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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Ericka's picture
Replies 12
Last reply 11/3/2010 - 9:28pm

Hi Everyone,

I am new to the board.  My husband was just diagnosed with Stage IV about a week ago.  He is young (35) so this comes as a huge shock, which I'm sure it is a shock no matter what age.  We were told by the dermatologist and have not seen an oncologist yet.  That appointment is in 2 days.  Basically we were not given much information, and were told to research online.  So far I have not seen much good from what I have read.  We are kind of in the dark and do not know what to expect.  I'm really scared and not sure how to react.  I don't know what to say, what questions to ask, or what to do from here.  I guess I need some advice or encouraging words if anyone has them to give. 

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jolainajo's picture
Replies 5
Last reply 11/4/2010 - 7:49am

Hi everyone, I started my trial with Ipi, no temodor though, on Friday the 29th. Yesterday and today I am noticing my subcutaneous tumors which are large are getting larger and very very soar sometimes throbbing and hot. Is this normal?? Other side effects are just tired, Has anyone else had this?? Need some answers.. Thanks... Jolaina, Michigan

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mcallan's picture
Replies 2
Last reply 11/3/2010 - 9:24am
Replies by: mcallan, jolainajo

A little back ground - Stage three mel. Male 52yrs. Original date Jan/07left groin, localized reoccurence May/09. Completely lymphandectomy June/09

I have been on the Anti-CTLA4 trial since Oct/09. For the last couple of months, I have had this "feeling" under my right breast where I would find myself holding the area but never felt a lump or anything. I had my last clinical day/treatment at the end of this Oct. at which time I reported that I had felt small lumps under my left arm/breast area.

Onocologist said, "it could be the ippy, so we best watch it". (I don't see him for another 3 months and he is 700km away)

two weeks after seeing him, this large lump came up below my right breast (area I was holding) it came up over 2-4 days. I waited a week because I thought it could be something else (maybe being optimistic:)) then saw my dr who arranged for an ultrasound...that ball is rolling but slowly.

 

What I want to know is if anyone else on ippy has has swelling in the breast area? My lump is not hurting but now (week later) I have a very sore spot to the left of my nipple and when I breath it becomes more pronnouced. More like a big ache. The lump below is very hard.

 

Because of where I live, it only makes sense to wait til the ultrasound and then go from there. I'm just wondering what others have found.

 

Thanks in advance

 

Mike

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Anonymous's picture
Replies 1
Last reply 11/2/2010 - 11:48am
Replies by: Anonymous

E4697: Phase III cooperative group study of yeast-derived granulocyte macrophage colony-stimulating factor (GM-CSF) versus placebo as adjuvant treatment of patients with completely resected stage III-IV melanoma.

This is an ECOG study begun in 2006 to see if SQ GM-CSF is an effective adjuvant treatment in patients with resectable metastatic disease, after surgery. The primary endpoint was overall survival which at the time of the abstract’s writing (updates for ASCO are suggested in the text) was NOT met, meaning that overall the drug was not effective. PFS (progression free survival) was positive statistically but only 3 months difference.

full abstract link:
http://abstract.asco.org/AbstView_74_49374.html

 

I found this entry on a website maintained by Eric Whitman a melanoma expert at Atlantic Melanoma Center:The updated data for this trial was all negative.

E4697: Phase III cooperative group study of yeast-derived granulocyte macrophage colony-stimulating factor (GM-CSF) versus placebo as adjuvant treatment of patients with completely resected stage III-IV melanoma.

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emilypen's picture
Replies 2
Last reply 11/2/2010 - 11:11pm
Replies by: mrsmarilyn, Anonymous

Hi All,

I'm just wondering if anyone on a MEK inhibitor (spefically the GSK MEK if possible) has/had bone mets? and if so did the bone mets respond to the MEK inhibitor any differently than soft tissue tumours?

My husband has only been on the trial for 7 weeks and the soft tissue tumours are causing no pain whatsever ( and they were pressing on nerves before) but the a few of the areas where we know there are bone mets are causing some pain... so we were thinking maybe they take longer to respond?

Just interested in anyone else's experiences.

 

thanks,

Em

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/3/2010 - 2:06am
Replies by: Anonymous

Regular skin check last week, derm is concerned at "new small pink lesion with small fleck of pigment" on my cheek. Biopsy next Monday. Anyone have anything like this show up as mel? I have had two primaries, both thin (in situ and .43).

Thanks. Always nerve-wracking waiting.

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feich's picture
Replies 2
Last reply 11/2/2010 - 2:48pm
Replies by: Tad, bcl

Hello All.

I was very recently diagnosed with melanoma arising in a Spitz Nevus. However, my story is a little confusing, and I am hoping to get some answers that my doctor wasn't able to provide.

