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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I am a 5 year survivor of melanoma.  When I was first diagnosed I was on this site almost 24/7, and I can't tell you how much it helped me and gave me courage and knowledge.  

I just watched the latest episode of Undercover Boss about a gym chain called Retro Fitness.

I the opening couple of minutes, the CEO, Eric Casaburi, brags that his gyms offer tanning beds...of course I cringed, and thought to myself that here was another person obviously oblivious to melanoma.  

However, In the very next minute or so, Eric reveals that his mother died when he was only 16 of MELANOMA!  Needless to say, I was horrified and outraged at the same time. I wrote an email to the company expressing my horror that they promote tanning beds and that tanning beds greatly increase the risk of melanoma,  and the CEO himself sent me this reply from his email address, ECasaburi@retrofitness.net:

 

Do your homework it's safer than tanning in the sun and in a controlled environment. 

 

Go to the facebook page for this company https://www.facebook.com/retrofitnessgym?fref=ts  and express your concerns.  One way to help save people from this deadly disease is to educate them about the dangers.  Knowledge is power.

 

God bless all of you and thank you for reading this.

 

Debideb

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lrkg1234's picture
Replies 4
Last reply 5/6/2013 - 7:34pm
Replies by: sharmon, jmmm, kylez

I know that Gleevec and Dasatinib are both targeted therapies. 

Scott is C-Kit positive and was unsuccessful on the Dasatinib trial.  Does anyone know whether or not Gleevec might work even if Dasatinib didn't? 

No doctors have mentioned the Gleevec in a while and I wonder if it's an option for him.

Thanks, Lisa

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Hi All,

Scott has an appointment on Friday the 10th at MD Anderson. 

He has not had a scan since his IPI or WBR.  I am wondering how this is going to work.  It seems more logical to have the scan and then the appointment, but I have been told this is how it's always set up.  

If the brain scan is bad, won't that throw everything out the window? He's already had IPI and is taking Temodar.  If those didn't work then it seems like SRS or Cyberknife is the only option and then he would most likely be treated for that at home.  Am I wrong in thinking that or is there more information that I don't know about?

He was told that he will be treated as an outpatient for 2-3 days, so we may have further appointments on Monday and Tuesday. 

If anyone remembers the details of their first visit please let me know.  I'm anxious about the whole thing and patience is not one of my virtues.

Thanks, Lisa

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MaryD's picture
Replies 4
Last reply 5/4/2013 - 11:00pm
Replies by: dellriol, POW, awillett1991, jmmm

Does anyone have feedback about using Zelboraf with brain mets present?   For those of you who know our dear Nancy D,   she has completed WBR and a tumor harvested 8 years ago tested positive for the Braf mutation.

Tomorrow Nancy is having complete scans of her brain to see if there has been shinkag of the brain mets and also of the of her body to determine if there is evidence of any other disease sites.

Praying hard that Zelboraf may be an option for her . . .

Thank you for any feedback you can share,

Mary

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My local paper just published an article about my journey.  Take a peek.  Hope to see many of you at the race.

God Bless.  

Robert

http://www.edhtelegraph.com/article/el-dorado-hills-resident-targeting-skin-cancer-awareness

The circumstances of our lives have as much power as we choose to give them. David McNally

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susanr's picture
Replies 3
Last reply 5/1/2013 - 2:43am
Replies by: deardad, washoegal, Fen

Hello Everyone,

I just can't seem to say goodbye to everyone on this board.  I keep on coming back.  Thought I could not visit that often since my brother died in 12/2012. from this enemy called melanoma.  My experience with my brother's battle with melanoma has changed me forever.  A part of me died when he died.  Everyday I think of him, Everyday I cry for what happened to him and others on this forum.  This may sound crazy but when I read some of the stories about all the warriors fighting on this forum, I am almost relieved he does not have to deal with the pain and suffering anymore.  Hope he is in a better place fishing, smoking his cigars, eating without having a monster mass interfering with his entire GI tract, and walking without difficulty anymore.

My heart breaks from the stories I read on this forum.  I just don't know what to say but I try and post at least something even if its a prayer.

