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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landonm's picture
Replies 3
Last reply 4/8/2016 - 9:26pm
Replies by: Janner, landonm

Hi.  I am a 57 year old active healthy (was!)  individual.  I had a very thin (.35mm) melanoma removed from my neck by wide excision in Nov. 2015.  Because of the thinness no further treatment except skin checks were recommended.  Fast forward to March of this year: I noticed an enlarged lymph node near the excision site and watched it for about a month before calling my dermtologist.  She was concerned enough to refer me to a sugeon but said it was most likely not melanoma.  Unfortunately, it was.  I am now awaiting scans and have been referred to the Melanoma Clinic at the University of Michigan but won't see them for 3 weeks. 

Naturally, I am pretty concerned.  Does anyone else have a history of this kind of quick progression from a small lesion?  I have been reassured by the melanoma clinic nurse that 3 weeks wait will not change anything, but it seems like a long time! 

I've been reading other's stories- an am glad there is a place for us to meet and talk.

Thank you!

Peggy Landon

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Anonymous's picture
Anonymous
Replies 7
Last reply 4/8/2016 - 5:53pm
Replies by: Anonymous, Janner

Hello guys.

 

I'm worried about something: I have an aunt who's had melanoma. She has quite a number of moles on her body. So does my father and grandmother (between 50 and 100), but none of them had the disease.

Although, my sibling and I have very few moles on our bodies, so I'd like to know if any of us should worry about FAMMM, CDKN2A mutation or pancreatic cancer risk.

Thank you!

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/8/2016 - 5:33pm

I'm a member of a Facebook support group for melanoma patients in the UK. Some fellow members have failed to respond to ipilimumab / yervoy or pembrolizumab / keytruda. They have also tried dabrafenib but the disease has become resistant. TILs is available but not on the NHS and is expensive if you are self funding. T-vec is not available for patients who have bone or lung mets. What treatments or trials can I suggest to them ? Mel J

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JakeinNY's picture
Replies 16
Last reply 4/8/2016 - 1:52pm

Do yourself a favor and look into the ketogenic diet. This is not some crazy thing that has no history. It has been studied and undergone some small trials and is currently going thru many more trials. Check out the following links:

 

http://www.nutritionjrnl.com/article/S0899-9007%2812%2900186-4/fulltext

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157418/?tool=pubmed

http://www.nutritionandmetabolism.com/content/4/1/5

http://www.ncbi.nlm.nih.gov/pubmed/7790697?dopt=Abstract&holding=f1000,f...

http://melanomamaverick.com/finally-able-to-cry-emotional-from-ketogenic...

 

The first four links come from reputable sources.

The last link is related to melanoma and you can see my post in it but of course I don't know if it's legit, as it is just someone's blog.

You can talk to your oncologist about all of this.

Best  wishes for a long life.

Jake

Do the best you can.

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Anonymous's picture
Anonymous
Replies 13
Last reply 4/8/2016 - 12:39pm

On Friday I was told I have a Clark III Maligant Melanoma, superficial spreading type.  I have an appointment with a surgeon on Tuesday and an appointment with an oncologist on 4/12.  I am really scared.  I am scared about the cancer spreading elsewhere.  And advice or knowledge is welcomed.  I have 4 beautiful children:  15,13,11 and 7 and I am not ready to leave them.  

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Sgarceneaux's picture
Replies 3
Last reply 4/8/2016 - 11:54am
Replies by: Becky, Anonymous, Janner

My 11 year old daughter was just diagnosed with an atypical Spitz tumor that started in the scalp and now has moved to the lymph nodes in the neck. The initial pathology was done at UCSF and further test are being done at Sloan Kettering. We are currently seeing our local Pediatric Oncologist/Hematologist who has advised us to hold tight  for the test results to come back and do a PET scan in 2 weeks. I am looking to get a second opinion as not to waste time and he said he would facilitate this for us but I want to make sure I go to the best place for this second opinion and don't waste anymore time. Does anyone have any experience with this type of tumor and where the best place would be to go? Any info would be greatly appreciated. 

