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
Replies 9
Last reply 11/30/2016 - 7:37am
Replies by: Carole K, DebbieH, cc, CindyCo, Kim K, Tim--MRF, Anonymous, Fen, Janner

Hello! I have been diagnosed with melanoma stage 2 b in September 2016. While I am in a panic and I want to ask, is  someone here who had been diagnosed with mm at least 15-20 years ago and NED? Maybe 30 years? Is it real?  Maybe someone has such positive stories...

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Hi Maggie,

I check on here from time-to-time and I haven't seen you for a bit.  I'm hoping you are okay?

Thinking about you...

All the best,  Laurie

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Mimi820's picture
Replies 2
Last reply 11/29/2016 - 9:58pm
Replies by: Mimi820, Janner

Hi:) I am a 43 female with a history of many basal cell skin cancers. I recently had an area of suspicion on my left breast area (12:00). It started as a tiny black dot that slowly enlarged. I had it biopsed and was informed that it was an early melanoma in situ. My pathology report was not very informative-just listing the diagnosis and some medical derm terminology. It did not list depth, ulceration, regression etc that I have read that reports should have. I was referred to a plastic surgeon for a Wide excision. My question is, would the second path report list the above info?

My next concern was the location. Thankfully, the biopsy was pretty tiny, however, its in a slightly delicate spot. About 2 inches above the nipple (sorry tmi). I had a breast MRI a couple months ago because of having very dense breast tissue-luckily, it was negative. However, in my report it stated that there may be a "lymph node" present in the left breast at the 12:00 position***exactly the same location where my melanoma was removed. Ughhh. Do you think this is coincidental? I did decide to go back to see my breast specialist to get her opinion- she is also a surgeon. Thinking of having her do the excision also. Should I ask about the lymph node, and to ask if I can check it out during my excision, or am I being a hypochondriac because it was in-situ in the first biopsy? I appreciate any insight! Ty:)

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Anonymous's picture
Anonymous
Replies 5
Last reply 11/29/2016 - 9:41pm
Replies by: sweetaugust, Rocco, GreenWally, Anonymous

Recently diagnosed after a routine skin check with nodular melanoma stage III. Located in the Boston area. I am looking for recommendations / opinions on the best melanoma doctors in the Boston Area. 

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Aaron's picture
Replies 4
Last reply 11/29/2016 - 9:38pm
Replies by: Mat, JoshF, Gene_S, Hukill

Just to give a quick background.  Stage 4.  Ipi/Nivo combo.  Pituitary damaged after 3rd ipi infusion.  Vitiligo all over arms.  Lots of Prednisone and missed a couple Nivo treatments due to reactions. 1st scan everything shrunk by 1/2.  The latest scan (2nd scan) most everything stayed the same with slight shrinkage to one or two nodes.  

I realize this is still good news but in a way it is disappointing news compared to last time.  I am a little worried that the slow down of my progress might be a sign of becoming a partial responder and not reaching NED.  This may seem "Brattish" because I am exhibiting a lack of patience or that I'm not thankful for the progress I did make.  I am very thankful, but we all know that we all want good results and we want them asap!  Mainly I'm just wondering it the rollercoaster of good scans and bad scans are typical.  Has anyone experienced a breakthrough scan where they didn't have good results and then in another scan or two they were back on track?  

 

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Gene_S's picture
Replies 5
Last reply 11/29/2016 - 9:37pm
Replies by: sweetaugust, Anonymous

 Efficient Skin Cancer Treatment (Melanoma) – Cancer is a result of DNA mutations multiplying too quickly for your immune system to catch up. Caused mainly by inflammation, the thymoquinone and thymohydroquinone properties in black seeds have been found to be effective in it’s treatment. Known mainly for it’s anti-inflammatory properties, black seed oil has been proven to prevent and treat many different cancers, including skin cancer. This is again due to the potent anti bacterial and anti inflammatory properties it contains, the 2 main properties of black seeds.

The way they work is by targeting your white blood cells, thereby boosting your immune health and killing cancer cells.

https://www.diamondherbs.co/101-black-seed-oil-benefits-to-consider-whil...

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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_Paul_'s picture
Replies 17
Last reply 11/29/2016 - 6:07pm
Replies by: _Paul_, adriana cooper, Tim--MRF, JoshF, Anonymous, Mat, jbronicki, Bubbles

Well I'm off to MD Anderson tomorrow. I think the seed of the idea to do this was planted by Ed who said I should talk to Josh. I tried to get hold of Josh using the MRF messaging system (which I have never had any luck with in the past), and failing that, lurked his posts to see he is going to Anderson for ACT.

Sometime around then it dawned on me that Anderson has the biggest melanoma program, period, so why wasn't I at least getting an opinion from them?

