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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awillett1991's picture
Replies 10
Last reply 4/18/2013 - 11:49pm

After almost a year on/off Zel I'm off again, having failed it definitely once, I think twice, and also Ipi. CT was clear, 2 brain mets are stable after SRS in Nov with one showing 1 mm edema they "think" UGH!! Cardiac tumor is thriving again but blessed to feel good, have normal heart function, and no growth into the heart muscle still, after a year. Also blessed to have an opening into Merck PD1 trial if I can qualify. Fingers crossed, prayers going up, I will be a lab rat hooked up to a drip, 3 weeks from now. Have another brain MRI next wk which must be stable. Every day is a gift!!

Amy

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DianaB's picture
Replies 4
Last reply 4/16/2013 - 10:14pm
Replies by: Charlie S, Janner, DianaB

Hi,

My 25-year old daughter who has a history of tanning and tanning booths, went in approximately one year ago to have a new mole on the back of her calf checked. The Dr. said it didn't need to be biopsied after viewing it through a lens.
Several weeks ago, which is one year later, she decided to have it looked at again by a different Dr., as it was changing. It was growing and had a ring around it. Unfortunately, the Dr. she saw is 83 years old and according to the Pathology report, he botched the shave biopsy.
The report reads, Diagnosis - Portion of Melanocytic Neoplasm with Unusual Features. Note: I cannot render a precise diagnosis as the biopsy is extremely superficial and narrow and important characteristics such as overall breadth and symmetry cannot be identified. I slightly favor these changes represent an irritated and unusual nevus. Nevertheless, there is confluence of junctional melanocytes and a portion of a melanoma could produce such findings. Given this, I recommend the lesion be excised in its entirety to evaluate important characteristics such as overall symmetry, breadth and other morphologic characteristics of the melanocytic neoplasm. Drs. xxxx and xxxx agree.
Microscopic Description: Sections contain a narrow and superficial shave biopsy. There is a proliferation of melanocytes at the dermal-epidermal junction which is slightly confluent. There are nests of similar-appearing cells in the underlying dermis where there is stromal alteration including fibrosis. Cytologically the melanocytes and nevus cells contain slight nuclear hyperchromasia.
Obviously, I am just sick about this. She has an appointment with yet another Dr. tomorrow to have the 2nd recommended biopsy done. Can anyone help me interpret this pathology report? Thanks so much, Diana

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_Paul_'s picture
Replies 3
Last reply 4/17/2013 - 10:42am
Replies by: _Paul_, hbecker, Janner

After less than a year and completing the GVAX clinical trial at Hopkins my melanoma came back. It recurred at the site of the primary. I have a hopefully better surgeon lined up this time to performt the WLE at the apex of my scalp. He plans to do a skin graft from the get go, unlike the first time around when I was sent home with an open wound, torn apart sutures and all.

I just had a full set of scans done last week, and thank God there is no other evidence of disease. My oncologist said I "dodged a bullet".

I have a question for all you knowledgeable warriors about staging. According to my doc I have been upgraded from a 3a to the a 3c because of the recurrence. But I don't think that is technically correct. According to www.cancer.org on Stage III:

 

One of the following applies:

T1b to T4b, N1b or N2b, M0: The melanoma can be of any thickness and is ulcerated. It has spread to 1 to 3 lymph nodes near the affected skin area. The nodes are enlarged because of the melanoma. There is no distant spread.

T1b to T4b, N2c, M0: The melanoma can be of any thickness and is ulcerated. It has spread to small areas of nearby skin or lymphatic channels around the original tumor, but the nodes do not contain melanoma. There is no distant spread.

Any T, N3, M0: The melanoma can be of any thickness and may or may not be ulcerated. It has spread to 4 or more nearby lymph nodes, OR to nearby lymph nodes that are clumped together, OR it has spread to nearby skin or lymphatic channels around the original tumor and to nearby lymph nodes. The nodes are enlarged because of the melanoma. There is no distant spread.

