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 19, never been to a tanning bed, and have no family history of skin cancer. In 3 months a dark, misshapen mole with a yolk appeared on my temple. After removing it and sending it to a pathology lab, they found that it was atypical and possibly melanoma in situ developing. However, I am confused and getting antsy because my Derm is sending the biopsy in to a melanoma specialist for a second opinion, because the first pathology revealed a traumatized nevus (?) and asked if I had previously had surgery in that area or an injury. I have not had any injury or surgeries on my face, so now I am not sure what my Derm is thinking or what to expect back on the second opinion. Any similar experiences?

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pamkepler's picture
Replies 1
Last reply 7/2/2013 - 3:38pm
Replies by: 5374brian

My husband has been diagnosed with metastatic melanoma oct 2012. He has been on Yervoy, Zelboraf, and now anti pd1. I was looking for caregivers of patients that are on this same journey:) Blessings to those fighting patients and caregivers!!!

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Anonymous's picture
Replies 12
Last reply 7/2/2013 - 12:23pm
Replies by: Anonymous, Richard_K, Janner, HopefulOne

I was diagnosed with MM in Dec. 2011. I had a WLE 1 full cm. margin to level of fascia one week after being diagnosed. I went to an oncologist a month later, even though my derm said it was not necessary. The oncologist said, "They took a pretty big chunk out of your leg." She reassured me that I had done everything that is required for my stage and that my scar looked great. I know that I have learned a lot about this over the last year and a half and I wanted to get opinions from all of you on my path report. I have visited this site often over the past year and have finally built up the courage to join. I realize that support is necessary forever. I am a 35 year old mother and I always worry about this cancer returning. I sometimes feel like I worry about this too much and I could use your advice and opinions. I know you are not all drs.but I believe patients have a lot to share too, especially on the more personal levels. Thank you. I am also wondering if anyone knows anything more about this study that was just published in the, Journal of American Surgeons. When I read studies like this I realize that this is something that will affect me forever. I do appreciate my life and try to live each day to it's potential, but some days I wake up with MEL on my mind.

http://www.journalacs.org/article/S1072-7515(13)00225-1/abstract

The original mole was one that I had forever. It started to change after my pregnancy. My daughter is now 10

FINAL DIAGNOSES: Melanoma, narrowly excised in planes of sections examined (skin, left medial lower leg, shave biopsy)
Histological subtype: spitzoid
Breslow thickness: .31mm
Clark level : II
Ulceration: none
Mitotic rate: none
vertical growth phase: no
vascular invasion: no
angiotropism: no
neural invasion: no
microsatellites: no
features of regression:
Early (TILS) Yes, non-brisk
Intermediate (angiofibroplasia with or without TILS): No
Late ( fibrosis and loss of rete ridges) : no
precursor lesion: none identified
predominant cell type: spitzoid
microscopic description: Sections of a scoop excision of skin reveal an atypical compound melanocytic proliferation. The junctional melanocytes are plemorphic and show both prominent nucleoli and nuclear pseudo inclusions. There are expansile nests and single cells with focal pagetoid upward migration. The underlying papillary dermis contains fibroplasia. Patchy perivascular lymphocytic infiltrates and a rare nested melanocytes. Dermal mitotic figures are not identified.

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toes123's picture
Replies 2
Last reply 7/2/2013 - 12:21pm
Replies by: Anonymous

I have scheduled a visit with a doctor but in the meantime can someone give their opinion if this looks like a early stage melanoma ? I am worried

because it is on the side of my toe ??? 

http://postimg.org/image/973xrh8dt/

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Wetterhorn's picture
Replies 9
Last reply 7/2/2013 - 11:22am

Been a while since I've posted here as I have had the luxury of being NED since Aug 2009, however a recent appt has unfortunately changed that. Last week a routine blood test showed that I was anemic and had very low red blood cell counts. Doc ordered immediate Pet/CT which showed an active mass in my small intestine, near my liver. I have been experiencing some side pain for the last few weeks but wrote it off due to holiday diet. A subsequent CT showed that indeed there is a mass, likely melanoma in the small intestine, approx 3.6 x 2.9 cm large.

