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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FormerCaregiver's picture
Replies 13
Last reply 5/15/2011 - 10:57am

If you were newly diagnosed today and your oncologist recommended interferon treatment but didn't
say much about the alternatives, what would you say?

Thanks for any opinions that you may have.

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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Vermont_Donna's picture
Replies 26
Last reply 5/15/2011 - 10:11am

Hi everyone,

I had my 12 week checkup including a PET/CT scan, labs and melanoma oncology checkup today. My PET/CT scan is completely clear of the hot spots from three months ago, except from where I have 11 month old poorly healing wider excision wounds on my lower calf. All other suspicious hot spots are now gone. My melanoma oncologist has declared me a complete responder to Ipi and I will NOT have further Ipi trreatments, unless I notice a re-occurence or it shows up on my next PET/CT scan, scheduled for 12 weeks from now. The clinical trial coordinator had thought a few weeks ago that I would receive another four infusions but now that Ipi is FDA approved the trial I was in is closed, so no more doses per the trial protocol. I am fine with this.

I am hoping that all others who are on Ipi have as complete as response as I have!

Vermont_Donna, stage 3a, NED x 3 months

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Replies by: shellebrownies

My husband was given this as a trial option on May 6th; now I cannot find anything about this trial on ClinicalTrials.gov or Cancer.gov. Is it possible this is closed?

Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Terra's picture
Replies 6
Last reply 5/14/2011 - 4:59pm

Our onc is suggesting TIL or IPI.  I know about ipi but not TIL:

All I know is they take out a metasis and immune cells grow them and put them back in his body to fight - is this correct?  Also, do they provide chemo while taking out his immune system and how long will this take and how will he feel with  no immune system and chemo - we are trying to possibly get them to do the surgery - freeze and then have derek take ipi and if not work return for til treatment - onc thinks that this is promising - please explain about til trt - thank-you. 

 

Really need to make a decision b/c our third abbay is due in 3-4 weeks.  Thanks in advance for your help.\

terra

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annabanna's picture
Replies 7
Last reply 5/14/2011 - 3:27pm

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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Hi Jim,

 

Wondering how you are doing since you have not posted lately. Hope things are well with you.

 

Douglas

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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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