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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_Paul_'s picture
Replies 14
Last reply 12/1/2016 - 10:23am

MDA is a busy place. My God! A nurse did not come for me until an hour after my appointment. 

I was lugging two big binders containing my medical history. I'm glad I had them because my medical history fax from SCCA was garbled. So it took another hour and a half to pour through those suckers.
 
Finally I met with Dr. Isabella Glitza. I appreciated the way she laid out available treatment options (no, bio-chemo was not offered), and then discussed them all in light of my history.
 
MDA also has a bunch of phase 1 trials, but no stats on their efficacy. She had a good point that I should exhaust trials first, while I am still eligible (I.e. healthy enough). Because I have failed ipi, pembro, and atezolizumab, there is doubt that the ipi-nivo combo will help.
 
So the prioritized list came down to:
1) Old School TIL, while I am healthy enough (although she also expressed concern that I may be resistant to immunotherapy),
2) ipi-nivo, or
3) some phase 1 trial.
 
She also mentioned that if things get bad, they may be able to buy some time with a combo of chemo drugs. MDA is getting about the same response rate from them as ipi.
 
She also discussed some real mad scientist stuff like tricking my cancer cells into exhibiting BRAF-like response and using targeted therapy to buy some time.
 
Celeste, I forgot to ask about interlesional, but I will ask her via the MDA patient portal.
 
- Paul

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/1/2016 - 10:07am
Replies by: Janner

Just wondering what is the difference between intransit and local re..

What do intransits look like?

Can a intransit be in situ or do they all have depths?

What is a local re?

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pianogurl85's picture
Replies 1
Last reply 12/1/2016 - 12:20am
Replies by: Janner

Hello,

I recently had a spot removed off of my back that was mildly dysplastic.  The plastic surgeon that removed the lesion didn't have clear margins and wants to remove more.  When I called my dermatologist's office, they told me that they typically don't need clear margins if the mole is not malignant.  This is the first time I have ever had a biopsy come back that wasn't clear and I wanted to see if the information I was given by derm is correct.  I certainly don't want to leave anything on that could end up turning into melanoma at some point. 

Thank you in advance for your time!

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losborne00's picture
Replies 5
Last reply 12/1/2016 - 12:13am
Replies by: SUE LONSWAY, losborne00, Anonymous, Janner

Hi Y'all,

I'm new here and looking for some information on what "melanoma ulceration" is. I had a melanoma that developed under a toe nail and was diagnosed 2 years ago (although the lesion had been there about 6 years).Sub ungal acral lentiginous melanoma was the official diagnoses. The first biopsy was a 2mm punch that described no ulceration present. After my toe was removed at a leading hospital in the southeast, I got a copy of their path report and it seemed to be lacking recommended diagnostic measurements. The pathologist was presented the entire toe to examine. The path report lacked important info. No mitotic rate, lymphocyte infiltration, ulceration present or not etc. The only info was Breslow's depth, tumor mass, visual description of the lesion and confirmation of melanoma. The breslow's depth was 4.5mm. I was staged IIb with the only thing keeping me from IIc was ulceration which wasn't mentioned in the second path report. Since there is a LARGE difference in survival rate between IIb and IIc I'm a little concerned about ulceration and it's medical definition regarding melanoma. When my toe was amputated the lesion had "consumed" my entire nail and left a reddish depression where the nail was. There was also flaking skin that sometimes bled and was sore. The entire toe was inflammed and reddish along with the usual dark spots of melanoma cells in and around the former nail bed. It looked ulcerated to me but I'm not sure what the medical definition is. Is it a definite test that is done or is it a subjective observation of the pathologist? Can ulceration be diagnosed by the first punch biopsy? Thanks for any help!

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jennunicorn's picture
Replies 36
Last reply 11/30/2016 - 11:06pm

Hey all,

I am 28 years old with stage 3b Melanoma. I have just talked with my oncologist today about treatment options, and since there are no open clinical trials for my stage at the moment, the 2 options were watch and wait or Yervoy. I opted to do Yervoy because the anxiety of the watch and wait would drive me nuts. 

I know everyone has different reactions and experiences with their treatment, but I am wondering if anyone else out there that is currently on or has done the Yervoy 10mg/kg treatment has any advice?

I've read that there are usually some pretty bad stomach and intestinal side effects. Are there certain foods that seem to help people vs. foods to avoid when doing treatment? How do you typically feel during and right after an infusion?

This is all kind of scary and weird for me, but I am a healthy young person besides this whole Melanoma thing. I'm hopeful that I will get through this treatment and keep my fingers and toes crossed for no recurrences. 

Thanks,

Jenn

Jenn -  IIIC - currently doing Ipi/Nivo (Yervoy/Opdivo) 

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Calynda's picture
Replies 11
Last reply 11/30/2016 - 5:15pm
Replies by: Calynda, cancersnewnormal, Anonymous, jennunicorn

I was diagnosed with stage 3b while I was pregnant almost 4 years ago.

today I went to the ER and had a MRI done.  Tomorrow I head to see a radiation oncologist.  They found 3 lesions in my head "consistent with melanoma." 

