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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Eugenia's picture
Replies 4
Last reply 5/13/2011 - 11:40pm

OK, from the beginning.  My SIL had a shave biopsy of a lesion on her lower left leg.  Lesion had been slowly growing and developed some tiny black spots, but had not bled or seeped anything except for once when she caught it with her razor.  The pathology came back as:

"Comment:  It is not known if this is a biopsy of a larger lesion or an excisional biopsy.  Due to small size, fragmentation and orientation, the margins cannot be adequately evaluated.

Skin, Left Leg Lesion:  Received and labeled “lesion L leg,” is a .2 cm portion of dark brown-gray tissue that is submitted as received along with a smaller minute fragment.

Clinical info or preop diag:  None given

Microscopic Description:  The sections consist of levels of two tiny fragments of skin with a melanocytic lesion.  There is a lentigenous melanocytic proliferation;  focally the melanocytic cells are seen in the superficial portions of the epidermis.  Cytologic atypia is mild to moderate.  No mitoses are seen.  A few lymphocytes are seen in the underlying dermis.  Fragmentation and orientation preclude evaluation of the margins."

This report came back roughly 8 days after the biopsy.  Two days later, my SIL went to GP to get copy of the path report and ask for a referral to an oncologist with experience with melanoma.  By this time, she had developed an infection in the wound left from the shave biopsy.

Two days later, she is in the oncologist's office and he tells her that because of the path results and her age (47ish), they will plan to do a WLE and SNL biopsy.  He sends her upstairs to a surgeon who performs a complete excision of the lesion with "good" margins--that is how the doctor described it at the time of the bx.

Today, five days after the complete excision, she received this pathology report:

"Pathologic Diagnosis:

Skin lesion, left posterior cuff, excision:

1.  No diagnostic features of malignancy is identified (please see microscopic description).

2.  Ulceration, granulation tissue formation, intense chronic, acute inflammation, focal giant cell foreign body reactions, and reactive/reparative epidermal tissue changes.

3.  Surgical resection margins are evaluated, showing benign tissues.  LL/mv

Tissues:

1. LEFT LEG - MELANOMA LEFT POSTERIOR CALF

Clinical History:

Melanoma L posterior calf S/P shave bx.

Gross Description:

Received in formalin, labeled with the patient's corresponding requisition number, with accompanying requisition labeled "melanoma L posterior calf", is a pale tan, hairbearing, rubbery, wrinkled skin ellipse with overall dimensions of 2.5 x .7 x .5 cm.  On the skin's surface is a tan-brown to dark grey irregular area with overall dimensions of 7 x 7 mm.  Black ink is applied to the margin and the specimen is multiply cross-sectioned.  (1A - C - toto on edge for LX2) KLL/rkm

Microscopic Description:

Microscopic examination performed.  Sections show no diagnostic features of malignancy.  No in situ or invasive melanoma is identified.  Focal deep ulceration, granulation tissue formation, intense chronic and acute dermal inflammation are noted, at the presumptive previous biopsy site.  Giant cell foreign body reactions are present. Subjacent tissue showed reactive/reparative squamous epithelial changes.  Surgical resection margins are evaluated, showing benign tissues.  Further well-controlled immunohistochemical stain (1C) showed that the reactive epidermal tissue and skin adnexal epithelial tissues are positive for pancytokeratin, with S-100 protein and MART-1 negative for in situ or invasive melanoma.

The immunoperoxides stain was developed and its performance characteristics determined by the Pathology Department at Wesley Medical Center, Wichita, Kansas.  It has not been cleared or approved by the U.S. Food and Drug Administration."

When the doc gave her these results today, he insisted that she still needs to do the WLE and SNL bx.  Am I missing something?  Do you suppose they are worried that the shave biopsy might have sent melanome cells into the lymphatic system?  It seems to me that the SNL bx is a very aggressive decision.  Any advice and help with deciphering the report are greatly appreciated!!

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Anonymous's picture
Anonymous
Replies 0

i went to the dermatologist Monday 5/8/11 and they called today and told me the biopsy they did came back melanoma. they are sending me to specialist in birmingham, al but it is going to be june 2nd before they can they get me in. i just wanted to know if this is normal or if this is to long to wait to see specialist. just don't know how i can take waiting this long to know something.

