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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Dear MPIP Community Members:

Researchers at the University of North Carolina are working to develop programs to support families affected by a parent’s cancer. If you are the parent of one or more biological or adopted children under the age of 18 and have been diagnosed with advanced cancer, you are eligible. If you would like to participate, please use the following link to complete this ANONYMOUS survey:

http://go.unc.edu/ACAPUNC

The Principal Investigator for this study is Dr. Eliza Park of the University of North Carolina at Chapel Hill. Questions about the study can be directed to Dr. Park at Leeza_park@med.unc.edu or (919) 966-3494. The survey should take approximately 20 minutes.

Sincerely,

Shelby - MRF

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buffcody's picture
Replies 1
Last reply 4/26/2015 - 1:17pm
Replies by: Anonymous

Catharine Poole who heads up the Melanoma International Forum just had published her latest book on melanoma.  It's up to date, which because of the greatly changing nature of the field is of great importance to us but hard to come by in readable and comprehensive form as this book provides.  The price is right from Amazon with an interesting Kindle offer right now.  (I don't have a Kindle so I can't try it.)  The easiest way is to just enter Catharine Poole in the search engine on the Amazon site (or Barnes and Noble) and Voila! you'll have it all. I'm a sometimes poster here and have profited a great deal from this forum and Catharine's

 

Frank

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/26/2015 - 5:20am
Replies by: Beezer, arthurjedi007

Hello Friends, My sister is two months out from her last WBRT for two large mets to the brain, she also has it in her lungs but the combo chemo drug she was on before WBRT was shrinking those, unfortunately the cough is now back again and we are worried, she had to be taken off the combo drugs before WBRT started, and to be honest the side effects from the radiation were worse than we thought, it has affected her walking and one hand is affected and also her congnitive is affected, she forgets things easy and she can  get very anxious, and aggressive even at times, she is on 2000mg of Keppra so thats not helping, she is starting ipi next Friday and we are delighted with that, but speaking to her today on the phone she is totally flattened, she has no energy at all and I'm worried she will not have the strenght to deal with this new drug. She is only 49 and she is my light in a storm, Im devasted I cannot be with her each day as she lives in Queensland and I live in Europe. She is the greatest little battle soldier you can find and has am amazing husband who cares for her day and night, but I'm so worried today as her strenght was not there and what if she cannot manage the ipi, What worries me about all this is the side effects of the radiation have worn her down we never expected this, will these side effects go away or are we hoping for to much.

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Anonymous's picture
Anonymous
Replies 0

Hello Friends, My sister is two months out from her last WBRT for two large mets to the brain, she also has it in her lungs but the combo chemo drug she was on before WBRT was shrinking those, unfortunately the cough is now back again and we are worried, she had to be taken off the combo drugs before WBRT started, and to be honest the side effects from the radiation were worse than we thought, it has affected her walking and one hand is affected and also her congnitive is affected, she forgets things easy and she can  get very anxious, and aggressive even at times, she is on 2000mg of Keppra so thats not helping, she is starting ipi next Friday and we are delighted with that, but speaking to her today on the phone she is totally flattened, she has no energy at all and I'm worried she will not have the strenght to deal with this new drug. She is only 49 and she is my light in a storm, Im devasted I cannot be with her each day as she lives in Queensland and I live in Europe. She is the greatest little battle soldier you can find and has am amazing husband who cares for her day and night, but I'm so worried today as her strenght was not there and what if she cannot manage the ipi, What worries me about all this is the side effects of the radiation have worn her down we never expected this, will these side effects go away or are we hoping for to much.

