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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nickmac56's picture
Replies 6
Last reply 7/9/2011 - 2:17pm

We are down to very few options for my wife (Stage V, brain involvement, lung and skin mets, internal organ mets likely) and this seems a pretty low impact, not much downside option. Because of her recent brain surgery and seizures and the fact she is on so many anti-seizure meds and steroids the onc is adamantly opposed for the time being to put her on IL-2 - too toxic. All the places I've contacted about clinical trials - especially the ones doing TIL for HLA-2 mutation - have said no thanks due to her seizure history, don't want to screw up their trial results I suppose. 

I'm curious for those who have tried Temodar if there has been any hair loss? It seems a low occurrence side effect - but she is already not happy about the hair loss from her Cyberknife treatment, even though she looks great in her wig, you woudn't even know.

From what I've read about chemo treatments it appears if it has an impact, the usual pattern is some reduction in tumors for a period of time, then continued progression - so you are just buying some time at a not bad reduction in quality of life - so a pretty good trade off. I haven't found much about long term durable remissions with chemo or Temodar specifically. Any evidence out there I am unaware of about long term success? She isn't doing any combo treatment yet involving multiple drugs or chemo/immuno drugs - again related to toxicity and her particlar situation with the drugs she is on and seizure history. 



Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Last November, a lump on my neck turned out to be a melanoma of unknown primary.  Left posterior neck lymphadenectomy removed another 36 nodes, all clear.  Subsequent tests revealed one possibly problematic spot in the same sector (left posterior neck), but it appeared not to be growing.

After six months of tests (MRIs, PET=CTs, and contrast CATs) revealing that the site was suspicious but not growing, my ONC suggested an ultrasound biopsy.  Did the test today.  Results were truly scary:

1.   Quick stain revealed that the site tested positive for melanoma.

2.  Ultrasound suggested that the hot spot itself was a nodule outside the main area of the lymph node -- either having expanded from inside the lymph node or grown entirely in the sternocleidomastoid muscle.  In either case, I assume we are now talking Stage 4.

This is a tough, tough day.

I am seeing my ONC surgeon tomorrow to schedule a full tumor biopsy sometime next week.  I assume this will provide a B-RAF status, which had not previously been tested.  I already have a meeting scheduled with my ONC for July 29, and will push that earlier based on the results of the biopsy.

One reaction is anger:  I am being treating at a Top Ten National Cancer Center by widely published people, all of whom are melanoma specialists.  Why didn't anyone think to do a simple ultrasound before now -- NINE MONTHS after the initial warning sign -- instead of all the fancy, expensive but ultimately worthless tests they ran?

A second reaction is stark, raving fear -- fear of telling people (I run a decent sized, high profile business and am involved in a raft of community activities), fear of what comes next in treatment, fear that despite high energy and positive attitude, I might not prevail over this disease. (That list was not in the order or importance).

Those of you who do tons of reading on this disease:  what questions should I be asking that I might not think of?  I am fairly solid on medicines, less so on diagnostics (obviously!) and the various forms of surgery, radiation, disease management, etc.  Is there anything I should be reading tonight and over the next few days to come up to speed quickly?

Those of you who have survived for a long time as Stage 4 -- what helped you?  What changes did you make in life and/or outlook (if any)?  Did you adopt yoga, massage, any successful forms of relaxation?  How much control did you take over your therapy and choices?  

Those of you who have owned businesses and been prominent in your communities -- what did you learn about the process of telling people?  How much did you divulge, and to whom?  What worked for you?  And how much of that can serve as a general lesson, instead of simply a statement about how you roll?

All of you -- what else should I be asking?

I have always met challenges, and believe that I am as well equipped to meet this one as anyone else (of course, a very aggressive tumor may have a mind of it own).  I've scanned this community for the last nine months, occasionally making contributions but mostly marveling at your power, warmth, and cohesion.  Thanks for helping me now.


Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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mollysue's picture
Replies 19
Last reply 7/9/2011 - 9:23am

I was just denied for insurance due to a stage 1 melanoma from 3 yrs ago. Mine was very thin. I think it was 1a  and the thinnest the doctor had ever seen. I would like to send a letter to the insurance company as I don't think I am a huge risk. I did have a lymph node taken out due to the doctor being able to "feel one" in my groin. The lymph node was of normal size and negative. The surgeon who took it out said they could feel it because I am thin and in shape. She also stated lymph nodes can enlarge as the bodies natural response to having been insulted.- as in an excision close by. Both of these diagnosis have blocked me from purchasing insurance. Any suggestions as to facts I could use in my letter?