I am in NYC, being treated at Sloan Kettering (Dr. Carvajal) and NY Presbyterian (Dr. Taback). Was recommended that since I am symptomatic, surgery would be the best course of action. Curious to know if anyone else out there has had surgery on the small bowel before to remove melanoma? This appears to be a single lesion.

My brief history:

Aug 2007: DX with melanoma on left knee. Wide area excision and positive sentinel node.

Sept 2007: Lymph node dissection, rest of nodes came back negative.

Nov 2007-Nov 2008 - high dose / low dose Interferon

April 2009:  VATS on left upper lobe of lung with 1cm tumor removed. Same surgery had a sub q removed from thigh.

Aug 2009: had another sub q removed from left thigh. Been NED until last week.

Getting an opinion at NY Presbyterian as well.

If you have had surgery on the bowel (small intestine) I would like to hear from others about recovery time, complications, how difficult surgery was  etc.

Thanks

Wetterhorn

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CLPrice31's picture
Replies 4
Last reply 7/1/2013 - 9:19pm

Hi everyone. It has been a while since I've posted. I hope everyone is doing well.

I am still in a double blind clinical trial with a placebo or 10/mg of ipilimumab. I'm in the maintence phase so I only receive the infusion once every 3 months. My last dose was on June 14th. My scans on June 13th showed no evidence of disease. The reason I'm writing is because I went in for routine bloodwork today, like I do every few weeks after my treatment, and my oncologist called this afternoon to let me know my liver enzymes are elevated. Has anyone else experienced this? Was it related to the drug?

I'm to return a week from today for more bloodwork. If the numbers are the same, or higher, he said we would have to do "further investigation."

Anyone, advice?

Thank you in advance.

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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Anyone else have both diseases?

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I was diagnosed with MM in Dec. 2011. I had a WLE 1 full cm. margin to level of fascia one week after being diagnosed. I went to an oncologist a month later, even though my derm said it was not necessary. The oncologist said, "They took a pretty big chunk out of your leg." She reassured me that I had done everything that is required for my stage and that my scar looked great. I know that I have learned a lot about this over the last year and a half and I wanted to get opinions from all of you on my path report. I have visited this site often over the past year and have finally built up the courage to join. I realize that support is necessary forever. I am a 35 year old mother and I always worry about this cancer returning. I sometimes feel like I worry about this too much and I could use your advice and opinions. I know you are not all drs.but I believe patients have a lot to share too, especially on the more personal levels. Thank you. I am also wondering if anyone knows anything more about this study that was just published in the, Journal of American Surgeons. When I read studies like this I realize that this is something that will affect me forever. I do appreciate my life and try to live each day to it's potential, but some days I wake up with MEL on my mind.

http://www.journalacs.org/article/S1072-7515(13)00225-1/abstract

The original mole was one that I had forever. It started to change after my pregnancy. My daughter is now 10

FINAL DIAGNOSES: Melanoma, narrowly excised in planes of sections examined (skin, left medial lower leg, shave biopsy)
Histological subtype: spitzoid
Breslow thickness: .31mm
Clark level : II
Ulceration: none
Mitotic rate: none
vertical growth phase: no
vascular invasion: no
angiotropism: no
neural invasion: no
microsatellites: no
features of regression:
Early (TILS) Yes, non-brisk
Intermediate (angiofibroplasia with or without TILS): No
Late ( fibrosis and loss of rete ridges) : no
precursor lesion: none identified
predominant cell type: spitzoid
microscopic description: Sections of a scoop excision of skin reveal an atypical compound melanocytic proliferation. The junctional melanocytes are plemorphic and show both prominent nucleoli and nuclear pseudo inclusions. There are expansile nests and single cells with focal pagetoid upward migration. The underlying papillary dermis contains fibroplasia. Patchy perivascular lymphocytic infiltrates and a rare nested melanocytes. Dermal mitotic figures are not identified.

