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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oconnorr's picture
Replies 4
Last reply 9/24/2017 - 7:57pm
Replies by: Bubbles, Cindyco, oconnorr

My dad was diagnosed with stage IV mucosal melanoma in April 2017. He had been receiving opvido immunotherapy weekly for 18 weeks, and this week he had an MRI. 

There tumor in the maxillary sinus has shrunk, but the tumor in the frontal sinus remains stable, and they still don't feel it is resectable.  

His oncologist is suggesting follow up with a radiation oncologist to explore that option, but cautioned that targeted radiation therapy is not always effective with mucosal melanoma. 

I thought targeted radiation therapy is usually used after surgery, and if he starts it now, future surgery will not be an option.  And I know it will make him ineligible for some clinical trials. 

Does anyone have any thoughts? Advise? I'm confused and don't want him to start something that is t promising. 

Rachelle M O'Connor

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Cindyco's picture
Replies 9
Last reply 9/24/2017 - 6:04pm
Replies by: Jess58, kim1224, Cathy M, Bubbles, Anonymous, Cindyco, debwray, BrianP

Sharing an update here in the forum in case it helps someone else.

After being told no more immunotherapy for my mom due to dose limiting toxicities, we were pretty disheartened since all the advances right now are in immunotherapy.  We were offered Abraxane, which only seems to buy time (and Dr. Ribas confirmed that the hope is to slow down tumor progression).  Celeste sent me a lot of trials to look into, and I also emailed Dr. Weber at NYU who she has said will recommend trials that aren't his own (he did! he responded very quickly as well).

In short, this is where we are at right now:

1.  Leaning towards getting the Abraxane as scheduled with hope that there is synergistic effect with the one dose of Keytruda. I know there are Abraxane/Avastin trials at the Rochester Mayo Clinic, but we asked Dr. Ribas about the combo and while he thinks that the role of Avastin is currently unclear, he is open to giving it to us, with the only caveat being that insurance might not approve.

2.  Getting the tumor tested by Foundation One for mutations for targeted therapy.  Dr. Ribas says that there aren't many actionable mutations in mucosal melanomas, but it is worth a shot.  We are also looking into NCI-MATCH, I-PREDICT (supposedly a more flexible version of NCI-MATCH, and the rare tumor clinic at UCSD. Waiting to schedule the appointment with UCSD, which does all three of these.

3.  Seeing Dr. Hamid tomorrow.  He called me today and said that there may be trial options at the Angeles Clinic, so we are going to see what they are.  I have a feeling that it is the Glembatumab + Varililumab combo that Paul is offered, since my mom is excluded by other trials by her severe hepatitis.  Coincidentally, Dr. Weber told me about a varililumab + vaccine trial by Celldex in his email. 

4.  Depending on what my mom's tumor testing reveals, we may look into MEK inhibitors, which Celeste suggested.

5.  Looking into two trials with Palbociclib that Celeste sent to me.  However, these are in PA and Boston, so we have to take the traveling into consideration.

6.  Looking into OX-40 trials that my mom might not be excluded by, as suggested by Dr. Weber. Will do this tonight.

7.  Looking into a Hu5F9-G4 Phase 1 trial at Stanford that Celeste had suggested for Josh.

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BrianP's picture
Replies 13
Last reply 9/24/2017 - 12:45pm

I'm at MDAnderson right now.  Flew in yesterday morning for scans and met with Dr. Tawbi this morning.  As far as MDAnderson and getting to and from the airport I had no problems.  To be honest I couldn't tell anything had happened here from my transit from the airport.  I guess there's still a lot of problems on the west side of the city.  Everything seems pretty smooth at MDAnderson except for the Infusion Therapy department.  I waited 2.5 hours to get a port accessed and a lady next to me waited 4 hours.  Not sure if that was Harvey related or not.  The port access service is always bad but not that bad.

Scans went well.  Still stable with one tumor slightly smaller.  I'm 9 months out from my CAR-T therapy and 6 months from my last Ipi infusion and seem to still be responding.  Dr. Tawbi is extremely pleased.  Says he will be even more optimistic at the one year mark if things are good and extremely optimistic at the 2 year mark which really made me feel smart because that's exactly what I told my wife before he walked into the room.

I wanted to share this trial with the board.

