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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My mom was diagnosed with melanoma about two years ago. A few months ago, I was diagnosed with juvenile melanoma. We are both constantly worried that we might miss future issues.

I am studying Computer Engineering and have been inspired to gather a team of people to develop some way to monitor skin changes indicative of Melanoma. Often times, I have noticed that I tend to be inconsistent with monitoring my own health. Furthermore, it seems that doctors have a hard time noticing minute changes on the skin during the few times I visit within the year. I want to change this and I need everyone's help

Below is a link to some questions that we’ve created and we need the input of as many people as possible. Answering any of the questions will help us with the development of the technology.

 

We greatly appreciate any input.

 

ChrysalisScience

or

https://docs.google.com/forms/d/1AHnzlU_Y_Rz3qN243pbqHR0xBRLpXKu6o5lYJbA...

 

Thank you!!!

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Bigdaddy5's picture
Replies 11
Last reply 4/19/2016 - 9:41pm
Replies by: BrianP, Bigdaddy5, Anonymous, Bubbles, kylez, jenny22

 

Hi:

I had my excision surgery to remove the remants (post-shave-biopsy) of a 2.6 mm tumor from my torso on 2/24.  Officially stage IIa.  We requested that they genetically test the tumor for BRAF or NRAS mutation and the results took about a month.  I was confirmed to have the NRAS mutation today

So other than diet and exercise - I will just hope, wait, pray for the best.  NRAS does not sound like a good thing should the next round of this personal war erupt down the road.

Any other adjuvant type activities recommended?

Thanks,

Neil D

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cooplk's picture
Replies 1
Last reply 4/19/2016 - 4:34pm
Replies by: Bubbles

Has anyone had a form of Gillian Barre from the ipi/nivo combo?  My friend's daughter is 28, dx in December '15, started a Clinical Trial, no side effects round one, a "motor variant" of Gillian Barre with the second?  How was the recovery from the Gillian Barre?  

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JohnA's picture
Replies 2
Last reply 4/19/2016 - 4:10pm
Replies by: khubes, Bubbles

Sorry, I had to copy the text from a press reader so there are some spaces missing!

Hopefully more good news like this will be released this week and next-

John

Immunotherapy found to improve cancer survival http://www.pressreader.com/usa/the­washington­post/20160418/2815909447...

new orleans — More than a third of advanced­melanoma patients who received one of the new immunotherapy drugs in an early trial were alive five years after starting treatment — double the survival rate typical of the disease, according to a new study. The data, released Sunday at a cancer conference, showed that 34 percent of patients with metastatic melanoma who received Opdivo, an immunotherapy drug also known as nivolumab, had survived. The five­year survival rate for patients with advanced melanoma who got other treatments was 16.6 percent between 2005 and 2011, according to the National Cancer Institute. Researchers said the study is important because it represents the first long­term follow­up of survival data from a trial using an “anti­PD­1” immunotherapy drug. That approach targets the PD­1 protein, which is involved in a complex process that prevents the immune system’s T cells from attacking cancer. “It is very encouraging that a subset of melanoma patients is experiencing a long­term survival benefit,” said F. Stephen Hodi, director of the Melanoma Center at the Dana­Farber Cancer Institute, who led the study. The data “provide a foundation” for using anti­PD­1 drugs as standard treatment for melanoma patients, he added. “Hopefully this would translate to other cancers as well,” he said. Louis Weiner, director of the Georgetown Lombardi Comprehensive Cancer Center, who was not involved in the study, said he was impressed by the results. “A lot more people are living longer and hitting major milestones with their loved ones because of this,” he said. The study was released at the American Association for Cancer Research’s annual meeting, where thousands of scientists and physicians are gathering this week to share the latest developments. Much of the research to be presented is focused on immunotherapy, which is seen as the most promising advance in cancer treatment in decades. Doctors used the immunotherapy drug Keytruda, along with radiation, to treat former president Jimmy Carter, who announced last year that he had contracted melanoma that had spread to his brain. In early March, Carter said that he was stopping treatment because it had been so successful. Amid their enthusiasm, researchers caution that they have a long way to go in understanding why immunotherapy helps some people and not others — and in making it more effective. The melanoma trial led by Hodi was started in 2008 to determine what dose to use in treating patients with nivolumab. The median age of the 107 patients was 61, and more than two­thirds were men. All had been treated previously for melanoma. The beneficial impact of the drug perStudy bolsters idea of using anti­PD­1 drugs as treatment for melanoma Immunotherapy found to improve cancer survival

-sisted for some patients even after the treatment was discontinued. The overall survival rate for all patients fell from about 63 percent after 12 months to a little more than one­third after four years, and then it plateaued. Such flattening out is indicative of a long­term benefit in some patients, although more followup is needed, Hodi said.

