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 2
Last reply 6/1/2012 - 11:50pm
Replies by: Swanee, Janner

Hello,

I am Stage 1b patient with 8 years post diagnosis. I just accidently discovered a lump in my hip and I am scared to death about possible subcutaneous tumor. I found it when I accidently touched the area, it is completely under the skin, not protruding from the sking and nothing is visible on the surface. This lump is small (about 5 mm?) but I cannot completely feel it's shape (take between my fingers); not sure if it is attached to something deep and whether I can move it around. It is not hard but ruther firm. Well, I made an appointment with my melanoma specialist in few days but this waiting time is killing me. I continue to touch this area.... What is might be???? I am scared.

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eerye70's picture
Replies 10
Last reply 5/22/2012 - 10:46pm

Ok, i have an appointment today. I had in situ removed from right shoulder november 2011. Now i have a mole on my right leg that has changed and i am seeing the dr today. I also have an enlarged lymph node on that side and pain under the arm on right side. I have found out in the last week that i have an uncle and maternal grandmother who have had melanoma, my uncle died from it. I just think i am wandering into that crummy place where you are super aware of everything. That every pain, every lump or bump or sore throat or headache is going to make me freak out.

I have a headache every day, literally for a solid month. But it is also the worst allergy season on record. I am so tired i literally want to sleep every single day. all day long. I just think i am starting to get too paranoid.

I tried to look up some pictures of subq melanoma to see/compare for comfort. But all i see are the typical moles with changes and that is not helpful, because my mole looks very much like some of them. I cant decide if my lymph node is a lipoma or something else.

 

I dont know, but how do you get through it? How do you turn off the mind, how do you stop dwelling on these things and stop obsessing over it? I am so much better than i was when first diagnosed. I sleep at night now. I no longer have anger and anxiety, or not so much anxiety. the anger is alot better.

but in order to enjoy the benefits of being in situ, i really need to be thankful of in situ, but if all i do is focus on the "holy craps" how do i? any advice, suggestions?

Also, i didnt tell my family. Aside from my husband and a few close friends, i didnt share with the sibs or mom. I just don't want to answer a ton of questions about it. Did anyone else keep this sort of thing to themselves? any thoughts? I just feel somewhat lost, What now?

Debbie

Time to put on your big girl panties and deal with it!

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benp's picture
Replies 14
Last reply 5/28/2012 - 1:22pm

Hi, 

I've been on GSK's BRAF inhibitor since July 2011. After experiencing severe abdominal cramps several weeks ago, a CT showed a small bowel intussusception, which is (in adults) usually caused by a tumor. 

Long story short, I underwent surgery to examine the cause, and a small bowel met measuring 3cm was removed. Bowel surgery is surpsingly much more "uncomfortable than a cranitotomy!

My brain MRI also showed likely progression in 1 met, so it was suggested that I receive tratment with Gamma Knife on all my brain lesions. I completed this today. Not a very pleasurable experience, though very good to have done. 

Currently I'm staying on the drug, awaiting for a vacancy (!) in another trial. Sometimes it seems strange that we're now experiencing an explosion in therapies for melanoma, though it's still very hard to find a place in a good trial.

Thanks for reading, 

Ben.

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deardad's picture
Replies 1
Last reply 5/21/2012 - 3:35am
Replies by: deardad

Hi, haven't heard about Dave from Singapore for quite awhile, wondering if he doing ok?

Nahmi from Melbourne

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/2/2012 - 4:46am

I think most cancers talk about 5 and 10 year survival rates.  I'm not sure, but I think they do 5 year because with some cancers if there is NED after 5 years, doctors will say they believe the person to be "cured."  Of course, we know melanoma does not fit nicely into that category because it can come back after many many years.  So, then, why for melanoma don't they put survival rates down for 15 or 20 years?  Like, an in-situ or 1a or 1b 20-year survival rate? 

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Kelly7's picture
Replies 10
Last reply 6/1/2012 - 12:12am

Has anyone else had this side effect? My brother is between his 2nd and 3rd dose and most of the hair on his head has thinned out and almost gone. Anyone else? I know there are way worse side effects, just wanted to see if anyone else has had this one-

Thanks:)

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/20/2012 - 5:05pm
Replies by: LynnLuc, Anonymous, Jeff's Mom

Hi Bridgette,

 

I hope the meetings with Dr. Ribas & Hamid went well for your son.

Did the doctor concur with Dr. Weber opinion? The worst is when the doctors cannot agree on a recommended treatment. What were their recommendations?

