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.

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ad2424's picture
Replies 2
Last reply 5/28/2013 - 10:14am
Replies by: jcmp, Cindy VT

 

I'm telling my experience in the hope that it can help others. It took me a year and a half to get the courage/strength (mental) to write this.

In 1994, I had a mole removed from my back which was determined to be melanoma. I had a WLE but no treatment. In June 2011, I had a funny looking mole on my chest removed which was metastatic melanoma. Through VAT, I had a portion of my lung removed in July 2011.

I began to research adjuvant clinical trials. I was considering a trial with Dr. Webber. At my first three month scan on October 20, nodules were found throughout my lungs. So much for an adjuvant trial. They were all very small, measuring less than 1 cm. Since they were not big enough for me to qualify for a clinical trial, my choices were IPI (20% 5+ year survival in latest stats), IL-2 (stats below), or Zelboraf. I chose IPI but decided to scan again in one month, because after discussions with my doctor, we wanted to make sure they were viable and really growing.

The November scan showed some minor growth and so it was time to begin. I changed my mind though. I decided to first go with IL – 2.

There were a few reasons I made this decision. (a) I was otherwise very healthy and in good shape
(51 y/o, 5’8”, 150 lbs, running 2 miles a day). (b) The nodules were small and growing very slowly.
(c) There was belief among experts that one therapy might help a subsequent therapy.
(d) Finally, I wanted as many chances to kill this as possible. As a noted melanoma oncologist told me at the time:
High-dose IL-2 is still considered as a first therapy in this situation (it can eradicate disease, it doesn’t
burn any bridges, and appears to make subsequent immunotherapies work better).

I knew the treatment would be rough, but I also knew that I was in good hands. Dr. Janice Dutcher in New York had done more of this type of treatment than anyone else in the country. IL-2 has a 6% complete response and 10% additional partial response (http://www.ncbi.nlm.nih.gov/pubmed/10685652). Not great odds, but again I wanted as many chances to kill this as possible.

I suffered through three week-long stays in the hospital (Monday through Friday actually). After staying home one week after each week in the hospital, I was able to go back to work. It took a while but I am back to running 2 miles a day.

The good news, for now at least, is that my nodules have been stable since then. That makes about a year and a half. So, maybe I'll get a few more months of stability, maybe a few more years, or maybe my next scan will show the stability has faded. My main reason for writing this is because I think IL-2 has a bit of a bum rap. Yes it is harsh. But for those in certain circumstances such as me, it was not an unreasonable step as a first option. 

 

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Ronskidtexx's picture
Replies 1
Last reply 5/27/2013 - 7:41pm
Replies by: BrianP

The good news I am still NED of Stage IV Melanoma after 15 months. The disappointing news is that during my recent CT's of my abdomen, they found a suspicious spot on my pancreas. Turns out to be a Endocrine tumor. Totally unrelated to melanoma. The good news is it is the non-aggressive type of pancreatic cancer. Only less than half an inch in size. Distal pancreactomy surgery scheduled for June 3rd. Saving the spleen. Oh well, guess I will be a two time survivor of cancer!!!!! Scanning for melanoma reoccurances saved me on this. Usually no symptoms untill too late and has spread. Don't stop scanning every 3-6 months people. Cancer is not getting me! I am a tough SOB!!!!!!!

MD Anderson Houston-a great place for eliminating cancer.

Ron

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_Paul_'s picture
Replies 14
Last reply 6/3/2013 - 10:29am
Replies by: Linny, POW, _Paul_, kpcollins31, Jim M., Anonymous, NYKaren, hbecker

Hi All,

I have been digging around this site and the internet for the last few weeks trying to discover applicable treatment options following my recent local recurrence without much success. The recurrence presented as a small blue nevus in the original excision site. I had a more aggressive re-excision done (approx. 2.5" x 3") on the vertex of my scalp.

My oncologist (who is a melanoma specialist, Dr. Kim Margolin at SCCA here in Seattle) pretty much thinks I should watch and wait. I already completed the treatments of one clinical trial at Hopkins for their GVAX vaccine (it was disappointing that it recurred and makes me think that the treatment was unsuccessful).

I am hoping to draw on the amazing collective wisdom and knowledge of this site to find out what if any other treatment options are available. I don’t like to watch and wait, I want to be more proactive! So specifically, I am NED, 3c (according to my oncologist—because of the recurrence), and have not been tested for BRAF. I have looking over applicable clinical trials, but they all pretty much require evident disease, not NED.

Thanks in advance! – Paul.

