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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Anonymous's picture
Replies 3
Last reply 6/18/2016 - 10:06am

I have a lot of moles on my head. They all look different from the naked eye but I saw a derm and he looked under the scope. He said under the scope they all look similar and that he's not concerned at all.

I said is it worth biopsy them and he said no. Now I will admit I'm very anxious and will always think the worst.

I am going to do monthly checks for change, was this a good decision? I was planning to remove about 3 of them but because they look similar under the scope I didn't.

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vickiaa0529's picture
Replies 11
Last reply 6/17/2016 - 12:50pm

Hi

I went for scans yesterday and was told all was clear but now I am reading the results, which my husband accidentaly took to work with him today and

 

The report says:

Lungs: subcentimeter subpleural nodules (302/26,64) without FDG activity on the prior PET/CT not definitively seen on prior PET/CT. These are indeterminate, attention needed in the follow up.

 

Yikes now I am scared all over

 

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Ace226's picture
Replies 9
Last reply 6/19/2016 - 9:45am
Replies by: Richard_K, WithinMySkin, Ace226, Bubbles, Linny, BrianP, Anonymous, SABKLYN

My father has metastatic melanoma. Originally diagnosed in 1982 but relapsed in 2014. He has had several brain tumors (treated with gamma knife) and he has been on yervoy (still had spread) keytruda (worked really well but caused colitis) and now Opdivo. The opdivo has caused less side effects but now there is concern for 2 more brain tumors and melanoma in his cerebral spinal fluid. He had been seen this whole time at UVA but I want him to get a second opinion. Can anyone please recommend melanoma specialists for advanced melanoma? Preferably on the east coast but would be willing to travel. 

Also, if any body had had experience with melanoma in the CSF and tell me about it if appreciate it. 

Thank you!!

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/16/2016 - 4:33pm
Replies by: Janner

I got a skin check shortly after finding out my grandma had two spots of carcinoma removed. I use a tanning bed regularly, so after her scare, I decided to be checked as well. 

At my appointment the dermatologist removed one mole that I hadn't noticed any changes in, I've had it my entire life, but she had pointed out that it was pink around the edges. I believe she did a punch - kind of leaving a small hole in my shoulder. Two weeks out it's still not healing well - the scab keeps falling off, I think because of it being a little deep. Anyways, not the point. 

They called me a week later telling me that it came back as moderately atypical, and that the cells are changing, not melanoma yet, but starting to form it? I'm not sure how that was worded, or how well that makes sense. 

I now have an appointment on July 6 to see their plastic surgeon to remove the skin around the mole and send it back in for biopsy. Of course, hearing this is kind of frightening not knowing much about melanoma, how quickly this spot could change into melanoma, if it even could, and what my chances of finding out that it could be melanoma after the biopsy could be. I know I'm all over the place here, it's hard to word all of this when I'm not familiar with the medical field to begin with.

I am just curious what to expect at this point. 

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mdoh's picture
Replies 11
Last reply 6/17/2016 - 5:48pm

Hello all - I'm wondering if anyone has advice on whether to take a vitamin D supplement.  Since being diagnosed with stage 2A one year ago, I've been significantly limiting my sun exposure.  Thinking I might need to take a vitamin D supplement.  Had a CT scan recently that also noted signs of osteopenia.  Any recommendations?

~ Mary

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KimberlyVU's picture
Replies 6
Last reply 6/16/2016 - 10:51pm
Replies by: MoiraM, Janner, youngann, jenny22, jennunicorn, Anonymous

I am new to the board and wanted to see if anyone had advice on how to follow a thread.

i find that I am missing responses to posts I have made as well as other people's posts that I would like to follow the replies. 

is there an easier way other than logging in and checking each post for new replies?

thank you

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lakegirl67's picture
Replies 3
Last reply 6/18/2016 - 9:48am
Replies by: desertsun, debwray, Janner

Hello, I was diagnosed with melanoma in situ on my neck in April. Had the WLE done with 8mm clear margins. I am meeting my family Dr. today - should I request any bloodwork that may be helpful in light of my recent diagnosis? Thanks!

