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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Fressia's picture
Replies 1
Last reply 10/25/2016 - 1:15pm
Replies by: Treadlightly

Hi Everyone, 

I had my post-surgery follow up today. I was diagnosed via shave biopsy which initially revealed the depth to be at least .67 mm with a mitosis rate of 3/mm2, non ulcerated, and lymph/vascular involvement not identified.

Wide Excision revealed:

-maximum tumor thickness to be 2.15mm (invades recticular dermis)

-macroscopic satellite nodules not identified

-ulceration not identified 

-regression not identified 


-Peripheral Margins: uninvolved by invasive melanoma distance of invasive melanoma from closest peripheral margin: 8mm

-Deep Margin: uninvolved by invasive melanoma distance of invasive melanoma from closest deep margin: 16mm 

-mitotic index: 2/mm2

-lymph/vascular involvement: not identified

-perineural invasion: not identified 

-tumor infiltrating lymphocytes:present, brisk. 

-tumor regression: not identified 

2 lymph nodes were removed and those revealed no metastasis..... fantastic news but why do I feel worried and scared?? 

Based on the overall results I am Stage IIa

I am very alamared by the depth melanoma based on the WLE...... I know the depth of the shave and wide excision cannot be combined, so what does this mean? The uncertainty bothers me. 

Secondly, what's next? My surgical onocologist said it would most likely be monitoring and follow ups with derm but that he would consult with the tumor board and see if any additional therapies are warranted. I asked about routine CT/PET scans and he said these are only needed if there are symptoms.... is this true?? I  feel like it would be best to schedule them routinely along with the derm follow ups. 

For those of you who are or have been Stage IIa.... what's next now? Monthly skin checks, follow ups with derm, follow ups with primary....? I just want to make sure I'm not missing anything. Thank you for taking the time to read this post! I've learned so much about melanoma through this website and I am very thankful to have the this as a resource especially during this roller coaster 


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Jubes's picture
Replies 35
Last reply 10/29/2016 - 4:52pm

Diagnosed stage 4 June 2014, pembro 9 months shrinkage of lung met from 8 cm to 11mm stable Jan-April now 16 mm and more active on SUV 

I've been waiting for the results of this last pet scan to update. And the news was disappointing. After 6 months my lung met has grown from 11mm to 16 mm and SUV gone from 3.2 to 7.4. I know this is tiny compared to what many of you are going through but so disappointing as its the first growth since my tumour shrinkage on Pembro. 

I had to stop after 9 months (last year August) due to auto immune reactions and have co incidentally been on infiximab this last  6 months for the side effects

the doctors are discussing in an interdisciplinary meeting on Friday but just wondering what you all would choose given these options

1. Back on pembro /with/without stopping infliximab

2. Radio surgery

3. Garden variety radio

4. Big surgery

5. Wait and see

6. There are apparently some clinical trial pills that I don't qualify for due to my immune response but they may be coming generally available soon

thanks for any thoughts



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JoshF's picture
Replies 11
Last reply 10/25/2016 - 9:49pm

Hi all! I posted a question regarding responses for people who had sub-q's. The responses I received were great. One of the key takeaways for me was people noticed tenderness/soreness in and around the sub-q. So a few questions....

How long did soreness/tenderness last?

How long until you noticed it shrinking? Days...weeks?

For those that had multiple sub-q's...did this happen one by one or was it something that happened simultaneously in all tumors?

Reason I ask is that I have roughly a 2-3CM tumor in my shoulder (deltoid). That thing started getting really sore and hard Thursday nightish. It stayed that way until today. It's still firm and tender but not as bad. Can't really say it shrunk yet which is why I ask. I'm cautiously optimistic and know responses vary...rapid to over time. If this is in fact inflammatory immune response, I don't know what to expect as I have no experience. I'm praying this sucker is being broken down as I write this. I appreciate anyone who can share. I found it encouraging that people said they experienced this and the it happened to me but I'm tempering expectations. Thanks.... Be well!


Let's work for better treatments....for a cure!!!!

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Hukill's picture
Replies 6
Last reply 10/25/2016 - 10:24am

I got the results of my 14 week scan on ipi/nivo combo. I had 7 mets between both lungs. 5 are gone or to small to show on the scan and the other 2 are down to 2.5mm and 2mm. I will continue on my current treatment plan. I've had a very dry mouth for about 5 weeks now, dr gace me a prescription for artifical saliva but doesn't seem to help.