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Anonymous's picture
Anonymous
Replies 10
Last reply 4/8/2016 - 10:39am
Replies by: Nanners10, jade1111, jennunicorn, fortiz, Anonymous, Janner

I have recently been diagnosed (yesterday) with melanoma present in a lymph node in my groin.  I previously had a thin melanoma diagnosed 9 years ago 0.65mm treated with WLE.  No other treatment was warranted and based on the pathology, treatment would not be different today.  I live in Northern California and pursued being seen at Stanford and UCSF clinics just to ease my anxiety after my original diagnosis.  Had tried to really move on from the terrifying experience and took the advice of someone on this board to stay off of it unless I needed to be here.  Well, 9 years later here I am.  Recently I felt a lump in my groin and found out yesterday that it does contain melanoma cells.  Met with a oncological surgeon today.  I am waiting for insurance approval to move ahead with MRI of brain and PET scan.  Hoping that these come back clear.  At this point I am hoping someone can point me in the right direction.   Should I return to UCSF for consultation there as well?  Elsewhere?  Suggestions for providers in Northern California?  Meeting with surgeon today was in my local area.  After clear scans he can do groin dissection in about two weeks. That seems like a long time to wait with cancer in my groin?    I want to be sure to receive the very best in treatment and am overwhelmed with trying to care for myself, body and mind, my small children and at the same time making sure that I receive the best medical care available.  I have not had the best experience up to this point.  Any tips?  Ever so grateful and encouraged with success stories on this board.

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Rosegargala's picture
Replies 5
Last reply 4/8/2016 - 10:01am

OSU says only a few cells were found in my SLN with the greatest measurement at .5mm . Is this good? I have done some research and found that when only a few are present it means that it might not go to my organs. I have to go to my oncologist every 3 months for blood test and chest x-ray as per OSU proto call .  I could really use some positive feedback , so please if you can contribute to answering my question would appreciate it so much !

Roseyes

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Gene_S's picture
Replies 8
Last reply 4/8/2016 - 9:54am
Replies by: Gene_S, DZnDef, Anonymous, mhees1964, Scared99

Dear Reader, 

I know many dermatologists who carefully count up the total number of moles their patients have. They say if you have lots of these growths, you have a higher risk of developing melanoma skin cancer.

It turns out, they are wrong. Not only that -- they have it completely backwards. And there's no need to perform this painstaking procedure. In fact, recent research suggests that if you have lots of moles, you actually have a much lower risk of developing melanoma than someone with very few moles. And if you do happen to get melanoma, the presence of multiple moles may indicate that the cancer will behave less aggressively. I'll tell you more about this interesting new discovery in just a moment. But first, let's back up a step...

As I often remind you, melanoma is the one and only deadly form of skin cancer. It can and does kill. But melanomas make up just 9 percent of all skin growths classified as "cancerous."

Melanoma comes from melanocyte skin cells, the pigmented cells that allow our skin to turn tan when exposed to sunlight. They make and release melanin, which darkens the skin. People of color, with naturally dark skin, have more melanocytes in their skin.

Many doctors obsess unnecessarily on skin moles, technically called "pigmented nevi," because they have high concentrations of melanocytes. They assumed we need to carefully monitor these growths because they expected malignant melanoma to arise from these sites.

But new research says we've been looking in all the wrong places.

Fewer moles linked to higher melanoma risk

In a new study published in JAMA Dermatology, researchers studied 566 patients at two academic medical centers and an affiliated VA hospital. Doctors surveyed the patients from 2006 to 2009, within three months of having a melanoma skin tumor biopsy. They measured thickness of the tumors. Typically, the thicker the tumor, the more aggressive the cancer. They also counted the number of moles on the skin.

The researchers divided the patients into three groups. Patients in the first group had zero to 19 moles. The second group 20 to 50 moles. And the third group had more than 50 moles each.

The researchers also evaluated the moles as to whether they appeared "atypical," which is thought to increase the risk of developing melanoma.

Strikingly, the majority of patients with melanoma skin cancer were actually in the low "0 to 19" mole category. And none of the few moles they did have were characterized as "atypical." All their moles were just average skin moles. Also, the older the patient with melanoma, the fewer moles they had.

I also found it interesting that people under 60 years old who had greater numbers of moles -- in the more than 50 moles category -- had thinner melanoma cancers, which are typically less aggressive cancers. But in patients younger than 60 years, the presence of more than five atypical moles was associated with thicker melanoma cancers.

So in this study, melanoma skin cancer was more commonly diagnosed in people with fewer moles, compared to those with a higher mole count. And in younger and middle-aged patients who have a lot of moles, and do get melanoma skin cancer, the cancer is thinner and therefore less aggressive or dangerous.

 
What does it all mean for you?

So -- having more moles may actually protect you against getting melanoma skin cancer. And if you get melanoma, chances are it may be a thinner, less aggressive cancer.

Remember -- there are melanocytes in the skin all over the body. Yes, there is a higher concentration of melanocytes in skin moles. But moles cover only a very small percentage of the skin, even in people with lots of them.

