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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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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sandifeet8562's picture
Replies 9
Last reply 4/10/2016 - 4:53pm

My son finished immunotherapy in January, and current scans are clear. However, along the way he has lost the function of his thyroid, on synthroid. Now he is currently experiencing side effects with his pancreas and my be developing type 1 diabetes. My question is, what otehr side effects might we encounter, anyone else having trouble with their pancreas? We are so happy that the disease is gone but these setbacks are taking a toll on moral. Thanks

michele daly

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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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HopefulOne's picture
Replies 3
Last reply 4/26/2016 - 8:59pm
Replies by: HopefulOne, Momofjake

Hi all,

I've been MIA for a while. I know it's selfish but when things are going relatively smoothly for my husband - I want to feel like life is "normal" and so I tend to go dark and not come on this forum as much.

But lately I've been poking around, checking on you all.

A quick snapshot of his journey: primary melanoma about 20 years ago, its return October 2012 under his armpit (11 positive nodes out of 31 removed), spinal tumor in May 2013, small bowel resection in March 2014 and then another small bowel resection in May 2015. Since then, he's been on Keytruda. His #16 infusion is next week.

Generally all has been well except the last few months he's been feeling more and more tired. I probably should back up and let you know that he's worked hardcore pretty much through all of this with a fairly physical job. And after chemo, you can pretty much find him at the gym lifting more than most of us weigh. :-) 

But the fatigue is getting to him. He's also been complaining about pain in his ribcage/chest area. He likens it to having a cracked rib that seems to get worse when he lays down.

So what's the game plan? He's getting two MRIs (lumbar and thoracic) today. And then his former melanoma specialist (long story there but we're still in contact with her) suggested he get his endocrine functions checked out, said his issues could be inflammation around the lining between his chest wall and lungs, and/or bone mets (lytic lesions). Scenario three sounds the worst/most scary to me. Other than the MRIs today, we're going to wait until next week to talk about the other test options with his current melanoma specialist. 

You know the drill: anxiety out the wazoo. I'm trying hard to remain positive and hopeful. But just having one of those freaked out days.

If anyone has had or has had a loved one with similar symptoms, I'd be curious to hear about your journey.

Wishing you all the best - and thankful we have this way to seek out support and positive energy from each other.

Thank you.
Kimberly

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/5/2016 - 9:33am
Replies by: Anonymous, Momofjake, jennunicorn

I am trying to not freak out, so I am reaching out to the people here. first a little history..

my aunt on my Dads side died at 37 of Melanoma

in 8/2014 I was diagnosed with in situ and have had 14 dysplastic moles removed

In January of this year my daughter(18) told me she had a lump in her arm pit, we watched it for a few weeks to see if it would go away, thinking maybe it was an infected sweat gland or something. It did not go away so she went to the Dr. and took antibiotics for 10 days. Still no change, it is hard, size of a quarter, does not move, and not painful unless you push hard on it. Today we went back to the Dr. And she said it is her lymph node so she wants to send her for a sonogram. I told the Dr Id like her to look at a mole on my daughters back that she has had since she was little, we have had it looked at several times over the years and no Dr. Has ever been concerned. Its been 2 years since the last time. Although I have never liked the looks of it, I have trusted the Doctors. Today as soon as this new Dr saw it she said it needs to come off and be sent for biopsy. It has all but the D of the ABCD's of melanoma. She then said that she wants to do chest xray, and a CT scan with dye. I ask if the mole and the lymph node could be hand in hand and of course she just said lets wait for the results. Which she said should be back by end of this week. My biopsies usually take 10 days. So that concerned me, I know the quicker the results the worse the news usually is. Im not really sure what I am asking  of you all.. Maybe any experiences similar to this? I am a nervous wreck and doing my best to be strong and positive for my daughter. But I know the beast of Melanoma, and waiting just, well it just sucks! 

Thank you! 