I live in Vegas & still looking for assitance to travel to Dr. Ribas in California.Was you son ableto get assistance with his flight to CA?/

I wish your son continued success with his Zeboraf treatment.

Marie

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Anonymous's picture
Anonymous
Replies 18
Last reply 5/21/2012 - 2:07pm
Replies by: Anonymous, LynnLuc, washoegal, natasha, deardad, Bonnets, Janner

I'm confused by my mitotic rate.  First 2 path reports did not identify any dermal mitoses.  Next 2 reports (yes, 4 opinions all on the same biopsy slides, call me thorough) did identify one dermal mitotic figure and listed the rate as <1.  So, is <1 the same as 0 or the same as 1?  Does that move me from 1a to 1b?  Does that put me into the higher risk category of thin melanomas for having <1 instead of 0?  When I went back to the path that did not identify any dermal mitoses, they said, "there are thousands of cells on a slide and it is certainly possible that a single mitosis is seen by one pathologist but not by another. Sometimes there are multiple sections and not every section is made available to the consulting pathologist."  Doesn't make me very confident then in my WLE/SLNB path report of "clear" if things can be missed.  Anyway, my question is when you read all these studies about different risk categories of thin melanomas based on mitotic rate, where does <1 fall?  Is that 1?  Is that considered 0?  The path that identified the mitotic figure also said, "We did identify a mitotic figure in the invasive component of the lesion, therefore regarded the lesion in "vertical growth phase". The issue is further complicated by the presence of adjacent nests of nevus cells; namely it is very difficult to identify each melanocyte in the dermis whether it is a benign "nevus cell" or part of the melanoma, although p16 immunostain, together with the histologic features, was somewhat helpful in this context (highlighting the nevus cells). There is early invasion into the papillary dermis mingled with a residual nevus. Additional immunostains were performed to further characterize the lesion and show that the proliferation index of the melanomatous component is slightly increased (5%) as compared to the nevus component (1%). There is marked reduction of immunoreactivity of HMB-45 expression and no significant loss of p16 expression in the dermal component of the lesion. "  I have no idea what most of this means or where it puts me w/ my mitotic rate.  How can it be <1?  Isn't  it either 0 or 1 (or a whole number greater than 1)? 

What I'm really trying to ask/get at is this:

I read a study by Gimotty and DuPont.  Before, I could say since my melanoma was thin and 1a that I could look at the ninety-something % survival rates and feel ok.  But, after reading their study, I would fall into the 31% 10-year metastasis rate, because my mitotic rate is greater than 0.  I'm male, VGP present, mitotic rate greater than 0.  So, even though tumor thickness is the most important prognostic factor and mine was thin (0.3mm), I still fall into the high-risk of thin invasive melanomas.  This is why I'm trying as much as I can to really get at this mitotic rate and what it means for me and my risk.  It seems to really put me in a different risk category once the mitotic rate is anything greater than 0, even if less than 1.  Or, would I fall into the "patients with VGP lesions that had MR of 0 for whom the rate was 4% ".  Is my mitotic rate of <1 considered to be greater than 0 or just 0??
 

This prospective cohort study included 884 patients who had thin invasive melanomas. A tree-structured analysis of 10-year metastasis was used to develop a new classification scheme. The overall 10-year metastasis rate was 6.5%. The prognostic tree defined four risk groups: high-risk: men with vertical growth phase (VGP) lesions that had mitotic rates (MRs) greater than 0, and for whom the 10-year metastasis rate was 31% (22% to 42%; n = 90); moderate-risk: women with VGP lesions that had MRs greater than 0 and for whom the rate was 13% (9% to 18%; n = 136); low-risk: patients with VGP lesions that had MR of 0 for whom the rate was 4% (2% to 7%; n = 247); and minimal-risk: patients with invasive lesions without VGP for whom the rate was 0.5% (0% to 1.2%; n = 411).

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 5/21/2012 - 8:51am

Hi,

I am so confused right now. My dad was recently diagnosed with malignant melanoma on his left foot.  It has been such a rollercoaster ride of emotions.  The doctors give us hope but take it away before we have a moment to savor the taste of happiness.  Initially his primary doctor said it was melanoma in situ and we had nothing to worry about.  We were elated at the thought that surgery alone would remove the cancer.  However, the surgeon sent the skin to get biopsied since his primary doctor did not biopsy the actual mole, and the pathology report came back with  the following information:

*Clark's level IV, Breslow 0.4cm

*Ulceration present, horizontal and vertical growth

*Lymphocytic infiltrate: Non-Brisk

*TNM Classification: T3b NX  MX

And the he will be having a lymph node dissection next week to see if they test positive or negative.  He will also be having a 3 punch biopsy where the skin was removed. 