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jessann's picture
Replies 3
Last reply 4/24/2015 - 5:46pm

Hi! New to the board and had a crazy ride so far. A mole I have had since birth, had a melanoma arise within it. Has anyone had this before? My first bioposy came back as: Clarks level III-IV with a lesion with app depth of 1.5mm, superficial spreading., but also said features that might suggest its arising from a congenital nevus, and should be considered approx. This triggered my surgeon to warrent a 2nd bioposy by someone that specialize more in melanoma. The 2nd report came back OPPOSITE! showing: Malignant Melanoma, superficial spreading, probable anatomic level 1 in-situ. WOW so now what do we do? I saw an oncologist who suggested I either do full surgery (SLNB and excision) or send it again to Dr. Mihms who deals with complex cases. I just got the new results today. It does explain it a bit more and I wonder if anyone has been in the same situtation? Malignant Melanoma, superficial spreaking, level IV, and a measured thickness of .55mm, arising with a compound congenital nevus with moderate atypia extending to within 1.5mm of the lateral margin. no ulceration, regression, or vascular invasion. Recommended a re-excision and the question of SNLB is left to the patient and physician. I haven't talked to the oncologist yet, no one calls back and I leave so many message (frustrating). And on another note I was scheduled for surgery today (because the oncologist said the 3rd results would be back mid week and as of last night at 5pm the nurses couldnt find them). So now my surgery will be this coming week and I am left to decide the best treatment. Any thoughts from the community? Also, with the full surgery, what is recovery like?

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Anonymous's picture
Anonymous
Replies 8
Last reply 4/24/2015 - 1:42pm

I would like to know how long Keytruda treatment last. Hoping somebody on this board have experience with the treatment.
Good luck to all of you!

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1derdog's picture
Replies 1
Last reply 4/24/2015 - 1:03pm
Replies by: arthurjedi007

I could really use some positive information on my husband's latest ct scan.  7 months ago my husband had a lesion in his right middle lobe which was removed successfully by VATS procedure.  They got it all & deemed him NED.  Now, in his latest CT scan they found a 2.9 cm lobular lesion just medial to the uncinate process of the pancreas invading the superior mesenteric vein.  He is being scheduled for a pet scan next week to determine if it is melanoma again.  His doctor doesn't think it is but obviously wants to eliminate the possibility.  Is anyone on this board familiar with something like this? The waiting is awful since we found out. We were so happy for the last seven months thinking that maybe this was the end of this roller coaster ride.  He had the mass in his lung for two years while on a clinical drug & it did not spread.  

Any words of comfort or information (good or bad) would be greatly appreciated.  

 

Thank you

 

wife (caregiver)

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josephsli's picture
Replies 4
Last reply 4/24/2015 - 12:13pm
Replies by: jessann, POW, josephsli, Janner

Hi, 

I am an Asian male, 34, and have had a mole-like lesion on my right arm since I was very young (or even likely born with it) for as long as I can remember, and more importantly, its size and shape has NOT changed at all since at least 15 years ago when my parents and I I started observing it. 

In late June, I went to see a dermatologist for a separate condition (a mole on my face), which the doctor very quickly dismissed as anything alarming but believed that the congenital nevus on my arm closely resembles the typical melanoma: blurry boarders, asymmetric shape, etc. The only counter-argument I had was that it has NOT changed at all for at least 15 years. The doctor then advised that a PREVENTATIVE full excision be performed, even it was NOT likely a melanoma due to my race, age, which I followed and the full excision biopsy was performed. 

2 weeks later (just today), the pathologist's report came back with a shocking melanoma diagnosis:

'right posterior arm, malignant melanoma, approx. 0.4mm tumor thickness with associated congenital compound nevus, 0 mitotic figures per mm2, nonulcerated, completely excised on all edges and in depth.

comment: ki-67 would be of value to better interpret the dermal cells which, although they resemble the epidermal cells, merge into areas of congenital nevus with areas of maturation.'

In 'layman's language', the doctor told me:

1) according to the 1st pathological reading of the biopsy sample, this is a malignant melanoma

2) based on info presented, it looks like a Stage I, but we have ordered staining (ki-67 is actually a protein)/enhanced specimen processing ('2nd pathological reading') to see if my melanoma cells are REALLY contained within the 0.4mm depth vs. having already spread

3) regardless of the 2nd pathological reading, a 2nd excision surgery needs to be performed ASAP to remove an even larger area, but the 2nd pathological reading will determine how deep/wide this 2nd excision will be. 