I got a slightly itchy mole removed from my back. After removing the mole, I came back in two weeks later to get stitches removed. The doctor said they had to send my results out for a second opinion. The doctor that gave the second opinion said that while the first biopsy had come back negative, an area of my mole he felt was melanoma arising from a spitz nevus. The small, nodular dermal  (slightly more than a millimeter in thickness) had melanocytes that had small uniform nuclei and finely granular pigmented cytoplasm. They formed as confluent collections forming a non maturing module.

The doctor finally concluded that based on the nodular dermal component he cannot defend any diagnosis but a tiny focus of melanoma arising in what appeared to be a pre-existing spitz nevus.

Since this was from a referring pathologist and not my actual doctor, my actual doctor didnt seem to have many answers for me. They scheduled me in for an excision but said it would take 2-3 weeks to get in. He also said they would check the lymph nodes when I went in. I will go nuts waiting 2-3 weeks to get more answers. Im just wondering a few things:

Since they don't definitevely say that I have melanoma, is there a chance this is benign and they are just being cautious? (if so I would rather be safe than sorry)

If I get it excised and it hasn't spread to the lymph nodes, will that take care of it?

Is there a large history of these changing into metastes (sp?) moles over time even if it is excised?

If it has spread, what is the treatment and or prognosis?

Does 2-3 weeks seem like a long time to wait to get in and get this taken care of?

Any help anyone could give me in terms of answers or just clarification, would be extremely helpful. Thank you all for your time.

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Anonymous's picture
Replies 2
Last reply 1/19/2011 - 4:42pm
Replies by: W., amandak

Hello All.

I was very recently diagnosed with melanoma arising in a Spitz Nevus. However, my story is a little confusing, and I am hoping to get some answers that my doctor wasn't able to provide.

I got a slightly itchy mole removed from my back. After removing the mole, I came back in two weeks later to get stitches removed. The doctor said they had to send my results out for a second opinion. The doctor that gave the second opinion said that while the first biopsy had come back negative, an area of my mole he felt was melanoma arising from a spitz nevus. The small, nodular dermal  (slightly more than a millimeter in thickness) had melanocytes that had small uniform nuclei and finely granular pigmented cytoplasm. They formed as confluent collections forming a non maturing module.

The doctor finally concluded that based on the nodular dermal component he cannot defend any diagnosis but a tiny focus of melanoma arising in what appeared to be a pre-existing spitz nevus.

Since this was from a referring pathologist and not my actual doctor, my actual doctor didnt seem to have many answers for me. They scheduled me in for an excision but said it would take 2-3 weeks to get in. He also said they would check the lymph nodes when I went in. I will go nuts waiting 2-3 weeks to get more answers. Im just wondering a few things:

Since they don't definitevely say that I have melanoma, is there a chance this is benign and they are just being cautious? (if so I would rather be safe than sorry)

If I get it excised and it hasn't spread to the lymph nodes, will that take care of it?

Is there a large history of these changing into metastes (sp?) moles over time even if it is excised?

If it has spread, what is the treatment and or prognosis?

Does 2-3 weeks seem like a long time to wait to get in and get this taken care of?

Any help anyone could give me in terms of answers or just clarification, would be extremely helpful. Thank you all for your time. 

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scots's picture
Replies 13
Last reply 11/7/2010 - 9:12am

I was  diagnosed with melanoma after a cycst was removed from the back of my head in September.

Pet/CT -clear, WLE - clear margins, SNB - neg,  melanoma 3.7

My oncologist has suggested interferon(1 month high dose, 11 month low dose) and radiation.  I have an appt. with the radiation oncologist on Thursday to discuss treatment.  I'm suppose to start interferon next Monday.  This has all happened so fast, so many questions.  Has anyone had any experience with goning through both treatments at the same time? or what order you went through both treatments.  After reading about interferon on the bulletin board I'm wondering if I can do both.

 

Thanks

Scot

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Drew N's picture
Replies 6
Last reply 11/1/2010 - 10:47pm
Replies by: jag, Drew N, Anonymous, BethA in VA, Jim in Denver, lhaley

I was diagnosed Stage IV in November 2008 (lymph node right groin), after a malignant mole was removed (May 2006). Everything's been cool since then, but they were watching some spots on my liver... they never changed, but still. MRI a week ago ID'd them as nothing, blood work is good, and Xrays are good.

I told the nurse at MDA that the longer I hold out, the better I feel about a discovery that will give me a chance if there's recurrence. And in the meantime I keep knocking back the curcumin. She agreed (with all of that) and told me there's more and more on the horizon.

Keep the faith, y'all.

 

Drew

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Jim M.'s picture
Replies 14
Last reply 11/6/2010 - 10:10pm

Hi everyone,

 My recent scan two weeks ago came back negative!! Three years ago on 11/1 I had an LND to the right axillary and I've been NED since. I give thanks and praise to God. Miracles are happening every day. I thank so many of you for your guidance, knowledge and support. You are the wind beneath my wings. I thank my wonderful medical team, for their caring, expertise and passion to help others. I don't know where I'd be without my dear wife who loves me through the good times and the rough times. Our 2 children are such a special blessing and they keep me going. My prayers go out to all warriors, caregivers and loved ones.

