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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Raco's picture
Replies 2
Last reply 5/17/2018 - 9:16am
Replies by: Raco, Bubbles

Hi, just got my BRAF results, I logged into my care plus to see lab results and it said the following.

BRAF gene mutation results::  Mutation Not Detected

Lab Comments:
SV18-841 A1 Microdissection Sentinel Lymph Node, left deep axilla Previous Diagnosis: Metastatic Melanoma

So I see my Oncologist next Thursday May 17, 2018 for my 4th opdivo treatment.                                        Will this BRAF result change anything for treatment??

Thanks to all for helping me understand.

Robbie

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/13/2018 - 11:39am
Replies by: cancersnewnormal, Anonymous, MrG

Hey all, 

I have found it tough to find information online concerning this.

In Feburary I had a vulva biopsy come back with the results below:

​Severely Atypical Melanocytic Profileration. 
​Comment: This proliferation extends to the biopsy margin. A more aggressive lesion adjacent to the biopsy cannot be excluded. Complete excision is recommended. 

 

I was sent to a gynecologic oncologist. At my appointment I was schedued for surgery for an excision. One on the biopsy site and another area that was not biopsied a little further south where I have a cluster of 3 freckles. 

 

This just all seems like so much..Everything I read online makes this sound like you do not need an excision for aypical moles.

 

If you all could give me some advice that would much appreciatied! 

 

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BillB's picture
Replies 9
Last reply 5/12/2018 - 6:46am

Completed Keytruda infusion #14 today along with brain MRI, CT scans of the neck and body. Scan results were still clear. Scanxiety is reduced for another 3 months. I’m sure my wife will be happy about that as I understandably  get a little ornery at the end of the 3 month scan cycle. 

Tex raised the question from his post yesterday regarding how long do you go before stopping. Wish I could answer that question myself. This subject has been on my mind since January and reading some of the recent posts regarding progression just muddies the waters and my thought process. It was a subject of discussion I brought up with my oncologist today and hope the discussion helps others and stirs some additional discussion since we, and we alone have to make the final decision when to stop.

Today was my third set of clean scans (October 2017, January and May 2018 ) since I moved to stage IV in August 2017. My oncologist believes based on my initial complete response and her other patients records with Keytruda and stopping infusions that I can also stop. She is not pushing me to stop, but also doesn’t want me to develop any debilitating side effects from the treatment. So far I have just experienced some fatigue, joint pain in my hips hand, and shoulder. Nothing to deter me from pursuing my hobbies. But, she also doesn’t want it to get worse. There is some interesting reading regarding durable response on Keytruda after CR. It’s a follow up paper from clinical trial  Keynote 001. I’m  pretty sure I read the summaries on Celeste’s blog but I will try to give a link to the full paper. I have read it along with my sons and the data is positive. I also inquired about if I stopped the infusions in reference to Keynote 001 information, could I restart them if I progress. Her thought was she didn’t see why it wouldnt work again but did qualify that there is no 100% assurance with anything melanoma related. 

So after reading  the above referenced paper over and over, comparing my information against the information in the report,  I do feel that I could stop the infusions, but I just don’t have the confidence or the ........... to make the decision and stop yet. Working on that. I wish everyone else success, and the fortitude to make the right decisions.

http://ascopubs.org/doi/pdfdirect/10.1200/JCO.2017.75.6270

Bill

 

 

 

 

 

 

 

 

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VinceMart's picture
Replies 6
Last reply 5/11/2018 - 9:58pm

Has anyone tried MEK alone? I can't handle the Tafinlar and my onc mentioned possibly MEK alone.

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lamurphy1968's picture
Replies 6
Last reply 5/14/2018 - 1:15am
Replies by: lamurphy1968, Raco, dessie

Hello everyone, yesterday I had two moles removed. One is close to my ear and resembles a squamous cell carcinoma the second one looks mean and angry. It's located on my abdomen. When the dermatologist looked at it he said it was definitely cause for concern and needed to come off. I now wait 2 weeks to get the pathology report back. It's going to be a long 2 weeks. I asked him if he thought the mean and angry mole was a bad one and his response was that sometimes he's wrong so he doesn't want to say one way or another. He wants to wait for the pathology report. However, he feels that it's something that is scary looking enough to get it off and feels as though we have caught it early. So nervous!

