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 5
Last reply 6/23/2012 - 1:32pm

My mother has stage IV melanoma. She has 5 small lesions in her brain and a few other small ones in her lungs. She was diagnosed 8 months ago and did not really respond negatively or positively to chemo. Doctors have recommended WBR but she dies not want to do it. She was also told by docs that they cant perform gamma knife if there's more than 3 tumors. What are the options then?

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Rdmstm's picture
Replies 3
Last reply 6/23/2012 - 12:41am
Replies by: Cindy33, gabsound, kthekhal

Yesterday I visited a wonderful dermatological surgeon at the Univ. of Penn. regarding my recent diagnosis of insitu. Since I traveled over an hour to see him he was nice enough to perform a second excision yesterday, so I wouldn't have to make an additional trip later. While was there I had him look at a mole on my leg that looks 'wrong' to me. He said since my recent diagnosis of insitu, I could have it removed or have my local dermatologist watch it. I asked him if he could remove it and he stated that I need to visit my local dermatologist. I visited my dermatologist 4 days ago and she examined this mole and said it seemed to look fine. This mole is on my body pictures take 1 year ago, but I think it NOW looks different. I have an appointment in 6 days to have a biopsy done of this suspicious mole. I am fraught with worry that this mole will come back as a more advanced stage of melanoma and still struggling to believe this is happening....

Any words of advice are extremely appreciated!!! Thank you.

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gabsound's picture
Replies 4
Last reply 6/22/2012 - 11:56pm

Hi,

My last scans showed mostly good news. No growth in any lung lesions, bones look pretty good. Still have lesions in the liver, but less active. One liver lesion did grow and show increased activity on the PET.

Dr thinks the Yervoy could very well continue to work and we could watch and wait. He also offers to do another course of Yervoy, but wants to irradiate the lesion in the liver that is growing.

Has anyone had this done in their liver? Wondering how painful and what to expect. The oncologist said they will likely do a biopsy first then they have to put in some markers around the lesion for the machine to track. From what I read, after that it's 1 to 5 treatments.

I had the first dose of second round of Yervoy yesterday.

Also had our first real vacation since Dx in Jan 2011. We spent 10 days in Maine. Beautiful state! Also went to the museum of Fine Arts in Boston. Very relaxing. It was hard to see all the pale people (like me) on the beach sitting in the sun. I still enjoyed the beach , but did it late in the day or early in the am with sunscreen, a hat, pants and long sleeves.

Julie in Las Vegas

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lyndaloo's picture
Replies 5
Last reply 6/22/2012 - 7:23pm

Hello - My husband had lung surgery Feb/11 and a craniotomy June/11 with WBR and targeted radiation to other brain lesions.  His 4th (last) IPI infusion was Feb/12. This weeks scan results showed all body tumors and skin tumors have disappeared, the brain is also clear except for one lesion that they believe is responding to IPI and is showing signs of "exploding" and breaking apart.  This is encouraging news, what a blessing!!!!  The ipi treatment caused alot of edema in the brain but happy to report he is off all steroids now.  He is now left with poor eyesight.  We are seeing an eye doc today and another eye doc on Monday to see if they can help him.  We don't know if this is the fallout of the brain radiation since one of the tumors was near the ocular nerve, or if the ipi has caused this.  I am hoping they can help him, as he cannot work/drive with his vision impairment and is self employed.  All this aside, we are overjoyed with the results!!!

Loving wife Lyndaloo

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bikerwife's picture
Replies 8
Last reply 6/22/2012 - 6:45pm

Lynn had his 12 week scans after yervoy they showed some shrank and went away but one in chest cavity grew a little tumors on kidney stayed the same our dr said we could wait 2 months and scan again but he felt waiting to see if they grow. Isn't a good idea so he would prefer that lynn start zelobraf. So Monday he will start. I'm very scared read so many things on here about side effects.

I told the dr I had read that it only works for 7 to 8 months he said all patients are different and he had a patient that had been on it for 2 years. He also said it was the miracle drug.

Dr. Shirai just got back from a conference in chicago and that there is somr trails going on that look very promising and he would be starting them at musc.

I guess all we can do is live day to day make the best of it and hope for the miracles God has promised us. I pray for this board daily may God bless each of you.

Thanks for listening everybody I'm one scared worried wife. I love my Lynn so much. I wish I could just reach out and talk to some of y'all goes you truly know what I'm feeling any help and advice would be appreciated.

God Bless

What God leads u to he will. Lead you through

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Hi,

 

I am 33 year old Canadian newly diagnosed Stage 1B, had my WLE and SLNB last month and while all the tissue and nodes were clear I still have some questions about original pathology.

