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
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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eerye70's picture
Replies 3
Last reply 5/21/2012 - 1:02pm
Replies by: eerye70, Anonymous, Tim--MRF

I had a melanoma in situ diagnosed in november on my right shoulder. I have tons of atypical moles. I am so spotted. I did some mole photography to keep track of them all for change. Well, i have a mole, on my right leg, it is no bigger than the tip of a pencil lead, that is dark with a shadow to the side of it. I don't know how to describe it. I have this mole and then to the side of it is a softer, paler shadow of a mole. almost as if the mole was drawn in charcoal and then smeared. It seems to have gotten darker to me. and Now when i run my finger over it, i can feel it ever so slightly. So i have called the dermotologist and they will be seeing me on monday. My regular appointment was at the end of the month anyway, but i cannot imagine waiting until then. The truth is, i am going to lose my mind until monday as well. I almost wish i had a dermoscope just to peer at it a bit myself. Not that it would do any good, but it makes me nervous. Add to that, i have a small pea size lump in my groin on the same side. Please pray that this is all something routine and not melanoma rearing its ugly head. I feel as though i am going to throw up between now and then. Debbie

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

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Lilylove414's picture
Replies 9
Last reply 5/21/2012 - 12:51pm

Hey y'all! So in a few weeks I'm taking my nephew to the pool, because I promised. What kind of sunscreen should I use? There's so many kinds and I'm confused. Gah!

If God is for us, who can be against us?

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


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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fighting4dad's picture
Replies 7
Last reply 5/21/2012 - 3:51am


My dad (stage 4) was supposed to start zelboraf yesterday, but at the appt. Dr. recommended they delay starting treatment until disease begins to progress again. (He was on Yervoy last fall and saw reduction in size of mets).  Has anyone heard of delaying? Supposedly Dr. told Dad that if Zelboraf doesn't/stops working there won't be much left to try, so better to wait and extend his life later.  This doesn't really make sense to me so I am looking for others with this experience, or maybe I should be trying to get Dad to get another opinion?

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James from Sydney's picture
Replies 2
Last reply 5/21/2012 - 3:39am
Replies by: deardad, AllyNTAus

This was released today and shows GSK BRAF drug shows positive outcome for those with Brain involvement

best wishes to all


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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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Eileen L's picture
Replies 11
Last reply 5/20/2012 - 10:37pm

The first day of my BRAF/MEK trial was yesterday! Everything went well. I essentially had to be at the hospital all day because they were drawing blood every 1-2 hours. Today I have to go back to get another blood draw as well as an EKG. I did receive a schedule of my appointments for the next eight weeks and I will be tied up 1-2 days a week, getting various tests and scans. Only one other all day session, however. Most of the other appointments are half days!

I am very optimistic about these drugs, the response rates have been very good and I responded very well to a less potent drug for over four years. I get a scan at the end of June which will evaluate how I am doing. Until then, I am as usual trying to live my life to its fullest. We are going away for a few days today and I have brought with me a full array of sun protection, including sun protective clothing, wide brimmed hats, sunscreen, etc. 
Will let everyone know how it goes.
Eileen L

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Gene_S's picture
Replies 15
Last reply 5/20/2012 - 8:44pm

I had my scans on Friday and the results are great.

One small 1.3 mm lesion left out of 9 and it is almost immeasurable.  We are so excited can't wait to say NED.

Just for those that don't know Gene he is on the clinical trial with Ipi at 10 mg/kg and GMCSF self shots 14 days on and 7 days off.  He has been receiving Ipi after the initial 4 doses every 12 weeks on the maintenance part of this trial.  He started it on Mar. 3, 2011.  After 4 surgeries he had an inoperable lesion on the head at the C1-2 level.  He also had 3 sub q's in the same area and it had metastisized to the liver and lungs as well.

We are very pleased with these results and wish to share so we can give others hope.  You can check his profile for more information on his journey which started in Jan. 2008.

Judy (loving wife and caregiver of Gene Stage IV and almost NED).

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
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.


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Anonymous's picture
Replies 2
Last reply 5/20/2012 - 12:22am
Replies by: momreader, Tim--MRF

I am hoping somebody can help or advise me.  My father was originally diagnosed with melanoma in his toe about 2 1/2 years ago.  His toe was amputated, and then everything was all clear for 2 years, and we were so happy and relieved.  A few months ago, they found something in his small intestine and one of his feet.  He went into a trial for ipilmumab (yervoy) and MDX 1106 combined.  We were very optimistic as so many people seemed to be helped by yervoy, and it seemed my father's prognosis was good b/c they caught it early and the tumors were small. 

