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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Nanners10's picture
Replies 2
Last reply 9/19/2016 - 2:22pm

Hi all,

I haven't posted in a while (but I read and follow daily) but am here again seeking thoughts, comments and similar stories.

Brief history:

WLE 2002, progression to groin lymph nodes 2014. Started (Apr 2014) and completed ipi vs interferon trial Apr 2015 (including four maintenance doses), local progression (groin lymph  node) again in Nov 2015. Currently on interferon (no judgement please).

There have been two nodules in my lungs since the first CT scan I had when I recurred in 2014. These nodules started at 7 and 8 mm repectively.  One of them grew to 1.2 cm in Dec 2014. Went in for biopsy to find out that it had shrunk down to its previous size so biopsy was cancelled. Nodules remain relatively stable in size until August 2016. Only one increased in size again (same one) but to approx. 1.4. MRI done the following week and size is measured at 1.2 cm. My doc is now ordering a pet scan since he feels the position of these nodules and their size make them difficult to biopsy. I did have a pet scan in Feb 2016 that noted the nodule at 9mm but not increased FDG uptake. 

Onc says that the radiologist feels they are growing and maybe they had reacted to the ipi when I was first given it but now they are getting bigger (which I don't believe is necessarily true in general but true for the most recent scan). Onc says if pet scan is negative he will have to consult with a lung specialist to see about figuring out what they are and/or having them removed.

Has anyone experienced anything similar or have any thoughts on this? Another thing to add into the mix is that whenever my CT scan is around my menstrual cycle these nodules seem to be affected, crazy hormonal changes maybe?

Thanks in advance for your thoughts.


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sleepyt23's picture
Replies 6
Last reply 9/22/2016 - 6:25pm
Replies by: slh4448, youngann, Aaron, MoiraM

Hi all,


I was supposed to have my second infusion of 10mg Yervoy this past Friday, but ended up having an infusion reaction about 9-minutes into the session. I started to feel very flushed and had a difficult time breathing. Oddly enough, I didn't have any reaction to the first infusion 3-weeks ago.


Nursing staff stopped the infusion, gave me benadryl, hydrocortisone, oxygen, zantac, and started a saline drip in lieu of the Yervoy.


I fell asleep in the chair for about 30-minutes and felt better, then left and went back to work. The on-call doc (mine was out of office) didn't really say anything but said I would be following up with my doc on what the next step would be. 


Has anyone had this happen before? 

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Joycem's picture
Replies 1
Last reply 9/19/2016 - 1:11pm
Replies by: Julie in SoCal

Not new info to the experts on here, but was a nice clear introduction to the topic I thought. Australian Dr., but info is pretty general regardless of locale. 


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Beth606's picture
Replies 10
Last reply 9/20/2016 - 12:19pm

I'm looking for some reassurance or information. I had a thin melanoma removed from my left calf in March of this year. Stage 1a, 0.40, mitotic >1...all the things you want it to be other than Stage 0. Fast forward to the past month. I have had typical drainage from mild seasonal allergies, my ears have a lot of pressure, but then last week I noticed my lymph nodes under my chin are enlarged. i went to my GP who gave me an antibiotic in case it is a bacterial infection. I started the antibiotic on Friday, nodes still swollen. They are soft and movable.

It just so happens my regular 3 month follow up is in a few days, so hopefully I will get more info then. I'm just

I don't know if I'm totally overreacting? At my staging should I logically assume this is a viral or bacterial infection? I hope I'm just concerned for no reason.



Beth Johnson 

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Amanda's picture
Replies 3
Last reply 9/20/2016 - 5:20am
Replies by: Amanda, Bubbles, Jubes

So my boyfriend randy was on clinical trial of now approved keytruda for 3 1/2 years before having progression of two new tumors in his thighs. We signed consent and are doing scans and blood work tomorrow in anticipation for starting a new trial combining the keytruda with an agent called sd-101 by dynavex where the agent is injected directly into one tumor one a week for the first 3 weeks followed by the keytruda and injection together every 3 weeks. Hopefully the sd-101 will introduce more killer cells to attack the tumors. This is done at ucla by Dr. Ribas and I'll keep you all posted on results.

Anyone here had experience or heard of the dynavex sd-101 combined with keytruda?

Best wishes. Amanda.