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/21/2016 - 8:02pm
Replies by: KimberlyVU, Carly1974, Anonymous, Janner

Hi Everyone!  I recently received a diagnosis of melanoma from my dermatologist and had a follow-up appointment with a general surgeon.  Even prior to the diagnosis, I wasn't entirely comfortable with the dermatologist (it was my first appointment with her), as she only looked at moles I pointed out and became preoccupied with removing the mole that came back as being melanoma to the point that she didn't examine any of my lower body.  She recommended a general surgeon to me, who I followed up with last week and recommended an excision surgery.  I feel like neither doctor was very thorough, but I could also be to blame as I was pretty uninformed going into my appointments.  In my defense, the dermatologist made it sound like the surgeon was just going to do another quick procedure in the office the day of my appointment.  I'm planning to find another dermatologist to follow-up with, but i'm wondering if any other test/procedures should be being considered at this point.  I'm also wondering if it's wise to follow-up with someone who specializes in melanoma rather than just a general surgeon.  Sorry - I'm feeling overwhelmed by information on the internet and underwhelmed by the information given to me by doctors, thus far.  Below are the notes on my diagnosis from the dermatologist:

Microscopic description: The epidermis shows irregular acanthosis with broad rete ridges.  There is an increase in number of basal melanocytes with dense melanin pigment.  Aggregates of melanocytes with enlarged pleomorphic nuclei are present in papillary dermis.  They are occasionally seen in lower epidermis.  A dense lymphoid infilitrate is present below the above changes.  

MART-I stain is positive in lesional cells.

Pathological diagnosis: melanoma, 0.76mm

Any advice, information, or insight is greatly appreciated! Thanks in advance!

 

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AshleyS's picture
Replies 16
Last reply 4/18/2016 - 6:18pm

Hi friends,

It has been a while since I have posted. However, I've been checking up on everyone. It's great to see lots of old names doing well but I'm always sad whenever anyone posts bad news. 

For those of you who have been given NED/NERD status, can you tell me what your plan is for the future? I'm specifically wondering what everyone is doing concerning scans, appointments, and treatment. I know all of the immunotherapy treatments are relatively new and there is no definitive answer. However, I just want to compare plans. 

After failing traditional chemo, I switched my care team and started the combo trial in March 2015. I made it through 3 rounds but was kicked off due to grade 3 diarrhea. Scans showed 95% tumor reduction in May of 2015. I then did one singular dose of ipi and will have my 23rd infusion of Opdivo tomorrow. I was given NED status in November and my scans last week were clear. My plan is continue Opdivo until June 2017 (although my doctor is toying with keeping me on indefinitely - I'm a 32-year-old wife and mother of two toddlers so she says she doesn't want to "mess around"). I'll also continue to have scans every 12 weeks for another year and a half. I take my treatments at a nearby clinic in North Dakota, but have scans and see my melanoma specialist at MD Anderson. 

Again, I realize there are unknowns - I'm just wondering what others who've reached this point have done/are doing. Also, I'm not complaining; I'm perfectly fine with remaining on treatment for another 60 years. Thanks for your help folks. 

Ashley

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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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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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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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KittyFisher's picture
Replies 4
Last reply 4/4/2016 - 3:45pm
Replies by: KittyFisher, Linny

Hi all.

I was diagnosed with melanoma in 2011. I had a wide local excision and had my lymph nodes removed after a positive sentinel node biopsy. The other nodes were not affected and that was that. I carried on with life as normal and only ever remembered the melanoma when I had to go for my checks. A lump came up about 3 months ago where I had the lymph nodes removed. I've now had a ultrasound and needle aspiration biopsy on the lump and am awaiting results.

I didn't worry last time and it hasn't bothered me since, but now I have a little boy so things are very different for me and I can't help but worry that I could get bad news.

I'm wondering if anyone has any experience of a similar situation? Is it likely that it could return where I had the lymph nodes removed?

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Patrisa's picture
Replies 2
Last reply 4/4/2016 - 11:23am
Replies by: kpcollins31, geriakt

Hey guys...