The first two cases don't apply because my primary was not ulcerated. It would not appeat the last case applies as well since my nodes are *not* enlarged because of the melanoma. When my SNB was performed all that was found was a micromet in one node, hence the original diagnosis of 3a. Do you think I am a 3c or not?

Thanks - Paul

To exist is beyond fantastic.

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juless1's picture
Replies 11
Last reply 4/18/2013 - 3:20pm
Replies by: Anonymous, audgator, juless1, kylez, MaryD, Janner, Tim--MRF

Being new to the board...and new to the horrible world of melanoma....I read with interest the various posts...

But I have to say....a majority of it is like another language!  Abbreviations, treatments...etc etc....

I find myself going to another screen and googling what things mean!  Need a glossary of melanoma talk..

and I thought I was confused before....yikes!

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juless1's picture
Replies 0

Being new to the board...and new to the horrible world of melanoma....I read with interest the various posts...

But I have to say....a majority of it is like another language!  Abbreviations, treatments...etc etc....

I find myself going to another screen and googling what things mean!  Need a glossary of melanoma talk..

and I thought I was confused before....yikes!

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randallgford's picture
Replies 7
Last reply 4/17/2013 - 9:46pm

My husband is on day 10 of 15 days of WBR for brain mets. He is stage 4 with several mets to lung, many on abdmonmen, two small ones on liver, and 14 small on brain. He started Yervoy, has done two infusions. No real side effects, worked daily, ate well, no symptoms beside cough,  no weight loss.

Since WBR he is a different person. No appetite, lost 20+ lbs in two weeks (even tho he is eating, albeit not as much) exhausted , extremely weak.

It is scary, he was thin to begin with. We saw Onc a week ago and see him again tomorrow after repeat of chest/and CT today due to more coughing to see

what is happening.  He is pale, has black bruises not healing, he has just gone down so far so fast. Is it possible its the radiation and he will

bounce back. . PS. Onc started him on zelboraf last tuesday after finding out he is braf positive, but wants to assess tumors, i think to see if he

will go back to Yervoy or not.I know i will find out more tomorrow but I am always curious for other comments from this community

 

Thanks, Vicki

Never give up!

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I'm just off a successful VATS Lobectomy to remove a 2.5 cm lesion from my left lung.

Scan 5 months ago showed that lesion and nothing else, so I'm NED as far as that goes now.

Heading to Cancer Center today for post-surgery follow up.  I know that now that I'm stage iv that more treatment options are available.  Have any folks done anything adjuvant when they're ned at stage iv, or do treatments like ipi etc only become reactionary?

My photography: http://jeffreyswansonphotography.com/

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Colleen66's picture
Replies 2
Last reply 4/15/2013 - 4:31pm
Replies by: Colleen66, Janner

As I understand it, LDH is an indicator of possible activity? Of cancer with a high LDH being the indicator.  Please correct me if I'm not understanding this correctly.  My high reading of 218 came when I was doing the high dose interferon, I could only tolerate 3 weeks and stopped all treatment.   So 1/2/13, it was 218.  Next reading on 1/8/13 was 150, next on 1/22/13 was 120.  Last one on 4/9/13 now low at 89.

The information I found on "low" LDH was that it is a genetic condition.  I'm assuming this does not apply in my case.  So I'm wondering if anyone is knowledgeable on this or has some insight. 

Thank you for any help.

Colleen 

Live!

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Erinlisay38's picture
Replies 10
Last reply 4/16/2013 - 1:08am

Hi I'm on bms pd1 trial in Boston just had my first 8 week scan and its pretty bad news all tumors have progressed and new tumors have popped up ;( I had to sign a new consent to stay on the trial even tho I know the tumors have all grown but I only can get 2 more treatments then another scan in 6 weeks if tumors continue to grow I'm off the trial Not sure what's next for me as i have already failed yervoy. I am trying to stay positive but it's getting harder and harder as I feel I have failed 2 of the best treatments out there ... Scared

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casagrayson's picture
Replies 5
Last reply 4/15/2013 - 5:20pm
Replies by: Anonymous, jim Breitfeller, Bubbles, casagrayson, Janner

I have a friend who was just diagnosed with Stage IV melanoma (mets to liver, spleen and lungs).  He just got back from MD Anderson and will return in ten days to start treatments.  He is overwhelmed (obviously) with all the information he has been given, and the different drug regimens that they are considering.  He did say that Yervoy is one they are definitely starting him on.  He also said that they are suggesting interferon, maybe combined with some other drugs?  He didn't mention Zelboraf, but I am sending him a link to an article about it.