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willtolive's picture
Replies 10
Last reply 7/9/2011 - 4:18am

Hi everyone

I´ve been reading posts at this Bulletin Board for almost a year now. Some posts I have read with tears in my eyes, and some with joy. Here is our story (short version): 

I am the husband to a 39 year old woman from Denmark in Europe.

In 2003 she had a mole removed from her thigh (Stage II). It contained melanoma-cells.

In 2007 melanoma had spread to a lymph-node in her groin (Stage III). Surgery was needed.

In 2008 melanoma relapsed in another lymph-node, surgery again.

In 2009 melanoma hit us hard (Stage IV). It had spread to her lungs, one met in each lung. The size of the mets was 25 mm and 16 mm respectively. Surgery was fortunately possible.

In October 2010 melanoma went back. This time there was multiples mets in each lung. About 5-6 mets in each lung. The biggest was 19 mm. It was unsurgeable, which was very hard to cope with.

In November she began Interferon/Interleukin-2 treatment. It was tough beyond imagination. She had all the known sideeffects, and she was so bad during hospitalization. The midway PET/CT scans in January revealed that she was a responder! Scans showed that all the mets had become inactive or necrotic. Some mets had even shrunk a little bit. We were delighted, and she continued with the third and fourth series of Interferon/IL-2.

February 15 we got the results of the next scan. We were optimistic because the midway scans was indeed promising. We were shocked when told that the melanoma had began to grow again. There was 2 active mets now. One big met, about 32 mm in diameter, in her right lung lightened up. In addiction there was a lot of fluid in the right lung membrane, and it probably contained melanoma-cells. All other mets was still inactive, except one, and our doctor feared that it would be only a matter of time, before the other mets would begin to grow again. We were devastated.

Our doctor suggested Ipilimumab, and my wife started March 11, on the same day Japan was shaken by the huge earthquake. I watched it on TV while she was receiving the first dose of ipilimumab (3 mg/kg dose). I remember wishing that the drug was the earthquake of our lives…

My wife have always been a positive and happy human being, no matter what challenges life would bring, she still truly believe that she could defeat this Melanoma Devil. She began consulting a Chinese doctor and received acupuncture twice a week. Beside this she trained 4-5 times a week, fitness and running. In these situations we talked about preparing your body to fight the cancer, with a "little" help from our friend, ipilimumab…

She received 4 doses every third week and got a CT scan in June.

Three days ago on June 21 we arrived to the hospital to talk with our doctor about the results of the CT scan. The time from the scans being done and to get the results is awful with a lot of anxiety, you guys all know… The scan showed that the 32 mm met in the right lung was completely GONE!!!!! The fluid was gone too, and the x-ray showed a nice healthy looking right lung. We were stunned. I hugged my wife with a lot of tears in my eyes. Our doctor was very delighted too. Ipilimumab had worked much better than expected. We had hoped for stabilization, maybe shrinkage, if we were lucky. But this???? Unbelievable. Some other small mets was still there but hasn´t grown in size in half a year, and our doctor said it very well could be necrotic tissue.

This is where we stand now. We´re thrilled and delighted and so so happy. We have now dared to plan for more than a month :-)

So this story is to all you Warriors out there, keep on fighting with believe and trust in your hearts. The path is very tough but the battle can be won, sooner or later. We´ll keep fighting this Devil.


Kind regards


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Lauri England's picture
Replies 2
Last reply 7/9/2011 - 12:36am
Replies by: FormerCaregiver, akls

I went to the Onc appt yesterday and she felt a bebbie size lump under my right arm. Same arm as melanoma was in originally.  It is hard and I cant tell if it would hurt or not because my underarm is totally numb from lymph node removal a year ago.  The doctor said we can just keep cutting you or we can wait and see.  I am 9 months into interferon and have had no scans.  I have had 3 more moles removed and another lymph node biopsy and all were benign.  Not only is this very costly co pays but I am not sure I want to be cut anymore for a while.  Am I being over cautious?  The doctor felt this one and did not seem to concerned, but she did tell me about it.  What would you do?  I am going to have a CT scan in October right after my interferon treatments are done.  I have also been having problems with my bladder.  I will just suddenly start to urinate in my pants and cant stop it.  I dont even feel the urge to go to the bathroom when this happens.  Has anyone else experienced this?  I am going to be seeing a uralogist in the next couple weeks. 

