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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Adrian G's picture
Replies 3
Last reply 11/1/2014 - 11:53am
Replies by: oldblue, arthurjedi007, Anonymous





my sister has been diagnosedwith malignant melanoma in 2009 stage 3. She had 3 surgeries to removed the primary and lymph nodes. After that was receiving chimo, interferon and radiotherapy.

This august on the last CT scan a lymph node (between the kidney and spleen) was looking suspicious on the image. 

She had a surgery to completely remove the lymph node (fully encapsulted and tested positive for melanoma). Everything else looks clean. 

Does she need any adjuvant therapy after sugery? 


Many thanks


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StephyD83's picture
Replies 15
Last reply 11/1/2014 - 4:00am

Hi Everyone-

I was DX with Melanoma In-situ in March of this year. To give you the history I had a severly atypical mole on my forehead that was removed with a shave biopsy in Nov of 2012 & my Derm at that time told me it was begin & no further treatment was needded. I only just found out that it was actually severly atypical & the Pathologiest  recommened that it be removed via completed excision. This was not dont & it grew back. I went in to my new Derm in Feb of this year & she sent me to plastic suregy for removal & 2 surgeries later it was completly removed. I had found a lymph node in my neck on the same side as they Melanoma so I went to teh Dr & they sent me to Oncology PET Scan, biopsy, etc. The 1st PET was completly normal in April 2014. Now I just went yesterday for a follow up PET & this is what was seen. 

Ther are various izes axillary nodes seen with slight uptake the most prominent 13 x 7 mm in the left SUV 1.96 &  the most prominent in the right 9 x 6mm  SUV 1.61. There is increased uptake in the adnexa slightly larger in the right SUV 5.23 then the left SUV 3.40. There is a linear are of slightly higher uptake at the superior endplate of the bodies of the spine, the highest uptake is seen in T11 SUV 4.03. My referance SUV for mediastinal blood pool is SUV 2.09, Liver SUV 3.51, & Spleen SUV 2.83. Also, they did see several lymph nodes in my cervical region & in my jaw & under my jaw with no abnormal uptake.


Does anyone know what this means? Thank you in advance!!!





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SMGY1978's picture
Replies 4
Last reply 10/31/2014 - 5:55pm
Replies by: Lil0909, Becky, Janner

To date, my 8yo son has only had the mole on his scalp removed by the dermatoloist.  (Initial pathology yielded "spitzoid melanoma" - Clark IV, Breslow 2.1 mm, 3/mm mitotic rate).


Next, we're discussing the plan of action with Oncology/Plastic Surgery/Pathology.   They're tentatively scheduling surgery for Nov 7th.  Today, the Oncologist said if the FISH (fluorescence in situ hybridization) test comes back negative, they'll only do a re-excision.  If it's positive, they'll do the wide excision AND SNB.  They have a concensus that the tissue is "borderline" melanoma.  


Thoughts?   Anyone have negative FISH results, but had problems down the road?

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OpalSay's picture
Replies 4
Last reply 10/31/2014 - 4:29pm

I was just recently diagnosied with Desmoplastic Melanoma. Don't really know to much about it, or any specifics. All I know that its very rare and usually happens in elderly males. I am a 28 year old female. I am going in for surgery Sept. 13 2013 for removal and to biopsy my lymph nodes. Other than that, I really have no idea what is going on or what to expect from that. I found one other person who has been through this, but it wasn't as big or had to go through the lymph node biopsy. They told me the staging will come after the lymph node biopsy as well. 


If any of you have any more information on what to expect, I would greatly appreciate it. 

Also, they say melanoma isn't painful but mine hurts so bad, and makes my whole arm hurt. It also turns bright red and a large area around the lesion gets fire hot to the touch. It also feels like someone is burning my arm with a cigarette. I have been keeping track of the lesion for about two years now, but not sure how long it has actually been there. I started to keep track once I noticed it wasn't getting smaller, but was getting bigger and bigger. 




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BrianP's picture
Replies 7
Last reply 10/31/2014 - 4:47am

Pretty strong results.  Hopefully well be seeing phase III trials soon.  Little disappointed to see that many who had a complete response had a recurrence later on but still strong results nonetheless.  Definitely see this as a player in the future with combinations.



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KMick's picture
Replies 2
Last reply 10/31/2014 - 12:07am
Replies by: KMick, liberty04281

Does anyone remember "Lisa13" and/or know what happened to her?  I followed her posts when I was first diagnoses and then she disappeared.  Someone in the chat room thought that she may of passed but wasn't sure.  Just wondering.

