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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jaketheflake's picture
Replies 5
Last reply 6/1/2013 - 6:32pm
Replies by: jaketheflake, POW, Mickey n Jo, Anonymous, lunchlady

oh  god forgive me for complaining,my husband has stage 3 melanoma,diagnosed a year and a half ago,interferon,then mets in lung and one tumor in brain,startted ippi a few months ago ,3 treatments,newly discovered 2 tumors in brain,month of steriods,have 3 weeks to go,had cyber knife thursday and friday,  i have noticed in the past month,prior to diagnosis of new tumors,he gets in spastic fits,very mean,it can be scary,he would get a lil mad,but not like this!!!!!   i have been down this road 16 to 17 years ago with my father who had lungcancer that spread to his liver and passed away,my dad was mean anyway,but it was 10X as worse when he had cancer, i am not a mean or unsympathetic person, i cannot imagine how my husband feels or what is going thru his mind, and yes , he has every reason th be mad.   He has recently started being very,very mean in the past month,it is very hard to take,and at times i am scared,does anyone kno or any ideas if its the brain tumors causing this behavior or the ippi?  just wondering if anyone has experienced this themselves or with their spouse?  any advice would be greatful!!!!

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mark1101's picture
Replies 1
Last reply 6/1/2013 - 5:13pm
Replies by: Anonymous

Had my last infusion in the trial of ipilimumab for Stage III just about 3 weeks ago and still feeling fine...yay!  Some trouble with skin rash rearing its annoying head following each treatment, but prednisone and atarax seem to stop that problem in its tracks.  Took 4 campazines the entire 12-week period so not much trouble with GI tract in general.  I conasider myself lucky as to the my system weathering the drug well.  Now the acid test...did it keep the melanoma at bay as effectively...had a clear scan going in after lymphadectomy.  Next scan is scheduled for next Thursday so am hopeful that will also be clear.  Keeping my fingers crossed and praying about that.  Sorry to blather on, but wanted to share my good news with all of you terrific people on this board.

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Amanda's picture
Replies 6
Last reply 6/9/2013 - 10:42am

So my boyfriend is feeling some fatigue for the first time since starting pd-1.  Also, his chest wall tumor which is his largest is causing him some pain and it's gotten inflammed/swollen looking (this is also the tumor that he has had 3 biopsies on so far for the trial).  All his other tumors that have been also shrinking arn't inflammed  or painful, just this large one.  The tumor is and has been really soft as it's dying.   I'm hoping it's the accumulation of his immune cells making it so sensitive and larger.  He's been responding exceptionally well thus far, and his scans done a couple weeks ago were awesome, with everything shrinking.  He's had 5 infusions so far, hoping that the fatigue is from his body working hard to eliminate this horrid cancer.

I know people have had inflammation of tumors on yervoy, anyone had this on pd1?  I'm probably going to email his trial coordinator toinght to give them a heads up, and see what they say.


"Give thanks in all circumstances"

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Alanamaranto22's picture
Replies 19
Last reply 6/4/2013 - 12:17am

I am very upset that my Oncologist/Surgeon has me waiting so long before starting active treatment of this. I previously posted my pathology report earlier this week. The pathology report revealed a very large Polypoid Ulcerated Nodular Melanoma. Clark Level IV-V (pathologist couldn't accurately label due to the size and depth), Breslow Depth greater than 5mm (again too large to give an accurate number). It has invaded my lymphovascular system, the mitotic rate is highly variable with up to 5 per square mm. So far the pathology staging is T4b. I had the excisional biopsy done on May 13, 2013. Since then this tumor is already growing back on the surface and its only been two weeks. To me this is more severe than I originally thought. I have been in daily contact with my primary who's trying desperately to get me in now. I have Medicare so I'm wondering if it has anything to do with that?

Anyhow, my other concern is the order of treatment he has planned. He first wa in nts to go in and remove the rest (if possible) of the cancerous tissue and at least 2mm of good tissue from the site of origin. This will be very invasive due to the tumor being on my inner ankle where there is very little skin and tissue. I'm wondering why he does not want to do the PET, CT and MRI Scans and blood work first before possibly taking my foot off?

Due to the invasive surgery and his opinion of certainty of at least a few of the nodes being positive for invasion, why not do the testing first, then proceed with the surgery and SNB? It kind of seems backwards if you ask me. They are so concerned because of how rapidly its growing, I don't understand the waiting period?

