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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youngann's picture
Replies 9
Last reply 3/3/2017 - 1:28pm

I was diagnosed stage 3 in May 2016 and had a brain MRI before my CLND. When I went to see my onc last week, I asked if I should have a repeat MRI and she said that she doesn't recommend them unless a patient is showing symptoms.

After thinking about it, I wondered if it wouldn't be better to have them regularly before there are any symptoms...what are your thoughts on this? Are brain MRIs normally recommended on a regular basis for stage 3, or is it normal to wait until symptoms appear?

I have been having regular chest, abdomen & pelvis CT scans.



Home of the original "Crappy Shirt"

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45_dps's picture
Replies 2
Last reply 3/2/2017 - 12:15pm
Replies by: miaka618, Anonymous


I just wanted to ask if anyone else can share their recovery experience after a complete lymph node dissection of a full side of their neck?

It has been a little over 2 weeks since mine (44 lymph nodes, some skeletal muscle, and a plum-sized submandibular gland). I start physical therapy tomorrow for my left shoulder and neck. I will also start seeing a speech therapist but that hasn't been setup yet (probably next week).

Here is my big question: The left side of my tongue is limp (when I curl my tongue only the right side curls, my tongue can touch my back teeth on the right side but only as far back as the canine tooth on my left side). Also, my left lower lip is limp but this is very subtle because the middle and edge of the lip are responding normally. Are these effects temporary?

Reading about nerve issues regarding the tongue it sounds like nerves do heal themselves quite well. So hopefully it is just a matter of giving my tongue and lip some more time to heal.

But any advice of nerve healing and/or physical therapy exercises for the neck would be greatly appreciated.

I start on Ipi in a week, so in many ways the nerve healing and physical therapy are good for me to focus on instead of worrying too much regarding Ipi.


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daughter1's picture
Replies 21
Last reply 3/2/2017 - 11:40am

I am in total shock and panic.  My amazing mother was diagnosed with melanoma yesterday.  She had pain in her side and we thought it was gall bladder.  They found a 4 cm lesion, the biospy originally came back benign.  We then went to Sloan to find that it is indeed melanoma.  

Monday she starts her Opdivo/Yervoy but I am so scared.  Am I reading correctly that the prognosis is still bad even with immumotherapy. 


She is my whole like and I can't believe this.  Any hopeful stories will be helpful.   They found nothing anywhere else.  A tiny pin in her brain that the doctor wasn't concerned with a a calcification that has been in her lung for years.  

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AB's picture
Replies 14
Last reply 3/2/2017 - 1:13am

Anyone feel their doctor is interested in them versus just what they can write about the success and or failure they have had with Patient X? I need a doctor that will give me an idea of my real options, side effects and estimated timeline for the mets to spread to my brain, chest, abdomen & pelvis. Thanks again

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Anonymous's picture
Replies 13
Last reply 3/2/2017 - 1:04am

Is it really caused by Sun exposure? I don't think so. There are many many people enjoying each day in their life soaking up the sun, tanning, not applying sunscreen and never get melanoma, while others never do these stuff and it happens to them in a young age. I just don't know what really causes this disease! It's unfair.I hate it.
Sorry but I'm very disappointed and just want to say it.

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BrianP's picture
Replies 16
Last reply 3/1/2017 - 10:53pm

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rabbits68's picture
Replies 12
Last reply 3/1/2017 - 4:48pm

I have progressed on Keytruda and my doctor wants to start the chemo drug Abraxene. I am not sure if this is the next step I should take. At this point I am considering going to either MD Anderson or Sloan Kettering. Does anyone know how I go about getting a consult or having someone look at my records. Short history: failed Yervoy, failed Mek combo and now failed Keytruda. Does chemo seem like the next logical step? Any advise is appreciated. I am feeling unsure and scared. Thank you


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BrianP's picture
Replies 2
Last reply 3/1/2017 - 4:00pm
Replies by: Scooby123, jahendry12

Pretty good wrap up of the different trials from the last few years.

A couple takeaways:

If you are a complete responder to Anti-PD1 the data supports that you can stop treatment (according to author).

PDL-1 + MEK/BRAF is kicking some but in initial trial for Braf Pos folks.

Pembro + IDO inhibitor has some nice results as well as PD-1 +T-VEC


Lots to absorb in this article.  Going to take a couple reads to take it all in.


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Aloha14's picture
Replies 2
Last reply 3/1/2017 - 2:54pm
Replies by: Aloha14, debwray

I had 2 groin lymph nodes removed in Dec 2016, which then formed 3 seromas, one very large and two small ones. The surgeon said these would drain on their own and possibly seep out of the incision~neither happened. After a month the surgeon drained the largest seroma twice and it returned just as large. Waited another few weeks and had radiology drain all three seromas and they returned but much smaller.The surgeon said to return in 6 weeks to have the seromas drained one last time.

Meanwhile, after two weeks and while I was on vacation last week I became ill with the chills, blacked out while trying to get back into bed, got injured from the fall,and went to the ER. I let the ER DR know that I noticed some sort of rash over the seromas. An ultrasound was done and determined that I had skin cellulitis but that the seroma fluid was not infected. Given IV antibiotics, pill antibiotics,  and, labs, xrays, etc., and sent back to the hotel. Within the next 2 days the skin infection took off and I had a huge infected seroma over the incision area. Flew home and to the surgeon just in time before it burst and had it excised. A channel was cut into my leg to drain the fluid, and now the wound is healing from the inside out. Packing the wound daily. Well, the seromas are gone (was checked today, no fluid in my leg), will take another week  of packing the wound before it closes up. I know this isn't how it's supposed to go. 