Don't sweat the small stuff. There are bigger fish to fry!

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Nicky's picture
Replies 6
Last reply 7/8/2011 - 9:09pm

Went back to outpatients at the hospital today to get my results after a wide excision for melanoma in situ.  Yippee all clear margins!!! so happy today.  This is my third melanoma primary over 11 years.  Currently, Stage III from a lymph node dissection in 2001 with one node with melanoma followed by radiation.  5 years later a level 3 desmoplastic melanoma on arm, following by radiation and as of last week a melanoma in situ on back, all clear with the wide excision.  Yeh, I just love giving this disease a kick, three strikes and you are OUT melanoma.

The marketing department at the hospital wanted me to assist them on a television interview to promote new machines in detecting malignant moles and a mobile phone application for people in remote areas which is on an earlier post.  Anyway the professor now wants to put me on a trial,DNA testing and checking over all my moles with this machine.  At last I feel I'm in the best hands and that there is no room for misdiagnosis.

So as far as I'm concerned melanoma is STRUCK OFF and hit out of the stadium.


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Laurie from maine's picture
Replies 6
Last reply 7/8/2011 - 3:29pm


I am heading down today to get more info from Mass General. Last night I ended up in emergency room in maine with severe stomach pains and vomiting.  CT showed mass in my liver, no other info given except handed pain and nauseau meds and told to go down to MA to see my oncologist.  I will write when I know more, hopefully only contained in liver.  Hoping to pick everyones brains here once I have full info.  I did little search and saw King had liver mass removed and did well. 

ugh - laurie from maine

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Cid FLA's picture
Replies 5
Last reply 7/8/2011 - 3:22pm

Hi All,

It's my first time back since registration was required........previously known as just "Cid".

I'm stage IIIb for 6 yrs. now and recently a "freckle" on my retina was detected via a routine eye exam with retina photography. I am to go back in 3 mos. for another look.

Apparently this is one potential indicator of ocular mel though not an uncommon finding. My question is "has anyone heard of cutaneous mel metastises to the eye?".

Also, for anyone with ocular did it start? how are you now? how were you treated?

Nice to see some familiar names and all the new ones remind me of what a valuable resource we have here.

My best to you all............Cid

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Anonymous's picture
Replies 8
Last reply 7/8/2011 - 2:18pm

Hi All,

Does anyone know that if your interested in a clinical trial that is far away from you do they help pay for expenses?


Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Carol Taylor's picture
Replies 3
Last reply 7/8/2011 - 1:11pm
Replies by: Carol Taylor, nicoli, Nicky

About a week ago I heard the following American Academy of Dermatology PSA (jingle style) on the RADIO, got excited and had to contact both the radio station and the AAD to find it. Heard from AAD today with the link and told to share it all over the place:   (According to AAD this actually came out in 2008)

So, she also sent the link to their latest PSA:

Spread and enjoy.

Grace and peace,


Life's short. Eat dessert first. (This blog post contains links to my story).

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Just got back from Don's appointment with Dr. Lawrence. I just spent 1/2 hour writing out specifics of his response only to have the board eat it, so I am going to do this more abridged this time. wink

Dr. Lawrence called it "the best response to chemotherapy I've ever seen". He said it was the kind of response he has seen only with BRAF inhibitors.

Here's the down-n-dirty version of the results:

LDH: Down again to 268 from 388 last week. 

Lungs: Down from innumerable nodules up to 1cm in size to 4 (four) nodules: 4mm, 3mm, 2mm and 2mm respectively.

Tumor under right arm: Down from 10.4cm X 10.2cm to 2.7cm X 2.2cm. 2 small tumors in right chest wall same or slightly smaller at 6mm and 3mm respectively.

Liver: Still have innumerable lesions, but they are better defined and smaller in size. Largest lesion came down from 5.2cm to 2.6cm in size.

