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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Aloha14's picture
Replies 2
Last reply 3/1/2017 - 2:54pm
Replies by: Aloha14, debwray

I had 2 groin lymph nodes removed in Dec 2016, which then formed 3 seromas, one very large and two small ones. The surgeon said these would drain on their own and possibly seep out of the incision~neither happened. After a month the surgeon drained the largest seroma twice and it returned just as large. Waited another few weeks and had radiology drain all three seromas and they returned but much smaller.The surgeon said to return in 6 weeks to have the seromas drained one last time.

Meanwhile, after two weeks and while I was on vacation last week I became ill with the chills, blacked out while trying to get back into bed, got injured from the fall,and went to the ER. I let the ER DR know that I noticed some sort of rash over the seromas. An ultrasound was done and determined that I had skin cellulitis but that the seroma fluid was not infected. Given IV antibiotics, pill antibiotics,  and, labs, xrays, etc., and sent back to the hotel. Within the next 2 days the skin infection took off and I had a huge infected seroma over the incision area. Flew home and to the surgeon just in time before it burst and had it excised. A channel was cut into my leg to drain the fluid, and now the wound is healing from the inside out. Packing the wound daily. Well, the seromas are gone (was checked today, no fluid in my leg), will take another week  of packing the wound before it closes up. I know this isn't how it's supposed to go. 

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BrianP's picture
Replies 1
Last reply 2/28/2017 - 10:56pm
Replies by: Bubbles

Interesting article on some research Dr. Luke is doing.  Thought Celeste, Ed and some others might find it interesting.

http://www.medpagetoday.com/reading-room/asco/melanoma/63360

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AB's picture
Replies 10
Last reply 2/28/2017 - 9:16pm
Replies by: tschmith, JohnA, AB, Mark_DC, BrianP

Help! I used to exercise 2.5 hrs a day, now can't get out of bed most days and 30 min cycle puts me back in bed for several hours. I'm exhausted and my head constantly hurts. Any suggestions? My 14 yo twin boys are scared to be alone with me. 

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Anonymous's picture
Anonymous
Replies 5
Last reply 2/28/2017 - 8:54pm
Replies by: BillMFl, Anonymous, UBContributor

Hi, 
I am sorry if this is not the proper place to post this.  But I am really concerned.  I have a family history on my mothers side of Melanoma.  I also have genetic markers for Melanoma.  I do not have a diagnosis for Melanoma.  But... 

I had/have several areas that have changed and or are itching.  So I went to a Dermatologist.  He was very concerned over 4 of them but decided to biopsy 2 of them and wait for those results.  No problem.  

He performed 2 shave biopsies.  One on my back that was the most concerning to him and one on my leg.  I waited the 24 hours to remove the bandages and noticed a very dark center of remaining pigment in the one on my back.  I researched the internet as the office was closed for the weekend at the time.  Of course your mind takes you where you do not want to go.  I found myself on this site reading many stories and hoping I would have a non-melanoma story to tell.

The biopsy came back non cancer on both.  The leg one is classic benign mole. But the one on my back is a little different.  Don't get me wrong,  I am relieved but not unconcerned because in my mind, there is a portion that was not removed.  

Compound Melanocytic Nevus
Shave biopsy of skin showing an undulating epidermis. Occasional nests of melanocytes are noted along the dermal/epidermal junction absent of atypia. Nests of interstitial nevomelanocytes are noted in the underlying dermis, absent of cytologic and nuclear atypia.  

So, I went for a follow up with my dr. today.  I showed him all my pictures.  He claims he always gets all of it and that he would never leave any portion of it behind so it is impossible that this is pigment.  I asked him detailed questions.  He did get a little defensive and his response was that it was a little scab or blood.  It is absolutely not. I confirmed that he did not use silver nitrate. He said that he reviewed the slides and that they were perfect as a normal mole.  He said that there was nothing anywhere but where the lesion was located which matches  the pathology report on my leg.   (He also now says the other 2 are fine. He was worried about all 4 last time.)

This is where I lost all faith and confidence in what he said.  I believe he was referring to the leg slides if he even looked at any.  Nice enough guy, don't get me wrong.