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jennunicorn's picture
Replies 32
Last reply 10/24/2016 - 6:25pm

Hey everyone, so I got a letter from my insurance company, Blue Shield, that they are denying approval for the Ipi/Nivo combo. Their reasoning is that because I did Ipi and my "disease has worsened" that they will not re-approve the same drug. Then they have the nerve to say "Opdivo is not covered in patients that have recieved treatment with this medication (Ipi) because it works in a similar way to treat cancer"! Excuse me?! I would love to strangle the "physician advisor" that works for Blue Shield right now! Are they complete morons?

I have already emailed my oncologist's office and will follow up with a phone call tomorrow. I can't imagine this is the first time this has come up. Has anyone dealt with something similar here? It says either myself or my doctor can file a greivance if we don't agree with their decision and they'll have an answer back within 30 days... %@!$ YOU!

Sorry for the angsty post... just got back from a really nice week away with friends and this was the last thing I wanted to come home to.

Jenn -  IIIC - currently doing Ipi/Nivo (Yervoy/Opdivo) 

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Sebastian's picture
Replies 5
Last reply 10/24/2016 - 9:42am

Can anyone tell me something about this treatment? 4 days ago I get first dose of treatment. I have 25 lumps under my skin. Few are very big. Looks like stones under my skin. For now I don't have any side effects. Can anyone had same situation? How fast this treatment working, if will be working? How lumps disappear? How the lumps are changing?
Please, let me know if You had similar story...


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SOLE's picture
Replies 3
Last reply 10/23/2016 - 9:11am
Replies by: SOLE, Janner

On the topic of residual melanoma, what conclusions can be drawn from the WLE?

My original Breslow was: 2.85mm but no clear deep margins.

On the WLE 7 weeks later: 1.47mm. The wound had obviouly healed.

Am I to understand that the two measurements are related? How so?

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I thought I'd share this article for everyone out there receiving Keytruda.

Wishing everyone a happy and healthy weekend. 



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SOLE's picture
Replies 11
Last reply 10/25/2016 - 1:53pm

In Canada, we are unfortunately behind what the FDA approves and thus I am faced with impossible choices in my view. As a reminder I am Stage 3b with "rare isolated cells" found in one node.

1) Interferon

2) CLND and access to 2 clinical trials: interferon-pembro or placebo-nivo (I think...)

3) Watch and wait

Am looking for your wisdom please.


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cestlaviemle's picture
Replies 5
Last reply 10/25/2016 - 9:21pm


Thank you for taking the time to read my post. 

In early June I went to a doctor for a follow up on a broken foot. While there, I asked if she would take a look at a mole on my lower back that felt like it was growing and seemed to be getting a bit irritated. She said she thought it was likely benign but because it fit all the ABCDEs and I have a family history of melanoma, she thought we should remove it. She performed a shave biopsy and it came back completely benign. I have posted the pathology report in case it's helpful at all.


CLINICAL HISTORY: Benign skin lesion/atypical nevus vs dysplastic nevus

Melanocytic Nevus, Intradermal Type (D22.5)
Note: This nevus is irritated. Nevus extends to the deep margin of the
specimen but there is no evidence of malignancy.


MICROSCOPIC: A) There are nests of typical nevus cells within the dermis.

There is focal parakeratosis.


At the beginning of October, I was establishing care with a new primary and getting a check up. She noted that I have a lot of moles on my back and then I pointed out the spot of the biopsy. Immediately she stated that it needed to come off. She could tell I was surprised and I made sure to tell her the report was completely normal. She checked my chart and agreed it sounded like nothing but reiterated if it was on her or one of her kids, she'd have it taken off with a punch biopsy this time.

I am conflicted here because the same day of that appointment, my husband was laid off and the cost of another biopsy seems like a lot right now. I'm not one to go against a doctor's recommendation, but from the little I have found on this topic it seems pretty unlikely that a) the first biopsy was wrong or b) something new that is cancerous or precancerous has grown in the scar in such a short period of time. 

I couldn't figure out how to post a picture here, so I made my profile picture a pic of the current scar tissue with new pigmentation. It sounds like it's very normal for a scar from a shave biopsy to regrow a mole, I just can't find anything on if the specific way mine is coming back looks especially concerning. 

