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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Anonymous's picture
Anonymous
Replies 4
Last reply 7/31/2017 - 5:58pm

I have a question my father in law was recently diagnosed with stage 4 melanoma what should we expect and what is the life expectancy ha has been offered a clinical trial how smart is it to involve him in that 

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jc2dad's picture
Replies 6
Last reply 8/2/2017 - 8:15am

Will start fighting back this disease on August 4th (medical anyway...already started on the spiritual aspect). Meet with the surgeon and oncologist and then a battery of pokes, prods, and scans. Does anyone have any tips for navigating MD Anderson or recommend lodging? They told me to plan on being there 5 business days

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eric w's picture
Replies 19
Last reply 8/3/2017 - 5:19pm

Just wanted to say happy bday to someone who has helped me as well as many many more folks in the mel world!! Hope you have a great day C!!!

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thinkingofu's picture
Replies 14
Last reply 8/1/2017 - 10:30am

Hello everyone

Just wanted to share some news with you. Thanks to your help and so much very useful information you have provided us with, doctors have agree to start my mom on Opdivo/Yervoy protocol. They will start with 4 IV doses of both, then move to Opdivo-only phase. Still waiting for BRAF results, so they said we may move to inhibitors after that. 

My question is this. If it is not too much trouble, could you please share your personal experience with the protocol? How bad were the side effects? My mom cannot sleep and is crying all the time saying if it is not melanoma then side effects of treatment will get her. 

I do not know how to help her. Maybe some of your experiences with side effects will help. 

Everytime she reads your posts here she feels better. 

Thank you so , so , so much xxx

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/1/2017 - 9:53am

General question here for the MPIP community. After completeing a year long clinical trial on adjuvant pd1 therapy, or event ipi has any one here been able to enroll in a secondary trial?

I know it sounds like overkill if you are disease free, but is this reasonable?

So far I've received 12 doses of pembro and am currently disease free (knocks on wood) for resected stage 3b disease. 

Is it to premature to be thinking of a second year? Has anyone been down this road and asked their oncologist, or would it be worth asking mine to see if I could qualify for a second year of pembro

off trial?

I am tremendously grateful to be in the position I am, but am the sort of person who likes to always be a step ahead. 

Best to you all, any responses would be greatly appreciated. 

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Anonymous's picture
Replies 1
Last reply 7/30/2017 - 7:21pm
Replies by: Janner

I recently had a mole shave biopsied. It was my first experience with any changing mole (I'm 45). It started feeling like there was a pimple underneath it and it got reddish. By the time I saw dermatology (about 8 days later), the symptoms were fading -- discomfort was gone, redness was gone, though the original mole was a still a bit raised at that point. I have no known family history of melanoma. 

The shave biopsy came back as "Compound melanocytic nevus with congenital features and mild to moderate junctional atypia. Junctional atypia focally extends to the margin."

I was sent to dermatology surgery for excision. The surgeon told me these rarely turn into melanomas but that hte standard is to excise.  When I asked about the reasons, he told me that when they get into that "moderate" range they like to remove them, and that they also wouldn't want me to forget about the spot and not notice changes in the future.

I did my own research and what I'm finding is studies that suggest the outcomes for moderate atypia are similar to mild in that they don't turn into melanomas, whether excised or not. Further, recurrence of the atypia is low (4%). (for example, this, this, and this).

Am I missing some research that conflicts with these conclusions? I understand that the conclusions in these studies aren't absolute --- that they can't say there isn't any risk, but they do seem to suggest that risk is pretty low of just observing plus annual skin exams rather than excision.

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Ingekk's picture
Replies 4
Last reply 7/31/2017 - 6:21pm

I am so relieved right now. They where only able to find cancer in one lymph node. It appeared to be "closed", and showed no signs of spreading. They checked 80 other lymph nodes and none of them had any cancer.

They told me this means they do not even recomend Radiation treatement. I will be followed up every three months for 10 years to be shure that the cancer does not come back. And I will also have a couple og  pet scans the first years. 

