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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nlac26's picture
Replies 2
Last reply 10/1/2015 - 5:34pm
Replies by: tschmith, Gene_S

I have been reading this forum since my first diagnosis with melanoma in Feburary. I have found so much helpful information and wanted to say THANK YOU for helping a scared, nervous patient understand more of this life changing event  My initial diagnosis was in Feb. 2015 and listed as stage 3B. My husband and I had just moved to Colorado and as life was busy, I didn't pay much attention to a pesky mole on my back. BIG MISTAKE. As my oncologist says, you can't think about what you should have done, but think about now and where to go forward. I hadn't been to a DR in about 5 years and with speed, I found myself going every week. My first Pet Scan revealed the melanoma had already traveled to my left arm lymph nodes. One week later I was in surgery having them removed. They also ran a Sentinel Node Biopsy on me the morning of surgery to determine where my lymphatic system ran. Since my mole sat in the middle of my back, the tracer ran to both arms. At that point, the surgeon decided to pull lymph nodes out of both of my armpits. This was all done on a Friday. I couldn't help but get weepy in the hospital thinking about all the other people in the world going on with their happy Friday, making plans for the weekend and I'm stuck in a hospital bed, I've been poked on and ran thru a scanner BEFORE being knocked out and cut on in the OR. Not a Friday I care to repeat. Surgery went well and I actually recovered remarkable well. No complications or infections, my JP drain was removed after 4 days..I was back at work within one week! Then it came time for treatment.

I read a lot on here before I started treatment to get a feel of what other patients where going thru or using. My oncologist at the time had pushed for interferon. Had I known then, what i know now, I would have opted out or picked another treatment..but being scared and feeling overwhelmed, I went with it. Everybody is different and some do fine with interferon and it's a great option for them. Me personally, wasted 6 weeks of life feeling like crap, dragging myself to the Cancer Center for the 20 "boot camp" treatments, for it to do absolutely nothing for me. It wasn't until I was to start the self injections at home, that I had a bad gut feeling about my treatment and decided to search out a 2nd opinion. My body was shot. I was having horrible anixety attacks, something I never suffered from before. My head was constantly fuzzy and achy..I was DONE with interferon. I was pointed by a client of mine to a new dermatologist and quickly made an appointment with her. She inturn, pointed me towards the Melanoma Clinic at University of Colorado Hospital. From our fist appointment there, I have been impressed!! Sometimes I kick myself for not doing better research from the begining and starting there. We moved to Colorado to live a life of outdoor adventure, leaving all our family and friends we love behind.  When you're hit with the C word, hundreds of miles away from family and you have to face it on your own, you put your faith and trust in what the DR's are telling you is right..because you have no point of reference and you're SCARED. We did what we thought was the I try not to stab myself with "why didn't I?" too often.

My new Dr and University pulled me off of interferon. In his words, " I don't give this to my patients ...I won't make you continue it" Basically I was told that it only really delays reoccurance and that's about it. Heart crushing to hear that. I put myself thru hell with that drug. For what?!!..but ya can't look back. Now as an established patient at the Melanoma Clinic, we made a plan on moving forward. I scheduled a follow up Pet Scan at my 6 month mark of diagnois and went on with my life. Every week I started to feel better as the interferon worked to leave my system. I did a lot of research on detoxing with fruit and veggies. Anything I could do to pull that junk out of my sysytem. Sept 9th 2015 my follow up Pet Scan rolled out. Matt and I traveled down to the hospital and went thru the rountine again. The next day I had my results with the DR. 

I often tried to put into words what it feels like to stare at computer images that show spots of cancer in your body..but I can't. When the Dr showed Matt and I the 2 new spots, one down by chest wall, a little further down then the last spot and one on my back..all I could do was sit there and hold my throat and Matt's hand. I kept thinking, what is happening??? My staging was moved to 4 and I felt helpless. I didn't give myself much time to process as we immedietly went into talking about new treatment. The Dr sat with Matt and I for over an hr and covered every drug and question we had. I really couldn't ask for better caregivers at that clinic.

