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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brendon's picture
Replies 10
Last reply 7/24/2017 - 3:42pm

I am researching places to go in the US for second opinions and what clinical trials I should consider and wondered if you kind, knowledgeable people might be able to assist.

The context is that I am stage 4, had 3 doses of ipi/nivo before stopping due to colitis. Initial response was good with 50% reduction of tumors. But after a couple of months of steroids/immune suppression, there has been some new tumor growth. 

One option is to start PD-1 (pembro) but given I have not had durable response from initial treatment, my oncologist is wondering if a clinical trial might be a better option. Any views on trials I might consider?

I am also looking at somewhere to go for second opinion. Considering places like Memorial-Sloan, Dana Farber, and MD Anderson. Any thoughts and or other suggestions? I live in Seattle but willing to travel anywhere.

Thanks so much 

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Ingekk's picture
Replies 2
Last reply 7/31/2017 - 5:41am
Replies by: Jacquie, J.bun

So I am back home from surgery. Still recovering, and my neck is looking like something from a Frankenstein movie. I dont mind it, but they removet a tooth from my lower back jaw, and that really hurts. GOing back next friday to hear what they found in the removed tissue. They told me that they could not se anything else than one large lymph when doing the surgery, so I guess that is good news. They still tell me thet the surgery are going to heal me, and they tell me that it will not likely come back again, as there is no evidence of any melanoma spreading trough the blood system. Still they recomend me to take radiation to be shure that any leftovers from surgery are taken care of. At this point there is no other treatment available for me as they think I should be free from melanoma after this surgerey. At the same time they also states, you never know for 100% with this diease.

Inge Kristian

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Photopassion's picture
Replies 7
Last reply 7/24/2017 - 11:12am
Replies by: jenny22, Photopassion, Anonymous, MichelleRHG, dmp

I was wondering if anyone knew of any good places to send biopsy slides for a second opinion? I asked my dermatologist's secretary and she acted like that was a very unusual request. I'm having a hard time finding anything useful when searching so any recommendations would be great.


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mrsaxde's picture
Replies 1
Last reply 7/23/2017 - 7:46am
Replies by: BrianP

Hello! I had my third infusion in the trial last Tuesday. I don't have much to report. Still not experiencing anything in the way of side effects, other than some occasional mild fatigue and a very mild rash on my upper chest.

I haven't had the chance to ask a question about this yet, but I have noticed that in my blood work my lymphocyte count has been increasing fairly significantly. It was below normal when I started the trial, and it has now returned to the normal range. On 5/30 the lymphocyte values were 1.18/14.8%. On 7/5, before my second infusion, they had increased to 1.44/16.4%. And on 7/18 they had increased again to 1.55/24.3%

The anti-LAG-3 antibody is supposed to help invigorate exhausted t-cells, and I can't help but wonder whether those lymphocyte values might indicate that it is starting to do its job. If anybody on this board has any insight, I'd love to hear you weigh in.

So my next infusion comes on August 1, and my scans at the end of the first 45 day cycle come on August 11. I'll be back with another update after I get the scan results, unless something significant happens in the meantime.

I hope everybody has a pleasant weekend!


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jason1635's picture
Replies 16
Last reply 8/9/2017 - 11:46pm

First, thank you for all the helpful and informative posts on this ebsite.  It has helped me become educated while I wait through diagnosis and start of treatment.


I recently had two moles biopsied through a shave biopsy at .5 cm x .4 by.1 cm deep (bisected?).

The nurse called me and advvised me to schedule surgery for melanoma with a general surgeon.  Today the surgeon shared my path report but not so much detail on diagnosis or prognosis, just surgery technique and standards.

The first mole states atypical proliferation of junctional melanocytes:  Favor melanoma in situ evolving from compound calrk nevus. lesion extends to all margins, deeper sections have been examined.  Proliferation og atypical menalocytes at dermoepidermal junction. Melanocytes are large and unevenly placed abd crowded in foci .  second population of smaller uniform melanocytes in the dermis and epidrmis associated with dermal fibroplasia.

2) #2 mole stated unusual because some junctionalmelanocytes are slightly enlarged and heperchromatic and within epidermis and papilary dermis proliferation of solitary and nested melanocytes associated with dermal fibroplasia around rete ridges.  in foci, melanocytes are large and hyperchromatc..

