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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bikerwifee's picture
Replies 3
Last reply 5/23/2013 - 6:19am
Replies by: BrianP, POW, Swanee

I dont know how but Lynn ldh went down to 900 was 1300. The dr will not be doing the sixth gamma knife. Lynn is to weak. He starts Temador tomo but they gave us only a 15 to 20 percent chance in it working. Theres just nothing else for us to try. Lynn is a fighter and was willing to try this.

Lynn got saved a long time ago and hes says he knows hes going to heaven. I think hes ready but not ready he prayed today and asked God to heal him hes asked God to please take him home if he wasnt going to heal him. Ive never seen one man have so many people pulling for him. They recently had a bike run for him over 100 motorcycles and riders showed up. Ive seen people pray that I would have never thought could pray.

Thank all of you for responding when i just needed comforting words. I pray God continues to comfort snd heal each of you and I pray all these new drugs make it in time to save you all.

Lynn survived 5 gamma knife surgeries for 32 brain mets, ipi was a breeze no problems, zelobraf for 8 month and abaraxene and know on to temador. DONT EVER GIVE UP OR GIVE IN. FIGHT ON MY DEAR FAMILY

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I had a couple moles removed and told I was lucky that it was pre melanoma but the doctor didn't really explain my path report the first time and I had to have them go in deeper until the margins were clear. I was told that I would have to be vigilant and watched closely could anyone explain to me the path reports?

A. Microscopic examination of the slides show an atypical melanocytic lesion with melanocytes in the epidermis and dermis consistent with a dysplastic junctional nevus. The margins of excision cannot be accessed with certainty.

B. Microscopic examination of the slides show a limited specimen showing atypical proliferation of melanocytes in the dermis with junctional component highly consistent with a junctional dysplastic nevus. Recommended reexcision with negative margins

Final Diagnosis
A. Consistent with a dysplastic junctional nevus The margins cannot be accessed with certainty. Therefore, I recommend re excision with negative margins.

B. dysplastic junctional nevus with positive margins Recommend re excision with negative margins

Here is the path report from re excisions

Sections consist of skin erosion, squamous hyperplasia, edema and mild chronic inflammation. Residual carcinoma or dysplasia is not identified in these sections. The margins are free of dysplasia/carcinoma.

Final Diagnosis
Residual dysplasia is not identified. Erosion, squamous hyperplasia, and mild chronic inflammation.

Can anyone kind of explain to me what all this means in a more understanding way? I am having to see a dermatologist about more suspicious moles that are changing and suspicious on other parts of the body. The two biopsies before from the same leg.

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I had a couple moles removed and told I was lucky that it was pre melanoma but the doctor didn't really explain my path report the first time and I had to have them go in deeper until the margins were clear. I was told that I would have to be vigilant and watched closely could anyone explain to me the path reports?

A. Microscopic examination of the slides show an atypical melanocytic lesion with melanocytes in the epidermis and dermis consistent with a dysplastic junctional nevus. The margins of excision cannot be accessed with certainty.

B. Microscopic examination of the slides show a limited specimen showing atypical proliferation of melanocytes in the dermis with junctional component highly consistent with a junctional dysplastic nevus. Recommended reexcision with negative margins

Final Diagnosis
A. Consistent with a dysplastic junctional nevus The margins cannot be accessed with certainty. Therefore, I recommend re excision with negative margins.

B. dysplastic junctional nevus with positive margins Recommend re excision with negative margins

Here is the path report from re excisions

Sections consist of skin erosion, squamous hyperplasia, edema and mild chronic inflammation. Residual carcinoma or dysplasia is not identified in these sections. The margins are free of dysplasia/carcinoma.

Final Diagnosis
Residual dysplasia is not identified. Erosion, squamous hyperplasia, and mild chronic inflammation.

Can anyone kind of explain to me what all this means in a more understanding way? I am having to see a dermatologist about more suspicious moles that are changing and suspicious on other parts of the body. The two biopsies before from the same leg.

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bikerwifee's picture
Replies 0

I dont know how but Lynn ldh went down to 900 was 1300. The dr will not be doing the sixth gamma knife. Lynn is to weak. He starts Temador tomo but they gave us only a 15 to 20 percent chance in it working. Theres just nothing else for us to try. Lynn is a fighter and was willing to try this.

Lynn got saved a long time ago and hes says he knows hes going to heaven. I think hes ready but not ready he prayed today and asked God to heal him hes asked God to please take him home if he wasnt going to heal him. Ive never seen one man have so many people pulling for him. They recently had a bike run for him over 100 motorcycles and riders showed up. Ive seen people pray that I would have never thought could pray.

