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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Bubbles's picture
Replies 30
Last reply 9/13/2018 - 9:05pm

So much thanks for all the love that has been sent my way from all my melanoma peeps.  My best wishes to those of you also facing new hurdles.  Here's my best report of my status for those of you that are interested:

love to you all. c

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Anonymous's picture
Replies 5
Last reply 9/13/2018 - 5:07am
Replies by: Maureen038, SOLE, lkb

My husband Bill has been on a her-2 chemo drug for about three years. He had a scare last year and had a liver met which turned out to be non cancerous. Unfortunately, he had a scan this morning and he has two new lung nodules after being stable for almost three years. He has had three lung vat surgeries, TIL treatment , ipi/nivo, DTIC and now the her-2 drug. It feels like a kick in the gut!


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Adam-MRF's picture
Replies 20
Last reply 9/14/2018 - 2:21pm

Hi everyone,

As many of you have seen, there has been a significant increase in spam activity over the past two weeks. We wanted to let you know that we have been and will continue to be at work to address these unwelcome messages and better prevent them in the future. We recognize that the MPIP is an incredibly valuable resource because of each of your contributions and the dedication you show in supporting, comforting and advising one another - even sharing and celebrating good news as it comes along. As such, any activity that takes away from your ability to freely read, share and use this forum is unwelcome and will be removed as rapidly as possible.

We currently have in place an automated filter that blocks most spam messages before they are even published. This filter flags suspected posts using a number of tools including, but not limited to:

  • An evolving list of keywords often found in spam messages
  • Accounts and/or email addresses that have posted spam on other websites
  • Regions that host spam networks and link farms
  • Accounts that post multiple messages at once, especially soon after creating an account
  • CAPTCHA function that targets automated posting

Occasionally, spammers find a way around these measures. When this happens we recalibrate the filter settings to meet their new tactics, which is what is currently underway. One priority we're currently working on is to strengthen the "multiple message" block - while the occasional spam post may still slip through even the most rigorous filters, this function should be able to reliably block mass messaging. The "report" function was a feature of a previous version of the filter software that was updated and is no longer available by the manufacturer, unfortunately. We are looking into alternatives to replace this feature, as we recognize and value the time and effort you spend to help us maintain this forum.

Additionally, we wanted to better explain the "anonymous" posting setting, which has been used in some of the spam activity. When posting a message as "Anonymous," this only affects what is shown to other users of the board. The user account that posted the message is visible to MRF admins, and when we see activity that is clearly spam, both the post and the user account is immediately, permanently deleted. While we recognize the value to many in the privacy that an anonymous post offers, any abuse of this function in violation of forum rules is not tolerated. 

Lastly, thank you for your patience and cooperation as we work to combat a renewed and unwelcome effort by spammers. Our goal is to always find a balance between strong anti-spam measures while ensuring that individuals like yourselves are not overly burdened by these features. Please know that we are hard at work to provide the best experience possible on the MPIP and that we value your feedback and support in these efforts.


Adam, MRF  

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Savymoo23's picture
Replies 10
Last reply 9/15/2018 - 9:53pm

Hello Family!

So my oncologist wants me to meet with a genetic counselor and I'm wondering what you guys think of that. I don't know if my insurance will touch it, but I'm wondering if y'all think it would benefit me in any way? I'll totally do it, but I don't want to waste time doing it if it isn't really going to help me. Thanks guys!! heart

Savannah Price

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Anonymous's picture
Replies 13
Last reply 9/20/2018 - 11:21am

Long time no rollcall on this forum. We all could use some encouragement here by the long-term survivors. Please feel free to share your stories.

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L-R-M-S's picture
Replies 4
Last reply 9/12/2018 - 1:06pm

After having melanoma in ankle, then multiple metastatic melanomas in lymph nodes excised, then an excision of a whole cluster of nodes excised with radiotherapy, I later had a metastatic melanoma in my T6 vertebra, treated with radiotherapy, chemotherapy and immunotherapy. Declared clear three years later.