Thank you to all who read and can help, surgeon not really well informed on melanoma, should I ask dermatologist to do WLE or hang in there.  He advised general anethesia, hs anyone just used local and been okay.  Thanks for help on what this is and what to expect next.  This was a scary surprise and trying to learn more about these moles and others I may need taken off.  Work for military and had been overseas several years without a check up of skin in tropical/desert areas. Again THANK YOU and best wishes to all. J


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dmp's picture
Replies 5
Last reply 7/21/2017 - 10:39pm

Hi all,

I was diagnosed with a 1.15mm, non-ulcerated, superficially spready melanoma on my right inner thigh just above my knee at the end of May by the Cleveland Clinic.  About two and a half weeks later, I had a wide excision and SLNB.  One of the two sentinel nodes came back positive for rare cells.  The recommendation from my doctor was that he would do it and recommended it as the current standard of care.  I did not get specific sizing back after requesting it.  So, I went to University Hospitals for a 2nd opinion and they got all of my reports and slides from the Cleveland Clinic (the cancer centers are about a mile away from each other and they can access records between hospitals.)  The sizing that came back was that the largest group of cells was .05mm.  The cells were in the subcapsular region according to UH but were termed parychemal region in the UH report.  So, I will just assume there were some in the parychemal region and most were subcapsular.Several studies in the past decade call into question if micrommetastases less than .1mm in SLNs should even be counted as positive.  UH's surgeon recommended CLND, but they called me to schedule a PET scan after their tumor board reviewed my case.  In the meantime, I was able to speak with Dr Charles Balch through a friend of my uncle's at MD Anderson since I had a question on the Melanoma Intergroup Trial that was referenced in the MSLT-II protocol.  It turns out that Dr Balch was a reviewer on the MSLT-II.  He was comfortable stating over the phone that the risks of CLND and immunotherapies were greater than going with observation.  The medical oncologist I spoke with yesterday understood that I had gone "down the rabbit hole" to find out there is no real right decision and suggested that unless they found metastases after the CLND, she would not recommend any immunotherapies at this time.  So, doing the CLND to qualify for trials at this time doesn;t make sense.  My sister-in-law, a pediatrician, reviewed the MSLT-II study and didn't feel that a CLND was worth the risk at this time.  I had a CLND scheduled for next Monday, but I postponed the surgery when the scheduler called today as I am not comfortable with the possible risks of lymphedema.  If my tumor had been ulcerated and/or the metastases had been larger in the SLN, I wouldn't even have thought twice about the CLND.  Maybe the PET scan on August 1st will provide more information.

Should I try Mayo or MD Anderson for a 3rd opinion?  Am I stressing out too much about this decision?  I am an active person who runs, plays ice hockey once a week or more, windsurf, and race sailboats.  Is my fear of CLND complications and  lymphedema overblown?


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jennunicorn's picture
Replies 10
Last reply 7/25/2017 - 6:07pm

Got my TSH test from yesterday, it is back to normal where it usually is. Strange that it went high a couple of weeks ago. I guess my feeling extra fatigued and funky is just from the Nivo. Glad I don't have to start playing with hormone dosages. 

Free T3 and free T4 tests are also normal, they don't fluctuate much for me, always in the upper end of normal range.

Thanks for everyone's input on their own thyroid stuff :)

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

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Dore's picture
Replies 5
Last reply 7/21/2017 - 4:04pm
Replies by: Dore, Anonymous, Janner

I recently had a biopsy of a mole on my stomach.  I am scheduled for WLE on August 9.  The nurse told me that basically it was as close to a melanoma as it could be without being a melanoma.  After reading the path report, I am freaking out a bit because it pretty much says they can't exclude the possibility of it being a melanoma.  Any help deciphering the report would be greatly appreciated!!



-Compound Dysplastic Nevus, Severe Atypia

-The lesion involves the deep and peripheral edges of the biopsy.

​Please note:  The specimen shows concerning cytologic and architectural atypia. The atypical melanocytes are large and epithelioid and there are patterns of incomplete pagetoid spread. In addition a mitosis was identified within the junctional component. We cannot entirely exclude that the changes represent a partial biopsy of melanoma and wide full thickness re-excision with adequate margins to ensure complete removal and to allow further pathologic evaluation is recommended.