 God Bless to all,

 Jim M.

Stage 3C

LND (unknown primary)

radiation 6 weeks

Ipilimumab and peptide vaccines: 3/08-10/08

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llmercll's picture
Replies 16
Last reply 5/14/2014 - 4:31pm

I've had a fairly large mole on my back for as long as I could remember, I've never really given it a good look until recently however. Over the past year I've spent a great deal of time in bed on the computer, lying on my back, and one day I noticed my mole was "stinging". I checked it out in the mirror and noticed there was a black spot on the mole, taking up maybe 20% of it. I figured I'd watch it and see how it does before going to a doctor. 

It's been 3 months and I don't think it's grown much, if any, at least not in width. It has a very "mole" like feel to it, and I can move it around a lot with my finger, I don't find it particularly odd except for that black spot. It doesn't sting anymore. If it grew at all over the past 3 months it might have gotten a bit "puffier". Unfortunately melanoma is often multicolored, and thats exactly what the problem is. And nodular melanoma grows in depth, not width, so that scares me too =( 

I tried making a dermatologist appointment but my medicaid requires me to get a referral, and I don't have a primary care doctor. I probably won't get to a dermatologist for another week or two because of this. I know it's critical to get early treatment of melanoma, so this is upsetting me greatly. I'm getting really anxious thinking about cancer, and would like someone to just take a look at at a picture of the mole and let me know what they think. 

http://img209.imageshack.us/img209/3209/dscn2452j.jpg 
http://img502.imageshack.us/img502/9726/dscn2469.jpg 

Also if anyone knows a way for me to get a referral I'd really appreciate that too. 

thanks so much to whoever helps out, I'm hoping for someone knowledgeable to come along and ease my nerves, haha

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Andrew Langsford's picture
Replies 11
Last reply 11/1/2010 - 11:25am

I have had DCIT recommended to me by an oncologist. He said that after 2 doses he can tell whether it is taking effect or not.  Has anyone had this advice, or a good experience with DCIT?  The ipi would be the next thing, but it has come with a warning of drastic side effects to the bowels, anyone experience this?

Thanks for any help and experience.

 

Andrew

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BarbieGirl's picture
Replies 12
Last reply 11/14/2010 - 9:43am

Glenda.  A dear friend.  A fun person.  A true warrior.  One helluva classy lady.   I've missed her every single day, since she left us 4 years ago.  She's been joined by so many others in the last 4 years, I can't even count them all.  I know she's keeping them amused and up-to-date on the goings-on in Heaven! 

I love you my sweet, sweet Glenda.  I know I'll see you again someday....

~Lisa~

 

The first 4 pictures are how I want to remember Glenda.  Please STOP there, unless you want to see the harsh and ugly reality of melasuckanoma.  I took and posted the last pictures at her request..   I didn't identify her in the pictures, but SHE did.   She helped sooo many people here for many years, and even when she was dying, she wanted to help those who were always asking what Sub-Q's were.  Sub-Q's come in all forms, shapes, sizes, and colors.  Glenda's were the worst I've ever seen, and it makes me cry to even post them now.  But I know Glenda wanted people to see and understand how this horrible beast can kill in the form of Sub-Q's.  When I last spoke with Glenda, she told me her organs were clear---it was the Sub-Q's that were killing her---choking off her organs.  Very brave; God bless her soul for sharing with us.  Again, WARNING---these pictures are NOT for the feint of heart.

 

Glenda and "Grumpy" (Dave)...her hubby who joined the angels not too long before Glenda, at the Biltmore in Asheville:

 

Glenda grabbing DT's bootay at the Asheville MPIP Bash:

 

The 'smoking area' at the Michigan MPIP Bash---Glenda, my MamaG, Tim (King's hubby), me and Cigar Bob (Dian in Spokane's hubby):

 

Lady in Red----the last time I saw Glenda, just a couple of months before she passed.  She went to the restroom and came out looking like this..haha!  Still made people laugh even when she knew she didn't have long:

 

WARNING:  VERY GRAPHIC PICTURES BELOW!!!!

 

 

 

 

 

 

 

 

 

 

Sub-Q's on her arms: (NO, that is not her breast.)

 

And on her shoulder, neck, ears.....

 

 

These were HUGE on her stomach... football-sized and just hundreds all together:

 

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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mrsmarilyn's picture
Replies 5
Last reply 11/2/2010 - 11:07pm

Hi!

My brother Gary- who has been on GSK - BRAF 2118436 inhibitor at Sara Cannon - was asked by GSK to speak at their  Philiadelphia HQ - on Friday.  It was a worldwide teleconference - speaking regarding his 60% reduction in 9 months.  They gave him a tour- top secret - and all the researchers were so happy to meet a real live person with such success.

Lots of good things - happening at GSK - he is so happy!

Best of luck to all.

MrsMarilyn

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