My kid is 3.5, I just finalized my divorce.  At least, since I moved in with my parents, I have help.

I'm currently in central Illinois and have to research where I should be going here.  I was originally diagnosed out in Southern California while with Kaiser.  

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/30/2016 - 3:37pm
Replies by: Ed Williams

https://www.statnews.com/2016/11/23/cancer-patients-fda-juno/

Interesting article with implications of new treatments / agency decision making / knowledge sharing or management and implications of the election...

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Skunkwheez's picture
Replies 0

Just to update those that have helped me so far, My Dad had his PET scan and it's clear! The only thing that lit up was on his head where his surgery was which they said is common. For new ones to the board, he had a 4.6 mm in the scalp. SNB biopsy was negative and PET is negative. So no cancer for now.  Follow up scan in 3 months but until then gonna try to get back to our new normal. Thanks again everybody.

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Hello everyone! I am curious if anybody out there has been in this clinical trial? I am a Stage 4 patient who completed 4 doses of Ipi ( October 2015 - December 2015) and was not a responder. I did 2 follow up Pet Scans after treatment on Dec 17th and January 28 which showed my main tumor (chest wall) was still growing..and now I have several subcutaneous tumors around my upper torso, but mainly seeming to favor my left side of my body. I have a great melanoma specialist who has been working with my husband and I but is now recommending I move forward with a clinical trial. I shouldn't be surprised at how invasive the pre-testing for a clinical trial is but sometimes it feels overwhelming. I handled the Ipi really, really well with very little side effects besides some minor itching but I always get nervous when it comes to new drugs. This trial includes taking the pills (epacadostat) every day and the infusion of nivolumab every two weeks. Has anyone been through this? Side effects? Reponses to the treatment? We've been going through this for almost a year and I feel like we're starting to grasp at treatments because we keep getting let down every time I have a scan update. Very frustrating but I'm also very determined to WIN! any input would awesome! Many thanks and love! Niki

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KAF's picture
Replies 8
Last reply 11/30/2016 - 12:07pm

Hi all

shortly after I started ipi/nivo I noticed my eyebrows turning white.  This was in June

Now all the hair on my body is pure white - head, eyelashes, arms, legs, etc...  not a drop of color at all. I don't seem to have any skin discoloration at all.

My scans in October were great and I am currently on Nivo only maintenance.

My question is - has anyone else had this happen to them and then have the hair color come back or will mine stay white permanently?

thanks

karen

 

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sarah.brannon's picture
Replies 4
Last reply 11/30/2016 - 9:10am

So I finished my year of Interferon 9/30/2016. Since then, I've missed 3 periods (I'm not pregnant), and I'm having hot flashes and night sweats. I'm doing a "wellness beyond cancer" clinic at the hospital next week to deal with gynecological issues, so obviously I'm going to talk about this with them, just wondering if this is something other women have experienced after treatment. I'm 28, married, with no kids yet. It's weird.

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STage 4 survivors tell their stories here (over 2 years to like 10)  http://melanomainternational.org/events-webinar/patient-experience-video

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Anonymous's picture
Replies 9
Last reply 11/30/2016 - 7:37am
Replies by: Carole K, DebbieH, cc, CindyCo, Kim K, Tim--MRF, Anonymous, Fen, Janner

Hello! I have been diagnosed with melanoma stage 2 b in September 2016. While I am in a panic and I want to ask, is  someone here who had been diagnosed with mm at least 15-20 years ago and NED? Maybe 30 years? Is it real?  Maybe someone has such positive stories...

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Hi Maggie,

I check on here from time-to-time and I haven't seen you for a bit.  I'm hoping you are okay?

Thinking about you...

All the best,  Laurie

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Mimi820's picture
Replies 2
Last reply 11/29/2016 - 9:58pm
Replies by: Mimi820, Janner

Hi:) I am a 43 female with a history of many basal cell skin cancers. I recently had an area of suspicion on my left breast area (12:00). It started as a tiny black dot that slowly enlarged. I had it biopsed and was informed that it was an early melanoma in situ. My pathology report was not very informative-just listing the diagnosis and some medical derm terminology. It did not list depth, ulceration, regression etc that I have read that reports should have. I was referred to a plastic surgeon for a Wide excision. My question is, would the second path report list the above info?

My next concern was the location. Thankfully, the biopsy was pretty tiny, however, its in a slightly delicate spot. About 2 inches above the nipple (sorry tmi). I had a breast MRI a couple months ago because of having very dense breast tissue-luckily, it was negative. However, in my report it stated that there may be a "lymph node" present in the left breast at the 12:00 position***exactly the same location where my melanoma was removed. Ughhh. Do you think this is coincidental? I did decide to go back to see my breast specialist to get her opinion- she is also a surgeon. Thinking of having her do the excision also. Should I ask about the lymph node, and to ask if I can check it out during my excision, or am I being a hypochondriac because it was in-situ in the first biopsy? I appreciate any insight! Ty:)

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