Microscopic Examination:
Sections show a thin biopsy of skin. There is proliferation of atypical melanocytes both singly and within nests at the dermo-epidermal junction and singly and within nests in the underlying dermis. The melanocytes are large epithelioid cells showing prominent villi. An occasional mitosis was identified at the dermal junction. There are focal patterns of incomplete pagetoid spread. Lesional cells are highlighted on Melan A stained sections.
Thanks in advance for any insight you can offer on this report!

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Bradley75's picture
Replies 4
Last reply 7/21/2017 - 5:48pm

After my latest MRI and PET, all my lung mets have resolved.  I have no FDG Uptake in my lungs at all.  A half dozen doses of Keytruda after failing the Ipi/Nivo combo have paid off.  Also, the favorite phrase for all of us here, no new mets.  That phrase from the onc never gets old.

Now for the twist.  The tumor in my back is growing.  FDG uptake is up to 13.2.  It seems the Keytruda may be slowing it, but it can't overcome it.  The tumor is causing me considerable pain and is pushing against my spinal fluid.  The tumor is in the bone of my 5th rib and kind of looks like a lollipop sticking into my spine.  After consultation, conversation, and everything else I have decided surgery is the best route.  My Mayo medical teams all say radiation is a bad idea right now.  Even the radiologist doesn't recommend radiation because we already radiated that tumor back in December and it didn't kill it.  This tumor was inoperable back in December.  It is now in a spot where the surgeon feels surgery will help.  The tumor is about 2.5 inches at its widest so there is a bit to remove.

The plan is tumor removal on the 27th or at least as much of the tumor as they can get.  They want to get me back on Keytruda ASAP after surgery in the hopes that it will knock out all the scraps left behind.  They have said radiation is a better option at that point, if needed.  This is the only cancer I have left right now, so I am going for it.  Any experience out there with this type of surgery?  Curious about any thoughts you all might have?

As always, we fight on!


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rabbits68's picture
Replies 7
Last reply 7/22/2017 - 9:27am

I went up to NYC to get me third infusion of the trial drug and was told my scan showed too much progression for me to continue. I also have a spine met that is becoming a problem and my pain level has increased. Proposal is to either radiate or try MEK combo again with Phenformin which is a clinical trial drug. I had a good run on the MEK for 18 months. Has anyone out there had a second run on this drug and been successful? I have chosen to try this route before more radiation. We should know fairly quickly if the drugs are working. Thank you for your input.


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pplexed's picture
Replies 3
Last reply 7/24/2017 - 7:53pm
Replies by: DeeVa, pplexed, Jamie1960

I recently had a 0.67 cm moll removed from my left torso the pathology report came back as follows: Consistent with compound nevi with severe atypia II.
Two mitotic figures can be observed at both levels of the lesion. The lesion extends broadly to the base margin. A nevoid melanoma cannot be excluded. Wide re-excision is recommended. Per my dermatologist he is telling me that he thinks this may be an in situ or stage 1 melanoma. What are the forums thoughts?

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Elaine Block's picture
Replies 4
Last reply 7/24/2017 - 1:20am
Replies by: Anonymous, Elaine Block, sister of patient

Hi, all -- I wanted to introduce myself.

My husband, David (age 71), was diagnosed with a melanoma on his back in May -- Breslow Depth 6.75 mm, mitotic rate 4 per mm3. He had a wide excision and SNLB in June with clean margins and no lymph node involvement.  During a follow-up visit in June with our oncologist, the onc felt a new lump between the surgical site and the lymph nodes -- we were sent for an ultrasound and then needle biopsy, which came up positive for metastatic melanoma, making him Stage IIIC.  No other suspicious areas showed up in a CT scan.  Our onc and our 2nd opinion onc considered the new site to be in transit to the lymph nodes. The new site was removed with clean margins and we're now trying to figure out the next steps.

It seems the 2 primary options are the soon-to-close trial comparing Ipi and Pembro, and the upcoming trial comparing Ipi and Nivo alone and in combination (though I read on another thread that they may be dropping the IPI alone arm).  Our greatest concern is that my husband had a bad reaction to prednisone when he received it after having gum surgery.  We're meeting with our 2nd opinion onc (at Georgetown Lombardi) again on Monday -- he's asked David to look into what the binding agent was for the Prednisone -- hoping to find that his reaction was to the binding agent, not the prednisone itself.  Georgetown is participating in both the existing trial and the new trial; our initial onc (at Inova in No. Va) will be participating in the new trial but isn't participating in the existing Ipi/Pembro trial.  