So, we will see.

I had a sobering conversation with the lead researcher for the TIL in Seattle who pointed out the possibility that I am no longer responding to immunotherapy (having failed both ipi and pembro as mono treatments). In which case TIL will be useless.

But I don't have a better plan, so unless Anderson has something compelling, the plan is to start the old-school TIL regimen around Dec. 13. I was supposed to start a week earlier, but they have been having problems "growing good TIL" from their current batch of donor blood which they hope to have cleared up by then.

I can feel my energy level subsiding and my breathing is a little more labored than it used to be (my biggest tumor is encircling a major airtube in my lower right lobe).

I have come to grow accustomed to Zaphod, the sub-q on my right shoulder. I think of it as a barometer. If I feel that sucker shrinking while on some hopefully-soon treatment, I will be quite pleased.

- Paul

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Tim--MRF's picture
Replies 1
Last reply 11/29/2016 - 5:36pm
Replies by: jennunicorn

Today is #GivingTuesday, and in the wake of Thanksgiving season I have been thinking about the many ways that people give.

This community is one of the most giving places I have ever known. Hundreds of people donate their time and their energy by offering care, prayers, practical advice and best wishes to friends and strangers alike. They give generously of themselves so that others affected by melanoma can find the information and support they need to live as long and as well as possible.

Over the years, the MPIP has grown significantly. This year the MRF will have more than 3 million visits to our website, and the MPIP is the most heavily visited part of our site. This makes it very clear that for every post that you may read or reply to, thousands more are visiting anonymously and benefiting from the information being shared.

Many of you have talked about how much you rely on this site for the information and community that it hosts. In that spirit I invite you to consider making a #GivingTuesday donation to support the work of the MRF. If you are interested and are able to do so, simply follow this link to our donation page:

http://bit.ly/2gfqnBL

Please do not feel obligated to donate in order to continue to participate in MPIP. This site has always been and will remain free and open for anyone who benefits. While financial donations greatly support the work of the MRF, I recognize that many times the most important contribution you can make is to offer your time, compassion and experience to someone in need – it’s a gift we see every day on this forum. Whether you make a financial contribution, or give of your time by offering support and counsel, or simply read these posts and learn more about your journey—thank you for being part of a very special community.

Tim--MRF

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My husband has been fighting since July 2015. So everything has went pretty good , until September 26th . He was feeling quite right , arm and leg felt heavy. Went to primary, was sent right to hospital, found brain metastases. Fast forward, he has radiation and started keytruda. Completed 2 keytruda, the third will be today. But he had a fell last Friday, feel to his knees and could not walk . So here we are back at hospital still not walking good so not ready to release. Dr wants to add vemurafenib and cobimetinib with keytruda. He has been on mekinist and taflinar prior before brain mets. Wondering everyone's thoughts on keytruda with vemurafenib and cobimetinib? Anyone done this combo and luck with brain mets? I would appreciate any words on this. I truly am at a loss . Thank you

Cathy Jewell

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/29/2016 - 11:56am
Replies by: Anonymous, Tim--MRF

Would a in situ melanoma reoccurrance on the scar of my wle be considered metastic disease.

My onc has possibly mentioned this but i thought metastic would have a depth on the melanoma not have no depth.

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the scared wife's picture
Replies 4
Last reply 11/29/2016 - 6:20am

I've been lurking on here since 2013 when my husband was first diagnosed. The possibility that he has a recurrence has finally prompted me to post and my username says it all. 

He originally had melanoma on his scalp. He had 1 positive lymph node. He had surgeries and was in a drug trial. He has been NED since late 2013.

He now has an area on his forehead. He had had it for probably 7 or 8 months and it was only skin coloured. The oncologist and the dermatologist both saw it when it was first noticed and thought it was an sk. Within the last month or so it has turned brown and looks like it is starting to ulcerate (not sure if right word - it does have a little bump in it similar to the many that were in his original area). We saw his oncologist last week and when we were saying it had turned colour she said that sk's can do that but when she looked at it she said that it was not an sk and he needed to get it biopsied. He is now booked to see the dermatologist on Tuesday.

I know I should know this, but what do they do to biopsy it? I ask because I'm not sure that things were done the right way at this point the first time so I need to know what is the proper way to determine if this is a recurrence. I want to be prepared for this appointment.

I'm sorry if this doesn't make sense. I'm just very worried.....

