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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arthur's picture
Replies 13
Last reply 9/14/2013 - 4:32pm

On July 11th I found out I had melanoma, the tumor was 6.5 mm thick and ulcerated. My oncologist ordered a CT/PET scan, MRI and a chest x-ray (the melanoma was on my right shoulder) all of which came back with no sign of metastatic disease. On August 6th I had my sentinel lymph node biopsy and excision of the local area, the surgeon got clear margins but one of the three lymph nodes removed had micrometastases. My surgery to remove more lymph nodes is tomorrow at the time of me writing this. Last week when I met with my oncologist he staged me at 3B given this information. We talked about treatment options since due to the thickness of the primary melanoma I'm at a high risk of recurrence.

I'm eligible to enter a clinical trial for ipilimumab, but I feel like Interferon would be the better choice for me. I'm 22 years old and in good shape and my oncologist feels I could handle the interferon much better which would allow me to "live" instead of spending the next year turtling up at my parent's house because of the ipilimumab since according to my oncologist it would "be rough". I'm pissed off this happened to me more than anything, I had to drop all my classes this semester and take medical leave from work(due to the surgery literally obliterating my shoulder lol), as I mentioned I'm only 22 and I've never once tanned in my life, just had some sun burn's from when I was younger but don't remember them ever being that bad. I'm looking for feedback from people who have taken either interferon or ipilimumab, anything you have to share would be greatly appreciated. Thanks for reading and feel free to ask my anything.

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/11/2013 - 7:06pm
Replies by: Anonymous

I have not seen any posts in quite awhile? How is she?

Charlie need not respond....

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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shansmith110's picture
Replies 6
Last reply 8/29/2013 - 7:47am
Replies by: POW, shansmith110, DeniseK

Hi out there,

Wondering if anyone has had experience with concurrently taking IPI, Debrafenib (or Zelboraf) and an MEK inhibitor?  My father is about to take his final (4th) dose of IPI next week, but he has 5 new brain mets, and doctor is probably recommending starting on Debrafenib and MEK inhibitor.  Doctors are weighing the option of having him take last dose of IPI.  

He is currently in hospital due to pituitary gland damage from the IPI, and extreme pain in his hip (probably from arthritis).  His hormone levels seem to be leveling off as of yesterday, so is fairly a-symptomatic now.

I have read of extreme liver toxicity with IPI / Zelboraf combo, but don't see much other documentation.  

Any advice or experience welcome.  We are very happy with my father's doctors, and are confortable with his recommendations, but interested in as much information as possible.

Thank you very much.

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SBeattie's picture
Replies 14
Last reply 8/31/2013 - 5:24pm

Been reading the board since initial sx. 9/2011...scalp. breslow 2.38; no ulceration, clean nodes...2a...but mitotic rate of 10...ouch...WLE...local recurrence 2/2012...WLE, again clean nodes other side...6 wks radiation..BRAF negative...last Mon. scans (10 months from previous, can't undo that tho) showed spot in apaex, rt. lung...2.2cm by 1.2 cm...schehduled for resection this week...but I need/want systemic therapy...am in excellent health otherwise...is that an oxymoron?! anyway...followed by  oncologist, not melanoma specialist...have asked her to of course, contact a specialist...she's spoken to Dr. g Linnete (?sp) in St. Louis...is he the best specialist there? (I'm close to st. louis)...should I really get to MD Anderson...wish I could get into the ACT trial at NIH, but I assume that involves ALOT of travel...of course so would MD...but can txs be given 'from a distance'? Are there airline specials for travel? and I guess insurance doesn't cover if it's 'out of neetwork'  I understand I at least need ipi ... but would like to get a hold of nivolumab combo!!! Anyway, any input appreciated...you all are SO VERY helpful...and THANK Y OU so very very much...I've asked alot of questions!!!

SB

Sally

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JerryfromFauq's picture
Replies 2
Last reply 8/25/2013 - 3:01pm

Is IL-2 Still Indicated for Melanoma?        

                  :   http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/...

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

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http://www.youtube.com/watch?v=lT8-mVqsyPU

New Medical Approaches to Treating Advanced Melanoma -- Sloan-Kettering

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

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kerstinmagnuson's picture
Replies 4
Last reply 8/25/2013 - 3:43pm

My dad has stage IV melanoma with involvement in the brain, liver, and lungs. In Nov. 2011, he received the first diagnosis of melanoma from a node in his belly button. It hadn't spread at that point, but a scan in the summer of 2012 revealed melanoma in one lymph node. The nodes in that area were all removed, but in September 2012, a scan showed that the cancer had become metastatic and was in his liver, lungs, and brain. At first, he received Ippi treatments, which were ineffective. He then had a chemo cocktail of three agents, one of which was Avastin. That was only moderately effective. He also had gamma knife surgery and radiation for his brain tumors. In May, he entered an anti PD1 clinical trial, but was just taken out of it after a scan revealed tumor growth in his lungs and brain. He is supposed to start more chemo treatment again, including an oral chemo that is supposedly more effective against brain tumors. Does anyone have any suggestions of some other treatments we could try? We are open to trying anything that might help. Thanks! 

