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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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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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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SMGY1978's picture
Replies 2
Last reply 11/8/2014 - 6:34pm
Replies by: Carole K, StephyD83

We're in Illinois (Chicagoland).   Our 8-yr-old had a mole on his scalp, diagnosed as Melanoma.  (Stats 2.1 Breslow, Clark IV, 3/mm mitotic index).   Normal bloodwork, so we're optimistic.  Tomorrow, they'll confirm his surgery date/details.  Tentatively, they're planning to do a wide excision & SNB on Nov 7th.   I'll keep you posted.

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Anonymous's picture
Replies 7
Last reply 11/2/2014 - 8:14am
Replies by: kalisama, SStamps, casagrayson, Anonymous

2 weeks ago we found out my mom's melanoma has returned to her spinal fluid and ventricle of her brain (diagnosed via two separate spinal taps and brain MRI). She has a history of one large brain met, but had that gamma knifed and then a subsequent brain surgery a little over a year ago. Her doctor said she now has leptomeningeal disease, and we're waiting on scans (Fri: PET; Mon: spine MRI, brain MRI) to see if it's elsewhere in her body. Does anybody have anyone I could reach out to for help?? I've been searching through posts and, per other posters, have seen that Dr. Papadopoulos at MD Anderson is someone we should try (since he does intrathecal IL-2 radiation to the spinal fluid). My mom is my everything, and I have never been so scared in my life. She's battled melanoma for the last 5 years and has done interferon, il-2, ipi, gamma knife...She's both Braf and CKit negative. She has completed one round of Temodar and is set to start the second round next week...WBR has also been discussed... I just don't know what to do and I feel like her oncologist has no idea what to do either! :( Any help, resources, uplifting stories, etc. would be greatly appreciated!!! 

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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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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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BrianP's picture
Replies 17
Last reply 11/3/2014 - 9:01am

I mentioned I would post something after returning from the immunotherapy conference so here goes.  Sorry if it’s a little long but I know Joe will appreciate it ;).

I really enjoyed the Immunotherapy Patient Forum Hosted by GRACE and MRA in Chicago on Oct 26.  They talked about having more of these in the future and if they do I highly recommend it.  The presentations will be available online in a couple weeks so I won’t regurgitate all the presentations, nor could I if I wanted to, but I’ll try to list a couple things that struck me as interesting.  I’ll post the link to the presentations when they do become available.  Here’s a link to the agenda:

I think it was Dr. Pardoll from John Hopkins who talked about a renaissance occurring with vaccines partly driven by some success with combining them with anti-inhibitors.  Expect to see more trials in the future.

Dr. Wolchok made a comment that especially struck a chord with me when he said, “Stable disease is OK, in fact it’s good.”  He said this is an indication that the immune system is effectively working.  One of the reasons I went to the conference was to see if I could get any answers on what the future holds for anti-PD1 patients with long term stable disease.  Basically the answer was, “We just don’t know yet.”  Guess I should have anticipated that but I wish every once in a while someone would say what their gut feeling is.  I know why they don’t but it would be nice if they would.  The only Dr. I have met along this journey that has done that for me is Dr. Weber at Moffitt.  I did see a couple case studies presented which showed cases where tumors dramatically shrunk but never went away.  When they were biopsied they basically found “battle field debris”.  Apparently this “debris” is not very soluble and could stay there for a long time.

Most of us know melanoma has a very high mutation rate.  A presenter talked about why some cancers respond to drugs like Anti-PD1 and others don’t.  Each time a cancer cell mutates it expresses a different type of protein which gives the immune system another chance to recognize the cancer as the enemy.  They think this might be one reason why melanoma and other cancers such as lung-cancer are responsive to immunotherapy.  This highly mutative characteristic of melanoma topic also came up in discussing why in some patients some tumors respond while others continue to grow.  They still cannot explain why this happens other than it being a result of the different mutations.  One of the doctors advocated for patients who find themselves in this situation to consider donating their tumors to clinical study in the event they succumb to their disease.  As you can imagine having a patient with some tumors responding and some not and being able to study those tumors to determine the differences could unlock the key to many mysteries.  Apparently this type of tumor donation must occur within 6 hours of death.  If you are interested in participating in something like this I would talk to your clinical study doctors.  They didn’t give much detail about how this is done but if anyone thinks they might be interested and can’t get anywhere with their doctors let me know and I’ll reach out to MRA and see if they can shed more light.  Along the lines of mutations and having some tumors that respond and some that don’t, it was emphasized the importance of repeating biopsies when new tumors grow in order to see what type of mutations and what type of antigens are present.  I think this is more important to the clinical trial doctors than the patients because other than knowing the Braf mutation I’m not sure what we as patients can do with the knowledge of what antigens are being presented.

