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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debandmike's picture
Replies 3
Last reply 3/28/2011 - 8:55pm
Replies by: ValinMtl, MichaelFL, KatyWI

Loving the website so far but could use a few guidelines on how to set up a profile. Am I setting it up for my husband who has the cancer? Or both of us?  Looking for guidance and appreciate all your replies to my email. I feel I have found a place to go and share with others who are going though the same thing my husband are going through. Thank you for welcoming us to your family.

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trojansurvivor's picture
Replies 17
Last reply 10/30/2011 - 5:01pm

I am an 8 year Melanoma stage 4 survivor, and have been in the drug trial for Yervoy for the last 6 years, and have had clear scans for 3 years.  I originally was diagnosed with stage 4 in late 2002, with tumors in my lung, spleen, liver and spine.  I had bio-chemo therapy,(dacarbazine, cisplatin, IL-2, and interferon).and went into remission for about a year, including a monthly maintenance program of low dose IL-2. After about a year, I started to have soft tissue tumors appear in my groin and upper thigh area, and had about 5 surgeries for tumor removal.  After 6 more small soft tissue tumors appeared, I began the ipilimumab trial. My only side effect was a skin rash on my stomach and back of my legs that disappeared in a couple of months. My tumors began to decrease in size dramatically, with most disappearing within a year.I had a second infusion treatment 2 years after the first treatment.  One tumor, however, began to grow larger and about 3 years ago was surgically removed.  For the last 6 years, no new tumors have appeared, and I have had clear scans for the last 3 years.  

This drug was a god sned for me and saved my life !!!

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Charlie S's picture
Replies 7
Last reply 3/29/2011 - 6:34am

Just got off the phone after a nice extended conversation with Amy and she is hanging well.  Between Fentanyl patches and oral meds for breakthrough, she is managing and living.  She was able to go to church yesterday with her family, but tires out after extended outings.

She was quite lucid and just like the Amy I know, but she is tired, tired, tired and still continues working the problem.  

Most of all, she is hanging in there as are her family.

A remarkable woman.

Charlie S

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mimi0201's picture
Replies 2
Last reply 3/28/2011 - 5:00pm
Replies by: Anonymous, Tim--MRF

      Does anyone have any info on obtaining "Yervoy"?  We are in limbo and are unable to get answers on our end.  We're hear at NIH waiting to be tranferrred to Rush Chicago.  Thanks.

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carol b's picture
Replies 10
Last reply 3/29/2011 - 9:58pm

I got a wonderful response from the IL2. The first week I could only do 9 bags of the drug. The 5 days i had to recover were not enough. i went back n got another 6 bags. Its all my body could handle. My heart rate bottomed out both times. But my Doc says i done good. He had only hoped I would get at least half of the 28 bags that ya need to fully get the effect of IL2. I got 15 bags so he was happy. To me it was horrible but totally worth it. My 3 tumors in my neck have disappeared. Well they aren't budging out anymore. The huge one under my arm is about half its size now. Maybe 2 inches wide compared to around 6 inches. We are excited about IL2 working. Doc says im not out of the woods yet but at least it is working. He says my on immune system has kicked in and i should be seeing the tumors shrink even more as the days pass. As far as being back to self after 2 weeks, it didn't happen for me. Im into my fourth week at home and just now feeling some sort of normal. I was extremely weak when i got home and couldn't eat because of nausea, even though i had meds for that. Everything liquid tasted like tinfoil. I realize now i should have listened to you guys on here when you said DRINK water water water.. ..... I took most of every ones advice with me to the hospital.. I Thank God for you all. Even with all the love and support i had with my family and my caregivers{ husband and sister} I would not have gotten thru the IL2 without your words of wisdom and the strength that you all have and for that I Thank You All. Words cant express how much I feel for you. One bit of advice to a caregiver out there, force liquid at all times even if its just a sip. Being dehydrated and the IL2 is not a good combination and no the IV is not enough. And one more thing, if ya see the patient acting weird or saying wired thing or are seeing things notify someone immediately...It can become permanent if not acted upon. Luckily for me my hallucinations were pink fairies and butterflies it could have been the exact oppistie.They continued for about 2 days after i got home and slowly started fading away. I get a PET scan in May and hopefully it hasnt spread anywhere else. I do another round of IL2 the end of May and im scared to death to do it but i will. I have a wonderful team that takes care of me. I can only say good things about Vanderbilt and its employs. Well thats my update. And once again Thank you all. My prayers are with you all that whatever treatment you get or are getting works and gives you back the HOPE that we seem to lose with this terrible disease.