Thank all of you for responding when i just needed comforting words. I pray God continues to comfort snd heal each of you and I pray all these new drugs make it in time to save you all.

Lynn survived 5 gamma knife surgeries for 32 brain mets, ipi was a breeze no problems, zelobraf for 8 month and abaraxene and know on to temador. DONT EVER GIVE UP OR GIVE IN. FIGHT ON MY DEAR FAMILY

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BrianP's picture
Replies 33
Last reply 5/22/2013 - 9:34pm
Replies by: BrianP, POW, Linny, Tina D, Janet Lee, Randy437, Anonymous, jmmm, Sherron, buffcody

Quick background: 2006 .91mm skin mel excised from left chest area; Sep 2011 dx of stage IIIB, axilla disection, 24 nodes removed 2 positive; Nov 2011 local rediation; Dec 2011 begin interferon; Dec 2012 complete interferon; Dec 2012 clear scans (pet and Brain MRI)

I've been feeling a little run down lately so a few weeks ago I ask my Dr to put in lab work for me to check my iron levels.  For most of my life I've had a tendency to be anemic at times.  Blood work comes back as being anemic.  I'm just thinking no big deal, I've been this way my whole life just give me some iron supplements and I'll be on my way.  Dr persuades me to give stool samples to see if there is any other underlying causes to my anemia.  I reluctantly agree and of course all three stool sampes came back as positive for blood.

My two biggest fears now are 1) I could possibly have colon cancer or 2) this is a reoccurance of my melanoma.

My question to the board is if anyone has seen or heard of blood in the stool as a symptom or indication of possible melanoma reoccurance.  I don't recall seeing the stomach or intestines as a location where metasises typically occur.  I know there are many other possible less severe diagnosis but as many of you know it's difficult not to be concerned that the mel has returned anytime you have anything out of the ordinary.

Any advice or comments would be greatly appreciated.

Brian

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Hello all, we had our every three week check and infusion today on the Merk-3475 Anti-Pd-1 trial ( 5th infusion) , scan results that we took three weeks ago were revealed.  All tumors in the body have shrunk, and the small brain met that was stable prior to treatment is still stable.  Left upper lobe lung: was 14x12mm, now 12x10mm, Anterior mediastinal was 44x26mm now 28mmx24mm.  Right upper lobe lung was 38x26mm now 32mmx22mm.  Liver segment II was 21mmx18mm now 20mmx14mm.  And ventral Peritoneal was 20mmx17mm now 18mmx14mm.  We are extatic!  He has regained all his weight lost from his bowel obstruction, and we have gone on bike rides again...He's awake more often that i am!!! haha!  Hoping it continues for a long time!

On a side note Dr. Ribas noted that they are opening a new arm of the trial with 200 more patients.  Will be randomized between 2mg and 10mg and every 2 weeks or every 3 weeks...at UCLA. 

-Amanda-
Girlfriend of Randy, stage 4 no primary.

"Give thanks in all circumstances"

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Sharon's picture
Replies 1
Last reply 5/22/2013 - 7:50pm
Replies by: NYKaren

May 6 my husband had another scan and blood work and all is clear! We thank God again for this wonderful news. He continues to go to the VA every three months for checkups. We are very thankful for their great care!

God, Family, Friends and Dogs ~ it's all that really matters!

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sjl's picture
Replies 4
Last reply 5/22/2013 - 3:52pm

Hi - it's been awhile since I posted.  My husband's situation has very rapidly deteriorated in the last 3 weeks.  The tumors on his neck are huge, his face is distorted, he can't talk or swallow, one eye will not close and initial scans show that the melanoma is most likely now in the liver and lungs.  Further testing has not been done because it doesn't matter with the neck the way it is.  The tumors are pressing on the corotid artery and the jugular vein.  He is on oxygen and a feeding tube.  He's got blood clots in one lung.  Carbo/Taxol quit working, Yervoy failed, a round of Dacarbazine didn't seem to help and he just completed 5 rounds of radiation that seem to have slightly shrunk what we can see.  His situation is so bad that our local doctor didn't want to complete the radiation that was begun while he was hospitalized and under the care of his melanoma specialist two hours away form home.  He was rehospitalized to get the feeding tube under control and they wanted to complete the radiation so it was done.  Now they want to talk to us about a clinical PD1 trial.  What are your thoughts on this?  And who pays for it?  It would be done at the Hillman Cancer Center in Pittsburgh. I'm not sure if I've tracked down the correct trial or not but if I did it's a phase 1 trial.  He's cKit and BRAF negative, NRAS positive.  I want to go to the appointment as fully prepared as I can be so I can ask the right questions and have some idea of what to expect.

