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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DonnaK's picture
Replies 9
Last reply 5/25/2013 - 12:13pm

Hi.  I haven't posted for quite a while, but I've continued to read the boards daily and seen lots of great advice.  We learned last month that my husband progressed to stage IV with lung mets and we were prepared to enroll in a TIL trial at NCI today. Unfortunately, he was denied admittance at the last minute due to the appearance of numerous (>10) subcentimeter brain mets.  

We are now seeking a new treatment plan.  The first doc suggested WBR along with zelboraf. Has anyone had success with htis combo? What other strategies have worked for people who have too many brain mets to do SRS/GK?  I'm really looking for any ideas or success stories as I need something to stay optimistic...

Thanks in advance!  

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flvermonter's picture
Replies 3
Last reply 5/23/2013 - 11:47pm
Replies by: Janner, POW, washoegal

Hello,
As tests showed, my husband is stage iii and they will schedule surgery to remove the rest of the nodes on that side. Another surgery to remove the stage i lung cancer in his right lung. They came up with 6/27 for date both Drs would be available. Too far out per us and the Melanoma Dr Zager. He booked the sugery 6/6, but after he saw his cardiologist, they have to schedule a stress test. Hopefully, it will be in time for his surgery. He was so down when he got home from the cardiologist wondering what his stress test doesn't support the surgery. I don't know that answer. Of course I told him that he will be fine, but he is really down and does not want to talk about it,. Any thoughts of what happens if his stress test doesnot support him having surgery? Also, help me help him be more positive when he does not want to talk about the cancer, or options. Thanks, Mary

Hugs to all, patients and care givers.

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Anonymous's picture
Replies 18
Last reply 1/5/2016 - 5:27pm

I just got my pathology report and after cruising this board, I guess it doesn't look too good. Any help or advice would be greatly appreciated.
Superficial spreading amelanotic, Anatomical level : at least iv, greatest thickness at least 2. 9 mm, ulceration present, radial growth phase present, vertical growth phase present epithelioid, spindled, margins extending to the lateral and deep tissue edges , mitosis 16 per sq mm , tumor infiltrating lymphocytes present , non brisk.
But at least there were no micro satellites, lol
Trying to stay positive waiting for the surgeon to call for my appointment . Please help me decipher this

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I just got my pathology report and after cruising this board, I guess it doesn't look too good. Any help or advice would be greatly appreciated.
Superficial spreading amelanotic, Anatomical level : at least iv, greatest thickness at least 2. 9 mm, ulceration present, radial growth phase present, vertical growth phase present epithelioid, spindled, margins extending to the lateral and deep tissue edges , mitosis 16 per sq mm , tumor infiltrating lymphocytes present , non brisk.
But at least there were no micro satellites, lol
Trying to stay positive waiting for the surgeon to call for my appointment . Please help me decipher this

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/23/2013 - 2:26pm
Replies by: Anonymous, Janner

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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Anonymous's picture
Anonymous
Replies 1
Last reply 6/2/2013 - 12:03pm
Replies by: ecc26

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.

Login or register to post replies.

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 8
Last reply 5/25/2013 - 6:29pm

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

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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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gabsound's picture
Replies 11
Last reply 6/4/2013 - 7:32am

Hi all,

I finished up 4 rounds of Abraxane, Avastin and Carboplatin and had scans last Friday. After my fist tretment I saw a soft tissue tumor on my back disappear. Another lesion on my arm went way down by the third treatment, but after the 4 th started growing again. It Is now quite large and uncomfortable. . The lesion on my back is growing back as well. The lesions in my liver I don't think are growing like the arm, or I would be in some serious pain. My bone mets in the spine are bothering me off and on. I started on a fentanyl patch and that is giving me less problems than the MS Contin. Such a balancing act, managing pain and the side effects from the pain meds ( nausea, constipation, sleepiness and for me anxiety).

Pet scan results show mixed response with liver and lungs looking better, but increase in a lot of the lymph nodes, soft tissue lesion in arm and thigh quite large as well as bones and buttocks region.

Brain MRI shows multiple small lesions in the cerebellar and cerebral hemispheres as well as a 19 mm lesion in the left occipital lobe. Devastating news!!

I had a good cry with my husband. We continued today with another chemo treatment which had the dose increased as it is helping some of the lesions.

Plan will be to meet with the radiation Oncologist and get going on treatment for the brain mets. My oncologist wants to start me on MEK inhibitor, hopefully it will be approved soon. He is checking on a trial, but I think brain mets exclude you from most trials. He will attend ASCO next week and hopefully there may be other options.

I am so thankful for all of you on this board. It really does help to have fellow warriors going through this together.

Praying for all of us, and let's keep moving forward .

Julie

I was diagnosed Jan 2011 stage 3. I hoped not to keep progressing like I am, but am so glad for the time I have had with my family and friends. I pray the quality of my life will remain good. Brain wise I think I am asymptotic I feel for my husband who gets all this news and has to support me. He does such a great job. I love him, and am so happy to have him in my life. My daughter will graduate from high school this June. I'm happy to be here for that as well.

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