They think that the cancer came from the melanoma I had removed for 15 Years ago, that had spread to the lymph back then. This time we took all the lumph nodes on  the neck and my muscle, and all the blood vessels on the neck. 

I feel like I won the lottery on this one, and are not scared anymore of the checkups to follow. I understand that it has a chance to come back other places on by body, but surgents told me that after looking at the evidence, in my case the chances are close to 0. 

I am celebrating with my family tooday, and finally I can relax a bit, and get our well earned summer vacation.

 

Inge Kristian

 

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Len777's picture
Replies 4
Last reply 8/3/2017 - 2:14pm
Replies by: Len777, SABKLYN

Hi everyone, I am a 33 year old guy with pretty fair skin and several moles, none of which have ever appeared problematic. Just a few days ago I noticed sudden change in a mole on my forearm that had been there for as long as I could remember (I just found a pic showing it from 2007). The mole is small (about 3mm x 2mm), an oval shape with pretty clear borders. It's always been a uniform chocolate brown color but suddenly got really dark/blackish areas in the center. The mole (including the new dark spots) is flat. I look at this mole every day as it's not far above where I wear my watch, so I'm confident I wouldn't have missed it if this change was happening a while ago.

I promptly scheduled an appointment to have a dermatologist look at it this coming Monday, but am having a lot of anxiety over it. In the meantime, I wanted to get opinions, from people who know more about melanoma than I do, about:

--If this were melanoma and the changes appeared that quickly, would that mean it's more likely to be in situ/early?

--Is there anything I should be sure to say/request when I see the doctor? Do you think she might biopsy this mole at this first examination, and if so would it likely be a punch procedure based on the size/description.

I had a really bad cancer scare last year (not melanoma), and know I'm so worried about this suddenly changed mole.

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jennunicorn's picture
Replies 4
Last reply 7/29/2017 - 3:08pm

Hi guys! Just wondering if any northern cali peeps will be at the Miles for Melanoma 5k tomorrow in Golden Gate Park?

Team Jenn will be out there walking our butts off :)

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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Detroit97's picture
Replies 5
Last reply 7/30/2017 - 12:03pm

Hello everyone! My name is Julia, I'm 38 years old and diagnosed yesterday with melanoma. I've had this spot on my back, literally on the skin above my spine, for several years.  Recently I've been really sick but now I'm wondering if this is all related.  I'm also wondering that if it did metastasize, would it go to my spine? I'm still waiting to hear back the specifics from my doctor but I do know the sample size was 4 mm. I saw the sample and it did have some depth to it. Has anyone gone through a similar situation? Thanks for all of your help and support! I'm nervous. sad

 

Julia  

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thinkingofu's picture
Replies 6
Last reply 7/29/2017 - 11:58am

Hello everyone

Thank you so much for being so helpful in the past. I have another question regarding your experience with treatment. 

My mother has stage IV Melanoma, mets in brain (3) and in the lung (1). 

There was swelling in her brain caused by two of the mets (liquid around them) which was taken care of during the operation. Two of the mets were taken out during the op and 1 is still there. 

We are preparing to move her to another hospital, but doctors are considering giving her first round of treatment now. 

We have mentioned Keytruda to them which they know about and think it may be helpful, but they are saying that Keytruda may produce another swelling (liquid) in her brain. 

Is that a known side effect of Keytruda and other immunotheraphy drugs?