A couple forecasting stats thrown out by Dr. Pardol I thought were interesting: By 2025 70% or greater of patients with cancer will receive immunotherapy.  Greater than 95% of immunotherapy potential has yet to be mined.  Another quote that was attributed to Dr. Wolchok was that we are at the “end of the beginning of immunotherapy treatment.”  I think what he means by this is we’ve just kinda finished the introduction of this Immunotherapy book and now you can expect things to really start happening. 

Dr. Pardol talked about immunotherapy and the ability to create an immune system memory but stopped short of saying that’s what’s happening with any of the inhibitor blockers available now.  He said combination therapy is the future.  One thing Dr. Wolchok said that I thought was interesting is he never imagined that the Anti-PD1 drugs would be effective as they are.  I think this is a reflection of how complicated and dynamic the immune system is and how surprising it was to him that only blocking one inhibitor would have such a profound influence not only with melanoma but a variety of cancers.

Dr. Hellmann gave a good presentation on the history of immunotherapy.  During the presentation he mentioned a mouse study combining IPI and Tvec that’s had amazing results.  Not sure if human trials have started but I think you can expect to see some in the future if not already.  I learned during his presentation why all these drug names end with “mab”.  “Mab” describes a monoclonal antibody (i.e. Ipilimumab , nivolumab, pembroluzimab)

During question and answer session the panel was asked if there was still a role for Interferon and IL-2.  Panel seemed to agree there still was a role but leaning more toward combination with an inhibitor and more so if we can narrow which subset of patients will respond.

Panel talked about PD-1 and PD-L1 which I think they said are getting similar responses.  I thought PD-1 was getting a little better response.  Maybe  Celeste can verify.  One thing Dr. Wolchok said is we may see PD-1 and PD-L1 combination in the future.  Sounded redundant to me but he said the ratio of PD-1 and PD-1 ligand is not a 1 to 1 ratio so some type of cocktail of anti-PD-1 and anti-PD-L1 at the appropriate ratio may have better results.

That’s all for now.  All and all a great experience.  It’s very uplifting  to see the optimism in person of some of these great minds in the field of immunotherapy.  The forum was first rate all the way from the colored printed binders of all the presentations they gave to all the attendees, the thumb drive they gave all the attendees which contained all presentations, and the amazing food they continued to put out all day.  And all this for just a $25 registration fee.  Amazing. 

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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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democat's picture
Replies 10
Last reply 12/9/2014 - 4:35pm

Does mitotic rate impact how fast melanoma will return? I was diagnosed as 3A in January 2013, but told that I was more like a 3B because of my very high rate of mitosis. Does that make it more likely that my melanoma will recur (if it does) sooner rather than later?



Stage IIIa/IIIb

since 1/2013



Stage IIIa/IIIb

since 1/2013

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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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sharon0803's picture
Replies 1
Last reply 10/29/2014 - 9:16am
Replies by: Anonymous

Hi All,  I have not been on for a while.  I do need some help please; I am looking for a Melanoma Dermatologist in the NW Chicagoland area, even the near suburbs.  


Any suggestions would be greatly appreciated!


My onc has been doing the screening , but I believe I should be seeing a dermatologist for routine checks.





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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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Lisa - Aust's picture
Replies 1
Last reply 10/29/2014 - 9:37am
Replies by: Owl

Hi Everyone,

Just looking for some info/experiences/evidence!

My husband Craig has been on MK-3475 for around a year now and has luckily had a complete response.

His oncologist has raised the possibility of him coming off the drug, monitoring and re-introducing if he has a reoccurance.

At this stage it is just an option he has offered (with permission from the drug company), giving us some anecdotal evidence of a few people coming off and continuing to be stable/remain clear (He mentioned mainly people who have come off due to side effects etc, so the discovery of the ongoing response has actually been incidental). Theoretically he is thinking that perhaps the drug has 'done its job' - but obviously it hasnt been around long enough to really make a statement like that.

Does anyone know of any evidence out there/own experiences etc regarding this? 

If we went ahead, I think my hubby will be the first person in our location (Perth, Australia) to go down this path. At this stage, I am not sure if we want him being the guinea pig!



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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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