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pplexed's picture
Replies 7
Last reply 5/12/2018 - 12:11am

Had a mole removed from my great toe.  My derma did not seem too concerned.  However, I am concerned about the finding of Melan-A and Mart I.

 

Path report:

1 fragment of tan tissue received measuring 0.8 x 0.6 cm
Compound nevus, dysplastic type, with moderate dysplasia. 
Comments:  A conservative re-excision to ensure complete removal is advised
Extending close to the base of the specimen, immunohistochemical staining reveal staining with Melan-A and Mart I that confirms the diagnosis
The pathologic process is that of single and nested melanocytic proliferation along the dermal junction and in the dermis.  Moderate cytological atypia of melanocytes is noted. Bridging and fusing of adjacent rate is noted.  Superficial fibrosis of the papillary dermis is also seen.

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maddiecmac's picture
Replies 1
Last reply 5/11/2018 - 3:27pm
Replies by: Janner

Hey y'all, I'm Maddie.

Back in April I had a shave biopsy done on a mole on my scalp and it came back as Melanoma.

In the path report, it stated depth of 0.5mm and no ulceration. The margins were poorly defined. It failed to report the Mitotic rate. My surgeon requested the mitotic rate from the pathologist.

Without the mitotic rate, the current plan of action is to excise more of the spot with 1cm margins (next week). He said that we wouldn't look into lymph nodes unless the mitotic rate came back as abnormal or if there were abnormal findings during the excision.

I was wondering if anyone else has had issues with their mitotic rate not being reported?

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guynamedbilly's picture
Replies 1
Last reply 5/10/2018 - 5:30pm
Replies by: Julie in SoCal

I said I'd post again after I got the recommendation from the tumor board. So, here's my brief treatment history. I originally had a thick tumor on the back of my scalp. It was removed in July 2017. I've been on Nivo ever since, every two weeks. I had a recurrence on the back of my scalp, near the original site, that started in December 2017, but it was so minor and did not show up on scans, so we thought it could have been a bad pimple. It disappeared and I felt it again in mid February. The first punch biopsy was negative, but the bump remained, so nearly four weeks later a second punch biopsy, twice as deep as the first was positive. So I had a second surgery in early April. The tumor was a very slow grower and didn't show any uptake on the PET scan. 1.2cm diameter, fully resectable, nothing in the margins, no sign of it anywhere else.

The tumor board reviewed my case both times, and they've recommended continuing with my regular Nivo treatment schedule, ending in August.

I'm still feeling pretty positive about my chances at this point.

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mickpatti's picture
Replies 2
Last reply 5/11/2018 - 7:44am
Replies by: ed williams, Bubbles

My brother has been diagnosed with Stage IV melanoma.  It is in his brain, lungs, liver, adrenal glands and spleen.  He has not had a PET scan.  I have been readung about the BRAF gene mutation.  Have asked my brother's doctor if he was tested for it.  Doctor said tumor testing was backed up and they haven't gotten to his yet.  Doc said besides that - whether he is BRAF positive or not, he would still administer Opdivo.  He said Opdivo is the best option out there for melanoma.  My brother has 6 brain mets. The biggest was removed because it caused him to lose the use of his right arm, balance problems and a seizure.  Is it common to do whole brain radiation? They have ordered 10 radiation treatnebts so far.  Reading the side effects have really freaked me out.  Does all this sound right ?  Do we need to go somewhere else?

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SBeattie's picture
Replies 6
Last reply 5/11/2018 - 11:27am

Greetings...I haven't posted since late 2013 when diagnsed with recurrent lung mets (recurrent after a VATS procedue in 9.2013). I entered aipi/nivo clinical trial; found out after the fact I'd been double-blinded to the ipi//nivo arm and completed 2 yrs of every other week infusions. However by the end of the first year (2014) I was NED ( small nodules bilt in lungs). I've continued with every 3 month CT scans and have remained NED. Next CT scans are scheduled for this coming Monday. Last week saw my regular oncologist and my LDH was elevated, a tad over the upper limit but during the past 4 yrs it has not even been near the upper limit, rather it has stayed in the mid-range between the high and low end (i looked back to the last 12 values at both my oncologist's and melanoma specialit's offices) it is now about 35-30 units higher then its been over the past 12 months and previuos to that, all normal ... the only times its been eleveated was in correlation with metastasis...today I had a 2cm diameter round, not irregularly so, cutaneous lesion removed, sent for biopsy...in 2012 had a seborrheic keratosis, or so my derm, now since retired, said..removed in exact same place..returned couple of years ago, stable and and recently changed (larger, dark, bled if top cap removed, you know the drill!)...my oncologist who works closely with my melanoma specialist just ordered  PET scan for next Thursday...