 

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Eileensulliv's picture
Replies 4
Last reply 4/18/2016 - 11:54pm

It's been a while since my last post, but I still visit and read the board posts often and sometimes respond here and there... So now I'm reaching out in hopes that some of you may be able to offer some advice...

Quick history... Wle and SNB in 2006 for melanoma in my back, was told stage II. No lymph node involvement, didn't do any treatments, just regular checkups. January 2015 diagnosed in-transit met in back, PET shows mets in lungs, small intestine, and some lymph nodes. Started ipi/nivo trial, and was told NED in December. February scan shows two small nodules in right middle lobe, but nivo treatments and prednisone have apparently hurled me into diabetes, so have to stop treatments until glucose is under control. My onc at Hopkins says the two nodules could very likely be just due to infection, so rescan in 8 weeks.

I have nasty delayed reactions to CT scans with contrast... Fevers, nausea, chills, vomiting, shortness of breath... Even with prednisone premeds for days. I have come to have anxiety around scans, but mostly because of how I know they will make me feel, and that I'm going to have to take time off work. I had a scan Thursday and am just now feeling op to putting on clothes other than my pj's. And of course the only way to treat the reaction is with prednisone, which makes my glucose skyrocket (it's been dangerously close to 500 several times this week with all the prednisone!)

Preliminary results of the scan (I haven't seen actual report yet, just saw my onc) show that one of those two nodules in my right middle lobe have disappeared. But the other one has grown, it was originally 6mm, not sure how big it is now, but onc says it's still too small to biopsy without risk of causing harm to my lung. He also says its most likely due to infection. He says I could have breathed in something in the days leading to the scan, and that's what is showing in my lung. But what troubles me is, it's in the same spot as it was two months ago. I haven't been sick with so much as a cold, but have developed a bit of a dry cough. And if it's infection, wouldn't we want to do something about it? He just wants to rescan again in 8 weeks.

He also says we can start the nivo again in two weeks. I've been off the nivo for two months, and certainly don't mind going back on it again. But if this nodule is indeed melanoma, it grew while I was on regular nivo treatments. For some reason, I have a sick feeling about all of this. Maybe I'm being too anxious? Should I just trust my onc or should I seek another opinion? I live in the DC area, so there are other great options nearby, such as NIH, Georgetown, even MSK isn't out of reach. And if I do seek another opinion, can you make any suggestions as to doctors/facilities? Thank you all so much for your help!

Eileen 

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Tamlin's picture
Replies 2
Last reply 4/18/2016 - 9:15pm
Replies by: Bubbles, Ed Williams

Hi

please excuse my ignorance, but could someone please explain BRAF and NRAS mutation in laymans terms please. I'm having a lymph node dissection on Wednesday and would like to know what I should ask my consultant. 

 

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CaliforniaSun's picture
Replies 2
Last reply 4/18/2016 - 8:58pm
Replies by: KimberlyVU, jennunicorn

I guess I won't be getting my taxes in today, afterall. In about 15 minutes I will be heading back over to the UCSF Dermatology department for my biopsy. I knew it had to happen, but was still surprised by the concern on the doctor's face and her saying we have to get this done today...

I did the whole-body photography today, I loathe being naked in front of strangers. Luckily I had the good sense about 4-5 years ago to be photographed, so UCSF will be getting those records and can look at the changes in my moles.

The mole we are going to biopsy today is fairly large, flat, 2-3cm I think and irregular, an "ugly duckling" and all that.

I can't believe I'm concerned about the impending scar. That should really be the least of my worries.

