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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beatricefromPARIS's picture
Replies 3
Last reply 5/4/2011 - 6:15am

Hi all,

Had 4th ipi injection a week ago

so far, it's a walk!

no adverse reaction apart from fatigue and occasionnal mumbling of the tummy

can't tell yet if response because tumors are all inside, not visible

last blood count indicates depleted red cells but that was due to previous treatments and new one :higher than normal eosinophil count. No idea what that means...Any info ?

 

Beatrice stage IV

 

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My husband got the phone call from the dermatologist this morning... the area that was biopsied from his abdomen is melanoma. "Leaning more toward Stage IV", the dermatologist said.

My husband is a hypochondriac. He blows things way out of proportion. So I called the derm office myself to find out exactly what they said. They've referred us to a surgical oncologist (best one in the area, they said). SurgOnc will be calling us in 1-2 days to schedule consult.

I am NOT a hypochondriac. I typically down-play things, ESPECIALLY because he gets so worked up about EVERYTHING. But this has me quite concerned.

My husband's melanoma is just (so far) in the one spot... from what we understand. I have so many questions... is he going to die? He's only 38 years old. I thought melanoma deaths were mostly related to older people, like in their 70's and 80's? My grandfather had multiple melanomas, but he also had other severe health problems, including dementia, Parkinson's, etc. I thought he died of ALL those things combined. Even so, if he did die of the melanoma, he lived until he was 75.

Am I going crazy here!?!?! We just had a little girl. She's not even 2 years old yet. I'm only 29 and my husband could be DYING?!?! We have two teenage daughters as well...whom we haven't told yet (we're still reeling from the news this morning). I don't know what to do! I'm just praying & trying to entrust all of this to God. We have no answers until we meet with the SurgOnc.

Any help anyone can provide would be MUCH appreciated. Thank you.

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Anonymous's picture
Anonymous
Replies 19
Last reply 5/9/2011 - 8:21pm

i am just curious - i know may is melanoma awareness month and in speaking about this topic with friends i realize so many are so clueless about melanoma. they think it must be some ugly looking, huge, black mole. in reality, i know a few people that have pretty small melanomas that werent dark at all and looked like a little freckle.

so did your melanoma fit the description that most people assume - or did it look pretty harmless and your dr was even surprised by the diagnosis.

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Shelby - MRF's picture
Replies 6
Last reply 8/9/2012 - 5:58am
Replies by: Anonymous, Lori C, Ranisa

Avvo will donate $5 to the MRF for every doctor review they receive in the month of May.  Pleae use this link to be directed to Avvo's webpage designed specifically for skin cancer awareness and the MRF:  http://www.avvo.com/support/skincancer 

Pass this along to your friends!  Thanks!Ple

Shelby - MRF

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Shelby - MRF's picture
Replies 9
Last reply 5/6/2011 - 10:05am

Hello everyone! 

We have had several requests for some change regarding the viewing of posts on the bulletin board.  We were able to get a quote on making an internal change to the website so that users can sort posts by personal preference, either by last reply date OR by original post date.  This will hopefully help with the issues that have been brought to our attention.  The quote was just given to us but we have given them the go-ahead to make these changes.  Once we have an estimated date that this will go into effect, I will announce that in this message.  Thanks so much for your patience, understanding, and input and please don't hesitate to contact me if you have any questions/concerns regarding this change.  Have a wonderful day!

Shelby - MRF

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Eugenia's picture
Replies 3
Last reply 5/4/2011 - 8:02am
Replies by: Janner, Eugenia

Here is my SIL's pathology report:

Skin, left leg lesion:  Melanoma in situ

Comment:  It is not known if this is a biopsy of a larger lesion or an excisional biopsy.  Due to small size, fragmentation and orientation, the margins cannot be adequately evaluated.

Skin, Left Leg Lesion:  Received and labeled “lesion L leg,” is a .2 cm portion of dark brown-gray tissue that is submitted as received along with a smaller minute fragment.