Thank you 

heart

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MelanomaMike's picture
Replies 12
Last reply 8/1/2017 - 10:53am

Hello brothers & sisters of the Melanoma bug, im Mike and i stumbled upon this site thank God, its been a chalk full of info so far. I was first diagnosed in 2008 stage 3b all in my left leg, since then ive had 6 surgeries one being in my Lymphnode area {left groin} where it had traveled to. We spoke {my team} of chemo but decided on just surgeries. My last surgery was June 29th 2017 {surgery #6} also in my left leg {shin} apparently its DNA wasnt related to past Melanoma tumors, a new breed of sorts, and some sad news, my last PET/CT revealed a spot in my Right lung {lower lobe} & a smaller one in my Left. I see an Oncologist tomarrow morning for a second opinion {other then my primary one} out in Riverside Kaiser to discuss a game plan. Ive already spoke with a Thorax spc. of course hes talkin surgery, a brutal one in comparness to my leg ones, braeking rib bones, deflate lung, poke & feel around for the tumor and finaly "snip"..yixe!!!..so, i wanna get a second opinion, im thinking hell, itr keeps coming back now, Chemo just has to be my answer right? surgeries seem to average 2 to 3 years then comes back. Now that its broken through my {what i call} Lympatic Road Block, and now in m my lungs, i think its time. Ill post what happens tomarrow after my visit, im very glad i met you all here at MRF {MPIP}...Feel free to ask questions or give insight, im seeing alotta good things about Yervoy so, i will ask about that...Thanx...Michael Pruitt Van Nuys Calif.

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msitz's picture
Replies 6
Last reply 7/28/2017 - 2:13pm

My father was diagnosed with stage 4 Melanoma (primary unknown) in March 2015 with lung, bowel and lymph node metastases at the age of 59. He had a very large tumour burden with multiple huge (up to 8cm) tumours and had a bowel perforation prior to starting treatment. There were no treatment options available for him in Canada so we brought him to MD Anderson for an opinion.

He was started on Keytruda in March 2015 and had a near complete response. He did have an inital scan immediately after starting treatment that looked like progression but this turned out to be pseudoprogression as subsequent scans showed a dramatic reduction in the size of all of his tumours. Once his CTs stabelized, he underwent a PET scan that showed that he had just one tumour that was still active. This one tumour remained active on PET for 6 months so we decided to remove it in case it was a resistant piece of melanoma.

He just underwent surgery at MD Anderson last week to remove this piece of tumour. The final pathology report is back and there was no melanoma in the tumour, just inflammatory cells. He had a complete response to Keytruda!!

I am posting this to let those of you out there know that there is hope despite a large tumour burden. My was extremely sick in March of 2015 (details in previous posts). Positive stories on this forum kept our family going so we are hoping to pass along the good news.

All the best to everyone.

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betsyl's picture
Replies 19
Last reply 8/2/2017 - 6:42pm

Greetings! I have a question that has been nagging me for a while.

According to cancer.org:

"The numbers below are among the most current available. But to get 5-year or 10-year survival rates, doctors have to look at people who were treated at least 5 or 10 years ago. As treatments are improving over time, people who are now being diagnosed with melanoma may have a better outlook than these statistics show."

"Stage IV: The 5-year survival rate is about 15% to 20%. The 10-year survival is about 10% to 15%."

https://www.cancer.org/cancer/melanoma-skin-cancer/detection-diagnosis-s...

So, my question is when will we know the *new* 5-year and 10-year survival rates now that more effective treatments are widely available? Keytruda/Opdivo were approved in the last few years, right? So that means the new "official" survival numbers will be available in the early-to-mid 2020s? And, of course, the "new normal" is a moving target as further advances continue to be made.

With all this in mind and given that we already have some data on response rates and durability, are there any credible estimates for the new 5-year and 10-year survival rates?

Cheers and best wishes,

Betsy

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Hollybmeuc's picture
Replies 13
Last reply 8/8/2017 - 4:45pm

This site is amazing. I've learned so much here and I thank you very much. I have stage 3a melanoma and 3 days ago I just started yervoy treatment. 10 mlg every 3 weeks x4.   I'm wondering how others experiences were with side effects, who've had this treatment.       I'm only  itching really bad and get fatigued early in the day.  I feel pretty good so far.                                                            I'm hoping I can continue working okay. I'm also curious of if it's helped as well. Thanks,    Holly

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