My most important questions were;  
If this pigment remains, can it become a melanoma?  
If it becomes melanoma, how will I know?
If you didn't remove all of it, how do we know that it is normal throughout?

I do not want cancer.  But I do not want to be one that comes back a year from now and they say, oops, either. I don't want to have something left behind that could become melanoma either.  I have a family history of melanoma and I have genetic markers for increased risks as well. So this is in the back of my mind.  I have found that Dr.'s who claim they "Never" or "Always" do something are frequently wrong and unable to admit it.

So, what do I do?  
Do I accept that this is not a concern and let it go until I have reason to believe otherwise?  
Or do I seek another opinion?  
Do I push for further biopsy of the remaining pigment from another dr?

Pre biopsy
http://i32.photobucket.com/albums/d13/kjmcooper1/prebiopsy_zps7xutkhp7.jpg

24hrs
http://i32.photobucket.com/albums/d13/kjmcooper1/biopsy1_zpsuxjmg2hb.jpg

72 hrs
http://i32.photobucket.com/albums/d13/kjmcooper1/biopsy2_zpsbaoukfpy.jpg

1 week
http://i32.photobucket.com/albums/d13/kjmcooper1/biopsy10days_zps9p9js1b...

today
http://i32.photobucket.com/albums/d13/kjmcooper1/6002a0b3-97e9-4be5-95ec...

For Reference the was my leg biopsy site. So I know the difference between blood/clot and pigment. 
http://i32.photobucket.com/albums/d13/kjmcooper1/biopsy%20leg_zps1aypsia...

Any advice would be greatly appreciated. 

 

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barb3246's picture
Replies 1
Last reply 2/28/2017 - 8:19pm
Replies by: BillMFl

My background: I have had 2 MM in-situs, 4 severes and lots of mild/moderate atypia. Last week I noticed a tiny (1mm) spot on my upper breast that I never noticed before. It just looked like a dark brown dot, but when I looked at it using a magnifying glass I saw a black line running through it and several black dots on the edges. I'm not sure why it even caught my attention and made me want to inspect it closer. It really didn't look suspicious until I looked at it thru the magnifying glass. None of my other moles look like this one when magnified.

I called the derm office yesterday, and they told me I could come right in and have it checked. Well I went in and the derm said that it did indeed have black in it when he looked thru the dermoscope and he did a punch biopsy.  Now I am freaking out thinking the worst. Does the tiny size of the spot make a difference? Is there anything else it could be or are all moles/spots with black in them melanoma?

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Anonymous's picture
Anonymous
Replies 5
Last reply 2/28/2017 - 8:04pm
Replies by: BillMFl, jennunicorn, Anonymous, mrsaxde

I'm obsessing with a mole on my lower leg that it might be a nodular melanoma. It's very dark but small. I saw it back in September and actually didn't change in size, shape or apperance since then. My question is could it be a nodular melanoma even if it's stable and didn't change in the last six months?? Is the biospy necessary?

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Replies by: daughter1, Mat, Anonymous, brendon, Lddaughter, J.bun, debwray, jennunicorn

Hello, 

We are new to this whole stage 4 diagnosis and we are desperate to start a treatment. A little back story, my mom got sick at the beginning of January. After an initial CT and U/S they said she has spots and wanted a liver biopsy. The liver biopsy identified our cancer was Melanoma. She has it heavily in her liver and small spots on her adrenal gland, kidney, and 2 small spots on her lungs. Good news, the brain is clear. The biopsy was sent back for mutation diagnosis but they said we won't get that until the end of next week or 2 weeks still. We are working to set up a referral to a great university department but just feel like there is nothing we can do until we get the mutation results. Is this typical to feel like you are in limbo before treatment or is there something we should be pushing for? We keep hearing that Melanoma is unlike any other cancer so reading posts from this site have been helpful! She lost a lot of energy at the beginning so we are working on diet and rest to start getting strength back. I feel slightly helpless so I can only imagine how she is feeling right now. 

 

Thank you for reading.

