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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Tina D's picture
Replies 12
Last reply 7/14/2013 - 9:58pm

I went for my appt in Nashville and was super pleased with the Dr and staff there. As far as we can tell I will qualify for the Merck PD1 trial. Need to have brain MRI done first ( scheduled for the 17th) then the rest of the prescreening scans and labwork the following week if the brain MRI is negative. If all goes well, I will be entering the trial around the end of the month. Merck trial has 3 arms. One PD1 2mg, one PD1 10mg, one chemo ( investigators choice).  I will be randomized into one of the 3 arms. IF I were to be randomized into chemo arm, there is a crossover allowed after 12 weeks if mel progresses during that time. I am thankful for this option and anxious to get it started.

High point of my visit to Nashville was getting to meet fellow warrior, Amy, face to face!!  :D  

I will post as I go...

As always, trusting the Lord!

Tina

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blden2186's picture
Replies 2
Last reply 7/10/2013 - 3:54pm
Replies by: Tina D, mama1960

Just 3 treatments left and I finish up my month of interferon. Fatigue was the worse of my side effects - otherwise survived
it. Drank lots and lots of fluid as interferon is so dehydrating. Ready to be done with this phase. Next is a month of
radiation to my leg.

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Just 3 treatments left and I finish up my month of interferon. Fatigue was the worse of my side effects - otherwise survived
it. Drank lots and lots of fluid as interferon is so dehydrating. Ready to be done with this phase. Next is a month of
radiation to my leg.

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Just 3 treatments left and I finish up my month of interferon. Fatigue was the worse of my side effects - otherwise survived
it. Drank lots and lots of fluid as interferon is so dehydrating. Ready to be done with this phase. Next is a month of
radiation to my leg.

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Just 3 treatments left and I finish up my month of interferon. Fatigue was the worse of my side effects - otherwise survived
it. Drank lots and lots of fluid as interferon is so dehydrating. Ready to be done with this phase. Next is a month of
radiation to my leg.

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josephsli's picture
Replies 5
Last reply 5/4/2017 - 5:46pm
Replies by: Anonymous, jessann, POW, josephsli, Janner

Hi, 

I am an Asian male, 34, and have had a mole-like lesion on my right arm since I was very young (or even likely born with it) for as long as I can remember, and more importantly, its size and shape has NOT changed at all since at least 15 years ago when my parents and I I started observing it. 

In late June, I went to see a dermatologist for a separate condition (a mole on my face), which the doctor very quickly dismissed as anything alarming but believed that the congenital nevus on my arm closely resembles the typical melanoma: blurry boarders, asymmetric shape, etc. The only counter-argument I had was that it has NOT changed at all for at least 15 years. The doctor then advised that a PREVENTATIVE full excision be performed, even it was NOT likely a melanoma due to my race, age, which I followed and the full excision biopsy was performed. 

2 weeks later (just today), the pathologist's report came back with a shocking melanoma diagnosis:

'right posterior arm, malignant melanoma, approx. 0.4mm tumor thickness with associated congenital compound nevus, 0 mitotic figures per mm2, nonulcerated, completely excised on all edges and in depth.

comment: ki-67 would be of value to better interpret the dermal cells which, although they resemble the epidermal cells, merge into areas of congenital nevus with areas of maturation.'

In 'layman's language', the doctor told me:

1) according to the 1st pathological reading of the biopsy sample, this is a malignant melanoma

2) based on info presented, it looks like a Stage I, but we have ordered staining (ki-67 is actually a protein)/enhanced specimen processing ('2nd pathological reading') to see if my melanoma cells are REALLY contained within the 0.4mm depth vs. having already spread

3) regardless of the 2nd pathological reading, a 2nd excision surgery needs to be performed ASAP to remove an even larger area, but the 2nd pathological reading will determine how deep/wide this 2nd excision will be. 

My questions at this stage is simple - could the 1st pathological reading have been 'a false positive', considering the fact that my lesion has NOT changed for at least 15 years (not months!)? I read somewhere that about 16% melanoma biopsies result in false positives, however they usually occur during partial excision (my case was full excision). Also to my 'disadvantage', both my dermatologist and his dermatological pathologist agreed with the melanoma diagnosis. 

Any opinion or references will be helpful. I have a loving and supporting yet vulnerable wife, a 3 year old girl, and a 25 day old son. Your prayers will be greatly appreciated.

Thanks

Joe

 

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LMonty's picture
Replies 3
Last reply 7/10/2013 - 4:18pm
Replies by: LesleyKS, Lauren6, Janner

Hello,

 

I was hoping someone could help me figure out what my pathology report is saying about a mole I had biopsied. I actually have two pathology reports because it was sent for a second opinion. The mole is obviously atypical, but I'm not sure about what the rest is saying. To me, it sounds like the sample was too thin for them to be sure it isn't anything worse. The biopsy was a very thin shave. The mole is on my big toe next to my nail, so it is in a bit of a diffcult place.

