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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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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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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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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Marie with 4 boys's picture
Replies 2
Last reply 4/12/2016 - 4:50pm
Replies by: ashley_k, jennunicorn

I had my WLE a week and a half ago (biopsy said in situ), and had my return with the surgeon today. We discussed pathology report. Good news - it was all in situ (biopsy said extended to the margins). Bad news, the in situ extends microfocally to the tips and lateral margins. This is in a giant congenital nevus that is fragmented like a large freckle/mole area on my arm. So, I'm now to see a mohs surgeon and a plastic surgeon to discuss my options. My surgical oncologist (who only deals with melanoma), thought the entire nevus will most likely need to be removed, and skin grafts done. The nevus is huge - covers from elbow to shoulder and half way around my arm (appx 11 in x 5 in). Anyone here had large areas removed and skin grafts? Or any other thoughts for me? Thanks so much.

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Sfern5's picture
Replies 9
Last reply 4/13/2016 - 4:12pm
Replies by: cheris, Sfern5, pookerpb, Bubbles, Anonymous

 Does anybody have any information about difficulty with a cough/coughing up blood And  endless " bronchitis" while on Keytruda?

 They postponed a couple of my treatments to put me through pulmonary exams and cardio exams and came to the conclusion I have bronchitis not pneumonitis which would be a side effect of the immunotherapy.    But it won't go away. It's been about 2 1/2 months of and was coughing and pain in my lungs. My tumors are gone but I'm exhausted. We've tried all kinds of  decongestants, steroids and whatnot. Nothing's working. Any insight would be appreciated. Thanks.

Cancer, Schmancer.

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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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Mat's picture
Replies 11
Last reply 4/12/2016 - 10:47am

So I had my first scans since I started on the ipi-nivo combo in January.  I received the first 3 combined infusions, but then had diarrhea that required the use of prednisone to get it under control.  Out of an abundance of caution, we paused the fourth combined infusion and I moved into the nivo-only portion of the treatment (had my first nivo-only infusion the same day as my scans).  I'm now 11 weeks into the treatment.  My scans were stable--nothing new and no change in my existing tumor burden (which is considered relatively low--but could always be lower!).  I was hoping for better (and continue to hope for better), but I'll certainly take it.  I feel very fortunate to have the opportunity to even try this treatment (which was only FDA approved shortly before I started).  In the meantime, my kids--who were 4 and 2 months at the time of my Stage IV diagnosis in 2013--will be 7 and 3 in a few weeks.  While I would love to get this melanoma monkey off of my back, I'm grateful for each day.

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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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