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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lastexit470's picture
Replies 13
Last reply 4/23/2016 - 1:41pm

About 6 weeks ago, my wife was diagnosed with metastatic melanome in her right groin lymph node.  She underwent a CLND 3 weeks ago.  They removed 10 lymph nodes, only the one came back positive for melanoma.  Both our doctor here in Columbia and Siteman in St Louis have given us two choices.  Do Yervoy or do nothing.  Both doctors have said their advice would be to do nothing.  They have said she has had best case since she just had the one lymph node come back positive and there is a good chance they got it all.  Also, this is an unknown primary.  They have stated Yervoy has some very serious side effects that could be very detrimental to her body, and has a 5% mortality rate from the side effects.  

You are all very experienced, what are your thoughts?  We are leaning towards doing nothing but we want to make the right choice for our 3 little boys and our family.

 

Thanks!  Doug

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Bubbles's picture
Replies 2
Last reply 4/21/2016 - 10:32pm
Replies by: Charlie S, jennunicorn

With more folks gaining access to the anti-PD1 products Pembrolizumab (Keytruda) and Nivolumab (Opdivo) more folks are asking what it actually is.  I've posted this before and it is rather rudimentary....but some folks report being helped by it....so here you go:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

If you put anti-PD1 in the search bubble on my blog you will probably find more stuff than you ever wanted to know....but if it helps...

Yours, c

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Maria C's picture
Replies 12
Last reply 4/23/2016 - 11:44am

Hi all - 

Tomorrow I get the results from the MRI & CT scan I took yesterday and am quite nervous about them. I'm paricularly concerned about the MRI, since 2 months ago was the first time they came back clean with no brain mets since all this began last summer.

For some quick background, I've taken all 4 ipi/nivo combo infusions during which time I've also had 2 gamma knife procedures. I've had severe reactions to the combo, including inflammations of the eye, liver, and lungs (with steroid treatment for each), full-body skin rash, severe loss of hair (3/4's out, with no signs of stopping), and now signs of vitiligo (white eyelashes, eyebrows, and now patchy 2-toned skin). All that said, I am NOT complaining because I'm already seeing results towards remission and I'll do whatever is needed to "battle the beast" and prepare for whatever battles lie ahead.

In preparing for my follow-up appt. tomorrow, my questions are:

1. Is there anything I can do or take to reverse the hair loss?

2. Ditto for the vitilogo?

3. Is there any proof that the Nivo maintenance protocol is tied to better stats for patients, and if so, where is this report specifically?

If anyone on this board has had these issues and have any answers or advice, please share. And also, should I be asking any other questions for tomorrow?

As always, thanks MPIP for this "think tank" patient forum!!

Maria - Stage IV, MM, partial responder to ipi/nivo combo

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Bubbles's picture
Replies 8
Last reply 4/25/2016 - 10:29pm

With greater treatment options for melanoma, questions about what they all mean and the cellular pathways in which they are supposed to operate become more pressing and often confusing.  Where does NRAS, BRAF, MEK, ERK, CDK4 and 6 fit in????  Sometimes a picture is worth a thousand words.  I posted this some time ago...but thought it might help some of you....

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/melanoma-pathwaysa-melanoma-molecular.html

Wishing you all my best.  Celeste

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Patrisa's picture
Replies 2
Last reply 4/20/2016 - 9:15am
Replies by: Patrisa, Polymath

Hey there fellow fighters!!!

Can anyone on Keytuda please respond... My father is on the (hopefully) miracle drug for 12 weeks now and he seems to be doing great... His two visible tumors (under the skin surface) are almost completely gone (bigger one was 5x5cm and the smaller one has dissapeared), he also has some mets in his lungs...

Since his first pet scan in May, we are starting to feel a little scared... Can we hope, due to the fact that he responded so well to keytruda 'on the outside', that his mets in his lungs have shrunk/dissapeared as well?

I know that no one can tell anything for sure, but what do you think? 

Thanks to every one who responds....

Be brave and belive in miracles!!! 

 

Patrisa

 

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Tina2016's picture
Replies 5
Last reply 4/26/2016 - 9:42am
Replies by: tracey25, Bradley75, WithinMySkin, Anonymous

I was diagnosed with stage 3b melanoma, unknown primary tumor in January 2016. I had noticed a lump in my left groin in November 2015 which was finally biopsied. I had never noticed any suspicious lesions and I have had yearly full body dermatology checks ever since I can remember. I have history of 5 BCC on my chest and back area over the last decade, so I am pretty diligent with all that. The report also showed that I have the BRAF gene. My PET scans have shown no other evidence of disease.

I have seen a medical oncologist and 2 surgical oncologist who have all agreed that I need to have a complete lymph node dissection of my left groin.

I had already been scheduled for a left hip replacement and the doctors agreed that I should have that done first since I was in extreme pain. That was done in February and I have now recovered from that.

My questions is...with all the advances in drug therapies, should I consider getting an opinion from Sloan Memorial, USC, MD Anderson or Moffitt?

The possible complications from complete lymph node dissection have me feeling quite anxious!

Any thoughts or suggestions?

Thank you, this has all been quite overwhelming!

Tina

 

 

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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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Janner's picture
Replies 13
Last reply 4/26/2016 - 7:09pm

I was originally diagnosed today 24 years ago as stage 1a.  That lesion would be considered stage 1b in today's staging criteria.  I also had 2 other primaries, an in situ in 2000 and another stage 1b lesion in 2001.  I'm still here.  Still stage 1b.

I post this only to show that there are stage 1 people (and 0 and 2) that don't progress.  This board is very lopsided towards those who have had a recurrence and it is easy to lose perspective.  Not all early stagers progress, in fact most don't. 

http://www.MelanomaResources.info

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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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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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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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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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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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Maria C's picture
Replies 8
Last reply 4/22/2016 - 12:47am

Hi all,

As a Stage IV melanoma patient with a particularly aggressive type (mucosal), I am trying to get my head around the proliferating field of immunotherapy - who are the major players, who is working collaboratively, and whether any one of the new (or older) institutes plan to share their data with patients so we can make the most informed decisions possible in our respective corners of the world without expensive second opinions/travel. 

I realize I may be just dreaming, but still my innate idealism leads me to believe that the medical field will move in the direction of information sharing and collaboration over competition. I am particularly hopeful that the new Parker Institute will be a model for this approach.

But first, to identify where the immunotherapy breakthroughs are/will be taking place nationwide (and even worldwide), and how best to follow those advances? And in particular, as it relates to the melanoma community, where so many of the recent immunotherapy success stories originated.

I have dug up the following:

Parker Institute for Cancer Immunotherapy:
http://parker.org/initiatives/parker-ici

Bloomberg-Kimmel Institute for Cancer Immunotherapy:
http://www.hopkinsmedicine.org/kimmel_cancer_center/news_events/immunoth...

Roswell Park Center for Immunotherapy:
https://www.roswellpark.edu/research/center-immunotherapy

Ludwig Center for Cancer Immunotherapy:
https://www.mskcc.org/research-areas/programs-centers/ludwig-immunotherapy

Cancer Research Institute:
http://www.cancerresearch.org

If anyone has others to add to the above list, please do share, as well as your thoughts/experiences with any of the above - very much appreciated!

I would also welcome stories about how others have approached their research once you or your loved one was diagnosed.

Thanks so much, and have a beaufiul (and hopeful) day!

 

Maria - Stage IV, MM, partial responder to ipi/nivo combo

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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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