Tomorrow, I start my first round of Yervoy. We decided this was a good choice for me and my expectations are high! I've really appreciated reading others experiences with the drug and how side effects have happened..or not in some cases. I'll go the 4 treatments every 3 weeks and be done by Christmas. I feel in great hands this go around and can't wait to go home to Missouri for Christmas with good news!! 

Thank you again to all who particiapte on this site and answer questions. There are so many eyes reading and following along that never say anything. I was one for months and months and it helped me A LOT!  THANK YOU! And if anybody else is also a patient at University of Colorado, maybe we'll meet and say hi one day! :-)



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Tracyd715's picture
Replies 8
Last reply 10/3/2015 - 2:12pm

Has anyone had Gamma Knife treatment for a brain lesion? My husband is scheduled to have this done next Friday and was looking for some input on what to expect and how your results were.

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micheley's picture
Replies 15
Last reply 10/1/2015 - 10:09pm

Hey everyone,

 I was just diagnosed with MM end of July. Had the SLB in August, One node, out of three, came back with micromets - then had WAE/reconstruction surgery on face that left some pretty awful scars. My tumor was thick, 1.3 mm, uncerated with a O mitotic rate. Petscan clear for any distant metasteses but showed a possible second cancerous node right next to where the first node was removed. A second opinon on the the neck dissection surgery suggested that the second node could be "reactive?" Not exactly sure how it could be coming up cancerous if it's not but I hope to end up a IIIa - there's a surreal statement there! I will find out after my neck dissection surgery this coming Monday. BIG FEAR THERE!

To say that i am terrified about the future is an understatement. The first month I could hardly work or move. I was in shock I think. I spent far too much time online triying to decipher and figure out my new "normal." All illusions of certainty are gone. I am afraid most of the day. I am seeing a therapist and taking ativan and a sleeping pill but I just don't know how I am going to make it through all of this. You see I have spent most of my almost 50 years of life in fear and sadness -- over things now that seem insignificant, to say the least! Now, there is something to really fear and be sad about and I just don't know how folks get through this. I am a worrier by nature and not so religious, although, I have been working on my spirituality over the years.

Today, I am stuck in self pity, anxiety, and stress about what is to come. I am beating myself up about not addressing that mole sooner! Why did I wait? What was I thinking? I am afraid for me, my husband, and my kids.I know that each letter after that 3 staging is vitally critally for overall recurrence and survival rates and I'm jsut so terrified -- not that IIIa offers any assurances either really.

If anyone can offer words of wisdom, support or general input, they would be most graciously appreciated. How did you deal with your initial diagnosis? How are you dealing with it today? Does it get any easier knowing it could come back anytime? I feel like I'm having a nervous breakdown each day.

I hope to hear back.



Michele C Yerger

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Carol52's picture
Replies 6
Last reply 9/29/2015 - 11:50pm
Replies by: Carol52, stars, mjanssentx, Anonymous

I was Diagnosed in 2007 with Mel on my Left leg inner thigh.. had WLE done and Sentinal Node Biopsy..

Had a spot come up on my forearm - had a biopsy it was a basil Cell cancer... 

1 year ago I had a spot on my belly - biopsy reveald Mel in Situ with evedince of HMB 45 - what does that mean?

also had spot on my Back removed and it was Basil Cell Cancer as well..


MD Anderson, Is recommending I get WLE on both areas.. I have been putting off... Please give your feed back.





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Anonymous's picture
Replies 23
Last reply 10/3/2015 - 4:10pm
Replies by: DZnDef, ET-SF, Brent Morris, Bubbles, Ed Williams, Anonymous, geriakt

Anyone know of any Ipi studies currently available for patients who have 3B and have had tumor completely resected with good margins and complete lymphadenectomy?  We just missed the Ipi/novolumab study and I'm having trouble finding anything else similar.  If nothing available, have you heard of any studies coming out shortly?  We have a small time frame.  Last surgery was 9/2/15.   

