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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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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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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Anonymous's picture
Anonymous
Replies 5
Last reply 4/15/2016 - 1:23pm
Replies by: WithinMySkin, MoiraM, Anonymous

I was diagnosed with 7.0 mm melanoma. It arose from what I figure to be leftovers from a previous melanoma. I guess it would be considering nodular melanoma since my dermatologist described the lump making up the melanoma as a nodule. The nodule is on my ankle so thankfully that puts it further away from a lot of vital organs. 

Anyway I want to get a good idea of whether or not it has spread to a lymph node or other organ. I'd appreciate getting opinions. (I understand it's no replacement for actual tests but I have to wait for that and want to gather input in the meantime)

I've been having an issue with my reproductive health for months now. Vaginal burning and discharge that won't go away despite taking antibiotics, painful varicose veins and blue-ish marks in general that feel like bruises and are fairly painful (I'm not pregnant), I also have 3 dark freckles on my labia that have developed within the past month that I noticed at around the same time the blue-ish marks and painful varicose veins there appeared. 

I'm sorry. I know this isn't a gynecology forum and I feel stupid for asking since from what I'm mostly reading it seems that melanoma tends spread to the lymph nodes and other internal organs so assuming that theres some new secondary site presenting itself on the surface of the body doesn't site right with me. I'm mostly asking because I am having a hard time finding alternative explanations for my reproductive health issues and I have also been diagnosed with HPV. I know the exact type of HPV I have but have no other information on it so I can't tell if it is the type that puts me at higher risk for vulvar melanomas or not. 

I feel very uncomfortable bringing this up with a doctor in person for various reasons which is why I'm posting this anonymously. 

 

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/15/2016 - 12:49pm
Replies by: jenny22, deardad, Anonymous, Janner

My husband was recently diagnosed with SSM 1a. We had another pathologist to read his path (second opinion).

First report: Breslow 0.6 Clark IV no regression 0 mitosis no ulceration

Second report: Breslow 0.84 Clark IV partial regression present 0 mitosis no ulceration

He had wide excision, but did not have SLNB!!

I am panicking! That is all I can think all day and all night... I can't focus on anything else...

What should we do?

Can he have SLNB now? Will it be accurate?

Any experts on this?
 

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WithinMySkin's picture
Replies 7
Last reply 4/15/2016 - 12:23pm
Replies by: WithinMySkin, Anonymous, Janner, jodaro, jennunicorn

Hello All! Happy Thursday!

I just read this article about melanoma criteria. I know lots of us here have found our primaries, so hopefully this will be helpful to everyone. The article mentions that ABCD criteria, while the most specific, is not the most sensitive. The study mentioned the Menzies' Method as the most sensitive, which I hadn't heard about. 

Here's the link for the study:

http://www.cancernetwork.com/melanoma/dermoscopic-algorithms-lack-reliab...

And a link describing the Menzies' Method. It has lots of great pictures, so definitely worth a look!

http://www.dermoscopy.org/consensus/2c.asp

 

Lauren

WithinMySkin

www.Withinmyskin.com

 

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jahendry12's picture
Replies 4
Last reply 4/15/2016 - 8:04am

Has anyone else experienced sores in their mouth & throat from keytruda?  If so, any ideas on how to get some relief?

thanks

Julie

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Toby0987's picture
Replies 1
Last reply 4/15/2016 - 2:47am
Replies by: MoiraM

Just got back from Mayo. I'm previous stage 3b Mel as well as pap thyroid cancer. They killed off the thyroid cancer with ablation earlier and I'm still clear. Had my PET and it showed up that I had appendicitis but I don't feel sick so false positive? They called me at 8pm after PET and quizzed me on any physical symptoms and to go to er if have any pain. Today went in and they said not sure what is going on but if I don't have symptoms that the best course of action is to do nothing. Have any of you had a situation similar with the PET? It also showed a bigger node and sugar pickup in the node. My original Mel was on arm and in armpit. My fat/hot node is near my appendix . I have to go back in 2 months for a follow up PET to see if the node has gotten bigger

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Hello.. Heard it mentoned that if Keytruda was used via its FDA approval for initial treatment would eliminate getting into most clicial trials? I need to look threw trial data but was wonderinf if anyone else had heard that?

Hoping that Keytruda woud be all needed but also dont want to prevent getting into a trial if necessary.

 

Thanks so much!

 

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KimberlyVU's picture
Replies 4
Last reply 4/14/2016 - 9:03pm
Replies by: Janner, KimberlyVU

I have a suspected amelanotic nodular melanoma and just had my first appointment with the dermatologist yesterday. 

A brief history - I had an elevated bump appear on my upper arm where I believe, but cannot be certain, there was a flat or slightly raised brown mole before. I found the elevated mole mid February but did not report to my primary Doctor until April 7. I have many moles (probably at least 200) and have had several looked at over the years. In general I've always left feeling silly for even bringing them up. This time not so silly. She immediately referred me to a dermatologist and I saw him yesterday so under a week wait. 
 
He has scheduled me for a punch biopsy 8mm for next Wednesday the 20th but stressed that there is nothing to worry about. Possibly pyogenic granuloma. 
 
My lump shows granulation and is very vascular, originally was scaly and a little scabbed over only a few dots of blood at first but now it's just pink/red with a little brown left on the side. I can't figure out how to post a pic from my phone. 
 
Knowing my warning signs do you think I can comfortably wait for the week to get the biopsy and then the two weeks (probably) for the pathology? 
 
Any advice is welcome
 
Kim V
 
 

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Gene_S's picture
Replies 21
Last reply 4/14/2016 - 4:26pm
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Bradley75's picture
Replies 1
Last reply 4/14/2016 - 2:39pm
Replies by: jenny22

I just finished my 7th round of shots.  I am using Leukine because I didn't qualify for any stage 3 clinical trials at the time of my diagnosis.  The Leukine was my best option to try to prevent recurrence.  My question involves side effects.  I have had similar side effects on all rounds with injection site reaction and a little fatigue.  This round is the first time I have been dealing with a headache.  I have had it for over a week now and am starting to wonder if it might be something other than a side effect.  Any Leukine users out there with a similar experience?  I asked my melanoma care team and they said it is most likely a side effect, but why would it occur on round 7 and not on any other round?

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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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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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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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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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