Carol b

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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barns1's picture
Replies 3
Last reply 3/28/2011 - 1:51pm
Replies by: barns1, Janner, Carmon in NM

Hi, I have had two melanomas, one in 2005 ulcerated and one in 2009 non-ulcerated. I also have been diagnosed with chronic lymphocytic leukemia. What are the chances the melanoma will show somewhere else in the body because of the ulceration? I have never found any stats, thought maybe someone else has. Thank you.

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We are looking to speak with patients diagnosed with specific types of melanoma including basil cell carcinoma to participate in a confidential paid phone/online study.

 

If they meet the study criteria and participate

They will be paid $175 for a one-hour teleconference

The discussion will be scheduled at their convenience anytime between April 7th to April 15, 2011.

 

This study is being conducted to help improve treatment and education for people living with specific types of melanoma.

 

To see if you qualify click this link  https://www.surveymonkey.com/s/JGVKBJZ

 

For additional information please contact:

Jane Walker at 888-392-5000

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Simmy from Oz -Melbourne's picture
Replies 1
Last reply 3/28/2011 - 11:35am
Replies by: Anonymous

Hey everyone,

Ive been taking plx4032 for bout 9 weeks now, with amazing results in regards to shrinking all my tumours.  Only problem is Ive got the most severe, acne- like, extremely sore facial rash :-(    Its been like this for  5 weeks now and only seems to be getting worse.  Its in my ears, on my head, up my nose, down my throat, its crazy stuff!! The rash is all over my body but not as sore or severe as my face.   My whole body is so itchy tho, its driving me nuts! 

Has anyone else experienced this? & how have u treated it?  My oncologist gave me some tabs to treat acne and infection, and some cortsone type cream.  Hes given me a week, and if theres no improvement in my skin, he is going to drop my dosage of PLX, which Im  a bit scared to do when Im getting such a good response.  He does not seem too concerned about dropping my dose & thinks that 6 tabs a day instead of 8 will be sufficient for my body weight (53kg)

What do all you experts out there think & has anyone had this RASH problem...Will it ever GO AWAY??  

Thanks all for your wonderful kind hearted replies,

keep smiling everyone  :-)          Simmy from Oz     xo  

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Our family is walking in the ACS Relay for Life in May, in honor of my battle with stage 4 thyroid cancer and our 15 year old son's current battle with melanoma. Do any of you have any info/statistics/personal stories on how ACS has aided melanoma research or patients? I would like to have some melanoma-related info to share with friends when asking if they would like to contribute. Thank you in advance!

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NicOz's picture
Replies 4
Last reply 3/31/2011 - 6:57am

For your help in getting me to see a decent Onc for the first time in 3 years :) AND for your support in the consult & for taking several hours out of your day. You're an angel- but I already knew that xxx I'll get the histopath, MRI & bloods within a week & fingers crossed to get on that bloody trial asap :) xxx again!!!

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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The last several trials in this URL are for c-kit melanomas.

http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/melanoma/cli...

I'm me, not a statistic. Praying to not be one for years yet.

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Hi,

The first Oncologist I saw was not to keen on Interferon, was suggesting watch and wait, and going to check with colleague regarding clinical trials.