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Ranisa's picture
Replies 2
Last reply 5/22/2013 - 3:28pm
Replies by: Ranisa, BrianP

A friend just called and has been diagnosised with Melanoma.  I am only familiar with docs in the midwest.  Can anyone recommend a dermatlogist and oncologist in the Portland OR area that is a Melanoma specialist?  Thanks!

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Here's the archive of today's webinar:  http://www.melanomainternational.org/news/til_nci.html 

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Anonymous's picture
Replies 3
Last reply 5/22/2013 - 2:07pm
Replies by: Anonymous

Here is the series of events....

-Biopsy  early April

-Full excision end of April (diagnosed stage 1A)

-Progressively, in this last week, brown pigmentation is showing up right through the excision scar....it is not normal scar tissue, it's the same shade as the brown color their originally removed, and its exactly where it was before ........... The

-WLE scheduled for the end of this month

 

 

Is it possible that in the last month, (and since the margins from the last excision were NOT clean) that it is still growing, maybe even at a faster rate now that they've messed with it so much? Im wondering why they didnt go right from the biopsy to the WLE, but they DID remove ALL the visible pigmentation will the full excision, and now I can see it again....

 

Thoughts?

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bikerwifee's picture
Replies 9
Last reply 5/22/2013 - 8:08am
Replies by: Lori C, kylez, deardad, Fen, BrianP, Anonymous, Sherron, Phil S

I come to this page daily looking to see how everyone is. Looking for new treatment ideas and to find comfort and friends. I havent been able to do that or find many friends so Im signing off. I pray for the few I have gotten to know and pray for miracles in your lives. May God bless you.

To those that has been concerned Lynn has umdergone five gamma knife surgeries for 32 mets which are dead and dying. He has 7 new omes which means no clinical trial for us. He has umdergone, yervoy, zelobraf, abaraxene, and know temador which we all know to be pretty use. Hes very weak sleeps alot and im pretty sure when we go tomo they will put him on hospice. He says hes not given in and wamts to live but thetes just no treatments.

Belva loving wife to my warrior Lynn

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Anonymous's picture
Anonymous
Replies 9
Last reply 5/21/2013 - 11:04pm

I have had two tiny lung nodules since January ( 2 mm and 3 mm). In march I had a CT scan on lung. Both nodules grew about 1 mm. I had a MRI of brain in April which was clear and a CT on lower body which was clear. Last week I had a CT on lungs again to qualify for IPPI/anti-pd1 trial. I found out I have 7 more tiny nodules in both lungs plus the two nodules have grown about 2 mm. None of the nodules are 1 cm to qualify for study. The biggest is 8x8 mm. Plus I just last week got a 2 inch blister on my upper thigh where I deal with lymphedema. There are doing a biopsy this week. What are my options? Should I wait to get in study or start IPPI right away? Is it possible to do targeted radiation and then immunotherapy ? Can they do surgery on that many lung nodules? I already had one lung nodule removed by surgery before January . I am desperate for advice!!!

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kiser7677's picture
Replies 2
Last reply 5/21/2013 - 10:53pm
Replies by: washoegal, Fen

My husband was diagnosed with stage 3 melanoma last June 2012. He found a lump under his left arm. He had the lymph node removed and it was melanoma. After that they went back in and removed 8 more lymph nodes and they were all negative. He also had a mole removed, the mole was also Melanoma, but they had trouble getting a positive for Melanoma. The biopsy at the office was negative, the positive didn't come until it was completely removed with the positive lymph node at surgery. All scans were clear at that time. In September he started the intro a. And the in January of 2013 he had a reoccurrence in the exact same spot. Since he was taking the treatments we thought it was scar tissue. The Melanoma was directly behind his scar. So, that was removed. It was decided after that to do radiation. So, in March he started his radiation and the day after he finished, he found another lump in the same exact spot and that too is Melanoma. That's currently where we stand. He had a scan last Friday and we have our follow up appointment this Thursday and I pray it hasn't spread anywhere else. I guess my first question what's some other treatments and is this happen a lot? To get Melanoma with taking these treatments? Thanks for the info.

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