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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Anonymous's picture
Anonymous
Replies 0

since this disease robs some very young people of their life, and there may be parents reading this forum I thought this article was useful

http://parenting.blogs.nytimes.com/2013/03/03/a-high-functioning-bereaved-parent/

 

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Snickers60's picture
Replies 5
Last reply 5/6/2013 - 7:38am

But last fall when we were sitll kind of in the heat of the battle and I was so sick, Wayne found a mole on my back.  He said:  DARLING, you need to get this mole seen about.   I did not think I was the MOLE PROBLEM TYPE.    He looked at it again last week and WOE.......what an ugly mole.  It has changed and it is much uglier.    I have an appt. for a biopsy on Monday !    

I know this sounds absurd with all we've been through with Wayne, but I have been so worried over him and I've had a lot of my own other issues and very debilitated with joint surgery that I just did not follow up.    

LIGHTNING CAN'T STRIKE TWICE CAN IT ! 

I think it's probably a dysplastic nevi.............fingers crossed - prayers said. 

Nancy (devoted wife of 3 X Warrior Wayne)   

Wayne is doing great by the way.   I've just been toooo ill to be on here.  

BLESSINGS AND HEALTH TO YOU ALL......

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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5374brian's picture
Replies 3
Last reply 5/5/2013 - 11:10pm
Replies by: 5374brian, lrkg1234, cltml

My wife finished her 4 treatment of Ipi on 3/19. A week before her final treatment the tumor on her throat began to bother her. By looking in her throat it looked as the tumor had grown into her throat area causing some obstruction. We called Moffitt and the oncologist said to come on in for it to be checked. They did a scan of her neck. The scan showed that the tumor had not grown any since Jan. 2013. They assured us that she has plenty of room for drinking and eating but due to it being a high traffic area it must feel strange. The reason given for the feeling of the size change was the tissue and lymph nodes are swollen in that area. We are scheduled April 4th to see a throat specialist at Moffit to see if he has an opinion. The next thing that has started happening now is the lesion in the throat seems to be building up mucus and causes her to gag and spit on a regular basis. Whatever the stuff is coming from the lesion in the throat in the mornings it causes her to have a sour stomach. She said it is the worst tasting stuff she can imagine. Is all of this the treatment attacking the tumor? What is the stuff dripping from the tumor? Thanks for your opinions and help. 

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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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POW's picture
Replies 11
Last reply 5/4/2013 - 5:26pm
Replies by: POW, MeNDave, Anonymous, casagrayson, Mickey n Jo, Sherron, sharmon

I just posted on the Off-Topic forum basically asking the question: "Is there is a "healthy" way to grieve?" ( See thread "Confused by my grief counselor".) I know that everyone grieves differently, but should I accept the advice of an experienced hospice grief counselor or should I do what comes naturally to me? I know that other people have lost loved ones in the past but this is the first time for me, so I would appreciate your insights.

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My husband recently had a SLNB and a right cheek excision with plastic surgery. Although the results said there was no evidence of residual invasive melanoma on his cheek, it also states "residual melanoma in situ in a background of cicatrix. It then goes on to state, melanoma in situ measures0.4 cm in horizontal dimension and lies 0.4 cm from the nearest epidermal edge or resection. All surgical margins negative for melanoma.
The lymph node came back negative for melanoma. I am very confused. Can someone more experienced than I help me understand this? BTW the histologic type is nodual which I understand to be the fastest growing.

Thank you
Arlene

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BrianP's picture
Replies 6
Last reply 5/4/2013 - 4:54pm
Replies by: BrianP, Bubbles, kylez, Randy437

I'm traveling to Duke on Monday for surgery on Tuesday to remove a "melanoma like" growth in my small intestines (see "Blood in Stool" thread for details on my exciting rollercoaster ride the last few weeks).  I say "melanoma like" because the gastroenterologist only looked at the sight through a balloon endoscopy procedure.  He chose not to biopsy it because he did not want to mess with the site because it had clearly been bleeding and whether the biopsy came back as melanoma or not he felt it needed to be removed.  Good news is I've had petscans, CT scans, and multiple colonoscopies and endoscopies and it looks like this is the only spot.  Hopefully my surgery will confirm this and I'll be back to NED.  17 months ago when I was orginally classified as stage IIIB NED there weren't too many treatment options (observe, interferon, or IPI vs interferon trial).  I'm just now starting my research to formulate my plan of attack following the surgery.  Does anyone know of any trials for stage IV NED?

Thanks,

Brian

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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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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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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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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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Colleen66's picture
Replies 18
Last reply 5/3/2013 - 7:13am

Hi all.  I am starting Interferon in December.   I've read that it may effect my thyroid.  Has anyone had a problem with this?  Did you have symptoms?  And any other knowledge of this would be much appreciated. 

Also, I am bi-polar with major depression and anxiety.  I have been hospitalized and also have had ECT treatments.  I have talked to my psychologist and we have a basic plan in place.  I'm not really concerned.   My meds have kept things well controlled for about a year or so.  Should I be More concerned about this?  Has anyone experienced severe depression while on Interferon?

I also have Celiac Disease.  Would this be a concern for me?

Thanks for any replies,

Colleen 

Live!

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Anonymous's picture
Replies 5
Last reply 5/3/2013 - 3:14am
Replies by: gary1976mary, austintx

I searched the site and found a few posts on this trial but nothing recent.  Does anyone know where the trial is currently accepting participants or if they are?  Has anyone participated?

 

http://www.fiercevaccines.com/story/polynomas-melanoma-vax-pushes-late-s...

 

This article makes it sound like a great option over interferon. 

 

Thanks for any info.

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