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Anonymous's picture
Replies 5
Last reply 7/1/2013 - 11:09am
Replies by: awillett1991, Anonymous

Sorry to be anon here, just scared. Recent MRI showed a new 5mm met near the outside area of my brain which had grown from 3mm on prior scan 2 mo ago to 5mm. I was "stable" to get Into the trial - as in they didn't notice it. Dr says as long as they don't treat it, I am still in the trial. is this really right? Oncologist not worried about it and rad onc says location is "good" he is fine w watch & wait as it seems to be growing very slowly. MRI states

There is a 3rd enhancing lesion in the left parasagittal parietal lobe which measures 5 mm (previously measuring 3 mm).

Very nervous abt this whole thing. Sounds nuts not to treat but need the trial.. also though, have other life threatening areas much bigger, inoperable, and more important and desperate for this PD1 to work having run thru the usual suspect drugs. Not very far into the trial - only a few doses.

Any advice?

THX!!

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I have scheduled a visit with a doctor but in the meantime can someone give their opinion if this looks like a early stage melanoma ? I am worried

because it is on the side of my toe ??? 

http://postimg.org/image/973xrh8dt/

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ecc26's picture
Replies 6
Last reply 6/30/2013 - 10:42pm
Replies by: Phil S, ecc26, DeniseK

Hello, 

Nearly finished (1 day left) with a 3 week course of WBR and mostly doing just fine, but over the last 4-5 days my ear canals have gotten sore. I'm aware that this is not uncommon for a side effect, but I'm wondering if there's anything I can do to help ease the discomfort- especially at night since it does keep me awake some. I know that some advocate ear rinses, etc but my understanding of those is that they help clear debris, not relieve discomfort. Any suggestions from those who have done WBR?

Thanks

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http://clinicaltrials.gov/ct2/show/NCT01738139

The goal of this clinical research study is to find the highest tolerable dose of the combination of ipilimumab and imatinib that can be given to patients with advanced cancer. The safety of this drug combination will also be studied.

Ipilimumab is designed to increase the immune system's ability to fight cancer.

Imatinib is designed to bind to certain proteins on the tumor cells, which may prevent the cells from growing.

I'm me, not a statistic. Praying to not be one for years yet.

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flvermonter's picture
Replies 2
Last reply 6/30/2013 - 3:47pm
Replies by: flvermonter, kylez

Hello again,

we had great news on the lung cancer once radiation..only 5 SMS radiation treatments. meet with melanoma once this wed. for plan of radiation.

however, his left arm was so swollen and now with the compression sleeve is sost back to normal. the swelling in his legs we went yo our MD. he did ekh and was OK. the blood work came back with indication of Cong heart failure. we need to meet with the MD. will that stop his radiation? he doesn't want to tell Moffitt afraid he wont get the treatment. I am so afraid and stressed.

Hugs to all, patients and care givers.

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Hi Linda,

Is SRS a go for Bill Monday?

2 primaries; lung/brain mets in past; paratracheal lymph node currently; participating in  Opdivo/Lirilumab trial

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François's picture
Replies 1
Last reply 6/30/2013 - 8:50am
Replies by: Tina D

I just finished my 6th month on Zelboraf, 8 pills a day, having CT scan every 8 weeks showing that 3 lungs mets disappeared since the very beginning of the treatment. Last week ct scan results showed 3 new 20 mm spots on the liver. Radiologist suggest that they could be mets but my onc is a bit surprised and He book me a Pet scan next week. He doesn't believe that lungs mets didn't come back at the time that liver mets are 20 mm, considering that previous ct was cleared. I am very disappointed because I feel very good, no pain, except typical side effects. Two years ago after being 2 weeks on the hospital after surgery and having 3000mg every day of Paracetamol, I had the same problem with a Pet that showed 2 doubtful met that finally were nothing. Today, due to Vemurafenib, I have my GGT up in the clouds raising at 600/800 and I hope it could be the answer. I also had previously fatty lever due to alcohol ingestion. I will keep you informed.

François

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