possible avenues for my mucosal melanom Braf wild type cancer - I have been in remission for more than a year so it is not a decision that needs to be made now.

Has anyone been following these studies - I have a feeling that the results have not been as encouraging as had been hoped but I can't find anything on the web that confirms this.




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Anonymous's picture
Replies 2
Last reply 3/30/2014 - 12:51pm
Replies by: Anonymous, mejiaufv
Jwfd808's picture
Replies 2
Last reply 3/31/2014 - 1:34pm
Replies by: Jwfd808, hbecker

Who would have thought I be spending $300 - $400 a month on bandages.  I have a pretty good site now just did not know maybe there is something out there cheaper. Now I use Vitaitly Medical 

I live every day one at a time and thing are what they are

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geminilady30's picture
Replies 1
Last reply 3/29/2014 - 10:00pm
Replies by: Jwfd808

This is the first time I have used a forum like this so I hope ive done this right.

Im curious what the statistics are of melanoma recurring in the same spot

Stage 1 melanoma was excised and skin grafted in 2010. I know have a colourless mole the size of the eraser of a pencil on the inside edge of the scar. It itches, its raised, a little darker than the scar it sits on.

Looking for anyone with experience/knowledge with this.

I am booked with my family doc 4 days from now.


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soccerchick's picture
Replies 6
Last reply 4/1/2014 - 12:59pm

I posted about a month ago about my fight against this crappy cancer, I had just started the trial for the combo braf and Mek inhibitor trial shoot but can't remember drug company, I have had my lymph nodes removed under arm pit , il2, Ipi radiation and chemo with venafurenib oh and a trial vaccine to start with. Anyway more new moles keep popping up the latest about 2 weeks ago and the tumor on my breast is growing again, it won.t go away, dang it. So Monday I have to have my boob removed with my tumor and spots and hardened skin that has been causing a lot of pain. Hopefully this will do the trick cause my optionsare getting to be slim Pickens. I will have my tumor cells tilled in case I need to have a transplant later. I am so blessedthat in my 2 + years of treatment that my cancer has not spread beyond my breast! original tiumor was on my upper back. I am going to beat this sucker!!!! I have the best support group of family and friends. Wish me luck and prayers,

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My sister has Metastatic Melanoma diagnosed in November 2013 ~ she had numerous tumors / nodules all over her torso, spine, pelvic and ribs. She began taking Zelboraf the end of November and had great success for a few months. Four weeks ago she started finding knots re-appearing on her back and sides. Her oncologist did confirm that the Zelboraf has ran its run and is no longer as effective as hoped (5 1/2 months). He has now started her on the new approved combined drugs of Mekinist & Tafinlar (started today!) I was wondering if anyone has been through this process of taking the combined drug after taking Zelboraf and if so what are the thoughts of the success of this combination. I know it is newly approved and neither drug has been out of clinical trials very long ~ but we are just curious as to what we should expect. Her doctor told her at the "worse" prognosis would be weeks to a couple of months - "best" at a couple of years ~ but his thought of an "average" for her prognosis would be 6-9 months. Thank you for anyone that may have thoughts or experiences to share with this new chemotherapy!!!!! God Bless! 

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Ashley's picture
Replies 3
Last reply 3/29/2014 - 1:06pm
Replies by: Ashley, Gene_S, dvd

Hi Everyone,

My dad just started yervoy last week and last night had a crazy coughing attack.  He has lung mets but has not had any symptoms from the lungs before now.  Has anyone on Yervoy experienced this?  I'm hoping it's the drug working and causing a reaction and killing the mets!  Any thoughts?  I know probably too soon but I'm hoping!



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Anonymous's picture
Replies 12
Last reply 3/31/2014 - 5:11pm

Am newely diagnosed stage 4 with mets in my liver stomach and brain. Been reading all the statistics about the new Treatment like ipi avaliable to us and how they only appear to last for a few months. Now feeling that lost hope cos long term survival looks unlikely. Why can't better drugs be found that will last years?

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I am now six weeks out and healed from surgery, FEELING FINE! Clear PET/CT and MRI. I agreed to be reviewed for the Ipi vs. Interferon trial and got randomized into the 3 mg Ipi arm. I begin next week.

We are very happy to finally be moving forward with treatment, and relieved that I will be getting Ipi, but not too much ;-)

Of course, cue the worrying about side effects.

I've heard the first infusion generally goes well and that it is infusion #2 that triggers effects, if any. I just want to get started, and get this over with. Again, I shake my head that I FEEL FINE and now have to 'willingly' enter into something that will likely make me feel not that can hopefully feel fine for a lot longer.

Terra, Stage IIIB

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