Bones: Results a little more hazy as there were mentions of "new" lesions that Dr. Lawrence doesn't actually think are new. (I think he's right, as some of the "new" ones were mentioned in an MRI of Don's spine down at Brigham and Women's hospital done in May) However, the fact that Don is taking 25% of the pain medicine he was 5 weeks ago certainly points to some improvement in this area. There was mention that at least 2 lesions seen appeared to be responding to  treatment. 

Brain: Scan clean for brain; shows some signs of possible small bone lesions in skull (not new).


Plan of action for now is to continue chemo for another cycle and will re-evaluate in a few weeks. Plan B (when we get there) was proposed to be the Compassionate Use PLX4032 trial. Dr. Lawrence wants to have Don sign paperwork now so they can send the tissue sample to Roche for testing (they require testing it themselves instead of taking result from previous test...and we know it takes a couple of weeks for results).


I know I should be thrilled with the results--and I am--but I must admit that I was hoping there would be less lesions in his liver. 

Michelle, wife of Don

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Charlie S's picture
Replies 18
Last reply 7/8/2011 - 3:05am

In June of 1987 a surgeon stuck a knife in me, carved out a lump in my armpit that turned out to be melanoma.  Stage III with an unknown primary it was.  Yes, you read that right, June of 1987...............twenty four years ago.

Following that knife fight, melanoma lay silent in my body until 1996 when it then reared its' ugly head and made me Stage IV.  Since 1996 I have had had six recurrences, still have active disease and still am Stage IV with months to live....................or so the story goes.

Well over a third of my life and damn near half of it has been saddled  with melanoma wanting to murder me.  In the process I started  a business, lost a business, made a fortune, lost a fortune, had a wife and got bled by a wife, loved and lost true love in my arms with her last breath.

Over the years of being here I have physically met people, touched them, embraced them, been in their homes, shared with their families and watched them die from melanoma.

Each time a friend would die, I screamed to who would listen "take me instead", and so far, whoever decides that says no.

I do not know why I am alive and others are not and that bothers me.

But, whatever the deal is, all I know is to keep banging on melanoma.................and that is just what I am doin


Charlie S

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Banu's picture
Replies 13
Last reply 7/8/2011 - 2:43am

Hello everybody. I want to extend my best wishes to all of you who are courageously fighting melanoma. There are many advances in the field and I am glad to hear that some of you are benefiting from them.

Here is my question and dilemma. My father had been diagnosed as stage IV in December of 2009 with 2 mets in the lung, larger one about 30 mm, and a small thoracic spot. He is now 75 years old. Before we started therapy, we consulted with 2 doctors. One of them said that since my father is quite healthy and strong and the disease seems to be slow progressing, we should start with ipi first and give it a try for longer term benefits. The other one suggested to start with MEK inhibitor, because my father was BRAF positive. They did not have PLX4032 available in the trials at that time. The doctor said that ipi has a low response rate and we still have time to try it, if we fail MEK inhibitor which is directly targeting the tumors. My father started the MEK inhibitor trial around April 2010 and did very well on it until February 2011 with tolerable side effects, a lot of energy and up to 30% shrinkage in lung tumors. In January 2011, he found a bump getting larger in the groin area and on February 4th, we found out that he has four small lesions in the brain. He was taken off MEK. He started corticosteroids and had SRS for the lesions in the brain. The plan was to start ipi as soon as steroids were discontinued. In the meantime, we also tried PLX4032 which did not help much as at least 10 subcutaneous lesions and other smaller lesions are visible in the CT involving pancreas, small bowel, stomach etc. This was from the May 16 scan. The doctor prescribed Yervoy, however, the FDA approval worked against us. We have been waiting for approval and have been denied and appealed in the last six weeks. If ipi was still in compassionate use, we could have accessed it 6 weeks ago. The oncologist said that he never thought the FDA approval would actually cause such an access problem and felt really bad that we could not have access to it in a timely manner. In the meantime my father lost more weight. Since February, he lost about 25 lbs. His energy levels are down and he moves very slowly. I forgot to mention, that his follow up MRI showed one brain lesion smaller, the other 3 larger and 6 more smaller lesions for a total of 10. The radiation oncologist said the 6 new lesions were probably microscopic in the first MRI. So, my father had WBR the first two weeks in June to get rid of any other mircroscopic melanoma and shrink others. The plan was to get Yervoy at the same time, which did not happen. Now, his doctor wants to give him carbo/taxol as a bridge therapy until Yervoy becomes available. I told him that we have an opportunity to have access to ipi in compassionate use in Europe and asked him, if we should go that route. Even though he originally wanted to start my father on ipi/Yervoy after PLX4032, now he says that my father is deteriorating fast and he wants to stop the tumor growth and hope for shrinkage. He said that it takes a long time for Yervoy to work (months) and we may get a faster result with chemo (weeks). He also added that Yervoy works best when the patient is at his strongest, which does not apply to my father anymore.