-CaliforniaSun (Mary)
woman, 36 years old
San Francisco
family history of basal cell (?) carcinoma (mother)

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rhodri's picture
Replies 3
Last reply 4/18/2016 - 7:54pm
Replies by: Scottw, Mat, AshleyS

Firstly i have been following this board for over two years but have not posted as there has not been much to say to this point!    This is a really incredible resource with respectful knowledgeable wise group of people  Almost happy to be here

Diagnosed Stage 2A July 2013  nodular type 3 5mm  WLE completed  Neck Location Sentinel Nodes clear One year on interferonwhich stopped October 2014

In January i had palpable lymph nodes in my armpit confirmed melanoma mets by biopsy  

CT scan showed further mets right adrenal 5cm both lungs 1 5 and 1 0

Started IPI NIVO combo on March 17   Uneventful apart from some d and v and a  chest infection I thought coincdental

This week after the second infusion and i have had diarrhoea and vominting since day 3   Have been back into see the team a few times and they are very pleased with the results LDH is dropping from 500plus to around 300 chest xray is showing positive changes  Very happy with their care but wondering if anyone with first hand experiene has any thoughts?

 

Taking Imodium 16mg daily

Ondasseton 8mg three times a day

All the best

 

Rhodri

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So the T-Vec injections I have been getting don't seem to be working on their own and my oncologist has decided to start me on Opdivo. I have read all of the side effects from their website, but I would really like to know what other patients have encountered being on this drug. 

Got PET scan results back and a spot was found on my left breast that now I am having to get biopsied to see if it's breast cancer or my melanoma spreading, so I'm not sure if the above treatments will continue, but I already have one scheduled for the 26th, so any help wouldl be greatly appreciated. Thanks in advance. 

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Mat's picture
Replies 15
Last reply 4/18/2016 - 6:30pm

I'm very encouraged to see the numerous posts by folks that have had success with ipi/nivo.  After progressing on other standard treatments over time, I moved on to ipi/nivo in January.  I have my third infusion this week (and have been fortunate to date with mild side effects).  Here's my question--most folks that have done ipi/nivo did it without prior treatment.  I believe that the clinical trials were only open to treatment naive.  If correct, the (impressive) data and response rates from the trials are limited to treatment naive.  Are there any folks that have done (or are doing) ipi/nivo following prior treatments and, if so, how are you doing?  (I have not been scanned (other than routine brain MRI) since starting ipi/nivo.)  Thanks.

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AshleyS's picture
Replies 16
Last reply 4/18/2016 - 6:18pm

Hi friends,

It has been a while since I have posted. However, I've been checking up on everyone. It's great to see lots of old names doing well but I'm always sad whenever anyone posts bad news. 

For those of you who have been given NED/NERD status, can you tell me what your plan is for the future? I'm specifically wondering what everyone is doing concerning scans, appointments, and treatment. I know all of the immunotherapy treatments are relatively new and there is no definitive answer. However, I just want to compare plans. 

After failing traditional chemo, I switched my care team and started the combo trial in March 2015. I made it through 3 rounds but was kicked off due to grade 3 diarrhea. Scans showed 95% tumor reduction in May of 2015. I then did one singular dose of ipi and will have my 23rd infusion of Opdivo tomorrow. I was given NED status in November and my scans last week were clear. My plan is continue Opdivo until June 2017 (although my doctor is toying with keeping me on indefinitely - I'm a 32-year-old wife and mother of two toddlers so she says she doesn't want to "mess around"). I'll also continue to have scans every 12 weeks for another year and a half. I take my treatments at a nearby clinic in North Dakota, but have scans and see my melanoma specialist at MD Anderson. 

Again, I realize there are unknowns - I'm just wondering what others who've reached this point have done/are doing. Also, I'm not complaining; I'm perfectly fine with remaining on treatment for another 60 years. Thanks for your help folks. 

Ashley

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/18/2016 - 5:58pm
Replies by: jjw2014, Anonymous, Scottw, JuTMSY4

My wife is currently Stage IV and has recently completed her fourth round of the combo. At her recent CT scan, about 15 weeks into treatment, she had mixed results; some spots stable in lungs and liver, but several new spots have appeared in the skin. From discussing with our doctors, most response is occurring within the initial 12 weeks or so. I was wondering if anyone here on this combo has 1. had an experience where it took longer for the treatment to have an effect and 2. experienced new spots appearing before the drugs began to work? We are investigating other treatment options and trying to determine how long to continue with the combo before trying something else.

