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
Anonymous
Replies 4
Last reply 2/8/2017 - 3:05pm
Replies by: D1983j, Sophietx, Janner

I've had a stage 1 melanoma last year. Everything has been fine. Today I went for my 3 month check and of course had to get a biopsy. I thought I might be lucky and not have to get anymore lol anyway she said she wasn't worried but since she's would be releasing me for 6 months now and it was the only mole I had that looked different than my other moles to remove it. She also mentioned to prevent it from being something later. The mole has always been there and it is darker than my other miles but not anywhere what I had before. It's never changed or grown. I guess I'm trying not to freak out. I'm assuming my worry should be less because of everything she said and she basically just offered it to me as more precaution but still the worry is there. Thoughts! Thanks!

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/8/2017 - 1:29pm
Replies by: AshleyS, Anonymous

I'm not sure what to expect from posting this, but felt compelled to share what I'm going through if only for the cathartic act of writing it down somewhere.

This past December, at 6 weeks pregnant, I went to the dermatologist to have a small pink spot (what I thought was a pimple or ingrown hair) looked at.  The derm suggested it may be cancerous, but that if it were, it would not be melanoma given its appearance.  None the less, he attempted to remove the whole thing.

Five and a half weeks later (yes, that is how long the lab results took), I got a call from him, saying it was cancer.  I asked what kind, and nearly dropped the phone when he said melanoma.  Apparently, I am one of those rare people with non-pigmented melanoma.

I went in that day to discuss the pathology report.  Breslow depth of 0.8mm, clark level II-III, no ulceration, no mitosis.  T1a, based on the available information.  They weren't sure, however, if they had truly removed all of it with the initial biopsy.

He sent me on my way with his recommendation for the WLE, as well as an ultrasound of the nearby lymph nodes in my groin.

Terrified, I did the ultrasound - it came back clear.  Then, the WLE.  I did not have the SLNB at the time, as it was not recommended based on my initial staging (but now I'm wondering if I should have, especially with the pregnancy!)

Now, we are still waiting for the results of the WLE report.  I am 15 weeks pregnant, and reading about how much more dangerous this stuff can be while pregnant (though admittedly, there seems to be a great deal of disagreement).

I am in shock, and terrified for myself and this poor thing growing inside me.  I know that T1a should be uplifting, but we still don't have the full lab results, and I've read that an ultrasound can have a 40% false negative rate. 

How do you live with the daily fear that this is spreading and they simply haven't seen it yet?  How do you bring a child into this world, when you aren't sure if you'll be around to take care of the little one?  How do ensure you catch it early if it does spread to the nodes, so you don't wake up one day with tumors all over when you were supposedly T1a? 

I feel so lost and angry and scared.  This is my first pregnancy, and it is nothing like what I imagined. 


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Anonymous's picture
Anonymous
Replies 4
Last reply 2/8/2017 - 1:12pm
Replies by: Anonymous

Hi, i wondered if I could possibly get some clarification. My hubby is stage 3a. There is no treatment at this stage in the UK, also no trials that he would be suitable for as the minimum requirement for eligibility seems to be above 1mm metastasis. Hubby was 0.5mm. 

I guess I just wondered if there was any other way to get something like ipi at this stage? Whether Self funding maybe through a private oncologist? Or is it not even available that way? Don't know why I'm asking really as couldn't even afford to self fund if that was a possibility probably - I expect it would cost tens of thousands. 

God I bug myself with questions!

Thank you all x 

 

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Sophietx's picture
Replies 5
Last reply 2/7/2017 - 10:33pm
Replies by: Sophietx, Janner, UBContributor, Anonymous

Hello,

I had Melanoma in situ in Nov 2016. WLE and clear margins. I still get acne sometimes on my body and face. A pimple showed up about 0.5 cm near the scar. It showed up overnight. And it looks like it's healing now. It has been few days. How do I tell reocurence? Or satellite mets etc? Thanks 

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Jenine's picture
Replies 1
Last reply 2/7/2017 - 8:58pm
Replies by: Bubbles

Hello friends,

My husband has been receiving Keytruda every three weeks for 21 weeks with a shot of Peg once a week.  His PET scan last week showed no new tumors and his existing tumors did not grow in size.  Has anyone had an experience with a like treatment?    We were told to give the trial more time.   Any thoughts on response time or effectiveness?

God bless,

Jenine

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btcedarr's picture
Replies 2
Last reply 2/7/2017 - 8:03pm
Replies by: btcedarr, Janner

I had a 1b melanoma, negative SLNB in Oct. 2015 and a severe atypical mole removed Oct. 2016 with a punch biopsy and clear margins. The punch biopsy  site is still itching 4 months later. Should I be worried that something new is popping up? I am now on 6 month check ups, due to be seen In April. 

Thanks, Barb

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Bmine102793's picture
Replies 6
Last reply 2/7/2017 - 7:38pm

So we got ct scan and mri back and cancer has not spread and there was none found in the area where he had his tumor and lymph node removed. But because of the possibility there may be cancer cells floation around that arnt showing on scans we will go to cleveland clinic for a 2nd opinion and to discuss trearment so cells wont grow more. Has any one had a similar experience? What was your stage of remission. Is it possible it will stay gone for good

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Aloha14's picture
Replies 3
Last reply 2/7/2017 - 6:10pm
Replies by: Aloha14, Janner

Has anyone had Melanoma start as a blister that has liquid in it? I accidentally broke a blister that I didn't even know I had and all the fluid came out. I'm getting the area on my leg checked next week but just wondering if it could of been the start of another melanoma. 

