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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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

Hi,

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 mel...........how 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
Anonymous
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?

Denise

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:

http://www.youtube.com/watch?v=LW-YHFsxkqE&feature=related   (According to AAD this actually came out in 2008)

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

http://www.youtube.com/watch?v=vxDG2VuBAtU

Spread and enjoy.

Grace and peace,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (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.

Linda

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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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boot2aboot's picture
Replies 6
Last reply 7/7/2011 - 6:29pm

To all the stage 4 vets out there i need your help...i reposted this on suggestion of Linda...

I was initially diagnosed in April after finding a golf ball size tumor in my right armpit-stage 3c...i had surgery, 3 consults and decided on biochemo...before i could begin treatment i grew another mel in the same place...got it cut out and local radiation for 1 week then rescanned...to find 5 questionable spots in lungs and one definite mel in liver...so you see i have very aggressive mel...i am still on learning curve.

My onc suggested i start chemo on tuesday and biochemo was out of the question and IL2 put on hold until after the chemo...she said she was also considering me for a plexxon trial depending on braf results (which we are waiting on)...she wants to do 6 rounds of chemo (5 day week 6 week) and rescan and do another couple rounds  before starting me on Immunotherapy(i think i heard this right)...i am especially looking for input from Charlie, Jimmy B, MichaelFL, King...but anyone with aggressive mel and liver mel i would like to hear from...i know i can't sit on the fence long if at all, but i want to do the best thing for me and i just don't know enough....i take a lot of nutritional suppliments but do not want to compromise liver...

boots

don't back up, don't back down

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Lisa13's picture
Replies 8
Last reply 7/7/2011 - 1:11pm

Next Friday, I have my second session with dacarbazine and then a CT scan 10 days later. I know this form of chemo has had little benefit, but I can only hope that my low tumour burden responds to it. I'm remaining hopeful, but in the back of my mind, I have to be prepared for a Plan B. That being said, my onc. suggested ipi if the dacarbazine works, but I want to know if anyone believes IL-2 is a better option or should I leave that as Plan C?

Here's hoping I won't have to venture into Plan B.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Nicky's picture
Replies 3
Last reply 7/7/2011 - 12:35am

 

Hi everyone.

 

I've just appeared on TV here in Australia after having my third primary melanoma removed last week.  Currently Stage 3 for 11 years.

They have these amazing new machines they are trying to raise funds for detecting melanomas and a mobile application for people living in remote places.  I am so happy to have raised awareness for this beast of a disease and supporting the researchers. 

http://www.facebook.com/video/video.php?v=212734718770836&oid=117386068281442&comments

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JPost's picture
Replies 6
Last reply 7/6/2011 - 10:34pm
Replies by: JPost, Lisa13, nicoli, Jenjen, Janner

Wondering if anyone knows if there are specific characteristics that distinguish clearly between the two (dermatofibroma vs. Nodular Melanoma)?  I have a history of several dysplatic (i call them my "crazy moles"!) removed in last 5 years, with the worst one on my back which came back as Melanoma In Situ...no problems in last 3 years, then recently (in last 2 months) a new "growth" on my right shin emerged.  I'm having it removed/biopsy in a couple of weeks....it's growing, sort of tan color, like a mole, but raised....is/are there any specific characteristics that tell these 2 apart from visual appearance?  thx!

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