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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Ajwells's picture
Replies 3
Last reply 6/4/2016 - 6:29am
Replies by: Anonymous, Polymath, momof4boys

I went in to surgery with a melanoma on my scalp that per punch biopsy was 0.8 in depth with a mitotic rate of 1. The surgery sucked. They had to make a skin flap on my scalp so I have a giant incision on my head. I had 50 staples removed from it yesterday, but it is healing well. The sentinel nodes were behind both ears. 

Today I went to my surgical oncologist and she told me the results. When they removed the entire melanoma spot, they found it was Clark level IV, and breslow thickness 1.5. Which surprised me. Does it happen a lot that the melanoma ends up being a lot thicker than the biopsy shows? Also, one out of 8 of my sentinel nodes tested positive for melanoma cells. One little mfer. I have two scans next week. Brain MRI and full PET scan. And then another surgery to take out more of the nodes from that area on the left side of my neck.  My surgical onco also told me she would be referring me to s medical oncologist to talk about immunotherapy treatment. Which I know nothing about. Anyone with experience that could give me a little about what this consists of?  My main issue is whether I will be able to work while doing the treatment . I am running out of FMLA!  

As far as bad scenarios that could of happened today, I don't consider this the worst. But I wanted to be done dealing with this!  Next step I guess is to hope for clear scans!  

Thank you for listening I guess. I just wanted to talk to some people about this who understand the terminology.  

27 year old mother of three. Diagnosis stage 3a with the primary on my scalp. Currently receiving Ipilimumab as adjuvant treatment. 

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jade1111's picture
Replies 8
Last reply 6/5/2016 - 1:16am

Hello!!

Feeling a little overwhelemed byt the melanoma beast... My mom was going to start a trial next week for opdivo and epacadostat.. Its been 5 monhts since the orginal find of abdnormal lymph... long journey of scans, second opinion and decisions.. With decision finally made for the trial the Brain MRI was completed.. they found 5 small areas on brain and apparently one in tricky spot. They will not proceed with trial until this is taken care of.. I guess they are recommendng Gama.. all so confusing.. and then you wonder does the current place have a good department to handle this.. or do we need to Vet that aspect as well.... Anyone know about UCSF in terms of treating Brain Mets?

On the bright side.. another pet scan was done (2-3 months) from original and showed no progression. Actually the lymph gland that has now been biopesied twice had reduced in size. Maybe due to biopsies themselves.. not sure but thats something!!

Thanks so much for all the infomation on this board. i did not know much about the Brain Mets version shall we call it of Melanoma and it was very helpful to read threw and understand what was talked about today.

If anyone has words of wisdom on this Gama process would be much appreciated.. how to go about it.. and preparing the best team... and how serious are the risks.

Best to you all!!! Thanks so much for all the positive support and knowledge.

 

 

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Would all evidence of a shave biopsy done less than a month prior to WLE be gone ? I can't imagine nothing is in the 2nd biopsy to indicate a biopsy was done on that area less than a month prior. Suspect surgeon did 2nd biopsy in the wrong spot. Quite concerned since margins of 1st biopsy were not clear. Spitzoid in an adult can move into melanoma quickly from what I read. Any thoughts on this. Surgeon wants to see my son again and compare to picture he took of scar when he first consulted prior to surgery 

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/2/2016 - 2:00pm
Replies by: Rosegargala, Anonymous

I just recently shaved my head for the summer.   I noticed a pinkish bump on my scalp.  It is pretty small maybe 2-3mm at most.   I actually remember a few years back picking at the spot and thinking it might be a scab.  It never came off and when I looked in the mirror it was a pink bump. It still looks the same as it did a few years ago.   I googled the term pink bump on scalp and nodular melanoma showed up and so did spitzoid melanoma. 

 

My question is do nodular melanoma's/spitzoid melanomas grow like other melanoma's ?  So if this bump was a spitzoid or nodular melanoma It would be somewhat bigger several years later ?     I have a ton of those red, stupid cherry hemangioma's on my body as well.   So I am trying not to over react to this bump as it might simply be one of those. 