Clinical info or preop diag:  None given

Microscopic Description:  The sections consist of levels of two tiny fragments of skin with a melanocytic lesion.  There is a lentigenous melanocytic proliferation;  focally the melanocytic cells are see in the superficial portions of the epidermis.  Cytologic atypia is mild to moderate.  No mitoses are seen.  A few lymphocytes are seen in the underlying dermis.  Fragmentation and orientation preclude evaluation of the margins.

**any misspellings are most likely mine! :)

This is the pathology report that caused the general practitioner to want to do a punch biopsy before a full excision.  Instead, my SIL asked to be referred to an oncologist and now has an appointment scheduled for tomorrow (Wednesday) with the oncologist, who may want to do the exact same thing, but will at least know what he is doing or send her to someone who does.  Also, she has an infection in the wound caused by the shave biopsy, and was given an oral antibiotic for the infection.

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TracyLee's picture
Replies 9
Last reply 5/3/2011 - 5:44am

I've got two appointments in the next couple of weeks for a second opinion about having radiation for my scalp melanoma.

First appointment is at U of Penn in Philly with Dr. Schuchter. Second is at Johns Hopkins with Dr. Sharfman. Has anyone else consulted with either of them?

Anything SPECIFIC I should be asking at these consultations? I'm mailing my entire set of records ahead of the appointments for their review.

While I feel I should do radiation, my husband is opposed. Obviously it's ultimately my choice, but it would be helpful to be on the same page as far as treatment. This is all hard enough without also battling my husband!

My doctors feel it has migrated into my skull membrane (on top of the skull, not inside), and there is only so much they can do surgically. I have had five surgeries in the past year, on my scalp and neck.

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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sharmon's picture
Replies 4
Last reply 5/4/2011 - 8:48pm

He was on Mek alone for over 14 months and was stable after a 25% reduction.  In Feb. he increased in two tumors by 23% and was removed from that MEk alone trial.  He had his first infusion of the Pemetrexed chemo a week ago along with a dose amount of 1.5 mg of MEK .

We want you to know that he feels that the discomfort he was feeling at the end of the Mek alone trial is much better.  Brent is BRAF negative and negative for all the mutations that MDA has to ability to screen. 

The side effects from the Pemetrexed chemo is mild.  Slight flu like feeling and some fatique.  Pemetrexed is a chemo use for lung cancer. 

God Bless you all and each one of you are important to us.  Just knowing you are there helps us know we are not alone.

Sharon

 

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Rendergirl's picture
Replies 12
Last reply 5/3/2011 - 9:19pm

I think I might be getting mine removed tomorrow or the next day, under arm. Question.... did it hurt anyone? Looks like I have a stitch or two in the skin around it. I'm a little scared, I know it's silly, after surgery to be scared of getting the little drain removed, but I am.

Any experiences?

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nickmac56's picture
Replies 13
Last reply 5/4/2011 - 12:25am

As I've documented recently, my wife, Stage 4 melanoma, Ipi non-responder, skin and lung mets, and now brain tumors (one of which burst causing her to undergo brain surgery), is at home now, recovering. There is sort of a game plan with our trusted oncologist, when her brain calms down a bit more we will likely meet with a radiologist to discuss radiation (gamma or cyberknife) to address remnants of the tumor removed during surgery and the other known one in a different location. (we are obviously knocked out of the NIH trials we were scheduled to attempt). I've spent quite a bit of time this weekend trying to understand realistic outcomes for melanoma patients with brain mets and figuring out how to help her understand quality of life issues when looking at treatment options and their side effects relative to life extension. The statistics and prognosis generally for someone in her state are not good. I know all the arguments about how each person's experience will vary and I'm not proposing we give up. But I have two college age kids who want to understand what the course of events likely will be in order to prepare themselves. and I have a wife who is somewhat cognitively impaired from the stroke, and frankly is in quite an anxiety free and positive mood. So I am more than unclear about how to talk to my young men about their mom, let alone whether and how to help my wife understand her situation without upsetting or confusing her (is blissful ignorance better than knowledge?). If she knew the probable outcome she might start taking some actions now (letters to her boys when they marry, etc). Or do I just leave it to the oncologist and radiologist to break the eventual news?

Anyone been in this situation with advice?