Can someone point me to an study that shows that interferon does not prolong survival rates?  I know there has been discussion here on the board, but I'm having trouble putting my finger on a journal article.

In other news, my husband, who is Stage I, has not been feeling at all well.  They have looked at his heart (echo and stress test) and his blood sugars (normal), but now we think it could be anemia.  The general fatigue, dizziness, cloudy thinking, and tingling  hands and feet have me worried.  He will see his doctor next week and maybe we will find that it is nothing to be overly concerned about.  Once melanoma has become a part of your life, it seems no symptom can be dismissed as "nothing".  :(

 

Susan

Strength and Courage,

Susan

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Anonymous's picture
Replies 7
Last reply 4/15/2013 - 7:51am
Replies by: Anonymous

Has anyone ever gone to this clinic?  It sounds like a mix of standard protocol with alternative treatment.

http://www.neoplas.org/id7.html

 

If so, share your experience please. 

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I love to ride my bike and hike...again. I cover myself, put on SP 70, but come back sunburned in the face, and my nose skin peels like a snake. What gives? I do live at almost 7,000 feet in Colorado with more UVs, but still this didn't happen before to this extent.

The history of the world is the battle between superstition and intelligence.

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Bunmom's picture
Replies 4
Last reply 4/14/2013 - 1:15pm
Replies by: vivian, akls, DebbieH, Linny

I'm 8 days post-op and my JP Drain is still draining quite a bit--more than 100 ml/day. I have an appointment Monday and thought I'd get it out then but now I'm thinking I won't. If you had this surgery, how long did you have the drain? 

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Janner's picture
Replies 19
Last reply 4/16/2013 - 12:25pm

Since this site is a little skewed towards those actively fighting disease and the newly diagnosed, I think it's a good idea to post anniversaries like this to help give a bit of perspective.  21 years ago, I had a stage IA lesion removed.  .58mm/Clark II/ 1 mitosis.  In today's staging, that is now stage IB.  Since then, it's been determined that I have a genetic defect that gave me a 76% lifetime risk of melanoma.  I've also had two other primaries (in situ, .88mm/Clark III/ 1 mitosis) removed 12 and 11 years ago respectively.  But I'm still here, still NED 21 years later.  I was 29 when originally diagnosed and you can do the math but I'm a little older now.  It's hard to remember life prior to melanoma - melanoma is a part of who I am and what I do now.  But I refuse to let melanoma define me and conquer me!

Best wishes to all with this disease!

Janner

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mark d's picture
Replies 9
Last reply 4/17/2013 - 11:53am
Replies by: Mandi0280, mark d, DebbieH, Gene_S, washoegal, Anonymous

I had... Key word HAD and keeping it that way.. I believe the best is to have a positive outlook.. I know I won't live for ever but the time I do have is going to be enjoyable. I had a nodular melanoma on my earlobe with one sentinel positive. I had a wide excision with 21 nodes taken out all negative.. I will be starting interferon in a month or so as protocol. I know everyone is different and different situations but the best cure is POSITIVITY up until the end whenever that may be.. I blew threw the greif phases and figured that every day life is a 50/50 chance.. Hell, Korea might get me before the cancer.. HA! In your face cancer!!!. Everyone who has this nasty keep rolling thru life and enjoy it no matter how difficult it may get.. Everyone who has lost someone, enjoy what you had with them and their eternal memories.. To everyone thank you all for your ongoing info and support to each other.. We all ROCK!!!!!

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