I would so appreciate any thoughts or guidance! 





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snow white's picture
Replies 3
Last reply 10/23/2016 - 8:10pm
Replies by: CindyCo, snow white, debwray

Just checking in on you Deb, I haven't seen as much of you on here and wanted you to know I was thinking about you :)


Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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Jango's picture
Replies 3
Last reply 10/22/2016 - 12:52pm

Hi all, I really need your help and advice. Sorry for the long story.

I posted recently as my dad was hospitalized due to extreme fatigue and lack of appetite. They did a ct scan of his abdomen and found a mass as well as spots both in the abdomen  and a few on the outside of the lungs. They tried one biopsy and were not successful. He was admitted to a hospital that does not have any cancer care, but his doctors who specialize in internal medicine assumed that it was a reoccurrence of melanoma, because my dad had stage 1 melanoma three years ago. We were able to get an appointment with an oncologist and he saw my dad at his absolute weakest. He was weak, but he was also a bit out of it because of a residual effect of sleeping medication. He said he could not treat anybody that was so weak and that he needed a biopsy to even confirm cancer. He was a melanoma specialist but said that it was only a fifty percent chance it was melanoma and that other cancers could present in the same way. So this report was given to the other doctors , not oncologists who basically wanted to send my dad to palliative care before even giving a diagnosis !!!! I insisted that the do a biopsy and they also want to do a brain mri to see if it has spread there. They are stalling on it now, feeling it is not a priority. It is so frustrating !!! He is actually getting a bit stronger due to steroids and I think rest and proper nutrition. But he still cannot walk on his own. He is sitting up and seems to be getting stronger a bit every day. It gets so discouraging though to have the doctors  say that it is advanced cancer without a biopsy !!! If it is stage four melanoma I m hoping it can be treated like many of you have had treatment. There are a few of you that are also from Ottawa. Please any advice would be apreciated !!!

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mike.socal's picture
Replies 5
Last reply 10/29/2016 - 11:45am
Replies by: KAF, Hukill, Ed Williams, BrianP

     I completed my 3rd infusion of ipi/nivo and about 2 weeks after began having hallucinations and pretty much checked out. Before that it was fatigue,minor rash, but not the more common adverse reactions. My wife took me to the hospital, after they finally told her to bring me in,which was 3 weeks after it began and progressed. I remember very little of it. I was put on Dexamethasone, after a week in the hospital I was released, and now am doing good, no symptons at all, been 2 weeks. Had scans in hospital and they showed response.  NOT SURE MY NEXT MOVE.  Anyone experience these effects?  How long can the treatment be delayed?   And if you delay, did the delay help you with previous effects?  Skip the combo and go to maintenance doses?   I'm hoping if someone has done it these ways, they can please share their experience and results, particulary longer term results.

Thanks, I really appreciate alll of you and the sharing and caring in this community,    Mike


MIke  So. Cali  stage iv

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Samroberts4's picture
Replies 3
Last reply 10/23/2016 - 2:01pm

Hi all,

I wanted to update you all on my condition since last week, when I was initially diagnosed with melanoma.  My dermatologist didn't give me a pathology report, so when I met with the surgeon and he informed me the lesion was 6 mm deep, had a mitotic rate of 10, contained wide margins, and I was in stage 2b, my mouth dropped open.  It's been the longest 10 days of my lfe, but I got the best call of my life today, informing me that my lymph nodes are clear.  The pathologist was amazed. 

I know many of you are in different stages than me, but I just want you to know that there is always hope. I have been so low for the last week by the prognostications of the doctor and the pain from all the cutting and grafting that I felt as if I couldn't go on.  I know I'm not competely out of the clear and that I'll need to maintain regular checkups every few months, but I have regained my enthusiasm for life.  No matter what stage you're in, keep fighting, because there is no feeling in the word like getting past this awful disease.  I'm going to keep coming to this board for as long as it's around and spreading that message.  There's not enough hope given from our medical professionals, and we need it on this board so that people will perservere past all the negativity that surrounds us.  Dont succumb to these thoughts because it will just drag you down.  Positive emotions play a big part in recovery, so keep your head up.

Thanks for all of your encouragement over the past week and a half, and I am so uplifted to be  part of this support group. 



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Anonymous's picture
Replies 1
Last reply 10/24/2016 - 8:04pm
Replies by: cancersnewnormal