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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JustMeInCA's picture
Replies 4
Last reply 12/5/2014 - 6:19am

Dad got the approval today from his oncologist at UCSF to try cannabis oil for pain management. He said he's seen other people do very well with it and that there are no contraindications with his Keytruda treatments.

Next step: off to the dispensary. The doctor says that the note from Dad's PCP on a prescription pad is all we need, as there is no actual "prescription" that can be written for it anyway. (There is some irony there somewhere that we have this legal drug that is completely unregulated.) He just said that no one has ever OD'ed on cannabis but that we'll want to start low and then add more as needed after 30 minutes or so.

Welcome to the Wild West.  

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StephyD83's picture
Replies 10
Last reply 12/5/2014 - 6:16am

Hi Everyone-

I went to UCSF Melanoma Center yesterday for a 2nd opinion & they reviewed all of my pathology slides. They found that I never had a Severely Atypical Mole that was not re-excised & turned into Melanoma InSitu like I had thought. It turns out that 2 years ago it was actually Invasive Melanoma 0.4 mm in thickness, extending intraepidermally to the peripheral margin Stage 1A.

So the Invasive Melanoma was left on my face for 17+ months & retaken out 2 more times this past March & now I am being told that I need to have another surgery because I have never had the proper margins of 1 cm I only have 5 mm at this point.

I also showed her that my PET/CT Scan light up on a few areas my Spine, Ovaries, Lymph Nodes under both of my arms, & my right knee. She said this needs to be looked into.

What do you all think of this?

Thanks!
Stephanie

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Emcjones1's picture
Replies 3
Last reply 12/5/2014 - 1:07am
Replies by: Momrn5, Emcjones1, BrianP

Quick questions for those who have had PET CT scans, did your oncologist mentions the presence of nodules they would be keeping an eye on that showed up in CT, but we're not active on the PET. I am wondering how common this is?

i suspect it is common, but am wondering.

 

thanks 

Genie

I am a 50 year old female biomedical scientist with stage 3a melanoma.

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michaelinsocal's picture
Replies 2
Last reply 12/4/2014 - 11:16pm
Replies by: KMick, BrianP

Hello all. It's been one year since my diagnosis of maligement melanoma just before Thanksgiving of 2013. 

The primary was contained in a pinto size growth I had on the outer part of my left ankle, just below the ankle bone. The site was given a breslow depth of 4.2mm. What was unique in my case was that I had the growth since my early 20's. It appeared on the left side of my ankle and grew rather quickly (within 2-3 years) and then stopped. For 20 years it never changed shape or color. It was looked at from previous doctors as nothing to be concerned about. In September 2013, I had a hernia repair surgery. For the first fee weeks my wife had to help me put on socks and that's when she noticed a tiny speck of black smack in the middle of my growth. With her encouragement, I went to my primary doctor who shaved it which led to the diagnosis.

In Dec 2013 I had a WLE done along with a SNB with a subsequent skin Granth to cover up the half dollar size area created by the WLE. The sentinel node biopsy came back for micro traces of melanoma in the lymph node. That lead to a full lymph node dessection on the left side of my groin. The good news in all this was none of the 12 lymph nodes removed were maligement. I'm officially stage 3A. Being off my feet for nearly two months and the physical therapy after the dessection were definite challenges but I weathered it.

I opted to do the 12 month Interferon. I'm half way through it now. The first 3 weeks of high dosage was a roller coaster. By the fourth week I had such bad anxiety, depression and flu like symptoms the Dr had to stop the high dosage and gave me a two week break. Since then it's been weekly self injected shots which have been tolerable and have been put on Remeron (anti depressant) and take Ativan as needed for the axiety.

Some days are better than others. I know see my oncologist every three months along with my dermatologist as well as follow up with my surgical oncologist. 

I realize I am at high risk for reoccurrence but I'm keeping my head up and living my life. I feel I have a good team of doctors watching me. I'm vigilant and so should you. Once we learn to conquer the reality that we'll love with this disease the rest of our lives, the better we can not let it dominate our lives. I'm 41 years old and not ready to leave this earth.

 

So there you have it. Live life to the fullest!

mike

PS if anyone near me in the Coachella valley portion of Southern California has recently been diagnosed, I recommend the following Doctors. 