To exist is beyond fantastic.

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becky62's picture
Replies 5
Last reply 5/27/2013 - 8:39pm

I had "thing" on my upper calf that started as a small bump under my skin in late 2011.  Mentioned it to my PCP in spring 2012 and she said that it looked like a cyst and gave me cards for a plastic surgeon and a general surgeon.  Perfectly round, didn't hurt, didn't bother me at all.  Didn't do anything about it and it slowly grew.  Finally decided in Jan. 2013 to go get this "thing" removed after my 14 year old son said it was ugly.  Went to the general surgeon and he looked at it and said it could be a cyst or a collection of clogged varicose veins.  Had it removed on March 7th and after surgery he still said it looked like varicose veins.  Went back a week later and he said the pathaology report said it had melanoma cells in it and it was being sent to the Cleveland Clinic to have it looked at.  Went back the next week and he handed me the report and the diagnosis said metastatic melanoma. This "thing" measeured 3 x 4 x 5 cm.

I got in within a week to see a plastic surgeon, dermatologist, and oncologist at the Cleveland Clinic all on the same day.  Met with the surgeon first and he ordered the Pet/MRI scans and the plan was if the scans were clear then he would go back into my leg and do a radical surgery to make sure the margins were clear.  Dermatologist looked me over and I had nothing suspicious.  Oncologist explained the types of tx. available, but it all depended on what the scans said.  Over the next two weeks I had the PET scan(which my insurance company denied initially, until the surgeon called them to explain why I needed it.  Just fyi, don't take no for an answer with the insurance companies), and the MRI.  MRi came back clear, but the PET scan showed a 1cm nodule in my right lung and a few subcutaneous nodules.  Diagnosis Stage IV with unknown primary.  Oncologist strongly suggested the Yervoy tx. but wanted me to take a few days to make sure I was 100% on board with it and he also suggested a second opinion.  There would be no surgery on my leg. 

I've had two infusions of the Yervoy and I go tomorrow to have a CAT scan, labs, and hopefully find out the BRAF results.  My side effects of the Yervoy have been tiredness and some diarreha.  My questions are:

Is it too soon to have the scan done after only 2 tx's of the Yervoy?

Does it normally take a couple of months for the BRAF results?

What else should the original biopsy be tested for?

I'm already looking ahead to clinical trials and my oncologist said the University of Pittsburgh has a good program.  I'm going to bring up Johns Hopkins tomorrow too.  What do you all think?

Has anyone gotten help  with the Bristol Myers program for coapys for the Yervoy?

I've been stalking this board for 2 months and after reading Alana's post, I wanted to share my story. This whole experience has really thrown me for a loop.  I'm a pretty healthy person and never had surgery other than a c-section.  I still believe I am in some denial after nearly 3 months of this, but I firmly believe you have to be your own best advocate and educate yourself,  I read these posts every day and get inspired by peoples stories and have learned so much.  Thanks to all!

 

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I was just "diagnosed" with Stage IV Melanoma from a pathology report. I had what I believed to be a small wart on my inner ankle about two years ago. Within the last 6-7 months it grew to a size of 2 1/4" x 2 1/2". There was no discoloration but it had the appearance of a mushroom. It was approximately 1/2" above the skin, almost perfectly round but the edges of the tumor were not attached to my skin but it had an inner stalk similar to a mushroom. My primary examined it and was certain it was a skin cancer but not sure what kind. She referred me to a skin specialist who upon immediate examination was dumbfounded by the appearance but concerned with my medical history. I am a 40-year-old female. I was born with benign tumors on my tongue. They would surgically remove them and eventually they would grow back- always benign however. I have had three major back surgeries. I just battled thyroid cancer in March of 2012 and currently cancer free in regards to that, I just have to take Synthroid for the rest of my life. I was diagnosed with fibrocystic disease of the breasts, I have cysts on my kidney, the pineal gland in my brain, my cervix and my sinus cavity.

Last Monday I returned to my skin doctor to have the stitches removed and receive the biopsy results. It was just myself and my 2-year-old grandson. As soon as he walked in the room I knew it was bad. He was looking down and shaking his head with my file in hand. He told me it is the worst cancer they have seen in years and it looks very bad. I asked if I was going to die and he said, "very likely." He told me that the pathologist called him immediately upon examining the tumor and surrounding tissue. I asked what it was and he said, "Stage IV Melanoma." He said the entire sample which was almost 3" x 3" was nothing but cancer cells, so it is much deeper than the amount he took.