I opted to meet with Dr. Samlowski (he seems to be the Melanoma guy for Las Vegas) personally. I'm glad I did-he was very informative and much more comfortable discussing melanoma, statistics and treatments (not that I remember everything he said). He is suggesting interferon. The high dose phase for sure, and for as long as I can take take it the 3 times a week injections. He says it's tough, but they will help me get through it. He thinks it for sure prolongs time to progression of disease and therefore it is prolonging overall survival. He thinks in my situation ( Stage 3B with an ulcerated lesion) it could improve my odds by 10-20 percent.  I'm going to quote him he said "we keep running this horse, because it keeps winning". He is also optimistic about IPI-he says he has used it for years and he has patients with years of no progression in their disease. He said a trial is due to open very soon-early April.

After coming home I read all the news of Yervoy being approved (on this board) and happened to read the patient insert (link posted by another helpful member on this board). Yikes!!!! Some of the potential immune related adverse events sound pretty scary. Some irreversible and some even causing death. Tonight I looked up Intron and found some good ones in there as well.

My head is spinning-all the reading I do seems to make me more confused. Is there another choice I should be asking him about? Has anyone done both Interferon and IPI-is one easier than the other? I wouldn't get to choose if I'm in the clinical trial-it's randomized between the two. I meet with him again in a week. I also need to get a brain MRI, my PET scan was negative except for some reaction probably related to surgery and inflammation as it was only 3 weeks post surgery.

From what I have read on here-you have only so much time post surgery to get started on Interferon and some clinical trials.

I have to say though, I think I'm feeling better about doing something vs nothing. I reread my posts and they sound so jumbled up-so many of you post such eloquent coherent words! It has been so informative reading all the posts and I'm so thankful that you all have been so generous with your first hand knowledge about this disease. It is overwhelming, but I'm going to fight it!!

Julie in Las Vegas

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Sunny Sea's picture
Replies 25
Last reply 4/18/2011 - 6:12pm

Hi Everyone. 

I'm so glad to have found this site.  This is so overwhelming.....the people around me who seem to actually "get" how serious this is are few and far between.  Most telling me "dont worry" ....yeah right.   The complete loss of control over my future .....I mean, from now on, this *thing* is a central component of my existence.   I can never "not worry" that it will come back.....someplace.   And now, every little ache or pain i have is the cancer spreading.  I feel like i'm losing my mind.  And I'm kicking myself for pulling a wait-and-see approach when i noticed the thing changing about a year ago.  All i'd ever known about skin cancer was basal cell or squamous cell.....(cut it off, it's gone) so i didnt feel any urgency about getting it checked.  The fact that skin cancer can kill....I was so clueless.    ---and i'm a freaking RN, you'd think i might have known better. 

I know it all comes down to reports and results.  This is my biopsy report.  I had one mole taken from my back that my dermatologist found (it was atypical) and then the one on my wrist which was melanoma. 

DIAGNOSIS:
     A.  Skin, right upper back, punch biopsy:
            - COMPOUND LENTIGINOUS MALANOCYTIC NEVUS WITH ARCHITECTURAL DISORDER AND MILD MELANOCYTIC ATYPIA
     B.  Skin, right forearm, excision:
            - MALIGNANT MELANOMA, SPINDLE CELL TYPE.
            - CLARK'S LEVEL:  IV
            - DEPTH OF INVASION:  1.0 MM
            - NO ULCERATION
            - NO REGRESSION
            - NO PERINEURAL OR ANGIOLYMPHATIC SPACE INVASION
            - THE MARGINS ARE CLEAR OF BOTH MELANOMA IN SITU AND INVASIVE MELANOMA
COMMENT:
     Dr. Buckley, Dr. Frazier has also reviewed specimen B and concurs with the interpretation of spindle cell melanoma.
______________________________________________________________________________________________________________
 
CLINICAL INFORMATION:
41 y/o caucasian female
A) irregularly shaped dark brown macule.  R/O atypia
B) irregularly shaped multiclored macule with dark brown center.  Nevus. R/O melanoma in situ.
 
GROSS DESCRIPTION:
    A.    Labeld with the patient name and "right upper back".  A pigmented skin punch measuring 0.8 cm in diameter and 0.5 cm in length.  Bisected.
    B.    Labeled with the patient name and "right forearm".  A skin ellpse 1.4 x 1.0 x 0.4 cm  No orienting marks are identified.  Inked, breadloafed, and submitted in one cassette. 
 