My questions are:

1) Should we start carbo/taxol combo? Does anybody have experience with it? I am concerned that chemo may suppress my father's immune system further, but I also heard that sometimes chemo or even the flu may wake up the immune system? Any thoughts?

2) Should we start Yervoy or is it too risky considering the long wait and my father's condition?

3)Are there any other suggestions?

I now regret not having tried ipi at the very beginning and opting for MEK inhibitor instead. At least, we would have known whether my father is a responder or not. I have to admit that I feel responsible since I was helping my father make decisions. We thought that we still had time, if and when we failed the inhibitors, but FDA approval got in the way. At the time, we discussed that ipi is going to be around and most likely FDA approved, but we did not know whether or not MEK will be available in the future, so we decided to try MEK while we had an opportunity to do so. I find it very unfortunate that patients cannot have access to drugs when they most need it.

I would appreciate your feedback.

Many thanks.

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lhaley's picture
Replies 7
Last reply 7/8/2011 - 2:24am

Yesterday at my mel specialist appointment I told him that I wanted so badly to celebrate this day as NED. He winked and said he could ask Dr White to remove the tumor this afternoon and then I could proclaim that I was!  Didn't happen, but I knew it wouldn't.  Instead he did a FNA on the new site on my arm below what was supposed to be radiated.

My scans were clean!!!!  2 Lung nodules remain stable, that's about 9 months now.  The lump on the arm didn't show up but it was deemed to small to show on a PET, hence the FNA. 

If it comes back as mel then my options were discussed. I will be leaving it and going systemic since it would just be used as a marker.  If it comes back clean then they will most likely remove it just to be sure.

New trial that has come on board. I had heard but I guess new sites are now getting it. For resected stage 3 and stage 4.  This is great since stage 4 NED have had no options except if you have the positive hla factor!!!  One arm is Yervoy at an increased dosage. Normal protocal but then after the 3 months it's once a quarter to finish the year. The other arm is interfuron - 12 months.  So as normal they give a good option along with one that we don't want to get, especially at stage IV.  Dr and I discussed it, if this new spot ends up being ok but neither of us think I could handle the 5 hours round trip every day for a month if I ended up with the interfuron arm. 

I am excited about reaching this milestone! Have been dealing with mel with multiple primaries since 79 and now 5 years stage IV.

Waiting for the phone call with the results. Can't believe how quickly this has been acted upon. Called office on Thursday afternoon. Friday morning oncologist talked to radiologist and stopped treatments till further info was gathered. Holiday weekend. Tuesday Pet/ct, results, dr appointment and then they talked my surgeon into staying after his other appointments to do the FNA!  phew.


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Replies by: Dynasysman, MariaH

Visited with surgeon today.  For anyone in the expanded Philadelphia area, my surgeon, Giogios Karakousis at Penn, is totally a rock star. Brilliant, great bedside manner, excellent hands as a surgeon. The whole package...

I digress.  We now have a plan of attack:

Next Thursday:  PET-CT to check for mets outside the left posterior neck region

July 18:  Meet with surgeon to plan next steps.  If no mets outside region (or maybe only 1-2 small ones), we remove tumor later that week.  If more growth, we go directly to meeting with ONC and plan for some kind of systemic therapy.

When we found reference to the tumor on the March PET-CT, it was noted as 8mm.  Two days ago, on ultrasound, they estimated 1cm.  This is a bit like comparing apples and oranges, but 25% growth in four months isn't all that fast...

I have a plan, I have hope, and I am making a stronger community of support for myself.  Thanks for reading, writing, and hoping along with me.

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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