With David's possible allergy to prednisone, we're particularly worried about the side effects from Ipi.  If it's true that the new Ipi/Nivo trial will only have two arms, it looks like he'd have a 50-50 chance of getting the Ipi in either trial,  I wonder though, if he winds up being randomized into the Ipi-Nivo combination arm and has intolerable side effects, whether that would prevent him from getting Nivo alone at a later date because of the difficulty of proving which treatment he reacted to.  

If it can't be determined that David can tolerate prednisone, one other option is to choose no further treatment at this time, with very close follow-up -- if his melanoma recurs, he might be eligible to go straight to Pembro or Nivo.

It's tough sorting it all out -- I'm hoping we'll have a better sense of direction after seeing the onc on Monday, but I'm only guardedly optimistic about that!

We welcome any thoughts/advice you might have.




Husband, David, diagnosed 5/2017, stage 3C

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J.bun's picture
Replies 2
Last reply 7/21/2017 - 5:57pm

I've learned that medical professionals (doctors, nurses, techs, etc) can say things/react in ways that are either comforting or upsetting. Regardless, I do think what and how they communicate is a method of them to personally cope and provide perspective.  

So, while having a recurrence in multiple lymph nodes in my groin is not what I was "expecting" since my successful BRAF treatment & Keytruda - all my PET CT and MRI scans showed it is the only area affected. Along the way in the past week, one of the doctors said "you take the good news you can get."

At the interdiscplinary hospital I go to, my case made it to the tumor board - wherein multiple doctors from different disciplines discussed a recommended approach.  They determined I am going to follow a 3 step protocol (1) immediately go back to Taf/Mek pills to bring down groin until surgery (2) have groin surgery to get the melanoma out (3) follow-up/continue with Keytruda infusions.

I learned that this recurrence was actually different lymph nodes than those affected in Nov 2016, but part of the same region/lymphatic system in the groin.  The working hypothesis is that the Keytruda may actually be working (since the previous hypermetabolic nodes are 'dead' & melanoma not showing up elsewhere), but apparently there are some PD1 pathways that do not respond as well to Keytruda.  My doctor indicated he had seen other patients where certain tumors respond and others don't - I know several on this board have this experience.  At this point, hopefully removal of the problematic area will help me in the future...

So, I realize surgery is a huge undertaking and of course potential recovery/lymphadema - but I agreed this was the path to go on.  They said if after surgery I have another recurrence, we will then evaluate how to best target the area(s) or try out ipi/nivo again.  

It is interesting to learn from everyone on why doctors are making certain treatment decisions at specific points in time.  

Thanks for the good wishes in the prior thread.  

- J.

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Photopassion's picture
Replies 1
Last reply 7/21/2017 - 1:51pm
Replies by: sister of patient

I just received my pathology results from a mole that I had biopsied. The mole in question used to be a smallish flat mole that was uniform in color. I thought it randomly appeared a few years ago but wasn't really sure. Recently, while I was pregnant, I noticed a small part of the mole had changed and was now a dark brown that didn't match the rest of the mole. I was worried about the change and decided to have it biopsied.

Today the PA called me back to say that it was a benign Spitz nevus but they recommended removing it with 2 mm margins to be safe. She didn't give me any other details and I wasn't really prepared with questions.

After researching a bit,I read that it's very difficult to distinguish between a Spitz nevi and melanoma. I also read that they mainly occur in children (I'm 31). The pictures online really look nothing like my mole either.

Has anyone else received this diagnosis or have any thoughts? It doesn't seem right to me so I am requesting the pathology report and a second opinion. It's really freaking me out and I'm not really sure what to think. If it's not very deep then I guess getting the excision would be good if it were actually a melanoma. Ugh, I really thought this part would be straightforward :(

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Anonymous's picture
Replies 1
Last reply 7/24/2017 - 1:28am
Replies by: Anonymous

I am 3a and a had a positive SNB on the left side of my neck. I have a swollen lymph node or parotid gland on my right side. I met my ENT this week and he said not to worry that he does not believe they are connected. He is sending me for a scan. Has anyone else ever had a similar experience. If so was it melanoma?

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