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HI, my husband Steven has several brain mets, had WBRT in January, now on nivo/ipi and back on steroids because of edema in brain. So, since a few days, he gets a severe headache whenever he changes position from horizontal to vertical, for example getting up from bed. This is worse in the afternoon when he's had a nap. It suddenly started last Saturday, oncologist advised to go to ER, to check for possible bleeding of mets, but scan looked okay, tumors seem to be shrinking! But what could cause this weird pain, everytime he goes from lying down to sitting up? The headaches stay after he has gotten up. I make sure he drinks enough, so it is not because of dehydration. No other neurological symptoms. Anyone experienced the same? I was thinking of the dead tumor cells, could they cause issues? He has a total of 9 tumors, ranging from a few mm to 5 cm. And some more in his body. Tomorrow we will see the oncologist again to do blood tests and we will talk with her, but I am wondering if anyone of you has experience or ideas.

Judy Steven's wife, who is stage 4, ipi/nivo starting mid February

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TTaylor's picture
Replies 21
Last reply 2/28/2017 - 12:35pm

My mother was diagnosed this week with metastatic melanoma.  I need to get her in the best cancer center/hospital that specializes in her type of cancer.  Would like input on which of these 3 top cancer centers is best suited for the treatment of metastatic melanoma:  MD Anderson, Sloan-Kettering, or Mayo?  Time is of the essence so your insight is much needed & greatly appreciated.  Thank you, Tonya

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Anonymous's picture
Replies 1
Last reply 2/28/2017 - 11:57am
Replies by: Anonymous

Does anyone have any experience with Dr.Anna Spreafico out of PMH? We are seeing her tomorrow and wondering what to expect at the first appointment.

Janis

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km_may's picture
Replies 3
Last reply 2/28/2017 - 8:40am
Replies by: jpg, Anonymous

Hello everyone, I was recently diagnosed last week and was looking for some help with my pathology results. I have done some research online, but would love your opinions. I am 30 years old and we lost my Dad to cancer (not skin) 4 months ago. It has been very hard on us, and having to tell my family this is going to be awful. I guess I am hoping for some positive news because I have a lot of anxiety right now.

Final Diagnosis (right back/shoulder): Malignant melanoma, superficial spreading type, invasive to Clark's level II, Breslow's depth 0.4mm, nonulcerated. Radial growth phase present. Vertical growth phase is absent. Mitotic rate is 0/mm(2). The tumor is present at a peripheral biopsy margin.

I do have a couple specific questions as well, as I have my consult for wide excision tomorrow. How is is Clark's level II if there is no vertical growth? Also, it seems as though someone in my position may not get a lymph node biopsy, but I of course am terrified that it has possibly spread to them.

Lastly, I read a little bit about regression and how that is usually not a positive thing. I had an original pathology report from a smaller hospital with the diagnosis as: "Atypical compound melanocytic proliferation with regressive changes, involving 1 peripheral margin". They then sent it to the Mayo Clinic to have another pathologist look at it to "rule out melanoma". So my final diagnosis above was the one from Mayo. That pathologist did not mention anyhting about regressive changes. Does that mean they did not feel there were enough changes to worry about?

Thank you for your help in advance. I am just so scared and want to make sure that they take a big enough excision out.

 

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Everymoment's picture
Replies 7
Last reply 2/27/2017 - 7:12pm

Hi,
My mother-in-law who has stage 4 breast cancer (bones, spinal cord & brain lining) received a LETTER saying he would no longer see her. We all have no idea why!!! I've been on this forum for a really long time so I thought I would reach out to you all. Any thoughts why an oncologist could/would do this.
Thank you.

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marta010's picture
Replies 8
Last reply 2/27/2017 - 7:05pm

After 5 tremondously difficult years, my husband FINALLY is responding to treatment!  His latest PET/CT scan showed a significant reduction in the tumor activity in his cervical lymph nodes and minor reduction in his periportal and portacaval nodes.  Better yet is that his brain MRI showed stability with no new tumors.  His last Keytruda infusion was in July 2017 - had to take a break due to a sudden brain edema event that required a craniotomy and Gamma Knife.  Currently, he's continues to take Dabranib - we hope to discontinue that after his next scans in 3 months if the response continues.  His quality of life still is hampered by joint pain in the hips and knees which limits his mobility.  Would love to know what others are taking to mitigate this side effect.  Thanks.

Ann

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