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annabanna's picture
Replies 0

i went to the dermatologist Monday 5/8/11 and they called today and told me the biopsy they did came back melanoma. they are sending me to specialist in birmingham, al but it is going to be june 2nd before they can they get me in. i just wanted to know if this is normal or if this is to long to wait to see specialist. just don't know how i can take waiting this long to know something.

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dgkendall's picture
Replies 3
Last reply 5/13/2011 - 8:43pm
Replies by: dgkendall, W.

My wife started E7080 on May 2nd and seems to be developing more adverse symptoms on a daily basis. Considering stopping. Has severe stomach pain, dizzy, can't eat much, very tired and sleeps a lot, loosing weight. Have others experienced this and what did you do?

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Anonymous's picture
Anonymous
Replies 12
Last reply 5/13/2011 - 8:30pm

All, this information is taken from Amy's Facebook page -  Please continue to keep her and her family in your prayers.

 

Sunday May 8 -

Update... Amy is still fighting everyday. She is in a lot of pain but with frequent med changes she is able to manage. She is trying to enjoy this time with her family and friends. She wanted me to express her deepest apologies for being so far behind on personal emails and msgs and promises to get back soon. Amy sends her love and thanks to all.

 

Wednesday May 11 -

Update-- Amy is still fighting her pain is very high, but the hospice nurses are working around the clock to keep her comfortable and to try to help her get some rest. Her blood pressure has been low and her pulse high. She is "keeping her spirits up" and keeping us on our toes. Thank you all for your prayers and suppourt. 

Update-- Amy is still fighting her pain is very high, but the hospice nurses are working around the clock to keep her comfortable and to try to help her get some rest. Her blood pressure has been low and her pulse high. She is "keeping her spirits up" and keeping us on our toes. Thank you all for your prayers and suppourt. 
 

 

 

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dian in spokane's picture
Replies 1
Last reply 5/13/2011 - 7:47pm
Replies by: carol b

I've been out of town for a couple of weeks, but I am back!

I'll be hanging in the chat room tonight, at around 4 pm pacific, and again tomorrow at 8 am pacific time.

Please feel free to come on in if you are a new patient who has questions or would just like to talk to someone else who understands the whole melanoma experience.

You oldtimers drop in too!

 

dian in spokane

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MMarieMetcalfe's picture
Replies 6
Last reply 5/13/2011 - 6:49pm

I just had surgery on 4/12/2011.  I had a tumor sized at 4.5mm, that was removed from the upper back/right shoulder.  My scar is pretty huge.  It is about 7 inches long.  I wasn't expecting that.  I just had the remainder of my stitches removed, but there is a lot of tension and sleeping is rough.  I want to know if there is an alternate than pain medication.  I start the Interferon on 5/23/2011, and I am still trying to wrap my head around that too.  I was also diagnosed in March with Fatty Liver Disease, and I know there are some health issues with the Interferon.  My doctor seems to think it is okay, but it still makes me nervous.  Any words of wisdom?  Thanks...

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thebunches's picture
Replies 1
Last reply 5/13/2011 - 6:07pm
Replies by: washoegal

My husband had his first WLE and SNB surgery (combined) this past Tuesday. The WLE incision is MASSIVE...it looks to be approximately 9-10 inches across his abdomen, in an "S" shape. The SNB is about 3 inches and is a "hernia" incision, whatever that means.

My hubby is a professional bodybuilder...I'm wondering if he will ever be able to go back and do what he loves, and actually maybe be a contender even with a huge scar in plain sight.

Now we wait the 14 days until the biopsy results come in... supposedly they are being read by the "best in the world" person at Moffitt in Tampa. Oh this wait is going to kill us. Any suggestions on how to get through waiting to find out "how bad the cancer is"? He has never been a patient man.

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jimjoeb's picture
Replies 5
Last reply 5/13/2011 - 6:02pm
Replies by: MMarieMetcalfe, Anonymous, jimjoeb

I received the first pathology report following my WLE and SLNB of three lymph nodes. The first report says that the provisional diagnositc all is negative. Yeah!!

However, it also says that results of immunostains and step sections pending. I expect those results in a few days. Am I right to understand that there is still a possibility of something showing up or they wouldn't bother with the immunostains and step sections?