I'm supposed to be having a Mohs surgery to get the rest of the mole. Does this sound like the right plan? I've read that Mohs is usually done for basal and squamous cells, and for an atypical mole I should be having an excision done, but I don't know if that will be possible because of where my mole is. My other option is to try to see a podiatrist surgeon, but I don't know if that would actually be a better option. I'm supposed to make an appointment soon, so I'd appreciate any help.

 

Pathology #1 says:

Atypical epidermal melanocytic hyperplasia - See Note

Note: Biopsy is very superficial and more severe process can not be excluded. Conservation re-excision with negative margin is recommended for the treatment and proper evaluation of the entire lesion.

Microscopic Description: Superficial biopsy of acral skin with increased number of atypical epidermal melanocytres with pagetoid spread.

 

Pathology #2 says:

Irritated lentignous melanocytic proliferation with modrate atypia, involving peripheral and deep histologic edges (see note)

Note: Complete removal is recommended for further evaluation and therapy. Multiple original and deeper step sections were examined.

 

Thanks again for any help anyone can give.

 

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vicuk's picture
Replies 3
Last reply 7/10/2013 - 3:56pm

Hello everybody.

I've got some very good news to post. My best pal Helen went for her scans Thursday and results came in today. Her lung mets are stable (they were immesurable last time) and her hip tumour has shrunk again. This time last year (almost to the day) she was hit with the news that she had MM stage iv and she had 6 months to live. She has been on the GSK trial since then and has no side effects.

I tell her all the time about the people on here that are fighting the good fight and I endlessly quote CharlieS. My job is to keep her positive at all costs and that I get from you. The community you/we've got here is so knowlegeable, supportive and caring.

Many, many thanks and I think of you warriors every day.

Vic x

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Tim--MRF's picture
Replies 2
Last reply 7/9/2013 - 12:27pm
Replies by: Tim--MRF, POW

GSK just submitted an application to the FDA for their two new melanoma drugs to be used in combination.  This is a BRAF inhibitor, dabrafenib, and a MEK inhibitor, trametinib.  Studies have shown that these drugs work better in combination than either do alone.  I think most people expected they would be prescribed in combination, but getting this approval, if it is approved, will help smooth conversations about off-label usage and reimbursement.

http://www.gsk.com/media/press-releases/2013/GSK-announces-US-submission-for-dabrafenib-trametinib-combination-in-metastatic-melanoma.htmlTim--MRF

Tim--MRF

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flvermonter's picture
Replies 2
Last reply 7/8/2013 - 10:58pm
Replies by: flvermonter, POW

Hello,

We met with a Medical Onc at Florida Cancer Specialists today.  He reviewed my husbands records and suggested he take taxol while getting his radiation.  The radiation is for the lung cancer and the melanoma.  He then said after the radiation is complete start on Yervoy.  That is unless the next petscan shows other spots.  In that case then would suggest he start on the yervoy instead.  His next PETscan is a week from Wednesday. 

Any thoughts or experience with receiving radiation and taking either taxol or yervoy?

Thanks, Mary

Hugs to all, patients and care givers.

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Hi, I've seen others post their pathology reports here so I am hoping to get some help deciphering my own.  I was just diagnosed today with malignant melanoma in one mole.  I met with my dermatologist who *somewhat* explained the details of my diagnosis but was unable to tell me what stage I am in. She did explain that I will have the surgery to remove the entire mole and "that should take care of it."  I asked her if there was any indication that my cancer had spread or if there will be any follow up treatment.  She said there are no guarantees but "the odds are overwhelmingly in your favor."  I'll continue to have full body scans on a regular basis.  I asked what stage I am in and she sort of shrugged her shoulders and said "stage 1, I guess."  She gave me a copy of my report but did not offer to explain it.  Well, I am trying to focus on her positive attitude and her statement that the odds are overwhelmingly in my favor but would also like some feedback from this forum, if possible.  This is what my pathology report says:

 

"Malignant melanoma measuring 0.3 mm in thickness.

Comment:  There is a broad asymmetrical poorly circumscribed melanocyctic neoplasm composed of nests localized at the dermal epidermal junction and superficial dermis.  There is marked variation in the size and shape of the nests and areas of confluence.  There is no evidence of ulceration or vascular invasion.  The lesion extends to the lateral margins and a conservative reexcision of this lesion to ensure that it is completely removed would be judicious."  