My question is...IF I am experiencing a recurrence after having been a complete responder to NIVO/IPI...WHAT ARE MY TREATMENT OPTIONS? I'm a, freaking out....THANK YOU up front Bubbles etc. NO words can describe my grafefulllness for whatever beedback this note may generate

 

Sally

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/10/2018 - 11:40am
Replies by: Anonymous

So i have a lot of moles on my body all flat normal light brown or skin colour..i had a very small mole on my stomach it was flat and light brown..i noticed yesterday it turned black with a reddish brown tint around the edges and grow bigger..i went to the doctors and im waiting on an app for a specialist..i used to be a big sunbed user.
Can anyone relate or help me understand is this melanoma cancer?

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Abbygx2589's picture
Replies 3
Last reply 5/11/2018 - 8:41pm

Hello All,

I just wanted to express my gratitude for this board and post an update on my dad (I posted once before). He just made the 2 year anniversay of beginning treatment (ipi/nivo combo). He is stage IV and had numerous body (pancreas, lung, muscular, subcutaneous) and brain mets. The brain mets were treated with cyberknyfe with the exception of one lesion which was not treated  and instead left to be watched for his study which was assessing if the combo has efficasy in the brain (stressful). In his case so far so good! He did suffer from pituitary dysfunction which renders him unable to produce cortisol but we will take that over the alternative any day! There is also some radiation necrosis as some of the lesions were on the larger side. The lung has remained mostly stable, the remainder of his body lesions have disappeared and the brain lesions have shrunk but remained visible.  

So this brings me to the question what to do next? He was just informed that his trial has ended as it has reached the two year mark. He can either stop treatment and see if there is regrowth, have a PET scan to see if there is active cancer (but since you cant PET scan a brain we wouldn't know for sure if the spots in the brain are dead tissue or cancer), or attempt to receive nivo monthly through insurance. Since he is not "NED" I am concerned about him abandoning treatment. Has anyone experienced a similar experience?

I know no one can answer what to do for us, but I wanted to reach out to everyone and give hope to those who are stage IV with multiple brain mets. We are so happy to have my father here two years later and in good health. 

Thank you! 

 

 

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aquamak's picture
Replies 6
Last reply 5/12/2018 - 7:44am

Hello my friends:

Just doing a little writing therapy here.  Today I went for a PET/CT scan and will get the results Friday morning from my doctor.  When, and if all is well, I will officially be 5 years NED from Stage 3C.  The problem is that today after the scan was done, they re-scanned my head and neck so my heart is raising.  I asked the technician afterwards and he said he was sorry to make me upset but they supposedly had to redo the CT and PET of the head because he said I must have moved and the images weren’t lining up.  He claims that is all but I am so nervous!!!  Anyone have a similar situation?

Mela-No-More

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Anonymous's picture
Anonymous
Replies 7
Last reply 5/16/2018 - 12:33pm

Has anybody found relief from joint pain, specifically knee pain due to Keytruda? I have been off Keytruda due to joint pain and being NED since October of 2017 after 13 treatments. I was put on low dose Prednisone to slow my immune system down and then my melanoma expert rheumatologist prescribed plaquinal and hydroxychloroquine which after 2 1/2 months I had to stop because my liver enzymes went sky high and the combo failed to give me any relief. A cortisone shot in my knee was short-lived. I’ve done physical therapy, water exercise, purchased new orthotics, taken tumeric, CBD oil, ibuprofen,  acupuncture, chiropractics, rest, ice, heat, and compression sleeves. Both knees are inflamed and it is painful to bend my knees, walk, climb stairs and sleep. Any suggestions out there? 

Jackie Trimmer

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/9/2018 - 10:05pm
Replies by: SABKLYN

I just noticed about a week ago that I have a small black spot under one of my toenails.

https://imgur.com/a/DoUJPwl

I know that no one on here is a doctor but I don't want to go to the doctors for something foolish . Should I wait and see if it grows out or go to the doctor now ?

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