MICROSCOPIC DESCRIPTION:
    A.    An asymmetric lentiginous proliferation of melanocytes in variably sized nests as well as individually at the tips and alongside rete pegs with extension into the dermis, highlighted by immunohistochemical stains for pan-melanocyte antigens, controls appropriate.  Broad zones of confluent melanocyte proliferation along the junction extending beyond three rete ridges in width or significant upward pagetoid migration are not observed.  There is a variable host fibroinflammatory reaction including melanophages.   Mild degrees of melanocytic atypia are identified.  The biopsy margins appear clear in the plane of section. 
   B.     Sections show broad, irregularly-nested and solitary atypical junctional melanocytes overlying sun-damaged skin.  Dermal cells are spindled with superficial mitotic figures identified.  There is no perineural or angiolymphatic space invasion identified.  The pan melanocytic marker highlights the spindled dermal melanocytes within the reticular dermis measuring to 1.0 millimeter.  There is no ulceration or regression.  Tumor infiltrating lymphocytes is absent.  A Ki-67 proliferating marker shows low proliferative activity of the dermal melanocytes.  An HMB-45 immunoperoxidase stain shows weak positive staining of the dermal spindled cells.  A pHH3 mitotic stain highlights a rare dermal mitosis.   The margins are clear of both melanoma in situ and invasive melanoma. 
 

So, I had the initial biopsy in mid-February, they got the results a week later and referred me to a surgical oncologist.  The soonest appointment was March 1.  He in turn set me up for a WE and SNB which will be done this Thursday (3/31).  So, about 2 months have gone by since this thing was removed.....could it have been spreading or causing more problems while i'm sitting here WAITING...(the waiting is horrible).  

If the WE removes all the tissue from around the site, HOW can the thing come back in the same area??   Can the still leave "stray" cells behind even when they're removing so much surrounding skin?   If it does come back, will it show up on the surface of the skin or just pop up in some random place in my body?   Could it not already BE somewhere else?  Is there a reason why they wouldnt have done a PET scan yet?  Wouldnt that be a logical step to take while we're waiting for the surgery date?   Ok, as you can see....i'm overthinking this and driving myself nuts.   I try to remember to take one day, one moment, one step at a time.   That's much easier said than done.  

Thank God for all of you and the courage that you have to be on here, helping us "newbies" while continuing your own fight.   I'm sure the "freak-out" factor must get old after a while but i know that if anyone can understand it, it is those of you who have been here before.   Any help or guidance you can give would be appreciated.  

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FormerCaregiver's picture
Replies 4
Last reply 4/12/2011 - 2:28am

If you have recently joined this forum, it would be very helpful if you
could create a brief profile so that we can quickly assess what stage you
(or the person that you are concerned about) is at.

There are some very knowledgeable people in this forum, who are more up to
date than some doctors are. However, in order for you to get the best
possible answers to your questions we really do need a basic profile in
order to help us to help you. It doesn't have to be very long at all, but
should include the following as per your profile page:

Melanoma Stats
Initial Diagnosis date
Stage at Diagnosis
Current Stage (this is important)
Depth of Primary (this is very important)

Treatment Stats
Location:
Doctor:
Treatment Center:
Clinical Trials (this is extremely important)

Thanks,
Frank

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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I have spent a significant amount of time reading as much as I can from everyone regarding the BRAF Mek trial.  Everyone has been so positive and their words have truly helped.  My mother in law has stage IV melanoma.  She has multiple tumors under the skin in her torso, legs, and two on her head.  Her scans also show a tumor in her right hip.  Her scan have indicated that the cancer has not spread to any vital organs.  She is tired and has a lot of right leg pain.  Tomorrow is a big day.  She will begin the BRAF Mek trial at the Beth Israel Hospital in Boston.  We are hoping for the best.  I am her primary care giver and I have told her about this website but she is not ready to read it.  I just wanted to say thank you to all those who are sharing their experience.  It has helped me stay knowledgeable about what to expect. 

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