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My 14 year old daughter had an odd looking mole on the back of her upper arm which I hadn't noticed before. It was irritated and we went to a dermatologist, Dr. John Maddox in Greenbrae, CA to check it. He shaved it off and sent it for a biopsy. Two weeks later he called and said it was a Spitz' nevi and the rest should be excised from her arm as a precaution; and that the lab was doing further tests. He called back just now (another 2 weeks later) and said that it was a Spitzoid melanoma and my daughter would have to have it cut out immediately and then they would do a Sentinel Node Biopsy and a CAT scan and a PET scan to see if it had spread anywhere. He referred all further questions to the doctor who did the biopsy and who I think will do the surgery, Dr. Mohammed Kashani, Director of the California Pacific Medical Center - Center for Melanoma Research in San Francisco. I'm waiting for a call from him. 10 AM Mon. Feb. 6, 2017. Any advice anyone can give me would be appreciated. I need to know the right questions to ask. I need to know how to talk to my daughter about this - my beautiful, straight A, rower athlete, sweet, loving daughter. I need to get my head together and figure out the right and encouraging way to frame this for her.

Julie

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Bmine102793's picture
Replies 5
Last reply 2/7/2017 - 3:05pm
Replies by: Hukill, Bmine102793, Anonymous, Shaneswife, casagrayson

So we get final results today on how far progressed fiance is of course he tells docs he feels fine no symtoms ect. Which is not true hes had a persistant cough for about 6 months now he always says its just a cold obviously its not and hes not a smoker. Another thing ive noticed is hand tremors he says its his nerves but its constant and doesnt come and go has anyone ever had this?

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Anonymous's picture
Anonymous
Replies 16
Last reply 2/7/2017 - 2:47pm

What would be a worse prognosis for stage 3. Having a ulcerated melanoma with micromets or having a macro node without ulceration. Just curious anon

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Nick C's picture
Replies 16
Last reply 2/7/2017 - 8:37am

Just wondering...has anyone tried holistic/naturalistic approach in addition to their drug therapy, i.e, supplements, juicing, coffee enamas, detox, essential oils, etc? If so, which ones?


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Hello everyone,

To provide some background, I've had this for a few years now and never really considered it to be anything serious. That was until my wife happened to see a Facebook post today that said it could be some sort of melanoma. The site of the black band doesnt hurt, and I can't really tell if its the nail that is black or something beneath it. However, it has never disappeared and I feel it has widened over time (not sure if this is an effect of growing up physically). The portion of the skin preceding the nail is also slightly darker than the other half which the band does not cover. The only reason I can think of which may have caused it was a wood splinter that accidentally entered the area, it was removed though. This was in my early 20′s I guess or maybe before that, I dont really remember. I'm 29 now and fairly healthy. Should I be concerned/get it checked?

Actual picture can be seen here:

http://imgur.com/a/ezn2v

Any help & guidance in this regard is much appreciated.

 

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Dreaf01's picture
Replies 11
Last reply 2/6/2017 - 10:28pm
Replies by: Dreaf01, Nemesis, Anonymous, Sophietx, keepthefaith11, ToddG, Janner

Hi all, I was just diagnosed with Melanoma after a birthmark on my right outter thigh started changing colors during my recent pregnancy. I am so upset with myself for waiting, my OB just did not seem to concerned about it while I was in the hospital. Anyways fast forward, my son is now 7 months old and I cannot bear the thought of leaving him. I went to the dermatologist on 11/3-/16 and on 12/14/2016 I was told that I have Melanoma. I then went to a surgical oncologist to schedule a WLE and lymph node Bx for the 29th of this month. Since my diagnosis I have truly been FREAKING out. I have had dull chest pains that seem to bounce all over (Im hoping its anxiety) and have caught this cough that is going around. I havent been eating much and have a heard time sleeping at night. I have been a google freak and I am sure you all know that it does not help the anxiety at all. The surgical Oncologist says that right now I am a stage 2, until we get the path report back from the lymph node bx. Can you all interpret my pathology report and based on your knowledge tell me what you think?

Malignant Melanoma without Ulceration

Clark Level IV

Breslow Thickness: 1.5mm

Mitotic Rate: 4/mm2

Histopathologic type: Unclassifiable

Radial Growth Phase: The presence of Radial Growth Phase cannot be assessed as the in situ and invasive components of the tumor are present at the peripheral margin

Vertical Growth Phase: Present

Tumor cell Morphology: Epithelioid

Regression: Absent

Tumor Infiltration Lymphocytes: Non-Brisk

Microscopic Satellites: Absent

NeuroTropism: Absent

A microscopic focus suspicious for angiolymphatic invasion noted.

Any thoughts would be appreciated.

 

Thanks

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Bmine102793's picture
Replies 2
Last reply 2/6/2017 - 10:22pm
Replies by: UBContributor, Anonymous

So mri showed small calcification on feontal lobe of brain but report said it may have nothing to do with melanoma and not to worry but shouldnt they atleazt biopsy it to be shure?

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