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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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!

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KariSlaught's picture
Replies 13
Last reply 9/6/2013 - 8:57am
Replies by: KariSlaught, Anonymous, Janner

Hi,

 

I'm a 43 year old female who was diagnosed with melanoma yesterday.  So far, I only have the pathology report from the biopsy that was done last week by a PA at a dermatologist's office.  The path report says Clark's level 4 but Breslow depth .29mm.   I have an appointment with a general surgeon next week to talk about scheduling surgery to remove surrounding tissue.  This mole was on my back and it was about .4 cm in size.  I'm thinking that I am safe because the Breslow depth is .29mm.  After researching online I found that Clark's level 4 isn't so great.  Any input would be appreciated.  I'm going to schedule an appointment at a melonoma clinic after I talk to the surgeon.  Can I determine my stage by the path report?  Regression reads not present, Ulceration reads not present and Dermal mitosis is not identified.  

I will not be going back to the PA who did the biopsy or that office.  She called me and said I just needed follow up.  I'm not sure that she really knows what she is doing.  

Thank you!

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DonnaK's picture
Replies 11
Last reply 8/28/2013 - 1:45am

Hey.  After a whirlwind tour of WBR and 1 dose of ipilimumab, my husband is switching to dabrafinib due to his rapidly deterioriating condition. I was surprised to get the bottle today and see the dosage said take two pills (150mg total) once a day, instead of twice a day.  For those of you currently on dabrifinib/taflinar, what dosage are you taking? I put in a call to John's oncologist but wanted to check here as well!

Thanks!

Donna

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joycedixon's picture
Replies 9
Last reply 8/27/2013 - 11:23pm

After 5 months of zelboraf,the lesions on liver and lungs are GONE. Uptakes on lymph glands went from 12 to 2

so  very  happy that I have responded.I am on full dose .Joint pain ,skin problems and lately losing quite a bit of hair--

First couple of months were the worst with the joint pain.I figured out if I did not climb chairs,change babies on floor or twist my knee--I would be okay.

So I am careful how I move --It doesn't have to be strenuous and immune system overreacts.Once my knees get sore--my arms do from extra strength

needed.--

Doctors are not familiar with intermittent dosing.If you have been on zelboraf for many months,Have you had any time off?I am referring to a

week off every once in a while.I know they have not done research on humans but results were good on the mice.

 

 

 

 

 

 

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MattF's picture
Replies 6
Last reply 9/3/2013 - 4:02pm

so the FNA of mass in Salivary gland came back as Metastatic Melanoma

I saw Oncologist yesterday at UCLA

I asked the basic "right" questions...what he would consider this? reoccorence? Sat Met? Node? or just a MET in local region? or MET to distant organ?

He didnt want to answer any of this right now nor did he want to stage it....obviously we are at stage 3 but 

he wants a PET and then surgery to get in there and find out if the entire Parotid Salivary Gland is consumed? Or is it just a piece? or even possibly is it a node or group of nodes in the Salivary Gland itself. He also wants the tissue for Braf testing.

So it will be a Parotidectody (sp) and Lymphdectomy (sp)

He said after the scan and the surgery he will be able to actually use the pathology and surgery info to clearify what we are dealing wih and then move on to treatment.

Does everyone agree with this?

He did say no matter what they find he will recommend I start treatment after the surgey.

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Shez's picture
Replies 7
Last reply 8/24/2013 - 10:43pm

Does anybody have any experience with limb perfusion chemo?

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Good ARTICLE about how the portions of our Genomics works - including the genes and protein relationships that many people do not understand.

http://www.ncbi.nlm.nih.gov/About/primer/genetics_genome.html

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

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