 

I just registered, but i have been following your stories for quite some time now..... It really helped me, knowing that we (my fater to be precise) are not alone.....

 

My fathers story began on October 2012, when he felt an itch and began to scratch his back like a mad man... I took a look at it and saw a black mole on top of his excisting (don t know how to say it in english) "growth" he has had his entire life.. He went to check it out and dermatoligist said it was basal cell carcinoma, nothing to really worry about.... Well, it turned out to be melanoma.....

We were so shocked, we knew nothing about the disease, except that it was deadly.... The surgeon went it the sencond time and did a wider excision, along with taking the sentinel node, which came back positive, and after that the removed all the limph nodes from his armpit which were all negative..... His stage at the time III3

He then went on Interferon and managed to take it for the whole 12 months (first month was brutal) and every doctors visit after then was OK. I have to mention that every visit to the doctors was just S -100 check and phisical exam... Nothing else....

Well, ffwd, last summer I noticed a bump on his back, fairly close to his original place of melanoma and i freaked out... He went to see a dermatologist and they assured him it was ateroma and scheduled him for operation 6 months from then....  I was kind of releived, but in the back of my mind i always thought it might be melanoma.... In november 2015 he had his regular checkup at the oncologysts and he did a biopsy, just to be on the safe side (he said its probably ateroma) and it came back posivite.... After CT, we realized he had mets in his lungs and were devestated.... We knew nothing about new treatments, just poor statistics for chemo and thats it....

BUT, luckily, he is not that old and doctors offered KEYTRUDA.... that was the first time we ever heard of it and of course we took it....

He started Keytruda on Jan, 25 this year and today received his 4th dose.... His blood works are excellent, his biggest tumor (5x5cm) is at least 70% gone, and the smaller one dissapeared..... His first CT will be in a couple of weeks, but we are quite optimistic that the lungs could be cleared too.....

I have to say that he s a real truper, positive, goes hiking every day, easts 90% healthy, drinks aronia juice every day and has no side effects of Keytruda.....

He is just a little anqsious about excercise, he thinks getting a lot of oxigene to the body, on the one side helps, but helps cancer cells to live too? What do you guys think? To excercise or not?

Thank you for beeing such a wonderful place, where one can come and really feel at home and somewhat hopeful.... Many of us come here and never post, but we cheer for each and every one of you!!!!

 

P.S. I apologize for my not so perfect English, but i know all you wonderful people don t really mind... :-)))) 

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Roxy1453's picture
Replies 4
Last reply 4/5/2016 - 9:06am
Replies by: AllysonRuth, Jubes, Roxy1453

I don't get on here very often and it's been awhile now.  I have stage IV metastatic Melanoma.  I've been fighting for 10 years now.  But I can say, for the first time, I am NED!  I took keytruda but had to stop due to colitis.  Now I find out I have arthritis in my hips.  I just thought it was old age (I'm 63).  I have never had it anywhere before.  Then, this weekend, I read that it could be from keytruda.  Has anyone had any experience with this?

"I can do all things through Christ who strengthens me." Philippians 4:13

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CCampbell's picture
Replies 2
Last reply 4/4/2016 - 2:32pm
Replies by: Janner, Anonymous

My six year old had what the dermatologist suspects to be a spitz nevus removed from her left hip on Friday. I may be putting the cart ahead of the horse, but want to be cautious and proactive. From what I've read, diagnosing and differentiating between a spitz nevus and a melanoma is very difficult, which is very unsettling for me. Given that information, I have a couple of questions:

-What is the best route to getting a definitive reading on her biopsy? Getting a second dermatologic pathologist to read the slide? Is here something more concrete that I can request? Would they do a lymph node biopsy for just a suspicion given the spitz nevus?

-How do I go about getting a second opinion with a pathologist of my choice? We're in central Illinois and I don't see any pediatric melanoma specialists near me. I would like to have it sent to St. Jude or Dr. Bastian of possible.

 

The thought of a misdiagnosis and just letting melanoma lie in wait terrifies me. Any advice is appreciated. Thank you.

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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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