Dr. Tawbi and his colleagues seem to be very optimistic about this trial at MDAnderson.  If someone has progressed on PD-1 this would be one I would consider.



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YVAN's picture
Replies 2
Last reply 9/24/2017 - 7:07am
Replies by: Staywell, YVAN

My PATHO report mentions a stage1A melanoma 0,3mm after the punch biopsy (all the rest is good: no ulceration, no regression, mitotic rate=0, noxyz, etc....  But it mentions also atypical melanocytes at the margins.... I thus go for a wide excision...But my questions are:

(1) Are atypical melanocytes at the margins = melanoma...Are these already tumor or only susceptible to become melanoma tumor (??)... My doctor's answer is not clear.....

(2) I bleeded a lot after puch biopsy...if atypical myelanocytes at the margins were indeed already cancer, could they have spread in the blood (??)

YVAN, an anxious patient...

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Anonymous's picture
Replies 2
Last reply 9/24/2017 - 3:37am
Replies by: Anonymous

Melanoma diagnostic 1a, 0,3mm with Atypical melanocytes intraepidermal present at the margins.

My question: Are these atypical cells already cancer (melanoma) or just susceptible to become cancer if not removed?


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daughter1's picture
Replies 10
Last reply 9/23/2017 - 6:52am

Hi Everyone.  My mom has mestatic melonoma in her liver and spleen.  MSK started her on Yervoy/Opdivo combo but after two doses, she was taken off due to her creatinine levels (forgive me if my spelling is incorrect.)   She then continued every two weeks with just the Opdivo and her scans are showing gradual decrease.  We are so happy that there are no new tumors and the ones that she has are slowly but surely shrinking.   Question:  My mother is complaining of horrible joint pain from her back down to her knees.  She has a difficult time getting up and literally had to stop and take a few breaks while walking to the car from the food store.   Have any of you experienced this?   The doctor seemed to be so happy with the scan results because she is responding so well.   I'm a nervous wreck and I feel badly that she is in pain. 



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TexMelanomex's picture
Replies 22
Last reply 9/22/2017 - 10:41pm

I wish this was a simple social call but I am back in the Melanoma mix after a short respite. I had a grape sized knot show up directly below my clavicle and back down to MDA today. I got the news that it was a node positive for mel...the blessing and the curse at MDA is that they result needle biopsies in about 20 minutes. CT first thing tomorrow to see what else might be going on and then discuss the battle plan with Dr. Ross and Dr. Amaria. Although I was quite content at Stage II, it looks like I have graduated.


I'm assuming that surgery is on the near horizon, but I'm sure what they are going to recommend beyond surgery. Any thoughts gang? I know, I know, there are way too many variables based on the info I gave but my mind is spinning tonight and I will know soon enough.


Although, I wish I was back here under different circumstances but even after a quick look through the most recent posts it was easy to see why this was such an inpsirational place 6 months ago.



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cberry11's picture
Replies 1
Last reply 9/22/2017 - 7:50pm
Replies by: MichelleRHG

My father recently passed away and we asked in lieu of flowers to donate to MRF.  How can I see the donations that have been made in his name?

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Sharon93065's picture
Replies 12
Last reply 9/22/2017 - 1:36pm

Thank you in advane for the help you are going to give  me, you always do.  My liver panel was thru the roof so sadly my 4th Opvio/Yervoy was cancelled and put on the Prednisone 5pack.  5 for 5 days 4 for 5 days eetc. Yesterday I was on the 1/2 for 3 more days.  Had my weekly blook work done.  Then my Dr called to say my liver numbers were up slightly and put me on Prednisone, 3 per day until he tells me otherwise. 20 mg each.  The queston is do you know i you that will delay the Opdivo every two week maintenance?

i just saw white spots on my hands, i hope I am not starting to get Vitiligo Might be scarring from all the itiching when i was getting rashes. 




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KDE's picture
Replies 8
Last reply 9/22/2017 - 7:37am
Replies by: YVAN, KDE, Janner, Anonymous

Doctor has told me that I have a melonoma in situ. The pathology report diagnosis does say in situ, however it list the pathologic stage as pT1a. So am I in situ or stage 1? The following is the info on the report. Thanks so much for any help with this. 

Final microscopic diagnosis: Melanoma; the in situ component extends to the tissue edge. 