Dr Hyams surgical oncologist

Dr Amy Law Oncologist

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New webinar on MIF.  It's titled "Melanoma 101" and as the name somewhat indicates, those that have been in the game for a while may not learn anything new.  However, the longer it goes the better it gets and toward the end there was some pretty interesting information.  The first 30 minutes is more prevention but after that it gets to treatments which Stage IVers will find more relevent.

http://melanomainternational.org/webinar/2014/12/melanoma-101-a-brighter-outlook/#.VH3oJzHF_Ls

Brian

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/4/2014 - 2:11pm
Replies by: Anonymous, Jubes, jenny22

about a year ago I reached out for some answers I was told I had melanoma didn't know much just had stage 1 well had a large excision done margin clear, I was told to go about life and not worry kept my appointment with dermatology every three months. Well to make a log story short I have had a lot dysplastic moles removed but know the lastest is stage 2 and near the same site as my first melanoma. I go for surgical consiltation the 18th dermatoligist says I need a surgeon for this one. waiting for my pathology report to be mailed to me so I can know exactly the measurements and everything . Just had to let it out I lost my mother to this awful disease in 1993. I will not just go about life I will fight

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mwcollins's picture
Replies 3
Last reply 12/4/2014 - 10:53am

I wanted to give all you warriors and caregivers an update on Kevin (stage IV since Feb 2014).  After a scare in August with a clean CT scan, Kevin had his routine PET scan and MRI today.  Both were clear to the doctor and one of his staff members.  A radiologist has to confirm, but according to the doc, Kevin is still NED!  Praise God!!!  He did get the opportunity to speak to one of the team members about a clinical trial that involves Yervoy and a vaccine.  Kevin has decided (with my blessing and the support of all medical staff) to hold onto any ammunition for when he has a high tumor load, or an inoperable tumor.  He feels good now, and is currently healthy and wants to enjoy that.  I see the benefits of being proactive, but support him in his decision. There is always the possibility of taking part in a clinical trial and still have a recurrance.  If that were to happen, I know he'd be extremely frustrated with putting himself through the pain and agony of the side effects of Yervoy...  Hold out until you really need it!  Don't pull the goalie yet.

I wanted to let you all know that NED is a blessing, taking life as a gift is a realization that we have all come to, and bottom line, life is precious.  Enjoy your Thanksgiving all.  Hug your families!  Love unconditionally, laugh hard, cry if you need to.  Support each other and know that we are all in it together!  Love to you all!!!

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jenny22's picture
Replies 17
Last reply 12/4/2014 - 9:43am

I wanted to write and again say thank you to all those who repsonded to my VERY first post recently.

I had presented my history and current situation.....Now have addtional info and would love to hear any further thoughts.

Got all the scans back and ALL were negative (Brain MRI and CTS of neck, chest, ab, and pelvis).....so no distant mets, calling it in transmit mets......Only thing is cannot confirm stage IIIB or IIIC, since no way to know about LN......(explained in my first post, I was never able to have a SNB due to cosmetic surgery ....) Even asked again now and was told no way to do any type of LN sampling as everything has been so "rearranged"....so that is why cant confirm IIIb or IIIC.....

I need to have additional surgery for one of the 2 small mets that needs some further excision. 

Now, to my question.....I met with MED ONC at NYU yesteray (ana pavllick....loved her)

Since i would be considered NED after upcoming surgery she said she wouldnt treat other than a vaccine trial which i could start in  january, and then have close surveillance, scans etc......I am concerned about no treatment and just waiting.....as surgeon at Sloan (dr. Coit) told me it is MORE LIKELY THAN NOT that these recurrences will come back again.....I asked about adjuvant treatment to help prevent recurrences in this setting and sounds like clinical trials are only options....BUT NYU onc said she would not treat now, other than vaccine . 

I am seeing Michael Postow at Sloan on thursday and will get his opinion. Surgery is scheduled for saturday.

I was told last year I had a VERY LOW probablitlriy of recurrence based on a1.5 mm melanoma, and now am stage III with intransmit mets....hard to do nothing but wait for this to come back.

Just wondered what others thoughts would be.

This site is invaluable and thanks to all to have been here longer.

 

 

 

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arthurjedi007's picture
Replies 13
Last reply 12/4/2014 - 6:09am

Well I really like my radiation onc doc. He is very optimistic. He thinks my walking issue has to do with the tumors in my hip where the bone and socket meet. He thinks if he radiates that ball and socket area it should go a long way with helping me walk good again. I mentioned the tumor in my knee my med onc doc talked about. He double checked and said there is a small tumor there so he will take care of it too.

He also mentioned there are some things going on with my lower spine that might be pressing on nerves but he wants to try the other first. He also did the same leg, feet, arm, hand test they kept doing over and over last winter when I was almost paralyzed so he doesn't believe it is an issue with my spinal cord or spine tumors so that is a huge relief.

There will be 10 zaps. He thinks I should start walking better after the 3rd zap. I hope so. I get scanned and targeted tomorrow with Thursday as the tentative date for the first zap but they aren't sure yet.