Appreciate any insight you can share on your experience being on the combo.

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landonm's picture
Replies 4
Last reply 4/18/2016 - 1:20pm
Replies by: landonm, Janner, casagrayson

Hi- I am newly diagnosed with melanoma in a cervical lymph node after having a small melanoma removed from my neck 4 months ago. Scans are done, lymph node sent off to Mayo clinic for Braf & other further testing as I understand it and I have an appointment at the Melanoma Clinic at the University of Michigan coming up.  

My question is about the path report on the WLE done in the original spot. First, I noticed that it was a shave biopsy.  There is nothing on it about Clark's level.  It does state breslow depth .35.mm which I know is very thin, but hey! Here I am with a positive lymph node 4 months later.

the pathology report is as follows:

Subtype: superficial spreading malignant melanoma

Cell type: epithelial

Ulceration, regression, satellitosis, vascular extension,lymphatic extension, perineural etension : all not identified

Mitotic activity: 2/mm2

Host response: lymphocytes 3+, melanophages 1+, fibrosis is present

Margins: The tumor extends to the peripheral margins and focally to the deep margin

What concerns me is the part about margins. It sounds as if the "tumor" goes thru the whole depth of the specimen so how can a depth be determined? I guess this is really water under the bridge now, but I would appreciate any thought.

PEGGY

 

 

 

 

Peggy Landon

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Mellani's picture
Replies 4
Last reply 4/18/2016 - 9:19am

I haven't posted here in a long time! I just added my patient story to the site under the name Melissa W. This is the first time I've mentioned an anniversary, because I have severe survivor guilt and I feel bad for others who haven't survived this awful disease. But, since it has been 10 years since my diagnosis, I want to share a message of hope and love to everyone who is struggling with melanoma, and all of our loved ones who care for us melanoma patients. 

I was diagnosed stage 3 on April 17, 2006, which was determined to be stage 3B on May 24, 2006. I chose not to do interferon. I did 11 days of GM-CSF in July 2006, but became so ill from the side effects that I stopped the injections. I had x-rays and bloodwork every 3 months for a couple years, then every 6 months for a few years, and finally just annual checkups, or as often as I need to go because I get scared that a new symptom is a recurrence.

I am so incredibly grateful for my family, friends, and doctors who helped me through this in the last 10 years. I think I should send a thank you card to my surgeon and let him know I'm still around. He removed all of the melanoma in three surgeries and I honestly think he saved my life. 

Being diagnosed with melanoma was a frightening experience. I read other patients' posts and blogs. I researched everything I could find on the internet about all stages above mine, just in case I needed to know what to do next. I lost people from MPIP whose melanoma spread and couldn't be stopped. I stopped reading the posts and blogs after a while because it was overwhelming to continue to connect with people through their stories, then lose them. 

Thank you to MPIP for being there for me when I felt scared and alone and needed some support. I don't think I would have done so well in those first couple of years without the help, and I'm glad MPIP is here for those who need the support now. 

heart

Mel

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Ninniditti's picture
Replies 3
Last reply 4/17/2016 - 5:21pm
Replies by: Ninniditti, Bubbles, MoiraM

Hi, I would like your opinion. Since diagnose seven years ago I have tried all available treatments, surgery, highintensive radiation + cisplatin, a lot of surgery after recurrence, nivo, yervoy, dacarbazine and keytruda. Nothing has helped but dacarbazine hold it stable. I can't have TIL or T-vec. Two months ago I had radiation just to reduce the pain, the tumour is in all my bones in my left face. I am now almost free from pain and am now supposed to have temodal, the same as dacarbazine but in tablets. All these seven years I have been very very tired and felt sick so I hate to begin with chemo. Am I stupid to just go on without any treatment at sll. Quality before quantity. I am 67 and could have a wonderful life if it wasn't for this tiredness and sickness. As I wrote I just wan't your opinion on this. 

Ninni

Inger

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