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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jennunicorn's picture
Replies 2
Last reply 4/14/2016 - 12:01pm
Replies by: jennunicorn, Tamlin

This has been an eventful day in the SF Bay Area for immunotherapy news... so I had to share this too

I honestly feel incredibly grateful every day that I live so close to such a great research hospital, UCSF has been so wonderful (after some not so  great experiences elsewhere).

And now to read they have a whole immunotherapy program and clinic that will help more than just melanoma patients live their lives after their diagnosis. So awesome! Highly recommend anyone on the West Coast to check out UCSF if they need a good place for clinical trials, treatment, or just second opinions.

https://www.ucsf.edu/news/2016/04/402411/new-cancer-immunotherapy-clinic...

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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JohnA's picture
Replies 11
Last reply 4/16/2016 - 9:24am

My wife (diagnosed anal mucosal melanoma november 2014, WLE, local radiation, adjuvant chemo cisplatin +Temodar), just newly diagnosed with Mets in lungs, liver,  rib and brain (3 small lesions). C-Kit+ BRAF-

We've consulted with two oncologists now and both have recommended the ipi-nivo combo.

A few questions, if some of you could chime in it would be very helpful:

1) does brain involvement change response rate for these immunotherapy drugs?

2) we are very concerned about side effects, chemo and radiation left her with colitis, which has just recently cleared up. This is also a major side efect in the combo as we understand it, with some people even having a spontaneously ruptured colon.

--does it make sense to consider pembro or nivo alone before the combo, to reduce the likelihood of side effects?

--or is this too potentially dangerous, so we must go at it with everything available (the combo) and risk the side effects?

Our oncologist says they are unpredictable so it seems hard to go with the 'wait and see what side effects occur' plan.

3) she may have the option of particpating in a trial in which she is assigned to the group which has the combo treatment being recommended anyway.  Any reasons NOT to do this?

Thanks so much for your help everyone.

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Edwilcox's picture
Replies 5
Last reply 4/14/2016 - 10:48am
Replies by: Jewel, swissie, Anonymous, Bubbles, Janner

I was diagnosed with stage IIIA melanoma last September. I go in for CAT scans every 3 months and so far everything is no-evidence-of-disease. Before the melanome hit me, I had a bad knee, it's only gotten worse. Will having it replaced change the odds of melanoma recurrance?

Thank you

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Anonymous's picture
Anonymous
Replies 8
Last reply 4/22/2016 - 4:17pm
Replies by: lakegirl67, Janner

It all started by visiting my Derm for the first time in 6 years for a full body check up. I'm 49 with a a lot of sun damge and regrettably used tanning beds as a teen. He didn't like the look of a "freckle" on my neck. He did a shave biopsy and here is the report:

Gross desription: a shaved portion of skin is received, inked for margins and submitted complete in one cassette with transverse sections taken. .9x.9x.1cm

Microscopic exam: there is a proliferation of atypical melanocytes within the basal layer. Some of these cells are seen migrating upward through the epithelium. These are changes seen in melanoma-in-situ arising within a dysplastic nevus. The lesion is completely excised.

Note: although excised, reexcision is recommended.

Diagnosis: Atypical melanocytic hyperplasia (melanoma in situ) arising within a dysplastic nevus, completely excised. (SEE NOTE)

My Dr. was on vacation so another Dr in the practice gave me the news and assured me that this was "NOT a   melanoma" and that "This added diagnosis was added by the pathologist to ensure that it would be treated as a melanoma in situ but your mole does not have all the criteria needed to make the diagnosis of melanoma.I realize that sounds odd,  keep in mind the pathologists intent is to ensure adequate treatment."

So an appt was set up for yesterday with my Dr. to have the WLE. When I met with him, he told me that it was melanoma in situ and that the pathologist was using "old terminolgy". What the heck?? I went through with the procedure because the treatment is is the same for either AMH & MIS. I think he did 8mm margins and I have a 4 inch incision on my front neck area!