I don't like to see anyone make a post and not one reply..vs..some posts get many replies.  Its not fun battling this alone in life let alone on a support group forum when we are all in the same boat.  Unfortunately , I think of this beast melanoma everyday...all the time and I almost feel I have it...I may have it some day...who knows.  I also want people to know that this is just not " skin cancer"  melanoma is different.  As I said in some of my previous posts, medical professionals are stunned when I tell them about melanoma....where it can occur, ABCDE's are not a guarantee...maybe amelanotic....???  not just the skin...but mucous membranes...mouth, sinus, anus, vagina, internal organs as primary spots.  With that said, I am starting my "decorations" for Melanoma Monday and Skin cancer awareness month.  I went online and some things...shirts, pins, banners...are sooooo overpriced.  I am on a budget just like many of us these days.  So what I did was design my own shirt for my angel brother, bought black banners and black ribbon for my front yard, and a poster broadcasting melanoma awareness.  I live on a kind of busy street so it will get attention.  I bought all  of this from Michael's and Ac Moore craft stores using a minimal amount of money.  It will look great and send the message that I am trying to say.  I love to decorate my yard for the holidays and now this month will be extra special....and probably my favorite.

I have to make a post separate from this...there are some of you I need to thank for your reply to my brothers death notice on this forum.

Just to name .....Nahmi, Tina D, NYkaren, snickers60, JoshF, Josh, Cate, Fen, Vivian, BrianP, Aldakota22, swanee, jakeinNY

I can't thank you all enough for those kind posts....I meant a lot to me.  I won't forget you all.

Hope some of you are making plans for melanoma monday...love to hear them.

 

Love to all

Susan...sister of Peter 12/6/2012.

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Anonymous's picture
Anonymous
Replies 7
Last reply 5/29/2013 - 7:45am
Replies by: Anonymous, Janner

"Severely atypical compound melanocytic proliferation consistent with at least melanoma in-situ arising in association with a compound dysplastic nevus with features suggestive of partial regression and with foci suspicious for early invasive melanoma extending to a depth of approximately 0.30 mm.  The differential diagnosis would include melanoma in-situ arising within a compound dysplastic nevus that either has been irritated or undergone partial regression or a early superficially invasive melanoma arising within a compound dysplastic nevus with regression.  I favor early invasive melanoma because some of the melanocytes within the papillary dermis demonstrate similar cytologic atypia to the ones seen in the epidermis.  The atypical melanocytes extend to a depth of approximately 0.30 mm.  The stage would be pT1a.  The melanocytic proliferation appears narrowly excised in planes of section.  A re-excision as clinically indicated is recommended."  Also goes on to say, "Dermal mitoses are not identified."  There is a lot of vocabulary here I don't understand what it all means, but I know melanoma is serious.

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mama1960's picture
Replies 3
Last reply 5/2/2013 - 2:27pm
Replies by: Tamils, awillett1991, Tina D

Got  bone scan results today. Several mets in pelvic area, sacroiliac, L2 vertabrae, eigth rib on left side and tops of humorus, both arms. have almost  no use of arms. The plan is radiation to the hottest spots and then Zelboraff. Any info on either would be helpful.Thanks.

It is what it is.

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lrkg1234's picture
Replies 5
Last reply 4/29/2013 - 2:33pm

So, now I'm on the hunt for an anti-PD1 opening for Scott, just like everyone else. 

Of course I'm leaving lots of messages and waiting for phone calls back. I just called Chicago and Vanderbilt.  If I were lucky enough to find an opening does anyone happen to know what the washout periods are for Yervoy and Temodor?

If you are trying to get into a trial how long will they consider your scans valid before they want another?

Scott needs official scans for both the brain and the entire body in about 2 weeks and we are trying to time it right.  He had a kidney stone this past week and had an "unofficial " abdominal scan that showed the IPI to be partially effective, but not good enough.  Of course if the brain mets are not cleared up then trials are not an option.

We are traveling to MD Anderson in a few weeks and were going to wait and get him scanned there. They may have more ideas for treatment but, if there is an Anti PD-1 trial in the area that would be a better option.  It would be much more affordable to drive than fly. 

He has already had Dasatinib, IL-2, Yervoy and now Temodor.  I don't know what else there is.

This whole thing is stressful, but isn't it worse between treatments?  Deciding what route to take is mind bending.  So many things to think of when you are not thinking straight anyway.

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lrkg1234's picture
Replies 10
Last reply 5/24/2013 - 12:07am

Does anyone know of possible anti PD-1 trial openings for patients previously treated with IPI? 

We are in Indianapolis so anywhere within an 8 hour drive would be best.

What is the best link to use for the most updated, easy to read information on current trials?

Thanks for your help. 
Lisa

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Linny's picture
Replies 1
Last reply 4/29/2013 - 11:42am
Replies by: Janet Lee

Stage III, Unknown Primary; 1 positive node in left axilla

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5374brian's picture
Replies 2
Last reply 4/29/2013 - 1:17am
Replies by: 5374brian, Phil S

My wife has completed 5 of 10 WBR treatments. After the 4th treatment she has experienced daily nausea and a few upset stomach. Is this a typical side effect? When does it subside? I know not everyone recacts the same but just checking on how others were effected? 