 

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mclaus23's picture
Replies 5
Last reply 8/28/2013 - 4:03pm

I've told my dad numerous times to cover up if he even travels to the grocery store...he didn't listen and has photosensitivity to his face. Has anyone had this and if so how did you treat it? He will now be wearing a hat I gave him and long sleeves. I don't think he realized how harsh it is.

Thanks!
M

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I've told my dad numerous times to cover up if he even travels to the grocery store...he didn't listen and has photosensitivity to his face. Has anyone had this and if so how did you treat it? He will now be wearing a hat I gave him and long sleeves. I don't think he realized how harsh it is.

Thanks!
M

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Anonymous's picture
Replies 5
Last reply 8/25/2013 - 4:11pm
Replies by: Anonymous, JerryfromFauq, POW
Research August 22, 2013
 

 

 

Recent Childbirth Is an Adverse Prognostic Factor in Breast Cancer and Melanoma, but Not in Hodgkin Lymphoma

 

Eur. J. Cancer 2013 Aug 06;[EPub Ahead of Print], H Moller, A Purushotham, KM Linklater, H Garmo, L Holmberg, M Lambe, D Yallop, S Devereux

 

 

 

 
TAKE-HOME MESSAGE

 

Prognosis is poor in women with a pregnancy-associated breast cancer or melanoma (pregnancy-associated cancer defined in this study as childbirth within 1 to 5 years prior to the cancer diagnosis). The authors suggest cause independent of tumor stage, possibly a biological mechanism, is at play.

 

ABSTRACT

Background: The relationship between gestation, childbirth and cancer prognosis is unknown for most cancers (e.g. Hodgkin lymphoma), whereas a body of evidence exists for melanoma and breast cancer.

 

Methods: The national cancer registration and hospital discharge data for women in England (1998-2007) were linked, and the records for Hodgkin lymphoma, melanoma and breast cancer were indexed as to whether women had delivered a child in separate time periods prior to their cancer diagnosis. Survival analyses were conducted in order to characterise prognosis in relation to childbirth, with statistical adjustment for age and (where possible) stage.

 

Findings: For melanoma and breast cancer, survival was strongly reduced in women who gave birth in the year prior to cancer diagnosis. The age-adjusted hazard ratios (HR) with 95% confidence intervals (CI) were 2.06 (1.42-3.01) for melanoma and 1.84 (1.64-2.06) for breast cancer. The associations were only slightly attenuated by further adjustment for tumour stage. For breast cancer, the excess death rate in women with a recent childbirth peaked at 2years and remained elevated for 6 to 8years. Previous childbirth had no overall effect on the outcome of Hodgkin lymphoma.

 

Interpretation: Melanoma and breast cancer prognosis are adversely affected by recent gestation and childbirth in a way that is not due to stage of the cancer, but rather to inherent biological properties of the tumours. Possible biological mechanisms include immunosuppression (melanoma), the hormonal milieu in gestation and a tumour promoting microenvironment post-partum (breast cancer).

European Journal of Cancer
Recent Childbirth Is an Adverse Prognostic Factor in Breast Cancer and Melanoma, but Not in Hodgkin Lymphoma
Eur. J. Cancer 2013 Aug 06;[EPub Ahead of Print], H Moller, A Purushotham, KM Linklater, H Garmo, L Holmberg, M Lambe, D Yallop, S Devereux

The publisher has made this article available for free until 9/5/2013 12:00:00 AM .

Access this article now

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http://www.drmirkin.com/nutrition/honey.html

High Fructose Corn Syrup

 

When did we start having more and more cancer?

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

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casagrayson's picture
Replies 5
Last reply 8/24/2013 - 9:27pm

My view of the board is all messed up.   Just text ... no tables or anything.  Anyone else?

Strength and Courage,

Susan

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

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/25/2013 - 4:05pm
Replies by: JerryfromFauq, POW

Hi all, I am currently 32 years old, and I was almost four years past my initial diagnosis of Stage IIIa malignant melanoma, when I was diagnosed with a second primary in March of this year at 31. I had another WLE done, though with much smaller margins as this was a much smaller mole and Stage I. My concern (among many) is that I now have this white spot that has spread across the pink of the scar, and if it is pressed, I get a sharp pinching pain. Has anyone else had anything like this? It has been about 5 months since the WLE, so I'm not sure if it's just a symptom of healing, or if I should be concerned.

Additionally, I am having a really hard time with lymphedema right now, but not the way I normally present. This time, most of my leg is actually LESS swollen then other flare ups, except the top of my foot and my ankle. I also get a sharp burning pain up the top of my foot into my shin when I point my toe, and if I press on the front of my shin, it feels like it is deeply bruised. I had an ultrasound for DVT, which thankfully was negative, also no cellulitis, so that is good, but no one seems to know what could be the cause of the pain. I have been resting on the idea that perhaps it's just sensitivity caused by the swelling on the top of the foot, but if anyone has any insight, it would be greatly appreciated!

Don’t say your world stopped [following a cancer diagnosis], you can make the choice today to turn it around so that your world will only just begin. It is a good experience to learn how to overcome a cancer diagnosis and to be in charge of your body rath

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