He reassured me that this would take care of it, but I am not so sure I feel reassured about anything right now. I'm scared that these results will show something more sinister. I fear that there will be a reoccurance and I have a lot of questions. Can anyone offer advice. Why the difference in interpreting the path report? I called the path lab today but they won't let me talk to a path. I want to know because it matters to ME if this a Melanoma diagnosis or not!! Am I missing anything? Does this seem like a good path report in terms of info provided? Thanks!

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jennunicorn's picture
Replies 3
Last reply 4/13/2016 - 9:47pm

Just saw this and got pretty excited since this awesome news is happening in my own backyard. I love when super wealthy people put their money in the right places! :)

http://www.usatoday.com/story/news/2016/04/13/billionaire-announces-250-...

 

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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cheris's picture
Replies 4
Last reply 4/14/2016 - 2:12pm
Replies by: cheris, Sfern5, BrianP

Hi, All,

I have read this forum consistently for years, and I finally registered.  Such good info.

I will be having my 16 infusion of Keytruda, and I am so surprised at how sickly I feel.  I'm on my second bout of bronchitis.  My thyroid reading is very low, my blood pressure and glucose are high but my LDH is 125.  It's never been that low.  I'm having a PETCT and MRI Friday, earlier than usual because of my symptoms.  My oncologist mentioned a vacation from treatment, and I automatically said no.  I felt like it would be an experiment.  Any thoughts?  Thanks.

Cheris

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Patrisa's picture
Replies 3
Last reply 4/13/2016 - 5:18pm
Replies by: Scooby123, Patrisa, BrianP

Hello everybody!

 

I was just wondering how does one know if the tumor burden is high/low?

My fathers oncologyst doesn t use that terminology, so i m not sure where does he stand...

He has a melanoma on his back and some in his lungs (we don˙t know how many of them, because all his reports state just mets in the lungs... is that high or low?

He s  currently on keytruda and has no side effects, first pet scan is scheduled for may.....

 

Thank you very much for  the info....

 

Patrisa

 

 

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jade1111's picture
Replies 15
Last reply 4/14/2016 - 12:57pm

Hello!

My mom was recently diagnosed with Stage 4 Melanoma. It is currently in 1 inguinal lymph node, right adrenal and liver (2 small lesions). Though this is stage 4 and not good it does not seem as bad as it coud be. We have talked with a couple of different Drs as well as a complemtary care Dr and looks like choices are as follows. Wondering if anyone has any input on the following therapies and how they figurd out in initial treatmet process how to proceed. It feels overwhelming!! Excuse my spelling and improper use of med references. Still learning med lingo.. They say the names so fast in appointments its a blur!

-Anti Pd1 therapy (keytruda) solo? We have heard different stats on how effective this is. And are concerned about side effects. Currently she feels fine, just swelling in leg..We have been told this is a good time to start treatment but it seems scary wheone someone feels fine to then take on the potential serious side effects. But at the same time have heard the therapy works better when not as heavy load to deal with? IS there a harm in trying this first.. Because one Dr was pushing the clinical trials..

-Clinical Trail: Find a Trial that uses combo meds? Will she be excluded for trying Anti Pd1 alone first? What are advantages? Isnt a cinical trial riskier in some ways.. side effects wise. And then to stil manage care locally if doing out oof area.

-Targeted Immune therapy: Not sure postiive for BRAF yet. Heard these work well but may not last as long?

-Immune Therapy and Infusion (AntiPD1) combo... I guess this is a trial? 

-Advocate for ablation/cyberknife in the groin, adrenal and liver.. or one area. Looking for a Abscopal effect. Not sure whom would go for this type of treatment and if an argument coud be made for it in these locations.

Thanks so much for all information on this board. Its overwhelming in the appointments but with what I have read and try to understand on here I feel a little more educated.. probably like others on here.. not what I was planning to learn so much about! 

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landonm's picture
Replies 11
Last reply 4/15/2016 - 9:47pm

I am newly diagnosed with a positive lymph node in my neck (biopsied because it was enlarged 4 months after having a WLE of a melanoma on my neck).  I am getting an MRI brain and CT neck, chest and abdoment this week, then going to the melanoma clinic at University of Michigan at the end of the month to meet the team and find out my stage, plan, etc.  I'm trying hard not to get ahead of myself and to trust the process but I am concerned because a PET scan was not ordered.  Is this not routinely done at this early point?

