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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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, brain mets, 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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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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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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landlover's picture
Replies 4
Last reply 4/18/2016 - 1:20pm

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

 

 

 

 

Stage 3C, primary on neck, neck dissection May 2016.

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Online Registration, for the Safe From The Sun Walk and 5K Run at Wilson Farm Park in Wayne, PA, closes in 1 week on April 21st! Register now!www.safefromthesun.org

Free screening too by dermatologists and lots of fun and friendship for patients and families and friends

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brittanygrace23's picture
Replies 5
Last reply 4/16/2016 - 10:04am
Replies by: brittanygrace23, Janner

Is it normal for them to remove a few lymph nodes at the same time as your excision as precaution? 

 

My doctor wants to do that, but is it necessary? 

 

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KimberlyVU's picture
Replies 3
Last reply 4/17/2016 - 3:45am
Replies by: Anonymous, Janner, jennunicorn

Hi Everyone,

I have a suspected amelanotic nodular melanoma and had an initial consult with a dermatologist that has now scheduled me for a 8mm punch biopsy.

Everything I read says that I should be having a wide excision.

I feel like he is taking the less invasive route because he doesn't see bumps that look like this.  I am scared of getting an incomplete diagnosis becaues I don't want to be rude or pushy with the doctor.

Should I push and demand a wide excision?  Should I see another doctor? Another doctor is going to take time to get a referrel and basically start from square one again. 

Please don't tell me you can't be sure or no one can tell me what to do etc. I already know that I just want to know in the opinion of other people who have had their melanoma diagnosis what would you do?

Kim V.

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Roni25's picture
Replies 14
Last reply 4/20/2016 - 5:09am
Replies by: Anonymous, Roni25, Polymath, MoiraM, UriahPH, mkirkland

Hi, I'm new here, I'm 35 and live in Scotland in the UK and I am so sick with worry. Over two years ago I discovered what I thought to be an itchy sore mole just at the top of my rib cage. I thought it was being annoyed by by bra but went to the doctors and he didn't think it was a cause for concern but referred me to the dermatologist. When my appointment came through I stupidly cancelled it as it was no longer bothering me. Now just the other day I noticed it was bleeding and looked rather frightening, it looks like a nodular melanoma, it's about 5mm across and is slightly raised, it's not flat. I went to the doctors yesterday and she didn't seem to have huge concern but I don't think she was grasping the seriousness of nodular melanoma, I think she may have thought I meant a normal melanoma (which is of course also serious, I just mean for the fast spreading of nodular) (I was in a bit of a mess during the appointment and don't think I explained myself properly) what's making it worse is that I have a swelling in my neck on the left hand side, it looks to me as its my Virchows node (which isn't good) but the doctor said it was a strong or over pronounced neck muscle (it's never been like that before) When you press it it doesn't feel hard. I'm sometimes getting a tightening sensation in my neck and under my armpit. I also have a swelling in my arm crease on the opposite side of the elbow around my Supratrochlear lymph nodes, this is quite soft and hurts when pressed, the doctor said it was just fatty tissue. Added to this I have pins and needles quite often going up and down my arm on the left side and sometimes my leg. I am so scared that this is metastasised melanoma and don't know what to do. 

 
What did other people nodular melanoma feel like? I've done the firm test and I'm not sure what I'm looking for, how firm was it? Is it really hard feeling. Did the surface of yours feel like a spot? Do they feel smooth?
 
Thank you for any help or information anyone can give me.
 
Ive been back to the doctors and I've had bloods taken. This doctor agreed it wasn't a muscle that was sticking out on my neck and that my neck felt spongy where it was swollen 

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Anonymous's picture
Anonymous
Replies 5
Last reply 4/15/2016 - 1:23pm
Replies by: WithinMySkin, MoiraM, Anonymous

I was diagnosed with 7.0 mm melanoma. It arose from what I figure to be leftovers from a previous melanoma. I guess it would be considering nodular melanoma since my dermatologist described the lump making up the melanoma as a nodule. The nodule is on my ankle so thankfully that puts it further away from a lot of vital organs. 

Anyway I want to get a good idea of whether or not it has spread to a lymph node or other organ. I'd appreciate getting opinions. (I understand it's no replacement for actual tests but I have to wait for that and want to gather input in the meantime)

I've been having an issue with my reproductive health for months now. Vaginal burning and discharge that won't go away despite taking antibiotics, painful varicose veins and blue-ish marks in general that feel like bruises and are fairly painful (I'm not pregnant), I also have 3 dark freckles on my labia that have developed within the past month that I noticed at around the same time the blue-ish marks and painful varicose veins there appeared. 

I'm sorry. I know this isn't a gynecology forum and I feel stupid for asking since from what I'm mostly reading it seems that melanoma tends spread to the lymph nodes and other internal organs so assuming that theres some new secondary site presenting itself on the surface of the body doesn't site right with me. I'm mostly asking because I am having a hard time finding alternative explanations for my reproductive health issues and I have also been diagnosed with HPV. I know the exact type of HPV I have but have no other information on it so I can't tell if it is the type that puts me at higher risk for vulvar melanomas or not. 

I feel very uncomfortable bringing this up with a doctor in person for various reasons which is why I'm posting this anonymously. 

 

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Toby0987's picture
Replies 1
Last reply 4/15/2016 - 2:47am
Replies by: MoiraM

Just got back from Mayo. I'm previous stage 3b Mel as well as pap thyroid cancer. They killed off the thyroid cancer with ablation earlier and I'm still clear. Had my PET and it showed up that I had appendicitis but I don't feel sick so false positive? They called me at 8pm after PET and quizzed me on any physical symptoms and to go to er if have any pain. Today went in and they said not sure what is going on but if I don't have symptoms that the best course of action is to do nothing. Have any of you had a situation similar with the PET? It also showed a bigger node and sugar pickup in the node. My original Mel was on arm and in armpit. My fat/hot node is near my appendix . I have to go back in 2 months for a follow up PET to see if the node has gotten bigger

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