 

We have been presented a consent form to review for Randomized open lable Phase 3 trial of BMS-936558. The trial is 2 out of 3 will receive the BMS-936558 and the other the investigators choice of either dacarbazine, paclitaxel, carboplatin. Should we enter into a trial like this where it is randomized? Would there be benefit with the other if we dont receiver the BMS? 

Brief history my wife just completed he IPI April 2nd and had her follow up scans April 18th. We were told that the results from IPI were not good enough so they wanted to keep a treatment plan in front of us. 

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Blakejj's picture
Replies 1
Last reply 4/28/2013 - 4:21pm
Replies by: 5374brian

 

Hello,

I was wondering if you guys could help with a health insurance question. 

In early 2011 I had a mole removed from my chest that turned out to be malignant melanoma.  Clark’s level II, and Breslow thickness of 0.25mm.  Follow up surgery was a success and the doctor said they got it all.   I have not had any reoccurrences since then.

Fast forward to 2013, and unfortunately I have no health insurance, but now have a job with enough money coming in so I might be able to afford it.  If possible, I would like to purchase it and was looking for guidance on how to proceed as I have been given a lot of conflicting advice. 

If I want insurance now, I have been told by various folks that there are a couple of insurance companies who would be willing to insure me, but most will not.  Thus I should work with a broker to make sure I only apply to the ones who are willing to insure me, as having a denial/rejection for insurance makes it a lot harder to get coverage going forward.  (An insurance broker probably told me this!)  Any thoughts as to the validity of this?  If it is true, which insurance companies are most likely to insure me?  Would future coverage for melanoma excluded (ie they won’t cover any melanoma costs, but will cover other things)?

Alternatively I could wait to 2014.  My understanding is that the ACA says they can’t deny me nor charge me rates any different than their other customers.  Is that true?  If so, could I go to a website like ehealthinsurance, or via a broker, and just apply to the plan I like best?  Is future coverage for melanoma excluded (ie they wont cover any melanoma costs, but will cover other things)?

I understand that the actual execution of the ACA will probably change over the next 7 months, but just trying to figure out things as they stand now.

I am in Texas if it matters.

Any help, thoughts, or guidance is appreciated!

B

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mamabet's picture
Replies 6
Last reply 4/29/2013 - 12:00pm
Replies by: saengery, mamabet, POW, Anonymous

Hello
I was diagnosed with melanoma in September of 2012. It has been a huge emotional challenge for me to remain positive despite my good prognosis. Tumour was 0.88mm, no ulceration, low or no mitosis. My Clark's level was IV, however, and that is what seems to be driving my negativity. Does my Clark's level move me from 1A to 1B? Also, I don't quite understand, despite trying to research it myself, how my stage can be good when my Clark's level is so high? To make matters worse, I am prone to cysts and every time a new one pops up I worry like crazy that its a melanoma growth.
Just to add, I am having another primary removed on May 8. I had this one back in September as well, but no doctor would even entertain it being removed, because they were so focused on the other obvious tumour. But this one has the same texture as the other one, and it is starting to change colour as well, so the oncologist is sure it's melanoma. I'm hoping for an in situ.
Anyway, thanks for listening. This has been a completely devastating diagnosis for me, despite my knowledge that it could be so much worse. Emotionally it has changed my life.

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Anonymous's picture
Replies 7
Last reply 4/28/2013 - 10:08pm
Replies by: Houston, POW, Anonymous, LynnLuc, jeffjohn78, Linny

My husband went to the dermatologist last week and was diagnosed with Melanoma on his shoulder by a dermatologist. The doc said it was .5mm and classified him as T1B. She said that someone from MD Anderson would be calling us next week to schedule an appointment to 'check his lymph nodes'. She also said that it was "dividing rapidly," but didn't give any other details.  We are both in our young 30's with small children and feel completely blind sided by the "C' word. We live in Houston and will be driving to the medical center here for treatment. Here are my questions:

1.) How do we get the pathology report (do we just ask?) and do we need it for ourselves?

2.) What can we expect at our first appointment?

3.) What questions should we ask? (I know there must be questions that you all wish you had asked the first time, so please let us know what they are.)

4.) The big one: IF it has spread to his lymph nodes or beyond, does that change the stage and how soon will we know?

 

Any help, suggestions, tips, thoughts are MUCH appreciated.

Thanks so much.

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