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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SOLE's picture
Replies 10
Last reply 10/25/2016 - 1:30pm

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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Jubes's picture
Replies 19
Last reply 10/25/2016 - 1:23pm

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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I recently went to a chiropractor who noticed a wierd mole on my back. Two spots. One of them I knew was a tiny round mole from as long as I can remember. But, it has gotten bigger and it is very uneven. And ragged edges. I went to dermatologist and he did biopsy ( no results yet) but, what I am concerned with is him talking to the nurse while doing it saying 12 mm with irregular pigment. He then said to me , it's probably nothing but, then he handed me a brochure on skin cancer as I left. I have one week to wait for results & am nervous. I just knew someone who died from skin cancer. And a friend who had melanoma & had surgery. The other spot was also biopsied & he said 6 mm irregular pigment. Any insight? I don't know what any of this means. Thanks

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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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SOLE's picture
Replies 21
Last reply 10/25/2016 - 1:12pm

Hi everyone

I have come across conflicting evidence concerning sweats and melanoma.

So let me ask you this:

Do you experience day sweats and/or night sweats?

Under immunotherapy or not?

Are those severe sweats like lymphoma cancer patients?

Have you been able to link your sweats to recurrence or met apparitions or else?


I have had mild night sweats for the last two weeks and maybe a few times in september and I wonder if it is linked to the metabolic activity of melanoma

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Anonymous's picture
Replies 4
Last reply 10/25/2016 - 12:28pm
Replies by: snow white, Anonymous, cancersnewnormal, Johnjk04

Long story short, diagnosed in 2014 Stage 4, done the interferon, IL-2, Ipi, opdivo and now in genetic  clinical study.   The dr is only doing ct scan (chest, abdomen & pelvis) & mri of face (mel spread to sinus cavity).  When I asked if they will be doing pet scan he said no, the study does not require it. My question is should I be concerned of not having a pet scan? Is the ct & mri enough since it is covering the areas where the tumors are?  Wanted to get opinions before I call my local onc and talk to him and see if he recommends pet scan.  Thanks for your advice.

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JoshF's picture
Replies 9
Last reply 10/25/2016 - 12:06pm

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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Leigh's picture
Replies 33
Last reply 10/25/2016 - 6:48am

Hi there,

I know this has been mentioned before but it seems most of the threads end up with different conclusions depending on who is responding so I thought I would ask again.  There seems to be a huge gap between different doctors recommendations which is very scary when facing a disease like melanoma.  I would really appreciate it if you might comment on advice you have been given and what stage you were/age at the time.  Also if you did fall pregnant what the outcome was (although I know that is just anecdotal evidence at the end of the day it is encouraging to hear).

It feels selfish to write about this here when so many people are struggling so much with this disease, but the prospect of worsening your prognosis with pregnancy is frightening.  Made more so by the disparity in opinions within the medical fraternity.  I'm not sure if this is clinical bias, or perhaps lack of up to date knowledge that drives this.  From my reading, Marcia Driscoll's most recent 2010 review of the data suggests no correlation between pregnancy and melanoma/hormone use such as oral contraceptives/HRT and melanoma etc.  I am reassured when I read the article but I know some researchers get a bee in their bonnet about things and perhaps she is in the group favouring pregnancy. I recall lots of comments on this website, some women who have died following pregnancy with young children left behind.  I'm not sure of their stage when they fell pregnant but I know some have been convinced progression of their disease was related to pregnancy/IVF.

My situation is that I am 37 and have two beautiful children.  I do not want to leave them without a mother and would not want to take a risk with that.  Similarly I do not want to not get pregnant if there is no real increased risk of recurrence as per this article and some advice I have received.  We have wanted a large family of 4 children and time is running out for that dream so it is decision time.  2 years ago I had a Stage 1 melanoma removed which grew during pregnancy.  It was Stage 1, no ulc, <1 mitosis, 0.83mm, Clarkes IV, neg SLNB.  I saw three doctors before it was removed and only then because it was "bothering me", it was itchy. 