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keepthefaith11's picture
Replies 11
Last reply 9/22/2016 - 1:35pm
Replies by: keepthefaith11, Lucky242, Anonymous, BrianP, jennunicorn

Hi everyone, well, things are not going too well here with my dad. He was doing fantastic and all ready to start Opdivo last Friday. But last Monday he ended up in the hospital with another seizure. He had not had one for over 2 months and things seemed really good. Brain scan showed stable and some regression of the tumors. Doctors where pleased with results from the radiation so far.

Then this. He's in the hospital and it's now been a week since the seizure and his speech is still really poor. He has a hard time using his right hand as well. I am so worried that he now has permanent damage from seizures. Can this happen?

Then he started developing a fever. Very mild and it comes and goes through the day. They did a chest x-ray, check his blood work, and took cultures. That has not come back with results yet but everything else was perfectly normal. Of course, now he has not been able to start treatment because of the fever. It just seems like things are not cooperating at all. What could this fever be from if it's not infection? I have read about tumor inducing fevers. But I don't think it is from them growing since they were not. I also read about something called neoplastic fevers. Do to necrosis. Anybody know anything about this?

I am extremely worried about his mental state after the seizure. After the last one in July he also had speech issues, but it did not last as long I think.

Thank you to anybody who can respond to this. I am extremely concerned!


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Anonymous's picture
Replies 7
Last reply 9/21/2016 - 4:10pm
Replies by: Mawmaw2017, jennunicorn, Anonymous, Ed Williams

I went in this past week because I had a mole that was bothering me. It has been itching for the past 2-3 months. At first just intermittently and then constantly. I had my husband look at it because I told him it felt larger. I can't see it as it is on the back of my neck. He said it looked inflamed around the base of the mole and looked like it was growing a blister on top but didn't look like it was filled with fluid. I went to my doctor and he told me I needed to see the dermatologist. The first available was a month and a half wait. The itching got to be really bad so I called and asked to be seen sooner. I went in on Wednesday last week. The dermatologist said the mole needed removed because it did not look right and that it did look like a blister on top but that it was firm. She used a punch to remove it and now I have 3 stitched where the mole used to be. They took pictures and measured it but didn't say anything to me other than to come get the stitches out in two weeks. How long does it take to get a biopsy back?  Is there anything other than melanoma that can cause itching in an existing mole. I am very nervous. If it is melanoma is itching considered an initial or later symptom ? Thanks in advance.

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Jubes's picture
Replies 3
Last reply 9/17/2016 - 8:10pm
Replies by: Bubbles, Jubes, jamieth29

Just asking for a friend who had a Mel removed a year ago and now has multiple brain and lung mets. He has had radiation and now having laser knife surgery  

he's in Vienna and I'm sure he must be getting the best advice but how long after the brain surgery can you start immunotherapy?

i am anxious that he should start asap


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Anonymous's picture
Replies 6
Last reply 9/19/2016 - 3:42pm
Replies by: sleepyt23, Anonymous, jamieth29, Ed Williams

I had a slnb then a clnd in nov 2015. I got really sick recently with a bad cold. Sore throat slight fever but now all i have is the congestion with a cough. Wed i noticed a red slightly raised bump 3mm red in color.(painless) What do intransit melanoma looks like. All the melanoma intransit pics look nothing like this tiny red bump. All look black and scattered.Can anyone tell me what intransits look like. Im just praying its a pimple or boil from the bad cold i had. God bless all of you brave people fighting the fight everyday. Anon
btw the mark is above the skin by my clnd

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Hi all, 

I had a shave biopsy done this done this week at the dermatologist. It was for a mole in the middle of my back that I had honestly never noticed before.  I have never had a biopsy done before and I have been absolutely terrified waiting for the results.  I've had trouble eating and sleeping because I have been so nervous.  Last year, my mom had stage 1 melanoma, and made a complete recovery after surgery.  However, I'm scared that this mole could actually be stage 3 or 4 cancer because I have no idea how long the mole has been there.  I've attached a picture the mole that was taken about 3 weeks before the biopsy.  Ignore the redness on my back, that was from an allergic reaction.  How bad does this mole look?  I am so scared.  From what I've read on the internet, stage 4 has no symptoms, so I'm wondering if I may have had it. Thoughts anyone? Am I crazy?

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Anonymous's picture
Replies 4
Last reply 9/18/2016 - 2:31am
Replies by: Anonymous, Patrisa, MoiraM

Let me preface this conversation with the acknowledgement that I am likely letting the melanoma anxiety beast get the best of me. But I am worried and if you honestly think I'm being a nut ball please, PLEASE tell me.

