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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Anonymous's picture
Anonymous
Replies 3
Last reply 8/16/2014 - 1:42am
Replies by: Jubes, Anonymous, Janner

Hello, I am new to the community and am hoping someone will be able to share some insight. I noticed a brown spot on the bottom of my foot last Friday afternoon. It was in a hard to see place on my right foot just beneath my pinky toe and I was immediately concerned. I've been trying not to consult Dr. Google but the little I read is freaking me out. I am 6 months postpartum with my second child and have been experiencing anxiety as it is. I know worrying isn't going to help or change the outcome but I can't help it. I'm trying very hard to be positive but I also want to be realistic. So I called and got in for a last minute appointment with the dermatologist last Friday and she biopsied it right away. It looks like she cut around it and scooped it out. She told me the results will take 2-3 weeks but I have a follow up scheduled for a week from this Friday which will be 2 weeks after the biopsy. I don't think it passed the ABCD's. Any thoughts on this? TIA

 

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Nell's picture
Replies 11
Last reply 8/15/2014 - 11:38pm
Replies by: Anonymous, Nell, Mat, Bleeds, BrianP, Marianne quinn, kylez, jogo

Next week I was to have a 4th  infusion of Yervoy. Diarrhea has become progressively worse, so I have been taken off Yervoy and put on prednisone. Just wondering what side effects of prednisone any of you have experienced.  Also, what happens if this doesn' t stop the diarrhea?  Then I wonder if there is a possibility that I could still have the last infusion at some point? I know only a small percentage of us will be Ipi responders, but is it still possible now that I will miss the last dose? Disappointed....:(.....also nervous because I know this colitis can get serious....Thank you for the help.....I wish blessings on all of you.

One voice can make a song; one life can change the world.

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Annesmith's picture
Replies 4
Last reply 8/15/2014 - 5:04pm

I am being completely paranoid, but....  I have a tender bruise over a knot in my leg (calf area)  The bruise is at least 2 inches long an i can't recall hitting anything.  It is around a mole that is large, but not abnormal compared to my others.  I had a melanoma 1B, 8 years ago.  Any reason to be concerned? 

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CHD's picture
Replies 2
Last reply 8/15/2014 - 12:02pm
Replies by: CHD, JerryfromFauq

Does anyone have any idea of how effective yervoy is with mucosal melanoma?  Links to current research and/or personal experience would be much appreciated.  I am having a hard time finding anything about this.

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kelvin's picture
Replies 2
Last reply 8/15/2014 - 9:47am
Replies by: Nicky, jahendry12

Can anyone tell me how serious stage 4 actually is,I know all cancers are serious,I'm a year and a half into it have had surgery's and radiation a year ago but still feel pretty crappy,

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Replies by: duncan_aus

I was diagnosed with Melanoma in 2003.  It was deep and took two surgeries to get it all.  Fortunately it was not too agressive and I was node negative.

I underwent a month of daily interferon treatments and then did home injections for a few months until I had to quit because it was so draining I couldn't work.

After each treatment I would get the 'Shake & Bake's.  I would shiver uncontrollably for 3-4 hours and then sweat uncontrollably for 3-4 more.  I finished the treatments in late 2003.

In the 11 years since then I have periodic episodes where I get the 'Shake & Bakes'.  It comes out of nowhere... I feel like I am on interferon for one day... and the next day I am fine.

It happens about once or twice a year.  It doesn't have anything to do with being sick or any other physical issue.

The symptoms are so exactly like those of a post interferon treatment, it is hard to imagine it could be anything else.   If I got sick afterwards or came down with the flu or even a cold... I would assume that was the problem... but in each instance it hits suddenly and within 8 hours starts going away.

I am curious if any other folks who took interferon in the past have experienced similar incidents.

Thanks.

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liam1209's picture
Replies 5
Last reply 8/14/2014 - 8:24pm
Replies by: BrianP, tschmith, Linny, hbecker

How is Johns Hopkins in treating metastatic melanoma?  I have been recommended several specialists in the US but none at Johns Hopkins.  My dad lives in Central America and has metastatic melanoma and the top hospital in central america has a partnership with Johns Hopkins.  Would be quite convenient for my father if he could be treated through Johns Hopkins.   What are your thoughts on Johns Hopkins and is there a regarded specialist? 