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/1/2011 - 5:32pm
Replies by: MichaelFL

Hi Everyone,

 

I am scheduled for surgery to remove a tumor in a few weeks.

 

Has anyone frozen their tumor & if so, how did you use your frozen tumor at a later date( ie genetic testing, vaccine, etc.)? Was there a costor fee for freezing the tumor & for storing it.

Thanks for your input.

 

Jan

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kathywal53's picture
Replies 1
Last reply 5/1/2011 - 4:16pm
Replies by: MichaelFL

My husband, Chuck, was diagnosed with stage three Melanoma in 2004. He rec'd treatment in Goshen, Indiana at Goshen Center for Cancer Care.

He underwent 5 treatments of IL-2 as well as radiation therapy and of course surgery to remove the tumor on his leg. Chuck wrote and self published

a book called, Almost Always Fatal-Surviving Cancer with a Sense of Humor in 2007. I recently launched a website where you can read about

Chuck and his journey through this terrible diagnosis and how he coped with the years of treatment. I invite anyone who has been diagnosed or knows someone who is facing this very aggressive form of skin cancer to read his book.

The website is www.almostalwaysfatal.com

 

Thank you and God Bless.

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My husband, Chuck, was diagnosed with stage three Melanoma in 2004. He rec'd treatment in Goshen, Indiana at Goshen Center for Cancer Care.

He underwent 5 treatments of IL-2 as well as radiation therapy and of course surgery to remove the tumor on his leg. Chuck wrote and self published

a book called, Almost Always Fatal-Surviving Cancer with a Sense of Humor in 2007. I recently launched a website where you can read about

Chuck and his journey through this terrible diagnosis and how he coped with the years of treatment. I invite anyone who has been diagnosed or knows someone who is facing this very aggressive form of skin cancer to read his book.

The website is www.almostalwaysfatal.com

 

Thank you and God Bless.

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Shelly in Switzerland's picture
Replies 3
Last reply 5/5/2011 - 7:27am

Everyday there is an improvement to my left side,  the sciatica has cleared away, lots of muscle waste.  My concern is really the right side of my face: it feels like it asleep,or numb.  What did Amy B. have?

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5/1/2011
8:41am
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I had a place taken off my cheek a month ago  by a shave biopsy and 2 weeks later the biopsy results came back and then said it was Melanoma Insitu Clark Level 1 which said it was superficial and only on the outer layer of the epidermis.  I went and picked up my report and after looking at it was confused because it had the doctors name that reviewed it (dermapathologist) but my doctor had signed for him and they also mentioned on the report that I had a history of melanoma.  Why would they need to state that on the pathology report?  The first review from him stated Atypia and then the final review was melanoma Insitu.  Anyways, I requested my slides from the dermatologist office and picked them up before my appointment with the plastic surgeon at Vanderbilt this past Thursday.  After looking at my report he also thought it looked a little strange.  I told him that I had my slides and would like someone at Vanderbilt to review them and he said oh good so he sent them down while I was there.  He went over 2 options to take care of this which were.....if he did the excision he would take .5cm all the way around.  He also told me about Moh's which he said may be the better option for me since they check the tissue as they go and can make a smaller scar.  I told him that would probably be the option that I would go with.  On Friday I get a call from the Moh's people at Vanderbilt that he had referred me to saying they had received my pathology report and no where on there did it state I had melanoma just Atypia.  She said they were going to send the report back to the plastic surgeon that I saw on Thurday.  She said you may not have to have anything done.  I said well since he did a shave he left me with a hole in my skin which I would like to have corrected.  They told me that it would fill in but I don't think so.  We are going on 5 weeks and it hasn't yet. So now I'm waiting on the plastic surgeons office to call me tomorrow to let me know what they think.  My question is if he goes back in to fix this hole and pull the skin together so I have a line that would look much better couldn't he test a little bit of tissue again to make sure it comes back ok?  Has anyone every experienced this?  I'm just so confused and stressed out and don't know what to do.  I don't want to be left with a bigger scar if its not necessary.  Any replies would be greatly appreciated.  Thanks! 

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