Peggy Landon

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Tamlin's picture
Replies 15
Last reply 4/16/2016 - 10:28pm

Just got diagnosed today. After 10 years of being NED..... It has returned. I had a ct scan today which thankfully didn't show anything outwith the lymph nodes, however the fine needle biopsy in my right groin proved to be melanoma and I don't mind saying I am scared witless. I am going for a pre op assessment tomorrow morning and the surgery next Wednesday for lymph dissection.

im scared of the op, I'm more scared of the diagnosis and still haven't really got my head round it. I haven't shed a tear, it just all feels like it's happening to someone else X 

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Hello! 

I thought some of my LA mel friends would be interested in attending this symposium that AIM at Melanoma & The Angeles Clinic are hosting.  Lots of awesome docs and topics! 

https://www.aimatmelanoma.org/living-with-melanoma/patient-caregiver-sym...

Best,

Katie 

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CHD's picture
Replies 7
Last reply 4/23/2016 - 12:32am
Replies by: CHD, JohnA, Mary-E, Becky, Teochasse

I can't find the post, but I could have sworn I read earlier someone said a specialist/doc told them there are no long-term survivors of mucosal melanoma?  Does anyone have more information on this?  Been told the same thing?  Studies?  Been told the opposite?  Known someone who is a long-term survivor?

Not sure how long-term survivor is defined.  I am 3 years out from my diagnosis of vulvar melanoma with radical vulvectomy.  Stage I-II with regression but no lymph node involvement.  Later diagnosis of vulvar MIS, three surgeries total, but last PET scan in August clear.

I had not heard that there are no survivors long-term.  Does anyone have more info on this? Long-term meaning how long?  I know this is going to nag at me until I figure it out!  Have tried researching it for myself but no luck.  Am not scheduled to see my specialist until August, so long time to wait for answers. :)

Thanks in advance.  I will happily accept personal stories. :)  Ugh, this disease just keeps me in limbo sometimes.  If this is what the specialists are saying, I want to know that, too.  But definitely curious how "long-term" is being defined here.  My understanding was that mucosal melanoma survival was similar to cutaneous in that depth, ulceration, mitosis rate, etc., all had an impact.  But I don't recall ever discussing exactly what "long-term" survival for us actually meant!

I realize not a lot of us here on the forum, but any insight appreciated.

Cheri

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Maureen038's picture
Replies 9
Last reply 4/17/2016 - 6:33am

My husband had his second scan with TDM1(Sloan Kettering found he had an over abundance of the her-2 mutation).  We are so thrilled!!! He has only two very tiny lung nodules left. Hopefully, the drug will continue to work. My reason to write is to encourage everyone to keep fighting and to look everywhere for alternatives. He has done HD interferon, TIL at NIH, Ipi /Nivo in Pittsburg and DTIC in md. We are not giving up!!! We wish everyone the best!!!

Maureen

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Anonymous's picture
Anonymous
Replies 11
Last reply 4/13/2016 - 6:05am

I am starting Pembrolizumab next Monday.  I have a list of possible side effects, but I was wondering when they started?  I have two toddlers and am trying to figure out if I will need help the days following treatment.  Thank you so much for any answers or advice.

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Hikeratheart's picture
Replies 1
Last reply 4/11/2016 - 7:36pm
Replies by: Janner

Hi all, 

I saw my Derm about two suspicious spots , one a blister on my toe, and another, spot on the inside of another toe. I am happy I went in, and the Derm confirmed, no reason to remove, but keep a watch on them. I do have an excellent Derm, who takes the time to do through checks. I also know I must be diligent. I have stage 2b and had a tumor surgectly removed last July.   My question: when getting life insurance do I need to report I have (had) cancer, or because it was removed, it shouldn't matter. I ask because my premium is higher until I am 1 or 2 years NED.   Thoughts?    Thanks  to all of you!

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