Liam 

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LaurenE's picture
Replies 7
Last reply 8/14/2014 - 8:17pm
Replies by: BrianP, Bubbles, Anonymous, eric w, Janner

My dad was diagnosed with metastatic melanoma (primary lesion was removed years ago, later developed one tumor in each lung and then one in the soft tissue of his neck) this past spring and had two surgeries this summer to remove all of the known mets. There was one positive lymph node and some local mets in his neck dissection, and one of the tumor resections of the lung had iffy margins. We have been offered adjuvant radiation to the lung for residual disease, but we have run into road blocks in terms of receiving anything further. Several experts have been kind enough to consult with us over the phone and have said they would try to give him ipilimumab even if there was no tumor to monitor, however as this is technically considered adjuvant, it is not FDA approved. Regardless, we know the melanoma is not gone, it is still metastatic, and I think that some insurance companies could approve it - but none of our local oncologists will offer it - or even IL-2 (and we are concerned that in the end these experts may waiver on offering it, as well, if we transfer care). 

Has ANYONE out there been offered systemic treatment after surgical removal of all known mets? If so, what? And by whom? 

Thank you in advance for any insight!

 

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robbier's picture
Replies 1
Last reply 8/14/2014 - 7:38pm
Replies by: Fen

I went to the hospital to get a copy of the bone scan which was done on Tuesday of this week.  I wanted to know what it said.  From my Pet scan of July 23, 2014.  There was a suspected abnormal place near my pelvic area, and right mid thight, suspected place in the marrow.  which was why the bone scan was ordered.

Today I picked up that report and it said no abnormal pelvic acitivy seen.  No abnormal femoral shaft activity.  Just a few places of degenerative disease( like knees, ankles, feet, and spine).  whichI think would be common in older age (58).  I am bery thankful and been thinking my God for the good news.  Now next week my visit to the Doctor to find out what he recommends at this time.

 

robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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ocelot's picture
Replies 6
Last reply 8/14/2014 - 7:26pm

Hello everyone, 

 

My fiancee was diagnosed yesterday with melanoma. We are still in shock, and trying to make some sense out of it. We;ve been to a dermatologist and have an appointment set up with a melanoma specialist the week after next. I expect that further excision (to increase the margins) and a sentinel lymph node biopsy are in the offing, and then whatever the biopsy indicates will shape what happens after that. 

 

Here is what we know so far, based on the pathology report for what looked like "just a mole" and the other tests that have been done:

Breslow thickness: 1.15 mm

Mitotic rate: 1

Location: behind ear

Depth of penetration of skin: to the point where the epidermis meets the subdermis but not subcutaneous (as far as I can follow pathology-speak)

Primary melanoma completely excised with clear margins, although very narrow  (1 mm hoizontally and 3 mm vertically)

No swelling or symptoms in lymph nodes, chest x-ray, abdominal ultrasound and bloodwork all clear of any abnormalities. 

 

From what I can figure, this looks like Stage 1B to me. However, the dermatologist we spoke to was quite ominous, talking about "spending quality time with your kids", "be grateful for each day you have", and "don't plan anything for the next year". So we are panicking on one hand, and slightly reassured by the high success rate for early cancers on the other. 

For those of you who have been down this road, what would your advice be at this point, in terms of what we should expect or what we should be doing? I realize there are dangers in getting information off the internet, but I also would appreciate any wisdom from this group.

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/14/2014 - 1:17pm
Replies by: Anonymous, Janner, casagrayson

the description by my dermatologist was: dermoepidermal junction contains a primary nested melanocytic proliferation.Within the superficial dermis, discrete nests of melanocytes with slightly smaller nuclei are present. Lateral to the dermal portion of the lesion,slightly atypical melanocytes proliferate which bridge and fuse adjacent rete and are associated with a superficial fibrosis of the papillary dermis.In foci there are melanocytes in suprabasal locations with larger nests.

 

diagnosis:     Compound nevus, dysplastic type with moderate dysplasia, extending to the base of the specimen.

conservative re-excision has been advised. I am just looking for more feedback on this as this is in a region with very close proximity to lymph nodes and other vital organs.

 

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Lyric17's picture
Replies 24
Last reply 8/14/2014 - 8:51am

Hi everyone,  my name is Lyric and yes that is my real first name. I am 30 years old and I seem pretty healthy except for an issue I have going on with my index finger nail.