Alternatively, any feedback on polynoma virus study?  There's a placebo with it so I'd like to find an ipi study if possible.  But still an option (potentially only option) and I'd be interested to hear any feedback. 

Tumor has recurred once locally so still considered stage 3....but I have a feeling this is a very aggressive tumor.  Don't want to wait and see any longer.  However, not interested in doing interferon.

Thanks for any help or feedback you have!


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Anonymous's picture
Replies 4
Last reply 9/29/2015 - 2:34pm
Replies by: Anonymous, jpg, mjanssentx

Between stage 3a 3b and 3c 


Do  they all get treatment with picc line?  Or is stage 3a only being watch every 3 months for 3 years? 


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Christine.P's picture
Replies 3
Last reply 10/3/2015 - 12:22pm
Replies by: _Paul_, Swanee, CarolA

My recent history: two primary melanomas - a large one that required a skin graft on my right calf with no spread to sentinal lymph nodes and a small one on my left arm near the elbow that had spread to sentinal lymph nodes. Had full axillary dissection of 20 nodes; only one was positive for cancer,  but it was large (a little over 6 cm). 

I just got my the results of my MRI and CT scan and, thankfully, there is currently no spread to brain, lungs, or liver. Unfortunately, though, the CT scan revealed two masses/lumps  - one in my left breast and one between my breasts just above my diaphragm (and in front of the breast bone). Mammogram and biopsies are pending. 

My question is whether anyone out there has experienced this kind of spread. I know both could just be cysts but I also know they could both be melanoma - or even a different kind of breast cancer. 

I'm not sure how this will affect my final staging and I know I can't know until the tests are back, but I can't help but be a little worried and I wanted to reach out to this kind and well-informed community. 

Thank you!

Christine P. 

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Anonymous's picture
Replies 3
Last reply 10/1/2015 - 10:22am

Does anyone know when the fda will approve ipi in combination with nivolumub? I had previously heard sept 30th but can't seem to find this info anywhere. I know it's close to being approved. Thanks 

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Debbieamccoy's picture
Replies 11
Last reply 10/1/2015 - 10:34pm
Replies by: Debbieamccoy, tschmith, Anonymous, Bubbles, arthurjedi007, dfeng

I was diagnosed 3b may/15. Had WLI AND CLND . Only my sentinel biopsy was positive. I had perfectly clear scans on 8/18 on 8/26! I had my first round of yervoy. One week later I started n/v went to the ER and with my history a ct was done that showed probable mets to confirmed by biopsy. All of my liver enzymes are out of range ast 76 alt 284 and allk phos 278. My LDH is 5280. I started Keytruda last week but  I saw my dr this morning and he mentioned his concern st this rapid change of events occurred . I am too has any one else been threw this , I'm discouraged but stil fighting 

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tangokilo's picture
Replies 4
Last reply 9/29/2015 - 5:06pm
Replies by: tangokilo, stars, looptwelve

Hi I am a 29 year old male, this past May I had a mole removed by shave biopsy and was diagnosed with Melanoma In Situ.  Looking at my path reports from the shave biopsy and the excision it seems they do not include very much detail.  I was courious of the actual depth/thickness of the melanoma and type (superficial spreading, lentigo maligna, etc.) both of which are not on the path reports.  


Below I have typed all of the information listed on each pathology report, should there not be more information on theses? Also any help deciphering what they mean?



05-28-15 Clinical info (Shave, Irregular brown papule, R/O dysplastic nevus)

Gross Description: Specimen received in formalin identified as "left anterior distal thigh" and consist of a tissue fragment measuring 9 x 5 mm. The specimen is trisected and totally submitted in one cassette.

Microscopic Description: The epidermis shows a broad confluent proliferation of mostly solitary, junctional, atypical melanocytes. MART-1 immunostain highlights these features. Controlstains appropriately.

Diagnosis: Skin, Left anterior distal thigh- Melanoma In Situ.