Originally, I had a shave biopsy which was bisected; one pathologist reported 1 mm and other 1.45 not ulcerated Clark 3  (one patholgist said deeper levels of skin show involvement of deep and lateral resection margins which were not reviewed by other pathologist) Surgeon didnt seem concerned when I pointed this out. 

Since it was a shave biopsy I  expected depth to increase but onc surgeon told me there was absolutely no evidence of melanoma in wle tissue so depth remains 1.45 (seems like this never happens with shave biopsies, am I right). Surgeon said they throughly examine tissue with hundreds of slides and hence 3 week wait for results!! She said I should be reassured it didnt have any further melanoma in wle. But somehow I am not.

Histologic Type: Other - Lentiginous. Now is this the same as "lentigo maligna melanoma" because that is rare  associated with elderly/sun damaged and slow evolving which is not my case. Noticed it on posterior upper shoulder/arm in shower 6 months ago. It was brown and symmetrical ( glad I insisted I get it off soon!)

I have also read its difficult to decipher between lentigo maligna and lentigo maligna melanoma. Just seems funny because pics Ive seen online dont look anything at all like mine.

Mitosis is listed as 3 by one pathologist and >1mm2 by the other. Peripherl margins say both involved by invasive melanoma and involved by melanoma in situ. Even though I should be relatively pleased with my surgery outcome (though realize no guarantee) I am now wondering if I should ask for another pathologist to examine orginal tumor. Will it change my staging - probably not but I am so scared because 1.45 seems relatively risky. What is your opinion? Thanks and best wishes to you all.

Francesca

 

 

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The Melanoma Research Foundation (MRF) invites you to join a discussion of the factors behind the alarming increases in melanoma rates in the U.S. population, particularly among young people; the role of legislation and regulation in reducing the risk of diagnosis; and important scientific updates from the recent American Society of Clinical Oncology (ASCO) annual meeting.

When: Wednesday, June 27th, 1:30-2:30pm

Where: Rayburn Office Building, Room #2218

Scheduled speakers include:

  • Representatives Brian Bilbray(R-CA), Carolyn Maloney (D-NY), Rosa DeLauro (D-CT) and Charlie Dent (R-PA)

 

  • Dr. Jeffrey Gershenwaldof the MD Anderson Cancer Center in Texas who will provide an update on the 2012 ASCO conference and the most promising and immediate opportunities for treatment breakthroughs

 

  • Diana Dreman, former Miss Colorado, and her mother, Rebecca King-Dreman, former Miss Colorado, former Miss America and Stage IV melanoma survivor, who will discuss the personal impact of melanoma and the urgency of discovering new treatments

 

Please RSVPto the MRF at 202-347-9675 or by email at info@melanoma.org.

  If you are not in DC, you can still participate by contacting your member of Congress and urging them to attend.

 

Thank you!

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Randy437's picture
Replies 11
Last reply 6/22/2012 - 11:07am

I have had single mets removed from both lungs, brain, and small intestine.  I've been NED for 2 1/2 years.  Is anyone aware of trials for NED patients?  I do not have the BRAF mutation.  Thank you.

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Anonymous's picture
Replies 17
Last reply 6/22/2012 - 4:13am
Replies by: LynnLuc, Charlie S, Anonymous, Janner, Gene_S, washoegal

Are my odds of another higher than for my siblings since I've already had one?  We have same skin type, same type of moles.  We have skin that tans, doesn't burn easily.  We do freckle and have multiple freckles but not that many moles.  I am a little confused as to how increased my odds are and how carefully I should be watching for a new one after my in situ diagnosis?

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Hello,

New to the board and looking for some guidance.  My father was diagnosed with Stage IV Melanoma in January of this year.  He has been on 4 treatments of Paxil/Carboplatin, but recently his scans showed that the treatment was no longer working.  We are trying to get him into a PD-1 trial, but live in Iowa so the travel to the coasts to participate is difficult.  If we are unable to get inot a PD-1 Trial, we would like to consider Yervoy, but want to understand the risks.  His doctor also recommended Tamazolide, which I'm not thrilled about as it is not very effective.  Any stories/recommendations?  Wish there was a crystal ball.....