Now, I've had a lung x-Ray reveal a "shadow". After taking a wash sample from the site, I've been told it is not lung cancer (I'm a smoker - yeah, Stoopid, right?).

My query is: would a smoker's lung cancer appear differently from a metastatic melanoma? Could the shadow in my lung be a metastatic melanoma, not the lung cancer they suspected? 

Thank you.

(If answering, please declare whether you're a patient, survivor, or in a medical role.)

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MelanomaMike's picture
Replies 12
Last reply 9/11/2018 - 1:58pm
Replies by: MelanomaMike, bjeans, Anonymous, L-R-M-S

Comon guys, every Sunday morning i wake up to this crap that these Hodji's are putting up in OUR website, get it together! We have FAITH that you can figure out what "other" Cancer forums use in regards to Spam/Scam guard!.. Iv been here now a full Year & its been great till last month or so...Mike

Im Melanoma and my host is Mike..

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Anonymous's picture
Replies 4
Last reply 9/12/2018 - 10:06am

After speaking with a few palliative care folks and seeing posts here, I decided to purchase CBD oil to help relieve treatment side effects (Not in lieu of treatment). I bought one you take via mouth (droplet) - and my goal is to help relieve nausea and nerves.  I have been using it in the evening when I start to feel crummy.  

When do others take it? Should I take it in the AM regardless of how I feel then? The recommended dosage on the bottle is 5mg (half the droplet).  I know results vary on anything, but curious for those finding relief.  The usual nausea meds are just not sufficient and I try to avoid Ativan.  Thanks!

- J.

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Mat's picture
Replies 8
Last reply 9/12/2018 - 10:11pm

All, I noticed Brian's post on Stand Up to Cancer.  I missed it live, but the show is available on the Stand Up to Cancer website.  Brian's story is featured towards the end of the show (around minute 50 or so).  Amazing story about an amazing guy and family.  Brian, so glad to hear that you're treatment is going well.  That was a tough haul to and from Houston, but obviously worth the effort.

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Susanlee528's picture
Replies 3
Last reply 9/10/2018 - 6:37pm

I’m really sorry if this subject has been posted before. I searched but didn’t find anything. 

Two weeks ago was my first monthly dose of Opdivo. It all went well and it didn’t seem to be much worse, with side effects, than it usually was. Then this Friday, exactly when I would’ve had my next dose if I were still on the two week program, I crashed just as bad as if I had it. I fell asleep at dinner time and slept almost 20 hours. Which is exactly what happens after each infusion. Has anyone else had this happen to them? It was so strange! 

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MelanomaMike's picture
Replies 13
Last reply 9/12/2018 - 10:10am

Good morning my MRF Brothers & Sisters! Well, yesterdays #5 Opdivo went smooth (first without Yervoy), no cancelations, blood work was fine, kinda ironic now that im done with the Yervoy, Yervoy was quite the little devil in a few ways for me these past few months! Im looking VERY forward to my CT Scan this month (9/17), lets see if my "second" attempt at Immunol Therapy (first being Pembrolizumab) will either knock these son-of-a-witches outta my lungs or atleast Deflate them so i can live a bit longer! I still have some stuff that im not done with and i need more time here on earth, im not sure if God will allow me to finish "Earthly" things!??
Anyhow, go enjoy yer weekends! Love you guys...Mike...

Im Melanoma and my host is Mike..

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Momofjake's picture
Replies 15
Last reply 10/10/2018 - 1:30pm

Okay, here we go. 

Braf meds are over. Our hospital lost all our specialists. So I got to Dr Hamid in LA. He got us in within 2 days and spent hours with us on TH. So we are now in LA from Utah looking at trials. TIL will be hard due to the surgery to remove a tumor. I want to hear how TIL worked for you guys and how you did going through it. I know it’s very rough. 

