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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Replies by: Svegas, Janner

I was diagnosed with melanoma on March 17, 2014.  I had a small pink lesion on my nose that did not itch, did not bleed, but just did not go away.  Finally in January I thought I felt something strange going on in that area, so made an appointment to have it checked out.

Dermatologist did shave biopsy because she did not think it was anything, but because of what I told her, she decided to send in biopsy.  She was very surprised when it came back as melanoma.  Tumor present in deep and lateral margins of the thin specimen.  Diagnosed as superficial spreading by dermatopathologist (and even discussed at a dermatopathology conference).

Excision done on April 2.  Plastic surgeon did not suspect tumor would be deep, and because of that and it being on my nose, he did not do a SLNB.  He went for as close to 1 cm margins as he could without cutting into the cartilage.  Did full thickness skin graft from clavicle area. Pathology (from a pathologist, not dermatopathologist) came back as superficial spreading, 1.95mm Breslow thickness, Clark's level IV.  Only info on margins said "the closest margin is the underlying deep margin which is more than 2 mm from the invasive melanoma".

I decided to go to MD Anderson Houston to see if a SLNB could still be done, as I have read that lymph flow might change after reconstruction, and that finding SLNs in face can be difficult.  Last week I had lymphoscintigraphy, and CT of neck.  Also had chest Xray and LDH bloodwork.  MD Anderson dermatopathologist reviewed slides and changed diagnosis to lentigo maligna melanoma, 2.5mm Breslow thickness.

I am waiting to hear from MD Anderson doctor as to whether SLNB can be done, and if the group of doctors (melanoma and head and neck) think further excision is necessary/ beneficial.  I really find the lentgo maligna diagnosis strange after two superficial spreading diagnoses, and especially as it did not look like LMM (of course, it did not look like any melanoma I have ever seen pictures of).  Everything seems to be moving so slow, I don't get any sense of urgency.  The original dermatologist never contacted me again after giving melanoma diagnosis, and the plastic surgeon just cares about how well the skin graft looks. 

I would appreciate any feedback on SLNB after excision, and also whether change to LMM seems strange after two SS pathology reports.  Thank you.

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gomerwife's picture
Replies 6
Last reply 5/9/2014 - 9:00am
Replies by: gomerwife, Treesie, Anonymous, arthurjedi007, AnitaLoree

Hi all,

My husband started this journey August 2011.  He has undergone surgery, radiation, Immuntherapy.  Overall most days have been good and life has been good, enjoying our days and taking special trips.  Since January he has been declining.  He is more tired.  is having pain from cancer in bones, and is loosing weight.

I wonder if anyone can tell me what to expect next?  I know we don't know for sure.  But when should I look for more support,?  He is so tired most days he just rests but I worry about him when I am working.

We are going for more scans on Tuesday and he may be on another dose of Yervoy.

 

Thanks for any info.

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ljhncj12345's picture
Replies 3
Last reply 5/9/2014 - 9:07am

I had to bring the love of my life and best friend home on hospice over the weekend. He was responding to Tafinlar Mek combo but one of his brain mets started bleeding last week. He made the decision to come home on Hospice. Thanks to everyone on this board for all of your help. I was not a frequent poster but got lotsof support and help  from many of you the last year and a half

 

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starletwoman2007's picture
Replies 2
Last reply 5/9/2014 - 4:02pm
Replies by: kpcollins31, mary1233

Hi I have been hearing all the good things about Pd1 but wondered whether any patients have found it successful and how they have found it x

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Randy437's picture
Replies 3
Last reply 5/9/2014 - 4:48pm
Replies by: tcell, kpcollins31, gaby

My first grandchild was born this morning (number 2 on the way in August.)  When I moved to stage IV 6 1/2 years ago, I wasn't certain I'd live to walk my daughters down the aisle, much less see grandchildren.  NEVER GIVE UP.

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Jayjame's picture
Replies 4
Last reply 5/9/2014 - 7:59pm
 
 
My dad just found out he has stage 4 melanoma. Doctor said the disease already spread from his rectal to liver and I saw a lot of spots in his liver that doctor can't do the surgery. I'm so worry. He has only one option for treatment is ipilimumab (yervoy.) Doctor said that medicine only 10%-15% response. If the medicine respone, he can live 6-7 years. If not, he is done.

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aquamak's picture
Replies 3
Last reply 5/9/2014 - 8:15pm
Replies by: SABKLYN, aquamak, gaby

I am officially 1 year NED today!  I know it is a small step but it is a big one for me.  One year ago I was in surgey at MSKCC having a neck dissection and parotidectomy.  I chose watch and wait and participated in a Phase 1 Dendritic Cell vaccine at MSKCC.  I have been scanned evry 3 months with the exception of my anniversary this month (oncologist does not want to do scans this time as no symptoms and last 2 scans were clean).  Shooting now for 18 months and longer!