Type: superficial spreading  

Tumor Breslow thickness: 0.35mm

Anatomic level of invasion: Clark level lll

Ulceration: absent

Dermal mitotic rate (mitosis/mm2): 0

Microsatellitosis: none identified 

Vertical growth phase: absent

Regression: absent

Angiolymphatic invasion: not identified 

Neurotropism: not identified

Tumor infiltrating lymphocytes: non brisk

Precursor lesion: none identified 

Pathologic stage: pT1a

comment: sections show a proliferation of atypical melanocytes in the epidermis and dermis. The junctional component is disposed in a confluent fashion with pagetoid upward scatter. The dermal component is present in small aggregates and single cells without maturation. 




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jc2dad's picture
Replies 10
Last reply 9/21/2017 - 10:40pm

Working diagnosis of MS in 2006. Onco at MD Anderson thinks too big of a risk to get IPI and precludes me from any trials. Rejected Sylatron so in wait and see mode. Does not make me feel "warm and fuzzy" just doing nothing. Being very aggressive with scans every 2 months and blood work monthly. No CLND going to do ultrasound every few months on nodes.

Anyone have any advice. Praying I'm one of those rare individuals that never progress.

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Anonymous's picture
Replies 4
Last reply 9/21/2017 - 9:32pm
Replies by: bridgeyb33, Janner


If you have a nevus that exhibits severe dysplasia upon first biopsy with clear margins, do you still re-excise anyway? 

I had a nevus removed and the path report came back as severe dysplasia with margin involvement thus further re-excision was recommended. But, I want to know, had the margins been clear upon first biopsy would re-excision still be necessary?



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Anonymous's picture
Replies 2
Last reply 9/21/2017 - 9:19pm
Replies by: Anonymous

Found this interesting. I had thought that melanoma arose at 50/50 chance of being from an exisiting mole vs a new one. This study shows that only 29% of existing moles turn into melanoma and most come from new moles. Mine was a new mole and aggressive, so makes sense to my personal case.

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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Replies by: Janner, hellokitty1, Anonymous

When I was 12 or so, I developed a mole on my upper arm near my arm pit. It was an ugly, black cluster of freckles. I remember learning about melanoma at 15 and eyeing that sucker very suspiciously. In my 20s, I gained 100lbs (yeah, I know). That mole now looked more speckled and spread out. The black parts were still black, but there seemed to be more white skin speckled throughout the freckles. I didn't know if it was a change or stretched skin. It took me like 8 years after the changing to get it biopsied. The changing never did seem to get worse. Like it evolved and then stayed steady for the next few years. I showed it to my derm in 2012 and he passed up biopsying it. In 2016 when he took it it was no worse than it'd been in 2012, at least not that I could tell.

The biopsy came back as having moderate-to-severe atypica and being either an atypical lentigo or an evolving junctional nevus, with the first one getting more votes when they reviewed it at conference. It's the UPENN lab, which my derm said is one of the best in the world. The path noted things like focal crowning but does not mention regression anywhere.

Is that something a path could miss or not mention? I had a WLE. It's been gone for a year. But now I'm noticing lots of moles on me fading, and rapidly.

Obvioulsy the cells that were still left on the dermis at the time of extraction are gone. But what about the regressed cells? Could those have moved to other parts of the body, turning or turned into melanoma?

I asked my new derm if maybe it never changed after all. Maybe it looked different because of the weight gain and it was moderate to severe all along. He said no way. Moles never start out severe and it must have been regression.

I am SO WORRIED about developing melanoma without primary that I decided not to have children. I don't know what else to do. If my body is eating the cells instead of keeping them trapped in the skin, how am I supposed to fight this and catch it in its earliest stages?

I know maybe no one can help me. I know maybe I have a bit of health anxiety, but if there's any advice anyone can offer at all, I'd appreciate it.

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Hello everyone xxx

As the title suggests, we are due to have a second infusion (yervoy + opdivo) on Monday, however, on the same day mom shall have a second SRS treatment. They state they can either give her her IV infusion or SRS treatment a week later because she cannot have both on the same day. 

If we choose to have the infusion on a later date, it would mean she will get her 2nd dose of Yervoy+Opdivo 4 weeks later instead of 3. 

If SRS, then there will be a 2 week gap between her first SRS and the second one (she will have her first one tomorrow). 

What would you suggest, please? Would someone with mets in brain better to have SRS or Infusion sooner?

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