 

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pyroman251's picture
Replies 9
Last reply 6/11/2016 - 12:23pm
Replies by: jennunicorn, pyroman251, Rosegargala, Anonymous, MoiraM

Found this site because I have been browsing the internet looking for guidance. This is my first post, please forgive me. I am terrified about a mole I have on my chest, just above my right breast area. I followed up with my primary care physician yesterday, and he is scheduling me to see an Dermatoligist. This has me worried. He didn't think it quite resembled melanoma, but wasn't sure. He thinks it might be Dysplastic Nevi. Here is an image: 

http://tinyurl.com/zj74ttp

Another thing I might add, which is the scariest part. I have been having neck and shoulder pains for a few weeks now. I thought it was because I slept on my shoulder wrong (as I did in fact wake up one time with my shoulder asleep), but I have read a few stories where Melanoma hits the lymph nodes and causes this sort of pain. It is on the right side, as is this mole. 

My primary care physician did not seem to indicate the two were related. He thinks the neck and shoulder issue might be muscular. Though a dose of Flexiril did not help any.
 

Really nervous...

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warreri's picture
Replies 2
Last reply 6/1/2016 - 5:44pm
Replies by: warreri, Bubbles

Had a dr. appt today where we were going to discuss surgical options that hinged upon me being negative for braf mutation but my results came back positive for braf so now I have much more pleasant surgical options. They're going to put me on mekinist and tafinlar. Is there anything I should be wary of in these treatments? anything I should be wary of with the braf mutation in general? I hear that the braf mutant melanoma can be more resilient and aggressive. Is that true? Just wanted to share the good news and get more info on the specific mutation. Overall I'm psyched to have more treatment options available to me.

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Anonymous's picture
Anonymous
Replies 7
Last reply 6/8/2016 - 1:46pm
Replies by: geriakt, Anonymous, Mark_DC, Ed Williams, Bubbles

I have currently enrolled in a clinical study for my stage 3B melanoma.  Yervoy vs. Keytruda.  I have not yet started.  I am getting nervous about this....any thoughts/input on efficacy of PD1's for stage 3?  My original hope was the PD1 as it seems to be better tolerated?  However, I obviously want something efficacious.  I know their is a ton of expertise out there..thoughts?  Thank you...

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wifeofron's picture
Replies 8
Last reply 6/1/2016 - 9:58pm
Replies by: wifeofron, Janner, Scared99

Our 35 year old son was diagnosed two months ago with a spitzoid Nevus moderate to severe.  He recently had a wide local excision  done and no sign of the prior biopsy was seen nor any remaining spitzoid even though  margins were not clear on first biopsy. I am wondering if the appropriate area was even excised and I am also concerned because a DO  pathologist and not a dermatologist did this second biopsy .  My husband consequently was just diagnosed with melanoma one month ago and is scheduled for wide local excision Amy thoughts on this Janner ?

 

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 6
Last reply 6/4/2016 - 10:26am
Replies by: desertsun, Phil Jacobs, Janner, Anonymous

I just recently went to a dermatologist for a  mole checkup.   I read an artcile online about the signs of melanoma and noticed almost all of my moles meet the A'B'C's of melanoma.   I do not have many/if any large moles over 6mm and as far as I can tell none of my moles are evolving.

But none of my moles are the same shade and even shaped.   Some are shaped like cobwebs, some look like star fish, some are shaped like certain countries but very few are a perfect circle.   The same goes for the color.   Some are dark brown/almost black, some are light brown, some are very very light brown.... some have different shades of brown in them.  

My derm took a look at me from a distance, had me turn around, took another look.   Then examined some moles up close with a light and magnifying glass. He then took note of my hair color ( dark brown- Graying), eye color and asked me about my ethnicity ( italian, german and part irish),  Asked about  how my skin reacts to the sun and if I burn or tan, how deep I get tan etc... said something about me being a high type2-3 ??   Asked me if anything bothered me or if any of my moles itched, bled, or were growing. He then asked if anyone in my family had skin cancer ?  I said my dad had a few basal cells and he smiled and said that doesnt count.  He then sent me on my way and said everything looks good.  He told me I need to come back every 2 years for a check.

I do not know if this was enough.  I have a whole lot of moles on my body and none of them look normal in my opinion.    Should I go to another dermatologist or is this common practice among them ?  

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tibtrevino's picture
Replies 4
Last reply 6/3/2016 - 4:38pm
Backround:
 
My wife (29) was diagnosed with Stage III back in 2013 when they found a 5mm Melanoma on her scalp which was resected.  Then they found some on her arm and back  and also took it out.  All SLNB came back negative.  After that she recieved two rounds of IPI 10mg/kg and stopped due to complications.  Scans and bloodwork have been clear since then.
 