Well, everything kind of went haywire.  My father had many problems after starting this trial - skin problems, his thyroid basically burned out (now being treated by endocrinologist), he had liver issues which resolved, and unfortunately he now has some kidney issues (creatinine levels too high).   My father did not complete the whole first course of trmt  (he ended up having the first infusion, then had to miss the 2nd due to  bad side effects, then he had the 3rd trmt, and missed the 4th (there are 4 treatments - one every 3 weeks for the first round).   In middle of all this, the tumor in his small intestine got much worse, and he needed to have surgery to remove it, which happened about 3 1/2 weeks ago.  Thank G-d, that went well, and we were left with the tumor in his foot.  The doctors felt that the immunotherapy wasn't tolerated well by him, and even though they would have preferred to treat the melanoma systemically, they said we should meet with the surgeon to discuss removing the melanoma that remained in his foot.   The surgeon wanted a Pet scan first, which he had, and we met with the surgeon today and he said that unfortunately the melanoma is no longer in one spot in one foot- it is in both feet, and in 4 spots, 2 in each foot.  He didn't feel surgery was a good option. 

So now we need to figure out what to do.  We still need to get the creatinine levels under control ( my father is having a liver biopsy on Monday), and this could be a problem in having future treatment, but hopefully that will figure the kidney thing out - it is a rare side effect to the Yervoy (or MDX1106 - who knows what caused it?)  My father could have chemotherapy, but from what i read, that is not considered to be so great with melanoma.   They don't think radiation is a great option with so many spots.  I am trying to research different treatments out there. My father does not have the BRAF mutation.  They are testing him for the KiT mutation. We are hoping we can manage this disease so my father can live a long life.  He is very beloved by our entire community and is the heart of our family.  My children are babies and I am scared, I want them to grow up with their wonderful grandfather.  Can anyone please help and give me some ideas of what to be looking into?  I have spent hours researching melanoma treatment and am a little unsure what our options are now.  We are trying to stay positive - it is so important - but would love some advice about now.  Any help would be so greatly appreciated.

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kammariel's picture
Replies 6
Last reply 5/19/2012 - 11:21pm
Replies by: kammariel, lhaley, Anonymous

Although I've read a ton on this board, this is my first post. I've been trying to find a profile I read awhile back of brain met survivor with a super positive attitude. She had an astounding number of craniotomies and a picture of the staples on the back of her head. Do any of you know her name?

My husband is currently in the hospital recovering from his 4th craniotomy procedure to the same site to relieve radiation necrosis and hemorraging. He  currently has 4 tumor sites. We're hopeful that the WBR he just completed will shrink them.

The rest of his body was clear from his last scans in Jan, but he's due for more scans. I'm just looking for positive stories right now. I have found many which have given me hope. This board has also made me confident that we are getting the best treatment at JWCI. He's already done Yervoy and steriotactic radiaiton. Thank you to all of you survivors and care takers who are sharing your stories.


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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 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 many stories here...praying for all!! GOD IS GOOD and with us always.....

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Anonymous's picture
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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texaninlouisiana's picture
Replies 4
Last reply 5/19/2012 - 9:13am


Good Evening - new poster (unfortunately) wanting to get some hopefully 1st or 2nd hand experience with desmoplastic melanoma.

My father was diagnosed last Friday, had the WLE and SLNB on Wednesday and everything is going along smoothly -- including the lymph nodes visibly not looking any different. We will get the official path report back next week so needless to say, we are praying it's not a combined form of DM, instead of pure.

The tumor was 2.7mm thickness, 2cm WLE was done, and SLNB with visibly clear sentinal node removed.

My question is for anyone who has had experience with this sub-type. I already know quite a bit about it by hours of research and findings but I just haven't found any credible personal info on any forums -- both here and -- it's really frustrating. My father has really good docs treating him, including one of the best oncologists around but I get a feeling that this type is not something they have dealt with before which is unsettling; not to mention my father trusts them completely. We have resources in the Houston area, meaning MD Anderson is somewhere we could go but he is so worried about the convenience factor (family is in Northeast Texas) of traveling, etc -- it's very frustrating.

Anyways, back on point...I'm reaching out to this larger forum to see if anybody has had experience with this. The only things I've read on here are other questions from folks wondering the same thing as me.

Thank You All in advance.

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