Also, what can I expect as far as treatment? Do they do chemo first or put me on a drug like all the ones you are discussing? I just want to start preparing myself mentally. He already said they would have me on treatments of some sort after the surgery so I just want to get an idea of what I'm in for. Do the treatments make you sick, cause hair loss, etc.? And I know many probably won't or don't want to answer this but I would greatly appreciate your own knowledge and opinion on this: If this has metastasized to distant organs (worse case scenario) what are the average survival rates? I'll be happy if its at least a year. I'm hopeful and I'm remaining positive but its information I would like to know. I am a Christian and I truly believe if God wants me home then I'm okay with that. I just want to plan for the worst and pray for the best. I have gone through quite a bit in a year and I think someone is trying to tell me something. Two different cancers in a year, fibrocystic disease and tumors on my brain, kidney, cervix and tongue, as well as having my third major back surgery all in a 15 month period is a sign of some sort. I am by no means giving up but I believe its time to get my affairs in order. I have to work on getting a Will and trying to find all my life insurance policies.

Again, I'm not trying to be negative or give up by any means but tomorrow is never guaranteed to anyone with or without cancer and I just don't want to have to worry about not having those affairs in order for my kids and grandkids. And I really would like for info on what to expect as far as treatment.

Thank you for taking the time to read this. Your input, personal info and knowledge would truly help me to mentally prepare for what I'm getting ready to fight. God Bless you all and I'm so very greatful for this site and having people like myself to talk to and you're all truly an inspiration to me.

With Love,

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Anonymous's picture
Replies 3
Last reply 6/1/2013 - 12:27am
Replies by: Tennisgrl, jcmp

I have had 4 treatments of IPI followed by 6 weeks of radiation followed by 15 taxol/ carboplatin treatments.
I am now stable by ONC .
Looking for anyone with similar history to share information.
Thank You

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Anonymous's picture
Replies 7
Last reply 6/1/2013 - 5:10pm
Replies by: ecc26, mark1101, hbecker, Janner, Anonymous


Thank you for reading my post. I am kind of at a loss and feeling very scared. I was recently diagnosed with melanoma on my head/neck, and have since checked every other square inch of my body. Well, I discovered another spot, (getting it looked at this coming week) it has all the characteristics, and is pretty well raised. It is on my left side love handle.... I remember it being there a long time ago (a couple years) and it started as a small freckle..

So here's my question:

Not too long ago, (maybe 6 months, during the winter) I went through a period where I was really sick. Both sides of my groin nodes were huge, hard, swollen, and too painful to even walk... This has since subsided, but have continually maintained other symptoms of: Abdominal pain and cramping, extreme bloating and gas, big time gain in abdominal gurth (like not fat, but bigger around just in the abdominal area), had a week of pure constipation, now am having semi regular BM's, but loose and thin, (maybe a tiny bit of blood here and there, in the crevices of the stools, not all the time), decreased appetite but increased weight, extreme fatigue, headaches, sharp pains behind my eyes (almost every day), pinched nerves and muscles throughout, but especially in my back and shoulders, and extremely abnormal vaginal bleeding...seems like every day... there are more days of bleeding than not!!

This has all become frustrating, and worrysome. I try not to make a huge deal of it, because maybe I wouldnt notice these things is i DIDNT have melanoma on my mind, but there are a ton of new symptoms just within the last 6 months or so...

I AM getting this new spot checked out within a week, but just curoius in the meantime if anyone else thought this was outrageous, or possibly all in my head.... 



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Littlea41's picture
Replies 1
Last reply 5/30/2013 - 10:17pm
Replies by: Janner

Hello. I was diagnosed with melanoma back in march an found out I was pregnant 3 days later. We lost our son from a placenta abruption at 16 weeks. So far there are no answers, nothing pointing to what caused this. I'm just curious if anyone has heard of this happening to melanoma patients. I'm still waiting in the pathology from the placenta (its been over 3 weeks) which tells me they either lost the sample or they found something bad and need to confirm or do other tests.

Any help on this topic would be greatly appreciated as I can only find a couple publications on melanoma and the loss of a pregnancy.


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out4air's picture
Replies 15
Last reply 6/2/2013 - 7:39am

Any experiences, suggestions, etc anyone can give to us would be appreciated regarding your experience with taking Zelboraf 240mg. Started at 4 in am and 4 in pm but had bad reaction so now on 3 in am and 3 In pm with 10 mg of prednisone daily. On 3rd day and no problems yet.

I gather this treatment is not a cure, just a drug to stop growth and wait for a cure to be invented, is that pretty much what we are looking at with this drug?

We are in it to win it!