As this friday 31MAY2016:  Receieved a call from her new primary care doctor due to a move.  He called and explained that a sonogram she had a week prior showed two masses in her liver that were "highly suspicious for hepatic mets".  This floored us and today we saw her new melanoma specialist which said she needed a new full body scan, brain MRI and liver biopsy.  If it in fact shows melanoma she will begin Keytruda.
 
How effective is the sonogram when it says highly suspicious for hep mets?  I guess what I mean is, should I be bracing for the biopsy to say it is in fact mets?  I've included the verbiage from the radiologist report below.  Thank you for your time.  
 
Findings: The liver shows 2 rounded hypoechoic masses with central ring of 
echogenicity (so-called "target" or "bull's-eye" appearance) in the left lobe. One is located in the anterior subcapsular aspect measuring 0.9 x 1.7 x 0.6 cm. The other is located in the mid lateral aspect of the left lobe measuring 0.9 x 1.1 x 0.8.cm. These are new since the prior CT scans and are highly suspicious for hepatic metastases.

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/13/2016 - 4:07am
Replies by: Anonymous, Janner

Hi, hoping for some insight.  Seven years ago I had shave biopsy on a mole which changed shape during pregnancy.  I remember being told pathology was fine but I did not ask for written lab results...something I now always do.  I have a new dermatologist and mentioned this mole removed years ago.  She looked and noticed a bit of color but wasn't sure if it was part the remaining mole or scaring. Because I didn't have the original pathology results we decided to biopsy it again. Pathology came back as mild atypical, excision recommended.  My doctor is out of the office this week so the nurse called.

Is excision really necessary for mild atypical?  Would scarring for multiple shave biopsy hide more advanced atypical cells in the current pathology results?  Should I be worried this mole was more serious seven years ago?  I thinking because there are no original slides to compare to the pathologist recommended complete excision.  Thx

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JoshF's picture
Replies 14
Last reply 6/8/2016 - 5:18pm

Surgery on Friday went good. Got home yesterday and now healing. Apparently there were 2 tumors that were roughly orange size. A couple of satellite lesions on colon and removed my appendix because apparently a tumor started growing there. Also 3 very suspicious spots on/in liver. Those were not removed. Too close to vein and at this point not worth the risk. Surgeon felt it better to heal up and get on treatment quicker. All that growth in the matter of 6 months. Unreal. They're sure it was there prior just not detected. So now I'm healing, waiting for path results and have decision to make. 

I am going to MD Anderson on the 10th. I need best option possibly. How my life changed in matter of weeks. Just very depressing. Long road ahead...scared of where that may lead but will trudge on. Just wanted to give an update. Appreciate all the support I've received over past couple weeks. Praying everyone is well!!

Josh

Let's work for better treatments....for a cure!!!!

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Rosegargala's picture
Replies 4
Last reply 6/2/2016 - 8:13am
Replies by: Rosegargala, Janner, MoiraM

  This is my ct result . any input would be appreciated . I am stage 3a
             The heart, great vessels and mediastinal structures are within
normal limits.  There is a lymph node in the right hilum which
measures approximately 1 cm in short axis and is at the upper limits
for normal.  Other small mediastinal lymph nodes are also noted, not
size significant for pathology and likely inflammatory and reactive.  

 
 The left lung shows no opacification.  Previously diagnosed
opacification in the lingula is no longer seen on this examination. 
At least four nodular densities in the medial aspect of the right
lower lobe are noted.  The largest one measures approximately 1.25
cm.  These may be true pulmonary nodules versus atelectatic changes
adjacent to vertebral body osteophytes.  However, given the patient's
past medical history of malignancy, further evaluation of this
finding with PET CT is recommended.

Roseyes

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Hello Dear Friends. 

I have one question and please help me, as the last Pet scan was not as good as we waited, we are looking for an alternative way of treatment, we found Atavistic chemotherapy and Immunology by Dr. Frank Arguello, MD. we are interested, if someone treated by this methode and what is the success rate, how do you think, will it be effective after keytruda Treatment ? thank you in advance for answer, Mari and I are looking forward for your response.

 

Nino and Mari

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