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Steve2142's picture
Replies 8
Last reply 10/30/2014 - 11:19pm
Replies by: paul Lyons, kalisama, Anonymous, MattF, Mat, Bubbles, Steve2142

I met with my oncologist today after my pet scan and he advised me that my melanoma had "exploded" in a short time and has spread to my lungs, liver, and other cutaneous sites.  The number of nodules was innumberable.  I am being tested for the BRAF gene and if I have the mutation, he is suggesting a combination of Tafinlar and Mekinist.  It would be great to hear if anyone has undergone a similar treatment regiment and what their experiences have been and what side effects they experienced.  Thank you.

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DMU's picture
Replies 4
Last reply 10/30/2014 - 5:02pm
Replies by: DMU, DZnDef, Emcjones1

Went to Dr. For follow-up after surgery. Said incision was healing fine. Pathology came back clear. All other tests were fine. Said I was ok, but  must be checked every  6 months, for melanoma can show up again at anytime.  So I felt good and hope to be cancer free for a long time.


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odonoghue80's picture
Replies 19
Last reply 10/30/2014 - 4:35pm

Hi all, have a question: has anybody had chemo? and radiation to a direct tumor in your body? not the brain. 

I have a huge (grapefruit size) tumor in my groin that will not shrink. I've had most of the treatments out there (Ipi, BRAF drugs, and Anti-PD1 Nivolumab). I'm just wondering I can do? I'm not feeling great about radiation and especially the location of this tumor in my groin. Possible side effects of fertility issues, lower testosterone. Not great. 

Again, I'm feeling pretty good right now through two rounds of chemo. It just has now shrink this huge tumor - about  I'm just afraid of what happens next. 



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Kdw2012's picture
Replies 11
Last reply 10/30/2014 - 11:35am

My Doctor just called yesterday and I have 3 brain tumors. This explains the recent very bad headaches.

I am wondering what treatments are done for brain tumors?. I want to go to my appt on Thursday with info.

The doctor prescribed Dexamethasone for  swelling. He said we will have to do radiation also, but this was just over the phone yesterday and we will be discussing more at my appt.

thank you



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Owl's picture
Replies 7
Last reply 10/30/2014 - 10:48am

Dear all,

I just want to share some good news with you and give some hope to others.

My husband is in EAP Pembrolizumab (Europe) and just had his 12 week scans. The result is more than we hoped, everything (2 lymph mets in Abdomen and two huge tumor as well as smaller ones in neck/face) is almost gone. The scan report is written very technically, even the conclusion, but the doctors assured us that only one area is still visible, could be tumor rest or scar caused by neck dissection.

He is doing really well and has no side effects. The first weeks though he was not feeling good. He had a huge swelling in tumor areas, bad pain, could not sleep...he was on strong pain meds for about 4 weeks. It slowly improved and is gone since week 6 or 7. We could also see the tumors shrinking. This was the first time I was happy that they were visible. Even his facial nerve is slowly recovering.

It seems that Pembro / Keytruda is his magic potion and I hope it will be for many others.

All the best, Jenny

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Ginger8888's picture
Replies 6
Last reply 10/29/2014 - 10:43pm
Replies by: Ginger8888, rick1981, BrianP

Has anyone tried this?...I have been doing some reading on this in hoping it will be come legal in my state soon.I've read a lot of success stories..

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FayFighter's picture
Replies 9
Last reply 10/29/2014 - 8:58pm

I have come to this site for hope countless times. Hoping this post helps someone like you all have helped me. A shout out to Celeste who originally planted the seed regarding this trial.

CT scan today (8 wks out) show 30% reduction in liver lesions. 

Thank you.



Recap re my husbands diagnosis:

july 2010 melanocytic nevi Lower left calf excised (later in 2014 reread by mskcc as melanoma in situ)
derm exams/6 mos
June 2013 small nodules by excision (we had no idea we should be looking for anything like this and thought it was a vericose vein)
July 2013 bump in groin. Biopsy shows it's melanoma.
Mid August 2013 lymphadenectomy (5/19 positive) and excision of lower leg nodules.
oct 2013 start yervoy and gets all 4 cycles.  Colon issues require heavy prednisone and 2 remicades.
radiation of lymph basin nov/dec
january 2014 tumor profile NRAS pos BRAF neg
march 2013 finally tapering of prednisone
April 2014 pet shows lesion in stomach (3.5 cm) and little nodule in groin and at lower left calf.
may 21 start anti pd1 and KIR trial. 
July 2014 stomach lesion 6cm/liver lesions detected
july 20 surgery to remove stomach lesion
aug 20 start mek162/cdk4 trial liver lesions have shown progression since july
todays scans: liver lesions reduced by 30 percent

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HI Everyone

I hope some of you or all of you can come to chat tonight  Woudl love to meet you  Big Hugs,

Love and Light

Carole K

PS I am hoping some others from two other MM groups will come join us 


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