They also have a “3 arm” trial with LAG-3 and anti-PD1. Ipi and pembro have never worked great for Jake. We will be here until Tues night. Hoping he chooses so he can get consented. It’s been a whirlwind with more brain mets we had to get stable with SRS and the ever fun bad news. Any age stinks, but doing this from 17-21 robs you of some big stuff. It’s crappy. 

He us however bouncing back and we will have some fun at the beach! 

Thanks! Prayers for all as always! 


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Anonymous's picture
Replies 12
Last reply 9/21/2018 - 1:12pm
Replies by: Anonymous, Pwest55, bjeans, Gigigibson, Johnjk04, scw7665, doragsda

My boyfriend has a blue-black mole on his collarbone. It's about the size of a pencil eraser. He's had it for 2 years. About 3 months ago, it ruptured and bled, then refilled. He was on an airplane at the time, so he thought the pressure might have contributed. Sometimes it seems flat, sometimes it seems to stick out more.

The problem is he won't see a doctor. He's mildly concerned and hasn't done the research that I've done. I'm definitely the worrier of the group.

I understand that only a doctor can tell us for sure. My question is whether these characteristics sound like nodular melanoma? It's smooth, shiny and feels a bit squishy. I can indent it with my fingernail.

Any input appreciated, and again, I know that everyone's feedback is just opinions and should be taken with a grain of salt.

Thanks in advance.

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BlessedForLife's picture
Replies 10
Last reply 9/10/2018 - 10:58am

Hi All,

I know I have seen discussion on this before but can’t find it now. 

I’m coming up on 1 year of treatment (Yervoy/Opdivo) and have been NED since March.

My doc is a believer in not going over 12 months with treatment.

Curious about what others have/are experiencing?

Thank You!


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mrsaxde's picture
Replies 10
Last reply 9/10/2018 - 4:51pm

This week was my third TIL trial follow-up. Based on what we had heard up to this point, we went into the appointment with the doctors yesterday with a good deal of concern about what we were going to hear. At my last follow-up in July Dr. Goff had told me that there was still a slight chance the treatment could begin to work, but she didn't sound very hopeful. In fact, I was given the option of taking myself out of the trial or letting them monitor me for six more weeks. Since things were stable I agreed to go to the next follow-up. But going through another round of nausea and vomiting over the past couple of weeks had me convinced it would be back to Dr. Sharfman to look for another trial or treatment.

When my new research fellow, Dr. Seitter, entered the room she didn't look like the bearer of bad news. I have not seen the radiologist's reports on my recent scans but this is what Dr. Seitter told me: My brain mets that were treated with radiation are resolving. The multi-lobar mass in my chest is slightly smaller according to RECIST criteria. One part of it is mainly unchanged, although a little rounder in shape now when it had been oval. The other lymph node that makes up the mass has shrunk from about 7% over baseline measurement, where it was in July, to now about 0.5% over baseline. And, as Dr. Goff pointed out, there is nothing new anywhere.

So I'm still at stable disease, but it looks like there's a possibility that things are going to turn in a positive direction. Dr. Goff said the lab is still working with my cells to try and find why my cells aren't providing a more robust defense.

And there's this...

In my last post, after my July follow-up, I mentioned that it seemed to be time to add some complementary medicine to what the doctors are doing. I'm a Delaware medical marijuana patient and I have been taking Rick Simpson Oil according to his dosing instructions. I started the day I came home from my July follow-up and have been taking it daily. I don't know that cannabis oil has helped this process in any way, shape, or form, but it certainly can't hurt. And it's an interesting coincidence that after over a year of my tumors slowly growing through two trial treatments now after six weeks of cannabis oil they appear to be shrinking. I'm not ready to draw any conclusions, yet.

And I'm not advocating for anyone else to abandon medical treatments for Rick Simpson Oil exclusively. Do what your doctor tells you. But if you live in a medical marijuana state, you might want to look into this as another part of your arsenal.


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