 

About a year ago I noticed a small skinny pale light brown streak on my nail. The line is near the side of the nail and not the middle of my name. It runs from the cuticle to the end of the nail. And to be honest I use to smoke and had quit about a month before I noticed this discoloration of a line on my nail. So when I spotted this I thought it was nothing more than cigarette tar stain to my nail and it would slowly go away since I was smoke free.

 

Six months went by and nothing changed. The small skinny light pale brown streak was in the same spot with no changes. My fiance kept telling me I was worrying over nothing and just to forget it and as you age your body changes. At the moment I went along with what she said but at times in the back of my head I didn't feel right about ignoring it. Kind of like it was my body telling me something or a possible warning. 

 

Finally at about a year I got tired of looking at it and after several hours of non stop looking online the only thing I seen remotely was something called Subungual Melanoma. My fiance did her own research and it's all she could come up with as well. She grew a little worried by now and so did I.

 

Next day I called my local clinic and doctor to get an appointment. I was able to see the doctor about an hour later. So the doctor looked at my index finger nail and was speechless. She said she had no idea in all her years of practice had she seen something like this. I mentioned to her what I found online and she left the room to do some searching. She came back and stated she had no idea and she called making a referral and appointment with a Dermatologist Clinic and Cancer Specialist next town over.

 

I had to wait about a month before I went to see the dermatologist. Once the dermatologist looked at my fingernail she asked if I'd like to have a biopsy done that day or later and of course I chose now. So the dermotologist comes back and ssys she is doing a punch biopsy of my nail and the skin area below the nail which is where melanoma/whatever it is is. She does the punch biopsy and not to much discomfort. 

 

Now I had to wait a couple weeks for the results of my biopsy. If I got a letter in the mail it was benign and if the called me it's malignant. Well today my results came by a phone call. But the RN says the results showed nothing but something is there and we need to figure out the cause of it. She said that this time I will be seeing the head main dermatologist next visit who will performing a deeper biopsy sample of the area. The RN stated they knew it was some type of melanonychia but don't know exactly why or what. So they don't know if it's benign or malignant or nothing. So now I have to do a second biopsy of the same spot and a little deeper. And now i gotta wait another month till my next biopsy. This concerns me a lot and has me extremely worried. My fiance keeps saying things will be alright but that people die young everyday - which this is not very helpful.

 

Can anyone give their thoughts and opinions here? I'd really appreciate it a lot. If you know anything about, anyone who has been through or if you have been through this please let me know more information. I feel lost and kind of like it's a type of cancer that many doctors don't know about. Help please!!!

 

BTW I have recently became a member also of Cancer Compass asking for help and thoughts. The people there have been really nice and I have had a couple replies but I would like to see thoughts and help also from those from melanoma.org site here. Please if you've have had experience, know someone who has or any information please let me know. I have included a couple pics as well of my index finger with the supposed issue. In the photo you will see the light pale brown line near the edge of my nail and you will also see where a recent punch biopsy was performed. As stated above that biopsy came back inconclusive and I have to now go in for a second biopsy which will be deeper. 

I'm a 30 year old white male btw just to give a little idea of my age and race.

I'm very terrified and scared. I have cried almost every day over  and can't imagine dying and leaving my two dogs and two cats. I can't imagine leaving my fiance as well who will not discuss or talk about it all. I have no family to talk to as I was adopted and have not talked with my adopted parents in over 10 years. I don't know my real parents and family so medical history and support is not there. I have no one to really turn to and I'm sorry for asking for help and support. But then again this could all come back benign but from what I've read one benign cases are more common in african american but with caucasian it's very rare and more possibly malignant. Plus the life expectancy is horrible. Help me with information or anything if you can.

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Leslie'sHusband's picture
Replies 5
Last reply 8/14/2014 - 8:31am
Replies by: Leslie'sHusband, Thandster, Anonymous, odonoghue80

Les had her laproscopic lymphadenectomy (left groin) done on April 15th, and the drain was removed in mid-late June.  She is experiencing a burning sensation in her left thigh at the incision area where the drain tube was, mainly when she bends over or squats down.  I have been able to feel a definite temperature difference in her left thigh vs. the right several times since the drain was removed.  She will be emailing the nurse at Duke about this this morning, but I also wanted to see if anyone here has experienced anything similar.  She is due for her next PET/CT in late September. 

Dave

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/14/2014 - 5:28am

Can anyone suggest the best melanoma specialist and the best hopital in India?

God bless you

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