Thanks

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/28/2016 - 11:15pm
Replies by: Janner, Anonymous

Hello everyone. I was originally diagnosed 3b from a mole on my back in nov 2015. The excision opened up and left a good size scar on my back after it healed.(2in high 5in long) I spotted a small spot on my scar and pointed it out to derm.(size of a freckle) The spot removed and came back insit u melanoma. I had a pet/ct scan that came back clear as of today. What would be my next options to treat this melanoma in situ . Since it was on the SCAR can melanoma insit u spread? I mean does insitu make a difference between normal skin and scar tissue. I always look forward to hearing from everyone especially Janner. There are so many knowledgable people on this site. Thank you

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Sophietx's picture
Replies 5
Last reply 11/28/2016 - 6:29pm
Replies by: Sophietx, Anonymous, Janner

Maybe you can give me some advice. I am from Europe but have lived in Australia, California and Florida. Both of my kids are fair skin. Especially my 13 year old son has had white hair and blue eyes. We spent big part of his life in Florida. I was just diagnosed with Melanoma in situ. My son has huge moles - more than 1 cm like 5 of them on his head. I have taken him before to pediatric dermatologist before and the doc never said anything. Also he has a large mole in his belly bottom. I am taking him back next week. What should I do? Should we have all the big moles removed? Now with my history I am really worried. 

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Anonymous's picture
Anonymous
Replies 13
Last reply 11/28/2016 - 4:03pm
Replies by: Anonymous, welcome32, klcouser, dmturner, Tim--MRF, slh4448, Toby0987

My daughter 23 years old was diagnosed with Stage 3 melanoma last month.  Her Tumor thickness ws 0.9mm.  Ulceration absent.  6 mitosis/mm2.  She had it removed along with a sentinel lymph node biopsy which came back saying present as clusters of tumor cells, the largest cluster measuring 0.4 mm in size, no extrcapsular extension seen.  The first melanoma oncologist wanted her to have the CLND along with a year of treatment on interferon.  We were ready to go ahead, but then were able to get in to a Dr. at Sloan Kettering, who says they feel in her case the wait and see approach is the road to take.  Just so scared and don't know what is the right path....

Carol Gonsalves

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JayArr's picture
Replies 6
Last reply 11/28/2016 - 11:51am
Replies by: JayArr, Mat, CowWhat, jennunicorn

Hi,

Let me give you a rundown of my situation, I'm looking for helpful advice so let me thank you in advance for your time and responses.

I'm located in Victoria, BC, Canada. Closest major cities are Vancouver BC and Seattle WA. Unfortunately we don't have any melanoma specialists in my province and I wouldn't be able to use any in Seattle unless I could afford it out-of-pocket, so the closest one that I could find on Google is about 1250kms away. Apparently we have a "critical" shortage of derms here in BC because their pay is the lowest here. There's actually more than one that commute across the country to work because they make more doing that than just staying home.

Anyways... Aug 2015 I had a mole removed from just below my right pectoral that was diagnosed 1B - <1mm thickness but with ulceration, Mitotic rate 1. As a follow up a couple weeks later I had a WLE along with SLNB, nothing else found. I guess that means I'm NED? Since then I've been seeing the dermatologist every 3 months, I've had a couple spots that were suspicious to me but he's not been concerned about anything he's seen so far. He did do a thorough exam on my first visit, I think to provide a baseline for any changes.

Now, however, it seems that every time I'm back, the visits are getting quicker and quicker (my last exam was probably 3-4 mins); almost like he's relying on me to tell him if there's anything that needs looking at. That said, I do have a small, firm, domed lump on my back, approximately 1cm across. I don't recall when it first showed up; my wife thinks it showed up around the same time as my initial diagnosis and surgery; possibly even before that but neither of us is completely sure. I've asked him about it a couple of times and he seems quite reluctant to do anything about it. My intial surgery site scar is hypertrophic and while that's not really cause for concern to me, he seems to think that we shouldn't do any more excisions unless absolutely necessary. He feels the lump on my back is a "benign cyst" and doesn't warrant any further tests. I didn't find much when I research melanoma + benign cyst, but I haven't been able to stop thinking about it and after a while I felt that it does warrant more tests. So I went to my GP and asked for a referral to another derm.

I wasn't actually concerned until I went to my GP (who also didn't seem too worried about it) and she called it a sebaceous cyst. When I started researching melanoma + sebaceous cyst, then I started to get concerned. Now I'm awaiting her call with her next steps, as she said she was going to consult my derm (who apparently is THE skin cancer dermatologist in our area) and get back to me with a course of action. I just want it removed and/or biopsied! Shouldn't they be jumping if I ask for something to be tested? What am I doing wrong when I go to see them? I'm not downplaying it (I don't think) when I'm there so are they right to not be concerned? I'm starting to think I may need to pitch a fit in order to get anywhere!

Anyone else been in this boat before? Or anyone else with Melanoma in BC? If so what's your story?

Thanks everybody... sorry I couldn't make this shorter.

JR

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