He set me up with a team of oncologists at Johns Hopkins University. I was very skeptical on how the doctor could stage me just from a biopsy report. So I asked the doctor from Hopkins how he could stage me from just a pathology report and she told me it was the depth of the cancer cells in the tumor and tissue. Because the entire sample in regards to the size of the tumor removed was nothing but cancer cells they can be fairly accurate to give an appropriate stage.

I am scheduled June 4th for my first consult with the oncologist at Hopkins. He will review my medical history, the pathology report, what their plan will be and what I can expect. Then they will schedule my first surgery to remove more of the cancerous tissue and re-biopsy it as kind of like a second opinion, just to be sure they are certain of what they're dealing with. Then from there many more tests, procedures and surgeries will follow.

Of course, its only been a week since receiving the news and I'm still trying to cope. ompletely devastated and scared. I just don't understand how they can stage a cancer from a biopsy/pathology report?

I know I will be in the best of care at Johns Hopkins being its one of the top hospitals in the world dealing with cancer and serious diseases but can they stage melanoma from a pathology report from a biopsy? Its a nodular melanoma.

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/26/2013 - 4:26pm
Replies by: MattF, BrianP

im a female 38 yrs old. feb i had melanoma removed from upper arm and also a lymph node which came back with microscopic melanoma. i am doing watch and wait but in the last 2 months i have lost 12 pound, i have bad night sweats, and have developed 2 new marks on face. i went to dermatologist for first time last week and i was told the marks r old age spots!!! NO one in my family has these and they popped up one day without warning. it is blackish-brown in color, flacky , and if i rub it to hard it will bleed. what do i do to get someone to test it so my mind is at ease. i have been to 4 different drs in the last 3 weeks and no one will do anything about it. 

 

i am really questioning rather i picked the wrong drs.??? i live in central Pennsylvania if there is anyone who can suggest a good oncologist and a good dermatologist.

One more question i have....what does it mean to have alot of pigment fragmentation in ur lymph node??? mine that was removed had alot!

Thanks for all ur help!!

                                                                                                                        

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MattF's picture
Replies 4
Last reply 5/26/2013 - 12:51am
Replies by: MattF, Cindy VT, POW

I really appreciate all the help last week.

Just a little update. 13 May i feel "full" in right chest/armpit for the first time. Last monday 20 May when i went to Oncologist i had a small almond shaped change under my right armpit...could not see it with naked eye...but i could feel the contour chnge. he could not feel anything and the Targeted/Limited Ultrasound ( done at point of patient complaint) showed one node 1.8x1.5 node...all well and good. He spent about 8 min with me and ultrasound results were given to me at ultrasound location.

It is now Sat ...still same contour changes...red little bumps under my arm and

when I lower my arm I have what looks like a bit bigger than 1/4  to a 1/2 of a tennis ball lump that pushes out of my chest wall under my right arm..pushing skin/flesh both out the front of the armpit toward brest and even more out the back of the armpit. onto my back

It is noticable to the naked eye..actually it is almost noticable through a shirt. Is this progressing?

It may have been like that last weekend and even on monday...i felt full but always was examining and being examined with my arm up so the lump kind of pulls back inside the pit.

Anyway i have never had anything like this in 40+ years...and if i was just a standard person i would not even think about it and probably let it go for months. 

i will probably let it go for a few weeks before I go see a doc...I just don't like being herded through and told not to worry about it.

Anybody seen, have or have knowledge of the kind of thing in armpit I'm describing?

Thoughts etc.

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Hello again,

 

So my husband's stress test is next tuesday, his lymphnode surgery to remove all on the right side is 6/6 at Moffit, then the lung surgery is 6/20 at Moffit.  He is over the top with stress and I am keeping calm in front of him.   It is so overwhelming for him to go through, but there isn't a real alternative at this point.   Help me understand what to expect, and how to help him prepare.  We started walking today, a little to get his stamina up again, I am guessing low carb, high protein diet would be best.  Please let me know what you know from your experience.

 

Thanks, Mary

Hugs to all, patients and care givers.

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Replies by: LibbyinVA, Anonymous, Skimbro000, Wolverine

My daughter, 28, had a mole removed in January 2013 that was diagnosed as melanoma in situ. Referred to melanoma specialist at Duke - mole was removed with clear margins. Several weeks later she had 7 more removed - all came by atypical but no cancer. Early April she noticed 3 small lumps on her shin. One of them started to get bigger so she went to specialist yesterday and doctor did a biopsy. As one can imagine, I a scared out of my mind. I'd appreciate any thoughts (and prayers).

Susan

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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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