My questions at this stage is simple - could the 1st pathological reading have been 'a false positive', considering the fact that my lesion has NOT changed for at least 15 years (not months!)? I read somewhere that about 16% melanoma biopsies result in false positives, however they usually occur during partial excision (my case was full excision). Also to my 'disadvantage', both my dermatologist and his dermatological pathologist agreed with the melanoma diagnosis. 

Any opinion or references will be helpful. I have a loving and supporting yet vulnerable wife, a 3 year old girl, and a 25 day old son. Your prayers will be greatly appreciated.

Thanks

Joe

 

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flaglerjoe's picture
Replies 7
Last reply 4/24/2015 - 10:04am

Anyone else have the SLNB weeks after the WLE? They initially measured my melanoma as thin based on the punch biopsy, and after the WLE, pathology showed that it was actually a 2mm depth. Tomorrow I am going back from the SLNB that they did not do initially several weeks ago. 

 

I know this isn't ideal but I wondered if anyone else had theirs a while after the initial WLE?

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newmanmark's picture
Replies 4
Last reply 4/23/2015 - 6:18pm
Replies by: newmanmark, Ed Williams

I was wondering if anyone has any information on the treatment for melanoma mentioned in the last paragraph of this article.  It looks like there's some major progress being made.

http://ottawacitizen.com/news/local-news/ottawa-scientists-hail-viral-st...

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tomw65's picture
Replies 1
Last reply 4/23/2015 - 5:02pm
Replies by: Mat

How long after the four ipi  infusions before testing to see if anything isworking or not

hazel43green

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dentholla's picture
Replies 18
Last reply 4/23/2015 - 9:07am

I posted a few weeks ago about my husband being newly diagnosed with melanoma.  He had a shave biopsy that I was not excited about (method) and pathology results that were all pointing to >than what was estimated.  As it stands we received the results back from the SNB and the node (in parotid)  was positive for microscopic melanoma cells.

His melanoma was on his temple, all removed and all told 1.5mm (over twice what the shave said it was) and UT Southwestern thinks the surgeon did appropriate excision of 1cm.  So for that we feel grateful and do not have to do another WLE.

I need some advice guys.  We feel lost, helpless, and while I have been on this forum for weeks now he has not.  We haven't really been able to talk about all of this until today.  We are getting a 2nd opinion next week at Baylor (Dr. Cowler is who our ENT referred us to) and I understand there are some on this forum that are participating in Stage III trials at Baylor.  I'm interested to hear if anyone has feedback on that.  Also, UT Southwestern recommended a PET scan before we proceed with the moderate neck dissection to see if it has spread.  Is this a normal course of action?

Thanks, sorry I'm all over the place.  I honestly don't know if I can catch my breath still.  I am trying to stay positive and let him know this isn't a death sentence and a lot is being done now to treat and prevent reoccurrence.

 

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Jeffreyd's picture
Replies 3
Last reply 4/22/2015 - 11:35pm
Replies by: Anonymous, Julie in SoCal, mary1233

Hi All - First time posting here. I have stage IV melanoma that's spread to the brain and liver. I've done TIL therapy at NCI and have been on Dabrafenib/Trametinib for about 7 months. I'm planning to start Yervoy soon but would really prefer to do an anti Pd-1 (Keytruda or Opdivo) first if I could. 

Does anyone have experience getting insurance to pay for Keytruda or Opdivo before Yervoy? I understand it may be easier now with the NCCN guidelines and with the new studies coming out this week in the NEJM. Any suggestions?

Thanks!!!

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Speedster's picture
Replies 9
Last reply 4/22/2015 - 11:22pm

Today I was patient #1 at Baylor Samons for the Yervoy (Ipilimumab) vs. OPDIVO (Nivolumab) Phase III Clinical Trial.   Designed for Stage III patients - resected tumors, NED to determine if either is effective as an adjuvant therapy.

The trial will have 800 participants across the country.  Who else is in and what are you experiencing as you ramp up the treatment? 

Nothing noticeable for me after the first treatment today.  

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newmanmark's picture
Replies 5
Last reply 4/22/2015 - 11:55am

Hello,

I started Mekinist and Tafinlar today and I'm looking for some positive stories from people who are having success with this treatment.  I am 35 years old and stage 4.

Thanks

Mark

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