06-08-15 Clinical info (Excision, malignant melanoma in situ, please check margins)

Gross Description: Specimen received in formalin identified as "left Anterior Distal Thigh" and consists of a tan excision measuring 38 x 15 x 7 mm. The specimen is serially sectioned and totally submitted in six cassettes (A1=2 pcs., A2=2pcs., A3=2pcs., A4=2pcs., A5=2 pcs., A6=3pcs.)

Microscopic Description: Sections display epidermal ulceration with underlying granulomatous inflammation and early scar formation. Horizontally oriented dermal fibrosis is associated with increased capillaries and a sparse inflammatory infiltrate.

Diagnosis: Skin, Left anterior distal thigh- Biopsy site reaction. Note: There is no evidense of residual melanoma in situ. Deep and peripheral margins are free of malignancy.


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Bubbles's picture
Replies 4
Last reply 9/28/2015 - 11:42pm

As Weber alluded to in the webinar included in my last post...the synopsis thus far, of the CheckMate 064 trial with sequential Ipi followed by Nivo vs Nivo followed by Ipi was put out today at the 2015 European Cancer Congress.

Here is a post I put up that includes the abstract as well as a link to a report from OncLive.
All I can say is....Here's to the ratties.  We owe you a debt of gratitude that we will never be able to repay.
And......FDA.....Are you listening???????
My best to you all.  Celeste

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ET-SF's picture
Replies 9
Last reply 9/30/2015 - 12:26am

Hi all,

I read and hear different things about monitoring schedules for IIIb melanoma.  How often is the following typically done (and what does insurance support)?

  - CT of trunk

  - MRI of head

  - PET of trunk

  - sonogram of lymph nodes

  - physical exam

  - dermatological exam

Thanks, everyone!

SF and ET

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Southernbelle76's picture
Replies 7
Last reply 9/28/2015 - 10:55am
Replies by: Ed Williams, Anonymous, Southernbelle76, stars, Bubbles, BrianP

Hey everyone, as stated previously, I am new here. 

Last year I had a rash that kept irritating me on my back. It was itching and burning. I worked for a dermatologist at  the time so i asked her to look and see what was going on. She suggested a biopsy. For a rash? I thought.

Five days later, the path came back. Stage 3 malignant melanoma. Ulcerated. .44 on the breslows. I had an excision that same day.

I started seeing an oncologist the following week and subsequently had an SLN. That came back clear.

Path after the excision. Came back malignant melanoma in situ. What I don't understand is exactly what that means. Is it still there? Is it going to come back? 

Everytime I have a skin irritation now, I have a panic attack thinking "it's back" 

My oncologist has me coming in every three months and has now suggested an MRI I think every six months. 

A anyone have any insight they can share with me? 


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Tracyd715's picture
Replies 3
Last reply 9/29/2015 - 3:05pm
Replies by: Tracyd715, Anonymous, jpg

Hi everyone. My husband who is stage 3 finished the 20 day round of interferon this past Monday. He had been battling dehydration and nausea the whole time. Halfway through they added steroids and Ativan to his treatment. Wasn't doing any better since finishing Monday so they put him on fluids for 5 days. Ended up at the ER this morning because he still couldn't eat or drink with the nausea and hasn't slept much the past week. They did a CT scan on his abdomen and found lesions on his liver, spleen and lungs. They are hoping the cancer didn't spread but I thought that I read somewhere that this could also be an interferon side effect? Has anyone heard of or experienced this?

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Bubbles's picture
Replies 8
Last reply 9/28/2015 - 5:37pm

For you all:

I put this post together and thought it might be helpful to some of you.  It includes a webinar with slides presented by Jeffrey Weber and Sanjiv Argwala about data attained from combination therapies (both targeted and immuntherapies) vs results when used alone, side effects, why they work better together, and possible ways to choose the best therapy for the patient.  While none of it is really "new" it does put things together in a fairly concise, understandable manner.  I listed what were some of the salient points to me, if you don't have time for the hour long video.

While nothing is written in stone....we've come a long way baby!!!  Thanks again for the link, Steven.  I wish you all my best.  Celeste

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