Artie

 

 

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Mat's picture
Replies 3
Last reply 12/4/2014 - 12:43am

I'm posting this because the MRF folks (presumably) read our posts.  My posts are continuously being bounced by your spam blocker.  Very annoying.  Makes one think time (and $) is better spent on the MIF site than here.

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Replies by: JerryfromFauq

Hello, this is my first post here. So recently I read a study that shows that (even one time) users Viagra seem to incur higher rates of melanoma. This was only a correlational study, but the correlation was found with melanoma specifically, not other forms of skin cancer which may become more common with age. Interest in this research was ignited when scientists noted that, essentially, Viagra (and other drugs similar to Viagra such as Levitra/Cialis/Staxyn) mimics the process melanoma uses for spreading. This terrifies me because was diagnosed with in situ melanoma at age 17 (around 2010). Since then, I have had a number of moles containing “atypical cells” removed. I have always been uneasy about the fact that threatening moles keep popping up, despite the fact I have no family history and I have always stayed indoors.

Possibly also concerning, I have been prescribed Viagra and Staxyn in the last year. As soon as I read this research, I ceased consumption of any ED medications in the interest of not dying. My intention is to spread awareness about this research. A rational person would not freak out upon reading correlational research, but I only recently became serious about avoiding the sun by all means at my disposal. This includes wearing UV protected clothing and wearing sun screen at all points of the day/night/year. So I became very discouraged when I read that a medicine I was taking MAY increase my chance of melanoma. It such a random factor; I couldn’t have possibly predicted this type of thing. Has anyone heard about this? Can any experts chime in? I have no idea who browses these boards. Thank you for reading and spread the word please. You will have to Google the study to find it. I do not know this forum's policy on linking outside sources.

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Guide to Stereotactic Radiosurgery ------- https://www.youtube.com/watch?v=OQ8vnsEldcw

I'm me, not a statistic. Praying to not be one for years yet.

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vivian's picture
Replies 17
Last reply 12/3/2014 - 5:26pm

I have a second left lung met two years after having one removed by VATS.  This one seems to be growing quickly but is still small (1 cm at last scan) and causing no issues.  Nothing else lit up on  a recent PET, although one tiny new nodule in the right lung is visible on CT.  The docs all say surgery is the best way to go, and I agree, but I am wondering why go through the surgery when it isn't causing me any problems yet?  Why not wait until I have bothersome symptoms?  My melanoma seems to be "indolent" so far - showing up every couple of years with solitary mets, so only surgery has been needed.  I understand that there is no chance that removing this met will be curative in the long term and eventually some systemic treatment will be needed.  

What do you guys think about just letting this thing go until it is a problem or other things show up?  I feel great right now and hate the thought of making myself and my husband suffer through a procedure that while not horrible, is certainly not pleasant!  I would appreciate any advice...

Lear

 

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Ninniditti's picture
Replies 1
Last reply 12/3/2014 - 11:22am
Replies by: arthurjedi007

Hi! After nivo and ipi I only had one treatment left, dacarbazine. I didn't belive much in that but as the only option I started dcb in october. I have melanoma in my sinus on both sides one had breaken through the skullbone tuching the brain. I had a lot of pain and was tired all the time. The last weeks the pain is almost gone and the MR this week showed that my tumores hadn't grown at all in two months and the tiny metastas I had in my lung was gone. I now hope that my tumors wil stay stable until some new treatment come up, a treatment that doesn't involve immunoterapi. I think about vaccines injected directly into the tumur like T-VECK. I am so confused as I didm't except any advantage of dacarbazine and now I am optimistic about celebrating christmas. I really wish all of you a wonderful advent and christmas!

Inger

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JerryfromFauq's picture
Replies 1
Last reply 12/3/2014 - 11:08am
Replies by: CHD

Treatment algorithm of metastatic mucosal melanoma

Abstract: Mucosal melanoma is usually considered as the most aggressive and treatment-resistant subtype of melanoma. The unsatisfactory results of standard clinical therapies for metastatic melanoma highlight the needs for effective new therapeutic strategies. Recent successes in the development of new therapies for metastatic melanoma, such as inhibitors for mitogen-activated protein kinase (MAPK) pathway and blocking antibodies against cytotoxic T-lymphocyte-associated antigen-4 (CTLA-4) or programmed cell death protein-1 (PD-1)/programmed cell death-ligand 1 (PD-L1) pathway, have yielded promising results, expanding the continually evolving landscape of therapeutic options for patients with this disease. In this chapter we review chemotherapies, immunotherapies, targeted therapies and angiogenesis therapies in metastatic mucosal melanoma and discuss their implications.

Keywords: Mucosal melanoma; chemotherapy; targeted therapy; immunotherapy

Submitted Apr 30, 2014. Accepted for publication Aug 13, 2014.

 

I'm me, not a statistic. Praying to not be one for years yet.

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