 

I've looked at the stages chart on this site, which leads me to believe I am either Stage 0 or Stage 1A.  Can anyone clarify which one it is?  I've looked up the term ulceration but what exactly does vascular invasion mean?  What is the significance of the statement: "marked variation in the size and shape of the nests and areas of confluence?"  I will be in Mexico July 25-Aug 2 and discussed this with the dermatologist in relation to scheduling of the surgical procedure and recovery with stitches.  I don't want to put off a necessary procedure to remove cancer but I also do not want to be out of the country and have to deal with stitches, in case there are complications.  My dermatologist agreed that I would be better off not having stitches while away and said it should be fine to wait until after I return to have the procedure.  Incidentally, I have developed an infection at this same site from the scraping the doctor did last week for the biopsy and I am now on an antibiotic for the next 10 days.  She said the surgeon would not want to remove the mole until I am infection-free.  Is it safe to wait until early August for the mole removal?

Thank you for your time and advice.    

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tasjacques's picture
Replies 6
Last reply 7/14/2013 - 9:24am
Replies by: awillett1991, Anonymous, tasjacques

Hi,
My husband is getting his third infusion MK3475, but blood test came back low albumin and hemoglobin. He had bilateral swelling of legs. Anyone with this symptoms? What you and Onco did? Any help, suggestion are welcome.
Elenise (Jacques wife)

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boomer4676's picture
Replies 7
Last reply 8/26/2013 - 10:25am

Hello, I am trying to find out information about spitz nevi in children. 
In April, my then 5 year old son had what looked like a sticker on his shoulder. Because we live out in the country and he is 100% boy, it wasn't out of the norm for him. We put drawing salve and a bandaid on it and waited for the sticker to come out, only it didn't. 
Over a few short days, the sticker began to look like a wart. We treated it with Compound W. Needless to say, he is way too much boy for a small patch to stay on for the amount of time required. We spoke to our pharamsist, they reccommended freeze away. The "wart" began shrinking only to spring up again. 

 

We took him to our local doctor to have it removed. He told us it was not a wart and cut out 1mm on all sides and 1/2 cm down to remove the "wart" and sent it to pathology. After waiting almost an entire month and three pathology reports, we were told it was melanoma. Finally we were sent to Denver Children's. 

 

We had to wait almost 3 weeks for Children's get obtain the slides. They were hoping to find the lesion itself but did NOT ever find it...how nice. Our local doctor's office was SLOW getting anything sent to Denver even though they promised my son's information would be there for the appointment. Once the doctor obtained the slides and reviewed them, we were told it was a spitz nevus. 

The Denver doctors would like to cut it open again. I am simply confused as to of WHY. His surgery is set for Friday and should last an hour and a half. I am not feeling very comfortable with the opperation. Has anyone else dealt with this? 
I have read some posts about spitz nevi in children but no one has ever had them removed and then removed again! How will they know where to even opperate?!?! 

 

Thank you! 

Seriously frusterated mommy. 

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Replies by: Janner, Scott88
Hello all,
 
     I  am not formally diagnosed with melanoma yet. Have my first dermatologist appointment coming up on July 18. Put off some odd spots for several months in denial and ignorance. Now that I know better, many spots look dysplatic, many larger than the width of an eraser. Worst I feel a lump near my groin around where the lymph nodes should be.
 
I only technically have health insurance. A cheap kind which covers basically nothing beyond visits with a GP. 24, and living with mother and sister. Live in Massachusetts which has a public health program that gets a lot of praise, but from what I see is unavailable if you work and your employer offers insurance (which they're all required to now).
 
Extremely disoriented. What can/should I do at the moment?
 
My Head feels like it's in several places right now. Part's still adrift in disbelief. Another part's telling me I should rush to get some plans into place so at least some options are available.
 
Another is trying to rationalize feelings of guilt. I actually used tanning beds. Heard murmurs of the risks instead payed attention to people downplaying them. I ignored some signs for several months in denial and in doing so just incubated the problem. Feel if I suffer it's justifiable. But this is going to place a burden on my already vulnerable family they did nothing to deserve. Haven't told anyone anything yet.

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worriedmom5254's picture
Replies 9
Last reply 7/8/2013 - 4:16pm
Replies by: Thandster, Anonymous, Janner, worriedmom5254

My son is 16 yrs. Old. After having a mole removed it was sent to a hospital for tests. That hospitals pathology report said superficial malignant melanoma. They then sent the biopsy to the university of Michigan pathology dept. U of M pathology report says severe atypia.my son is being sent to the UofM melanoma clinic to have more skin and tissue removed and to have every mole looked at. How can the pathology reports differ so greatly? Please dont tell me not to worry because of the odds of a child having melanoma are so small. My niece was 9 yrs old when diagnosed with ovarian cancer...i dont believe in odds!

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