I'm so confused because one docotor will say we caught the cancer in time and he will not lose his life over it and the next minute we have another one telling us his diagnosis is a "death sentences".  

Can any of you help me understand this a little better.. I have been searching the internet but it's all so overwhelming.  

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jessebug99's picture
Replies 3
Last reply 5/19/2012 - 7:53pm
Replies by: deardad, jessebug99, WendyR3

I am new to forum.  Diagnosed with stage 4 in March of this year.  After months of headaches, had CT of brain and found large mass. Had emergency surgery (awesome team of dr.s) and the MRI after showed no other lesions and they got all of the tumor.  Had PET and found it in nodes on left side near armpit.  Here goes the history....my dad was diagnosed in 2009 with metastatic melanoma.  Right side large tumor involving lots of nodes.  Tumor was so big couldn't operate.  Went to MDA then on to Arkansas for compassion trial of IPI.  Showed response after first cycle but passed away soon afterwards as his body went into septic shock (he was my heart).  I was his caregiver and my sister took care of our mom who was diagnosed with stage 4 renal cell carcinoma close to the same time as my dad.  She passed 16 days after him..soulmates...fastfoward several months later.  My sister and I had gastric bypass surgery on the same day...two weeks post op they found lump under her arm....after CT and surgery, was diagnosed with stage 4 metastic melanoma.  Oddly enough her's is on the left side as is mine.  She is being treated at MDA...I am being treated at home in Louisiana.  I had MRI of the brain 2 month post op and everything is still clear.  Minimal node involvement.  We are (my sister and I) both BRAF positive and both on Zelboraf.  I just started mine last week...so many stories here...praying for all!! GOD IS GOOD and with us always.....

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Anonymous's picture
Anonymous
Replies 15
Last reply 5/22/2012 - 8:40am

If one gets a SLNB and it is negative, what really does that mean?  People can get negative node result and still develop metastasis later, correct?  I'm not sure how that happens if nodes are negative initially.

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/18/2012 - 4:56pm
Replies by: Janner

Why do some derms look at your skin with just their eyes, and others use a dermascope?  Is one method better?  Should I be wary of a Dr that uses or doesn't use one method or the other?

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Anonymous's picture
Anonymous
Replies 8
Last reply 5/29/2012 - 12:00pm
Replies by: utee72, Anonymous, Janner

I know this probably sounds like a crazy question.  But, it seems like our immune systems and melanoma development are very linked.  So that someone immuno-compromised in some way would be at greater risk of developing mel.  Does that mean even when we have a cold or the flu or maybe even something worse?  I'm even afraid to get hernia surgery because I wonder if I'll be at all immuno compromised afterwards.  I also worry about getting it done because I wonder were I to get another primary mel, and needed  aSLNB in groin area, would this surgery mess up the drainage pattern, etc..? 

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/19/2012 - 10:10am
Replies by: Janner, Anonymous

This is something that has always confused me.  If the skin on the back, for example, is thick, with an epidermis and dermis of about 4mm.....then how can a 0.3mm melanoma possibly penetrate into the dermis?  You wouldn't think it would be thick enough to be able to do so.  I don't get it.

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yoopergirl's picture
Replies 4
Last reply 5/18/2012 - 9:20pm
Replies by: lhaley, yoopergirl, Anonymous

I am clueless about my Melanoma, all I know is that I am stage 1V , was misdiagnosed in 2006 as insitu, had part of  my finger removed also SNB done at that time too and was clear. 2010 devolped a lump on the same arm and was told it was Metastic Melanoma since then have had many surguries and done interferon 2-11, could just do the month was too hard on me. Isolated limb perfusion was suggested and was seen at University of Illinois and was told that since I was cancer free at that time he would not do it, a month later I devolped another lump and again another surgery. Fast forward now it is in my lungs, and lymph node (which I thought all was removed in 12-10) I have several lumps on my arm too, had the ipi this year, just 3 treatments since I had a bad reaction, no 4 th is recommended. Now I need to have another scan on 6-4-12 and if someone here can help me with what questions I need to ask of the doctor. I do not know how deep my original cancer was, I thought I had the pathology report but don't have that either. I really thought I was up on this cancer but since coming to this board I know now that I am clueless. Would appreciate any input...thanks.. 

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