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Yesterday’s FDA approval of two new treatments for metastatic melanoma is exciting news for the melanoma community. But, we still have much work to do in terms of providing additional treatments for people fighting advanced melanoma. If you are interested in helping the Melanoma Research Foundation call attention to these important issues by sharing your story with the media, please take a few minutes to complete a short survey by visiting:

Thank you for your consideration.  The MRF will be in touch with you as media opportunities arise that match your experiences.  If you have any questions about this survey, please contact the MRF’s communications manager Lauren Smith at or 202-347-9675. 

With many thanks,

The MRF Team

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Melissag0624's picture
Replies 6
Last reply 6/1/2013 - 6:06pm

Hello all, 

 My name is Melissa and was just recently DX with stageIIIA melanoma at the age of 27.  It all started with a mole on my upper left shoulder. I had a WLE and SLNB performed and it came back with clean margins and only 1 LN was positive. I have a melanoma specialist that I am seeing in my hometown who has reassured me, and gave me the impression that my chance of survival are good and the chances of reocurrance are low. I did go see another melanoma specialist in my hometown for a second opinion only to find out that these two doctors work particularly close ( they used to be in the same office) and he agreed with her recommendations. I am currently on a clinical trial that monitors the lymph nodes by ultrasound rather than doing the removal of the lymph nodes in the effected area. My concern is this: I feel like I didnt get a fair second opinion because these doctors work so closely together and often share patients. My mom offered to send me to the Mayo clinic in minnesota and in a way I feel like it is over kill to go because I feel like they will just tell me the same things that my other doctors have said.  After the SLNB came back positive, I did have a once over, MRI of brain, CT scan of Pelvis and abdomen with and with out contrast. ( there were two incidental findings that are not related to melanoma--UPJ obstruction and a hemangioma on my liver) So I guess I would like to know what others would do in my position. My mom thinks I am under reacting and I feel like going to the mayo clinic is over reacting. ???




<3 Melissa

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I have a friend who is dealing with Brain Mets. Previous mets were treated with radiation but know seem to be growing again so he needs a neurosurgeon.

He lives in California but would travel anywhere to be treated by the "best" neurosurgeon.

I would appreciate any recommendation or feedback on your experience with your Neurosurgeon.

Thank you for your help.


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Anonymous's picture
Replies 2
Last reply 6/2/2013 - 7:54am
Replies by: Anonymous, Harry in Fair Oaks

It’s so confusing.  I read a Duke study (2003) that basically says up to 15% of thin lesions less than 1mm will recur/mestastasize; but, then I put my info into the melanoma outcome calculator and it basically says it “only” shortens my life expectancy by less than a year.  Which is it? 

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HI All,

I had mucosal melanoma in Tongue in 2007 and my 2/3 of the tongue has been removed in the first surgery . I was under constant observation. I was cancer free for 5.5 years. in Jan 2013 melanoma has recurred again in my larynx area. . Now my entire Voice Box has been removed on Feb 6th 2013 during the second surgery. ImmunoHistoChemistry for C-KIT had done and it had come as positive in my specimen. My Consutant said there is no need to do C-KIT mutation and we could take the C-KIT inhibitor Imatinib oral tablet. I took Imatinib tablets for about a month.

But still Melanoma has come back to me again in Right Side Level II and Level IV Lymphnodes within 3 months of my 2nd Surgery. I had undergone 3rd Surgery for the radical Neck Dissection of Lymphnodes. As per PET CT it has not spread to any other part of the body. But still it means I am moving to Stage III and have high possibility of getting into Stage IV. But I need your advice on how Can I come out of this Melanoma successfully as I have two young kids. Whether Inteferon would help or do we have any other better medicines or mechanisms to come out of this Successfully. How about  IL-2,  ipilimumab drugs. Will it help any way. Anybody had faced this before and had come out of Mucosal melanoma . Please share your experience and suggestions.

I am based out of India but I am looking for an option to travel to US for treatment of this mucosal melanoma. Kindly share your advice and suggestions.




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Laura mrf's picture
Replies 2
Last reply 5/30/2013 - 7:03am
Replies by: Laura mrf, Janner

I received my pathology report today following an excisional biopsy and hope you can help me understand some of the terminology. First, let me say how much I have come to admire the courage I have witnessed on this board since finding it two weeks ago. You are all going through so much and I know my problems are minimal or even non-existent compared to everyone here! I am not sure I would have the fortitude to be facing this disease with the grace that you have shown.