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Bubbles's picture
Replies 8
Last reply 6/16/2016 - 2:47pm

If you like cool graphs and clear explanations of where we've been, time line of new drug approvals, explanations and data from studies looking at targeted therapy, immunotherapy, and changes in target lesion based on treatment...this PDF linked in my post is awesome!!  Out of Italy a presentation by Dr. Ascierto.  Here you go:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/if-you-like-graphs-cool-pics-and-fairly.html

Happy Wednesday!  - c

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laulamb's picture
Replies 6
Last reply 6/21/2016 - 3:08pm
Replies by: ilikepralinen, fortiz, MoiraM, KimberlyVU, Anonymous

Hello,

How do you know if your melanoma is BRAF postive or not?  Should it be on the pathology report when they removed the sental lymph nodes and wide area excision? 

Thanks!

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Anonymous's picture
Anonymous
Replies 11
Last reply 6/18/2016 - 10:00am
Replies by: desertsun, Anonymous, MoiraM, DZnDef, youngann, Patrisa, Kimba67

I look at this site every day, searching for the NED stories, the hope, the peace.  Every turn theres something new.  Some days, like today I dont want to deal with it.  Sounds so selfish.  My husband is the one with stage IV.  This is his journey.  But some days its so much.

He finished 12 weeks of Opdivo on 4/19/16.  The side effects of the meds not only perisist, they seem to have increased.  His body is covered in bumps, his depression is horrible.  He's NOT  a spiritual man and goes to see a counselor....whos a christian counselor.  This didnt help him. 

Dr did more blood work and he's also stage II Kidney disease.  About to do another MRI on his brain since he is "foggy" all the time and dizzy. 

When does it end?  I just want to run away.

Sorry to vent. 

God bless everyone here.

 

Bin

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/15/2016 - 4:42pm
Replies by: Julie in SoCal

Just had an excision with stitches for a atypical mole on my stomach.  Plastic surgeon showed me a pretty large piece of skin was taken out.  She used steri-strips and perscribed a strong antibotic 3x day for five days.  It's been 24 hours and I have a lot of bruising at the excision site.  She also said no antibotic ointment on the steri-stripes basically no additional care just watch for infection and to come back, 14 days to remove a couple outside stitches as the majority of stitches were dissolvable.  This is very different from prior care instructions for my last mole excision on my back a couple years ago.  Does this all sound normal?  Thx 

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mike.socal's picture
Replies 5
Last reply 6/15/2016 - 5:11pm

Hello, I am a 52 year old male, my battle began in January 2015. After brain surgery in March 2015 and having a tumor resected, I was diagnosed with stage IV metastatic melanoma, the primary has never been found. It has been controllable with radiosurgery to my brain, I've had 3 treatments for a few spots each time. But very recently it has gotten aggressive, I have multiple spots on my brain, multiple tumors on my lungs and one in a nerve sheath. I have never been put on immunotherapy, and believe it is past due. It looks like they are going to approve it, but they want me to do whole brain radiation first. If the MRF community could please give me their experience on immunotherapy drugs and whole brain radiation. I am in the process of getting a second opinion from a melanoma specialist not part of my health provider. Thank you in advance for your help and support.

 

MIke  So. Cali  stage iv

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Charlie S's picture
Replies 12
Last reply 6/30/2016 - 3:10am

I am done and no more.

No Cheers

Charlie S

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mjanssentx's picture
Replies 5
Last reply 6/15/2016 - 6:18pm

Just wanted to chime in with some more positive news.  My 1.75 year PET scan was completely clear.  Don't post as often because my "expertise" was Interferon and my experience has almost become "obsolete"....which I think would be considered universally good news.

Another happy news story....I met a patient in the waiting room and she told me she was diagnosed two years ago as a stage 4.  Her original prognosis was the standard 8-11 months to live.  She failed on Ipi but was doing great on Opdivo with many tumors retreating.  I had never met her before but she looked and sounded like she was doing great.  Just think, a couple of years ago...I would not have met her at all at 2 years into stage 4.

I don't think Cure is the right word yet...but hope is there.  I know there are some folks fighting for their lives out there (and we have lost some).  For the new folks here, do your homework.  The new stuff has real promise but it also carries significant challenges if not managed by a real Melanoma specialist.

For those that are Stage 1-3, I think it is safe to say melanoma is no longer a death sentence.  But you need to be vigilant.  Things like scan anxiety are very real.  Your life will never be the same after your diagnosis.  

Best wishes.

Michel

 

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