I was diagnosed with SMM in july- stage 1a. Shortly after my WLE I started feeling a crackling in my chest and mild cough but assumed it was just me being anxious. It continued but very mild and seemed to be getting better- so I ignored it.

This week I developed pain with swallowing- sharp, sub sternal and the feeling in my chest is coming back intermittently. I know the most likely explanation is gerd/heartburn but it really is mostly when I'm swallowing. I made an appointment to see my pcp next week if it's not improving on prilosec.

The issue is that I really don't want a pet scan, endoscopy, biopsy etc. From what I've read my symptoms are close to those of esophageal cancer but melanoma, let alone early stage melanoma, rarely metastasizes to the esophagus.

Since you all have been around this site a lot longer than I have I was wondering if anyone on hear has heard of mets to the esophagus? I know primary esophageal melanoma happens but a met seems super unlikely, right?.... right?

Thank you!


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Patina's picture
Replies 3
Last reply 9/18/2016 - 9:14pm

I read the post from Rob and Adriana about recent developments and noticed that no one had responded to them. Can anyone help them out? They need help.

Can anyone provide them with ideas on where to go for help with travel, finances and maybe a second opinion or larger hospital? - They are in Washington State and she has been diagnosed with Leptomeningeal Carcinomatosis.

I think some help can be received from:

     American Cancer Society

     Angel Flights

I found a possible trial:

     Iodine I 131 Monoclonal Antibody 3F8 in Treating Patients With Central Nervous System Cancer or Leptomeningeal Cancer

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FishermanCoop's picture
Replies 1
Last reply 9/16/2016 - 3:41pm
Replies by: debwray

Hello I had a spot removed off of my right shoulder. It was non symmetrical and a 2cmx1cm area.



NOTE: This lesion is likely compatible with junctional melanocytic proliferation with severe atypia. While not fully diagnostic, some features of melanoma are present. An early evolving melanoma,therefore, cannot be ruled out.


A proliferation of severely atypical melanocytes is noted at the dermal-epidermal junction. There are nests of different sizes and shapes and single cells noted. confluence of juctional melanocytes is seen. The lesion lacks overall symmetry. Dermal fibrosis is present. Solar elastosis is marked. Mart 1 stain with adequate controls in highlights the atypical melanocytes.

 I was asked to return to the dermatologist and she did a WLE and removed all tissue down to the muscle and sent that to the pathologist. waiting for the second report now. My dermatologist said "we cant say it isnt melanoma so we are treating it like it is."

I feel like I am a little bit pregnant. Thanks for any help.


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jmatchock's picture
Replies 7
Last reply 9/16/2016 - 1:08pm

My dad is his 3rd week of the high dose interferon.  He doesn't want to continue and quite frankly, either do I.  He is suppose to start the low dose interferon self injections next.  He is in a high state of confusion.  He has not clue what is going on.  He doesn't eat and has a hard time sleeping. 

I know everyone reacts different but does anyone have any advice.  I hate seeing him like that.  He is by himself and I go to his place everyday to help him out.


Thanks in advance.

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MoiraM's picture
Replies 5
Last reply 9/16/2016 - 4:19pm

I had my scan results a week ago - still NED so I am now one-third of the way to that three year milestone.

I went to see my endcronologist today. (My anterior pituitary gland stopped working on ipi and no one thinks it will recover.)

I have been trying to get my cortisol replacement dose right for a year now. The 'textbook' replacement dose was too low and my requirement each day varies, even though this is not 'meant' to happen.

Great news, my consultant has approved what I have been doing - 8 mg prednisolone a day and a 'quarter-up' (e.g. 10 mg) rather than 8 mg on bad days, when I have headaches, muscle pains and feel 'wobbly'.

Also I have followed up on another clue from someone else and investigated my replacement thyroxine dose. My tests put me in the middle of the acceptable range (my T4 was ~14 pmol/L). He suggested pushing it up to nearer the top of the range. I am now on 75mcg levothyroxine one day and 100 mcg the next, my T4 is ~16 pmol/Land I am less tired. Hopefully the two are connected because I can probably go to 100 mcg everyday, aiming at a T4 of ~18pmol/L, which may mean more staying power.

At this rate I will be able to keep my job!

Thanks to everyone on here who were supported when I posted about struggling with being chronically ill. It helped me get my head in the right place for my consultation.

Stage 3C Ipi/Yervoy [3mg/kg] responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy

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