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BrianP's picture
Replies 1
Last reply 2/28/2017 - 10:56pm
Replies by: Bubbles

Interesting article on some research Dr. Luke is doing.  Thought Celeste, Ed and some others might find it interesting.

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AB's picture
Replies 10
Last reply 2/28/2017 - 9:16pm
Replies by: tschmith, JohnA, AB, Mark_DC, BrianP

Help! I used to exercise 2.5 hrs a day, now can't get out of bed most days and 30 min cycle puts me back in bed for several hours. I'm exhausted and my head constantly hurts. Any suggestions? My 14 yo twin boys are scared to be alone with me. 

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Anonymous's picture
Replies 5
Last reply 2/28/2017 - 8:54pm
Replies by: BillMFl, Anonymous, UBContributor

I am sorry if this is not the proper place to post this.  But I am really concerned.  I have a family history on my mothers side of Melanoma.  I also have genetic markers for Melanoma.  I do not have a diagnosis for Melanoma.  But... 

I had/have several areas that have changed and or are itching.  So I went to a Dermatologist.  He was very concerned over 4 of them but decided to biopsy 2 of them and wait for those results.  No problem.  

He performed 2 shave biopsies.  One on my back that was the most concerning to him and one on my leg.  I waited the 24 hours to remove the bandages and noticed a very dark center of remaining pigment in the one on my back.  I researched the internet as the office was closed for the weekend at the time.  Of course your mind takes you where you do not want to go.  I found myself on this site reading many stories and hoping I would have a non-melanoma story to tell.

The biopsy came back non cancer on both.  The leg one is classic benign mole. But the one on my back is a little different.  Don't get me wrong,  I am relieved but not unconcerned because in my mind, there is a portion that was not removed.  

Compound Melanocytic Nevus
Shave biopsy of skin showing an undulating epidermis. Occasional nests of melanocytes are noted along the dermal/epidermal junction absent of atypia. Nests of interstitial nevomelanocytes are noted in the underlying dermis, absent of cytologic and nuclear atypia.  

So, I went for a follow up with my dr. today.  I showed him all my pictures.  He claims he always gets all of it and that he would never leave any portion of it behind so it is impossible that this is pigment.  I asked him detailed questions.  He did get a little defensive and his response was that it was a little scab or blood.  It is absolutely not. I confirmed that he did not use silver nitrate. He said that he reviewed the slides and that they were perfect as a normal mole.  He said that there was nothing anywhere but where the lesion was located which matches  the pathology report on my leg.   (He also now says the other 2 are fine. He was worried about all 4 last time.)

This is where I lost all faith and confidence in what he said.  I believe he was referring to the leg slides if he even looked at any.  Nice enough guy, don't get me wrong.

My most important questions were;  
If this pigment remains, can it become a melanoma?  
If it becomes melanoma, how will I know?
If you didn't remove all of it, how do we know that it is normal throughout?

I do not want cancer.  But I do not want to be one that comes back a year from now and they say, oops, either. I don't want to have something left behind that could become melanoma either.  I have a family history of melanoma and I have genetic markers for increased risks as well. So this is in the back of my mind.  I have found that Dr.'s who claim they "Never" or "Always" do something are frequently wrong and unable to admit it.

So, what do I do?  
Do I accept that this is not a concern and let it go until I have reason to believe otherwise?  
Or do I seek another opinion?  
Do I push for further biopsy of the remaining pigment from another dr?

Pre biopsy


72 hrs

1 week


For Reference the was my leg biopsy site. So I know the difference between blood/clot and pigment.

Any advice would be greatly appreciated. 


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barb3246's picture
Replies 1
Last reply 2/28/2017 - 8:19pm
Replies by: BillMFl

My background: I have had 2 MM in-situs, 4 severes and lots of mild/moderate atypia. Last week I noticed a tiny (1mm) spot on my upper breast that I never noticed before. It just looked like a dark brown dot, but when I looked at it using a magnifying glass I saw a black line running through it and several black dots on the edges. I'm not sure why it even caught my attention and made me want to inspect it closer. It really didn't look suspicious until I looked at it thru the magnifying glass. None of my other moles look like this one when magnified.

I called the derm office yesterday, and they told me I could come right in and have it checked. Well I went in and the derm said that it did indeed have black in it when he looked thru the dermoscope and he did a punch biopsy.  Now I am freaking out thinking the worst. Does the tiny size of the spot make a difference? Is there anything else it could be or are all moles/spots with black in them melanoma?

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Anonymous's picture
Replies 5
Last reply 2/28/2017 - 8:04pm
Replies by: BillMFl, jennunicorn, Anonymous, mrsaxde

I'm obsessing with a mole on my lower leg that it might be a nodular melanoma. It's very dark but small. I saw it back in September and actually didn't change in size, shape or apperance since then. My question is could it be a nodular melanoma even if it's stable and didn't change in the last six months?? Is the biospy necessary?

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