Be Not Afraid-God is with you always Stage IIIa

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Leigh's picture
Replies 5
Last reply 5/13/2011 - 11:43am

Hi,

I was diagnosed in December last year at the beginning of a southern hemisphere summer.  A week before we had decided to move to Queensland - melanoma capital of the world.  We used to live there for a couple of years and have some (very) extended family there.  We were really looking forward to this move as it was hopefully going to bridge a gap between our families and my husband is extremely keen to move back to his homeland.  But after the diagnosis, a number of scares, and a summer spent avoiding the outside during the daytime, we decided we should not go.  We are now having second thoughts as we enter a cool winter and we were looking forward to finding some middle ground for us both in terms of where we live and of course they have a great (summery) lifestyle.  (I would actually be happy staying put but we are living in my hometown and although my husband says he is happy here I believe he hasn't settled and wants to move back).

I just dont know if this would be a completely ridiculous move.  On the one hand I think - are you crazy moving to melanoma central, on the other I think well at least I know I should protect myself and how to do this.  My kids are fair too.  Is it possible to live in a warmer climate with melanoma?  (especially with kids who are still only 3y and a baby and will obviously be running around and not willing to wear too much clothing).

I'm not sure if melanoma is caused by burns in childhood primarily or is it actually the amount of UV exposure that plays an important part (obviously I would be absolutely certain to avoid any burns in the girls).

Thanks for your thoughts if you have got this far, I'm not sure if this is a great place to write this but I cant think where else to get advice/opinions.

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TracyLee's picture
Replies 5
Last reply 5/13/2011 - 6:26am

Second opinion consult on Tuesday in Philly at U of Penn.

Since seeing radiation oncologist on Friday, I've popped another node in my neck, right behind the still healing incision site from April 11th surgery.

Now being advised to:

NOT do radiation

NOT allow more surgery

Begin Ipi (Yervoy) every 3 weeks x 4 rounds, then possibly do radiation

Tons of appointments between now and next Wednesday. I do work 40 hours a week, in between appointments! (Blessed with a wonderful boss and co-workers, but the guilt.....ugh)

Mine is Stage III, bordering on IV - scalp & neck

Thoughts?!

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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petie540's picture
Replies 3
Last reply 5/12/2011 - 9:17pm
Replies by: petie540, Anonymous, KatyWI

Has anybody who has been diagnosed as stage 1V been treated only with temodar after the initial diagnosis was elevated to stage 1V?On8/10 after a 11B dx. on 3/09 with only observation I was started on temodar 140mg.for 42 day cycles and 14 days off. Now in cycle 5 and have been so far NED.Next cat/pet is in June then might go off all meds at that time .We will see then. Thanks.And by the way I want to thank the board for the kind responses to my previous post about waiting. That night I let my emotions get the best of me.

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JennerFromIowa's picture
Replies 4
Last reply 5/12/2011 - 8:54pm
Replies by: JennerFromIowa, Fen

Does anyone know of a melanoma walk/run in Iowa?  Have been trying to find one for quite awhile but no luck.  I would have thought Des Moines would have one but haven't found one there either.  Thanks!

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stanscott's picture
Replies 4
Last reply 5/12/2011 - 6:29pm

Just wanted to let everyone know my thoughts are with you. I have been off the page for quite a while. My health totally fell apart with a minor surgery on Oct 7, 08 leaving me bed ridden for a time, but things have improved and life is moving again. Just want to say I'm alive and say hi.

stan

Music is the river that navigates history.

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Lisa13's picture
Replies 2
Last reply 5/12/2011 - 6:00pm
Replies by: Carol Taylor, ShariC

Met with my oncologist yesterday after being kicked off the ipi trial for suspicious activity in lungs. He said my CT scan showed 20 spots, but told me yesterday he feels there's only 2 that look suspicioius and may be melanoma.  That being said, we'll re-scan in 3 weeks to see if any of these spots have changed.  I can only hope that they have either disappeared or havn't changed in anyway.  Since I just had surgery and lymph node dissection 2.5 months ago, I really don't want to progress to Stage 4 so quickly cause that would say alot about my melanoma.

Anyway, if there is change, we're going with decarbazine. I've been pumping my body full of so many holistic supplements for the past 3 months, so I really hope my own immune system will remove whatever is in my lungs.  I hope like many of you, these spots won't change and I can go on feeling a bitt better about things until the next round of scans. 

Keeping the faith.

Lisa

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

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