My background: I grew up very outdoorsy (in the 60s and 70s we played outside until the streetlights came on!), beaches, camping, and in my teens, working on the family farm. I have almost all the risk factors as far as physical appearance and sunburn history, although my last sunburn was probably 25 years ago or more. Until 2010 I enjoyed very good health, but that year almost simultaneously was diagnosed with a basal cell carcinoma and tall cell variant thyroid cancer. I see oncologists every 6 months for thyroid follow up, and go for regular screenings for skin cancer and my dermatologist at MSK has taken lots of photos. I know I am lucky to have had just a BCC!

My skin screenings are every 6 months. Two weeks ago I had an excisional biopsy because a spot on my back had changed significantly (much spread, bi or tri color, pseudopods). I wasn't too worried because the area had been biopsied by a local dr in 2010 so I knew a recurrent mole could look more scary than it actually is. I got the stitches out today and asked for a copy of the pathology report, thanks to reading this board! OK, I guess I was more worried than I wanted to admit because I have read the messages here daily. Also, in today's mail I received the very simplified results. I will share both so hopefully I can understand whether no cancer was found, or there was cancer but the excision removed it all.

The simple report in the mail has choices. The first line says "Biopsy report is benign and does not require any follow up". That one is not checked! The next one down is checked, and says "The re-excision is clear and no further treatment is required."

The pathology report says the specimen was 1.8 x 1.0 x 0.6 cm .
Clinical diagnosis: some increased pigment within scar noted. Rule out recurrent nevus. 9x6 mm.
Diagnosis from pathologist: residual/recurrent paracicatricial compound nevus with atypical features, margins negative.
Comment: the residual nevus shows lentiginous intraepidermal growth of atypical melanocytes and dermal architectural disorder. There are also background lentigines.

I am guessing there is no cause for concern and of course can call the office tomorrow. I'm just confused if they caught something or there was nothing there! Thank you for any insight you can provide. I know you all have much greater concerns!
Best to everyone,

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Anonymous's picture
Replies 5
Last reply 6/1/2013 - 8:07pm
Replies by: Anonymous, Lori C, Bubbles, Janner
Research May 28, 2013

Four-year Overall Survival Rates 38-50% Using Ipilimumab


Ann. Oncol. 2013 May 10;[EPub Ahead of Print], JD Wolchok, JS Weber, M Maio, B Neyns, K Harmankaya, K Chin, L Cykowski, V de Pril, R Humphrey, C Lebbé


Almost 500 patients treated with ipilimumab with a minimum of 4 years follow-up were analyzed in this study. Four-year overall survival rates were 38-50% using ipilimumab 10mg/kg in the first line setting and 20-28% in the second line setting.


Background: This analysis was carried out to evaluate the long-term survival of patients with metastatic melanoma who received ipilimumab, a fully human monoclonal antibody that binds to cytotoxic T-lymphocyte antigen-4, in clinical trials.


Patients and Methods: Patients received ipilimumab in one of three completed phase II clinical trials (CA184-008, CA184-022, and CA184-007). Previously treated patients were enrolled in all studies, and treatment-naïve patients were also included in study CA184-007. Patients received ipilimumab at a dose of 10 mg/kg in studies CA184-008 and CA184-007, and at doses of 0.3, 3, or 10 mg/kg in study CA184-022. Ipilimumab was given every 3 weeks for four doses, and eligible patients could receive ipilimumab maintenance therapy every 12 weeks. In study CA184-022, patients could cross over to be retreated with ipilimumab at 10 mg/kg upon disease progression. Ongoing survival follow-up is conducted in a companion study, CA184-025.


Results: Four-year survival rates [95% confidence interval (95% CI)] for previously treated patients who received ipilimumab at 0.3, 3, or 10 mg/kg were 13.8% [6.1-22.5], 18.2% [9.5-27.6], and 19.7% [13.4-26.5] to 28.4% [13.9-44.2], respectively. In treatment-naïve patients who received ipilimumab at 10 mg/kg, 4-year survival rates were 37.7% [18.6-57.4] to 49.5% [23.8-75.4].


Conclusions: These results demonstrate durable survival in a significant proportion of patients with metastatic melanoma who received ipilimumab therapy.

Annals of Oncology
Four-Year Survival Rates for Patients With Metastatic Melanoma Who Received Ipilimumab in Phase II Clinical Trials
Ann. Oncol. 2013 May 10;[EPub Ahead of Print], JD Wolchok, JS Weber, M Maio, B Neyns, K Harmankaya, K Chin, L Cykowski, V de Pril, R Humphrey, C Lebbé

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