Most of the melanocytes are located elsewhere in the skin. So it stands to reason most of the melanomas will arise from melanocytes that don't happen to be located in moles.

While the researchers didn't answer why having more moles appears to protect people from melanoma, this new study did put another myth about skin cancer to rest.

Of course, you can't do much about how many moles you have on your body. But there is a simple step you can take that can help reduce your risk of skin (and most other) cancers: Spend more time in the sun.

This advice is also contrary to what you typically hear from dermatologists. And indeed, other studies link melanoma risk with over-exposure to the sun and sunburn during adolescence and young adulthood. (That's one reason young people shouldn't frequent tanning booths. Fortunately, the FDA has recently taken steps to regulate tanning bed use more stringently.)

But, as you get into middle- and old-age, don't be afraid to go out in the sun. Spending more time in the sun will help raise your vitamin D levels, which lowers your risk of skin cancer, prostate cancer (as I reported last week), and most other cancers.
Here's what else I covered in this week's Daily Dispatch...

"

////////////// WRAP ENDS HERE ////////////// -->

Always on the side of science,

Marc S. Micozzi, M.D., Ph.D.

Source:

1. "Total Nevi, Atypical Nevi, and Melanoma Thickness: : An Analysis of 566 Patients at 2 US Centers," JAMA Dermatology, (www.archderm.jamanetwork.com ) 3/2/2016 

 

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

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Anonymous's picture
Replies 3
Last reply 4/7/2016 - 6:47pm
Replies by: DZnDef, Anonymous

Two years ago a derm said a spot on my back had to be removed.  Like a fool I did not get a second opinion and did it.  Turned out to be a very slow growing type and probably unnecessary given my age and other other chronic health issues.

Now a dark spot appeared suddenly on my wrist, purple to start with, then browner, not a mole. About the size of a pencil eraser.  Seemed to fit the bill better for melanoma than the early one.  But it is fading fast a week after I noticed it.  What does this mean?  

There are only two derms in my town and I don't want to go to either one of them.  Big city a distance away also had two derms that I consulted after first surgery.  Not impressed with them either.  Why is it so hard to get a competent derm who doesn't rush into surgery, doesn't get annoyed with being asked for a second opinion.  I went to 4 in all and wasn't unreasonable, kept going because I knew I needed to find a good one for future reference.

If this is melanoma regressing, does it need treatment?  Keep watching it?  Do what about this?  If I go to another knife happy derm and he/she carves out a ditch like the one in my back, I may lose function in my hand because there isn't much between skin on wrist and the tendons, muscles, bone that operate my hand.

Any opinions?

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Tamlin's picture
Replies 2
Last reply 4/7/2016 - 12:03pm
Replies by: jennunicorn, Anonymous

Hi

I had a fine needle aspiration biopsy on enlarged lymph node and haven't been feeling great since. I have mild flu like symptoms and sometimes a dull ache in the back of my leg and constantly tired.  Can this be related? 

Thanks 

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Tamlin's picture
Replies 3
Last reply 4/6/2016 - 2:31pm
Replies by: jennunicorn, Tamlin

Hi 

First of all, thank you so much to those who took the time to reply to my previous posts. 

I had an appointment yesterday with consultant regarding lymph node removal, but once he examined me, he said he would rather try and avoid this as node is very deep, so he did a fine needle aspiration biopsy there and then. He is now arranging a CT scan for me asap. 

Having a bit of a wobble. Should I be worried about this? 

Thanks 

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ldcroberts's picture
Replies 3
Last reply 4/6/2016 - 12:52pm

Hi,

 

I'm interested in stories or research showing whether a tumour rupture helps the immune system detect future melanoma's and improves prognosis or whether it causes metatasis and spread and worsens prognosis.

I can find some research that shows other types of cancer spread and worsen, and some research that shows melanoma has an immune response rather than spread, but I was hoping to balance it out to see whether there is a pattern or whether it's just random.  Any survivor stories of ruptures appreciated too.

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Scooby123's picture
Replies 15
Last reply 4/6/2016 - 12:34pm

Hi all been today had gamma  knife, after more detailed scan still just the one spot to take care of. It had grown from 4mm to 5 mm but the nurse said scan I had before is different regarding slices they take of your brain, so most of time always different. Not sure if growing 1 mm is quick from Feb scan to now.

everything went ok just very sore where the frame was fitted. Went in at 7am home for 3pm did not want to stay over night.

Will see my consultant in May they said 3 months before scanning again to see how it's gone. No mention of any other treatment at this stage. They said they gave me max dose too tumour .so hope it kills it.

hope you all ok 

take care

scooby123❤️

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