Thanks,

Jessica

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JennR's picture
Replies 3
Last reply 6/21/2012 - 5:14pm
Replies by: Janner, Anonymous

I had a suspicious mole removed at the derm's office a couple of weeks ago and got the results today.  The doctor called me personally and said that it was concerning, but he didn't feel it was cancerous and because of my family history of melanoma, he wanted to see me every four months.  I asked for a copy of my report and now I'm reading conflicting things online.  It sounds like some doctors recommend going in and getting better margins.  Here is what my report says:

PATHOLOGIC DIAGNOSIS:

Lentiginous Melanocytic Nevus, Compound Type, Irritated (Compound Melanocytic Nevus with Architectural Disorder)

 

MICROSCOPIC DESCRIPTION:

This is a compound nevus.  There is pigmented parakeratosis present.  There is architectural "disorder" characterized by a lentiginous proliferation of melanocytes between irrecgular nests of cells along the dermal-epidermal junction, highlighted by MART-1/MelanA immunohistochemical staining.  There is underying fibroplasia of the papillary dermis.  The intradermal component is bland appearance and matures with depth.  Original and deeper sections were reviewed.  (Compound Clark's Nevus or Compound Dysplastic Nevus)

 

Can anyone help me decipher what this really means?  Do I need to get a second opinion or just follow his recommendation of being seen every four months?

Thanks in advance for your help!

Jennifer

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I had a suspicious mole removed at the derm's office a couple of weeks ago and got the results today.  The doctor called me personally and said that it was concerning, but he didn't feel it was cancerous and because of my family history of melanoma, he wanted to see me every four months.  I asked for a copy of my report and now I'm reading conflicting things online.  It sounds like some doctors recommend going in and getting better margins.  Here is what my report says:

PATHOLOGIC DIAGNOSIS:

Lentiginous Melanocytic Nevus, Compound Type, Irritated (Compound Melanocytic Nevus with Architectural Disorder)

 

MICROSCOPIC DESCRIPTION:

This is a compound nevus.  There is pigmented parakeratosis present.  There is architectural "disorder" characterized by a lentiginous proliferation of melanocytes between irrecgular nests of cells along the dermal-epidermal junction, highlighted by MART-1/MelanA immunohistochemical staining.  There is underying fibroplasia of the papillary dermis.  The intradermal component is bland appearance and matures with depth.  Original and deeper sections were reviewed.  (Compound Clark's Nevus or Compound Dysplastic Nevus)

 

Can anyone help me decipher what this really means?  Do I need to get a second opinion or just follow his recommendation of being seen every four months?

Thanks in advance for your help!

Jennifer

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ringo412's picture
Replies 2
Last reply 6/20/2012 - 4:00pm
Replies by: MikeWI, Anonymous

hi , i am a spouse of a stage 3b melanoma patient, he has been on treatment with interferon for 4 months, he has lost 33 lbs (weight is 157), is this amount of weight loss normal, he is getting too thin, the doctors have took him off the interferon shots for a week, he goes next week to see his oncologist, im just concerned that this weight loss will get even worse, has anyone been thru this with the weight ? im very concerned, i know he needs to take this, he has 8 months left, what do they do in a situation of weight loss?

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Cindy33's picture
Replies 9
Last reply 6/20/2012 - 12:41pm
Replies by: Janner, Cindy33, ALM, Fen, Gene_S

Hello All,

Thank everyone for posting. I am finding comfort here and realizing I am not alone. I have had 2 primary melanomas and one severely atypical. One SNB, 3 WLE and am scheduled for one more WLE this week. None of my moles looked suspicious to the docs and they have been shocked when they come back melanoma/atypical. I currently am waiting to get stitches removed from MIS and will also have WLE on the same day. Waiting for results on several other biopsies, and have identified one suspicious changing mole and three new ones!  I am sick of being cut on and stitched up but grateful for the chance to catch these moles early.  I have had so many biospies I have lost count.

I am interested in mole mapping, but don't know much about it. I know OHSU does it, but do not believe insurance covers it. I see that I can order a software mole mapping program. Has anyone used that?  I am worried about what this means for my children and grandchildren. I am on a roller coaster of fear and panic. I am stage 1, but thinking that at some point, sheer numbers of problem moles might change that. 

Anyone with tips regarding mole mapping? Also, how do I know my dermatologist is acutally a melanoma specialist? I am in the Pacific Northwest, about 1 hour from Portland. I am considering going to Fred Hutchinson Cancer Center in Seattle or Angels. Overkill? (pun intended) I like my derm and PA, just want to make sure I am doing what I need to do to take care of myself. 

Thank you and God bless you all. 

Cindy

Ring the bells that still can ring.

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Kellie-T's picture
Replies 2
Last reply 6/20/2012 - 9:45am
Replies by: Tina D, ALM

Just an update. Zelboraf is working! First 8 weeks mass shrunk half it's size. 2nd 8 weeks mass is back to normal size lymph node! Started at max dose but reduce to six per day after the first week due to side effects. The side effects are very tolerable. Making life adjustments due to the sun sensitivity and have become an expert with an eyebrow pencil. All and all, living life and grateful for it!

Life is not by accident. Make every minute count.

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