I have consulted various people - two dermatologists told me with the latest literature "no worries", dont "not get pregnant" because of the melanoma.  A surgeon (melanoma specialist) vaguely said, well if you wait 2 years you should be right.  More recently a Prof of Surg (melanoma specialist) has  said that if I fell pregnant, and if I were to recur, pregnancy would bring this forward.  (this was not borne out by my reading of Marcia Driscoll's review). 

This is very rambly and if you have managed to get this far you must be interested in pregnancy and melanoma.  I would really appreciate it if you would share the advice you have been given along with your age and stage of disease to see if there is any real consensus.  I am not sure if this truly does remain controversial or if it truly is reasonable just to go ahead with no real increase in risk (as per my reading of Marcia Driscolls review).


Melanoma tends to bring out the anxiety in me and I feel flustered just writing this and trying to get my thoughts together on the topic.  Hope this makes sense to you and thank you for reading.



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Aida Ballesteros's picture
Replies 2
Last reply 10/24/2016 - 11:08pm

Today a Dr who is friends with my dad told him about transfer factors, and how a friend of his took this therapy to treat his bone cancer and is and has been NED for almost 10 years now, without chemo or radiation. Has someone heard anything about this therapy? Is it even an option?

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jennunicorn's picture
Replies 24
Last reply 10/24/2016 - 9:01pm

I just got home from meeting with my oncologist to discuss what my options are now that the melanoma is back in my groin... and she still feels very likely that the armpit has some hiding there and the biopsy was probably false negative. We will scan again a little sooner than usual to check on that lymph node, if it shows larger, then we can clinically say it's metastatic and I'll be in the stage 4 boat. For now, I am in the stage 3C unresectable boat.

She laid out all of the treatment options. My BRAF test wasn't back yet, but she still laid out the targeted therapies as well. There are no trials open currently, there were a couple she mentioned that will be opening in one to two months. One trial that is open now is for NRAS positive patients, and she's having that tested too, just so we have all info we need.

My deciding factor was to know that if I went with an FDA approved treatment now, would that hinder me from getting into a trial in the future if I need to. She said that the new trials coming out, and many more in the future, will allow patients who have been previously treated with PD-1 drugs, whereas it has been that a lot of trials want PD-1 naive patients only. But, of course as we know, there are still a good chunk of people that try PD-1 drugs and it fails and they have to look somewhere for something new to try, so it makes sense that they will now be allowing those patients to join trials.

With that info, I decided trying the Ipi/Nivo combo is the best bet, and my oncologist agreed that would be the one she'd choose for me as well. Since I had no major adverse reactions to Ipi, hopefully it stays that way for the 4 infusions that include Ipi. Should be starting in a couple of weeks.

I do have a brain MRI scheduled tomorrow morning, just to make sure things upstairs still look good. If not, there is a trail open for brain met patients... but hopefully I don't need to consider that.

It's coming up on my one year cancerversary and I am so incredibly thankful to everyone on here for their knowledge and support. The veterans, the newbies, the caregivers, you all rock, keep being awesome!



Jenn -  IIIC

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snow white's picture
Replies 9
Last reply 10/24/2016 - 8:08pm

HE IS WALKING WITH A WALKER!!!!  woot woot!!!!  They said he is progressing fast and may get to come home the middle of next week, which would mean he can start his treatment as soon as he gets out!  He is moving around really good, still weak, but everything is coming back.  I am so stoked!!!

Thank you everyone for your support, i appreciate it so much!!!!!!



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

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Anonymous's picture
Replies 16
Last reply 10/24/2016 - 3:41pm
Replies by: Alce123, Anonymous, cancersnewnormal, stotesbery

I was wondering if any Melanoma Warriors have progressed from stage 1b melanoma dx to having liver mets.  Only indication was high ALT reading on blood test, some mild stomach fullness.   I would like to hear other's expierences.  You go from being advised that 1b, be mindful but don't dwell on it, your cured to WTF liver mets.   



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