Mela-No-More

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gaby's picture
Replies 4
Last reply 5/10/2014 - 7:10pm
Replies by: Teochasse, gaby, Fen

Hi! My husband was diagnosed in 2012 stage3a melanoma , because he had micrometastasis in the sentinel node , the rest (12)  were clean. He had in 2012, 38 years old. He started in October 2012 with high doses of pegylated interferon for two months and after that continuous average dose to date. He was positive despite the side effects of pegylated interferon and was determined to complete the two years of treatment. He had from the diagnostic CT every 6 months thank God for all normal except when some nodes increased in size. So the oncologist  decided to make a pet. The result was very bad, there are many hot spots in the pelvis iliac chains, with SUV 2,7  other 2,1 other 1,5. The internal organs are clean.

The oncologist said he can not be certain that these nodes have melanoma and he can not make biopsy because nodes are too small. So he recommended repeat the pet in two months.  The oncologist believes nodes shine in the pet because they are inflamed by interferon. Also said that the iliac nodes can not be removed with surgery, that's very bad news….. you know if iliac nodes can not be removed with surgery?

So, Today we have the report of the second PET, and I am very very nervous ... If you increase suv is very bad news, your prognostic will be worse. I have fear because they can not remove the lymph. My husband has no options? my husband is very worn by treatment with pegylated interferon. He's not in good physical condition even though he has 40 years old.

Someone had a recurrence in nodes that can not be removed with surgery?

I have much fear. I feel that the situation has no control.

Regards

Gaby (from argentina)

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vicuk's picture
Replies 2
Last reply 5/11/2014 - 8:49am
Replies by: Anonymous, SABKLYN

I've not posted for a bit. Helen's scans have gone to every 3 months instead of every 2 and she is still doing really well. She is on GSK Tram/ Dab trial and has been for coming up to two years now. From being told she had 6 months to live with drugs to where we are now...She had her latest scan yesterday and we got results today and everything is stable/ reduced to a fatty deposit. Long may it last!!!

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michaelinsocal's picture
Replies 20
Last reply 5/11/2014 - 8:45pm

Hello everyone. Forgive me if this topic has been asked before. I am scheduled to undergo Interferon Alpha treatments next month.

it will be a 12 month program, 4 weeks of beonh given the drug through IV and 11 months of self injected shots. 

Ive done quite a bit of research and understand the side effects from the most common to the severe. I'd like to get feedback as well as any advice on how to deal with it initially and any helpful tips to survive the entire 12 month process.

i am planning on returning back to work, however just part time and claim partial disability until I can work myself back up to a 40 work week. I work retail grocery and being on your feet for 9 hours a day will be a challenge.

 

thanks in advance. Any feedback is appreciated.

Michael

 

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Mzimm1234's picture
Replies 4
Last reply 5/11/2014 - 9:54pm

Hi everyone! I have a worrisome situation that I would love feedback on. I'm wondering if any of you have had a similar experience. 

I was diagnosed with melanoma in situ on my right forearm almost a year ago. I had the WLE and have had regular skin checks since. I've had many moles removed but so far no others have come back melanoma. This past week I woke up one morning with a large, tender lymph node in my left groin. It seemed to pop up overnight. I immediately though the worst--melanoma.

I visited my dermatologist the next day and we scheduled a biopsy for next week. He was encouraging, noting that if the in situ had spread, which would be extremely unusual, it would likely have affected the nodes under my right armpit. He said he would be much more concerned if this were the case. 

I am trying to remain calm until next week, but I keep jumping to the worst case scenario. I have also had a pretty bad cold for the past week or so, could the lymph node have swollen due to infection? If anyone has had similar experiences or any insight I would really appreciate hearing from you. As always, the waiting is the worst!

Thanks so much!

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/12/2014 - 12:01am
Replies by: casagrayson, jmmm, Anonymous

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Grace999's picture
Replies 3
Last reply 5/12/2014 - 2:19am
Replies by: Grace999, Anonymous

Hi all,

i recently embarked on what was to be a 3 month trip around the globe... About two weeks ago while taking a shower, I noticed that a mole on the inside of my leg- that once had been raised, the color of my skin, but seemingly harmless- had turned a light brown color. A couple of days later, I noticed it had become even darker with a crustiness growing on top of it. I was burned very badly in this area about a year ago and have been keeping an eye on this thing ever since...

See it here: https://www.flickr.com/photos/77986407@N05/14169595603/

If I were at home, of course I would have it checked out immediately. However, I have about a month and a half left in my trip (which is very wide and taking me to places which don't necessarily give me access to good healthcare, let alone dermatologists). I'm wondering if this is so pressing that I need to return to the states immediately to have it looked at? How quickly does this grow or spread?

Thanks for any advice.

Your nervous traveller,

Grace

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