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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Sherron's picture
Replies 4
Last reply 5/4/2013 - 1:51am

Hello to all - Tomorrow I will be walking in the 2013 Melanoma Walk in Dallas Texas for AIM.....Looking forward to it....Thanks to Catherine Murray and Kyle Clare for sponsoring me.  I will  be walking in memory of my Jim, for several other warriors who have passed on from this beast, Amy Busby, Will, Bruce Fowler, Nancy O'keefe's husband, and many more that I can't remember just this moment....Just wanted to say thanks to the 2 people from here that donated.  I appreciate it very much...

Take Care,

Sherron Clevenger, wife to Jim FOREVER

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mamabet's picture
Replies 2
Last reply 5/3/2013 - 12:40pm
Replies by: mamabet, Janner

I am having a new primary excised next Wednesday.  In preparation for seeing my surgeon again, I thought I would go get a copy of my pathology report so that I can ask him for any services I have not yet received.  Please tell me if I need anything my oncologist has missed.

Type:  Superficial Spreading Melanoma

Tumour Thickness:  0.88mm

Clark's Level:  IV

Ulceration:  no ulceration identified

Peripheral Margins:  uninvolved by invasive melanoma, closest margin is 4mm

Deep Margin:  distance of invasive melanoma by margin is 16mm

Mitotic Index:  less than 1/mm squared

Microsatellitosis:  not identified

Tumour-infiltrating Lymphocytes:  present, brisk

Growth phase:  vertical

***  The following week I had a re-excision of the same spot.  No evidence of atypical melanocytes or residual malignant melanoma.  I also had a lymph node ultrasound, with normal-appearing lymph nodes bilaterally.  Chest x-ray was also normal.

My surgeon is quite proactive, moreso than my oncologist.  He will order whatever tests I feel necessary.  I did not have a sentinal node biopsy, so with my mitotic index not being at 0, does anyone thiink this is necessary?

 

 

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I am having a new primary excised next Wednesday.  In preparation for seeing my surgeon again, I thought I would go get a copy of my pathology report so that I can ask him for any services I have not yet received.  Please tell me if I need anything my oncologist has missed.

Type:  Superficial Spreading Melanoma

Tumour Thickness:  0.88mm

Clark's Level:  IV

Ulceration:  no ulceration identified

Peripheral Margins:  uninvolved by invasive melanoma, closest margin is 4mm

Deep Margin:  distance of invasive melanoma by margin is 16mm

Mitotic Index:  less than 1/mm squared

Microsatellitosis:  not identified

Tumour-infiltrating Lymphocytes:  present, brisk

Growth phase:  vertical

***  The following week I had a re-excision of the same spot.  No evidence of atypical melanocytes or residual malignant melanoma.  I also had a lymph node ultrasound, with normal-appearing lymph nodes bilaterally.  Chest x-ray was also normal.

My surgeon is quite proactive, moreso than my oncologist.  He will order whatever tests I feel necessary.  I did not have a sentinal node biopsy, so with my mitotic index not being at 0, does anyone thiink this is necessary?

 

 

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Replies by: Janner, nickmo79, Anonymous, akls, buffcody

Hi everyone.

I recieved my dx in early Feburary after having a itchy mole removed on my stomach. Long story short, it came back as melanoma. It was .82mm, CL IV, no mitosis, no ucleration, and a non-brisk host response. Having a family history of this disease (my father died after a 13 year battle), I am and have been constantly worried about it.

Shortly after the dx, I had surgery to ensure clean margins and a SNB. I then went to MD Anderson to have them check me out as well and based on my aformentioned family history I was given a CT and MRI as well. Everything came back good and I am now seeing a derm every three months. Twice a year at MD Anderson and twice locally here in Arkansas.

I have a question for you guys and gals that have had node biopsies. My SNB was on my right groin (in mid Feb.). Over the past two weeks, my left groin has been in a constant state of mild to moderate pain. Is this normal? I went back to my surgeon and she didn't think much of it. She thinks it is probably just nerve damage. While I saw my nuclear scans during all my testing and can absolutely confirm that the mole drained to my right side, I'm not worried out of my mind that this has something moved over to my left side. Has anyone experienced pain in the opposite side of their body from their SNB?

Thanks for any input and my each of you find happiness in your journeys.

--Nick

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Hi everyone.

I recieved my dx in early Feburary after having a itchy mole removed on my stomach. Long story short, it came back as melanoma. It was .82mm, CL IV, no mitosis, no ucleration, and a non-brisk host response. Having a family history of this disease (my father died after a 13 year battle), I am and have been constantly worried about it.

Shortly after the dx, I had surgery to ensure clean margins and a SNB. I then went to MD Anderson to have them check me out as well and based on my aformentioned family history I was given a CT and MRI as well. Everything came back good and I am now seeing a derm every three months. Twice a year at MD Anderson and twice locally here in Arkansas.

I have a question for you guys and gals that have had node biopsies. My SNB was on my right groin (in mid Feb.). Over the past two weeks, my left groin has been in a constant state of mild to moderate pain. Is this normal? I went back to my surgeon and she didn't think much of it. She thinks it is probably just nerve damage. While I saw my nuclear scans during all my testing and can absolutely confirm that the mole drained to my right side, I'm not worried out of my mind that this has something moved over to my left side. Has anyone experienced pain in the opposite side of their body from their SNB?

Thanks for any input and my each of you find happiness in your journeys.

--Nick

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lrkg1234's picture
Replies 5
Last reply 5/4/2013 - 4:08pm
Replies by: Anonymous, thrashter, melissa ann

What does everyone think of bio chemo for a stage IV patient that is sort of recovering from other treatments??  IPI and Temodar. 

We are going to MD Anderson, meeting with Dr. Patel.   I expect this the bio chemo option to be presented to us.  I'd like to have more information, so that we can have better questions. It seems like a great thing to try at stage III or if you were in fairly good shape, but I question it when you struggling already.   I wonder if having a few weeks break could benefit the body and give IPI a chance to do it' s thing.

Sorry for asking so many questions, I'm sort of frazzled at this time.  I'll relax in a week or two and try to help others instead of being such a posting hog.

Lisa

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Debideb's picture
Replies 2
Last reply 5/2/2013 - 3:32pm

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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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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