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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eric w's picture
Replies 15
Last reply 12/5/2013 - 11:28pm

Hi it has been a while since i posted. My wife is 6 months out from completing ipi at UCLA. She just got her scans done and her multiple subcentimeter lung nodules are still stable with one of the nodules showing a 50% decrease. However one brain met was found. They will be doing SRS on it in the next week of two just trying to get thing scheduled. After it is zapped we will reintroduce ipi as she cant do any trials since she does not have measurable disease. My question which i have asked on a few other sites/forums is are there folks out there who have had brain mets that are still here 2, 3, 5 years out. Just looking for something to hang onto here. Thanks

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Replies by: BrianP

Hi Everyone,

I need help with couple of symptoms my husband is experiencing while taking MK3475. First, he does continue to respond to anti PD1, tumors in the lung are almost all gone, the liver has only a few way smaller than when he started, lymph nodes are clear :)

But suddenly he has develop severe gastritis (Docs don't know the reason for it). He has been suffering now for over a month eventhough he has a load of medications to help ease the pain/acidity/nausea/vomitting. At least, now, nausea and vomitting are gone...but the pain when he eats still there. His diet is all home made pure soups which he is tolerating now and liquids. Don't know what else to do to help him, any suggestions?

Second problem - he is experiencing low blood pressure (80/58, 78/48) but no dizziness, ligthheadness, etc. He does sleep a lot, he is constantly fatigued! He has gone couple of times for fluids. Tomorrow morning if his pressure continues low, I will take him again for more fluids to see if that helps. No other reason for the low BP!

Suggestions? Anyone on anti PD1 trial experiencing similar symptoms? 

Thank you so much for all your help and support. 

Elenise

 

 

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Jasper's picture
Replies 5
Last reply 12/4/2013 - 5:52am

I'm having the worst anxiety I have ever experienced in my life! I had a "suspicious mole" removed week before last, turned out positive melanoma 1mm (that's all I know for pathology). The mole developed inside a birthmark was there over a year before I started noticing. Now the surgeon can't get me in for a consuot untill nexy Monday the 9th! I mean this thing is still there reproducing and possibly spreading shouldnt I be in surgery STAT? I am a nursing student, it's finals, I'm at my wits end, I'm convinced it's spread, I'm convinced I'll be dead soon and I can't get any answers :(
The doctor who removed the mole went on vacation for a month, just leaving me with this mess. I swear the biopsy site won't heal, it still hurts and is red and has been a week and a half! And It looks like the remaining birthmark is getting darker...and here I sit, hands tied.

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/5/2013 - 7:55pm
Replies by: tgow, FrankG
CasieLV's picture
Replies 2
Last reply 12/14/2013 - 2:27pm
Replies by: arthurjedi007, Janner

What do you guys use to heal from a mole removal? I had a stage 3 melanoma 2 years ago, and now my doctor removed a mole on my back. I heared neosporin isn't the best to use. What do you all recommend? Thanks!

 

Casie, melanoma survivor and co-owner of Wear Awareness

wear-awareness.com

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What do you guys use to heal from a mole removal? I had a stage 3 melanoma 2 years ago, and now my doctor removed a mole on my back. I heared neosporin isn't the best to use. What do you all recommend? Thanks!

 

Casie, melanoma survivor and co-owner of Wear Awareness

wear-awareness.com

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What do you guys use to heal from a mole removal? I had a stage 3 melanoma 2 years ago, and now my doctor removed a mole on my back. I heared neosporin isn't the best to use. What do you all recommend? Thanks!

 

Casie, melanoma survivor and co-owner of Wear Awareness

wear-awareness.com

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GAngel's picture
Replies 8
Last reply 12/5/2013 - 10:21am

We had so much to be thankful for this Thanksgiving having just learned the great news days before the holiday that the results of Rudy's most recent scans revealed no evidence of disease! For those that do not know his story, he was diagnosed in late February 2013 with Nodular Malignant Melanoma - Stage IV with 15+ mets in his liver and his left groin lymph node.  After testing positive for BRAF he was started on Zel in late March of 2013 and had a great result as far as tumor shrinkage, however, he suffered many grade 4 side effects.  In July 2013, he started on the Dabrafenib/MEK combo, which he has tolerated much better and he has now reached NED!  We are so thankful for this blessing! I am always mindful of the fact that for most patients this treatment will not provide a durable response and the beast will eventually find a way around it, however, we are so grateful and celebrating God's blessings and focusing on the positive and not what may happen.

PDL is coming to UCI where Rudy's oncologist will be heading the trials next month; however, his NED status will not permit him to be a participant.  Therefore, I am hopeful that if his status does change that he will then be able to participate but we will cross that bridge when and if we get to it! 

For all of you still battling the beast and for your loved ones fighting along with you, you have been in my thoughts and prayers every day.  May the Lord be your strength and comfort along this very hard road and may you know that you are not alone and you are loved! God bless you all! 

Yours truly,

Gina 

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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ktrlieb's picture
Replies 2
Last reply 12/1/2013 - 6:04pm
Replies by: ktrlieb, POW

Hello, MRF members and users, 

I had a biopsy of a mole on my ankle on 11/18, and it was diagnosed as a displastic nevi on 11/21. The doctor's office called me on that day to schedule surgery to remove the remaining mole on 11/26. I underwent the surgery on that day. I am concerned about the aggressiveness of the treatment. The doctor removed a significant area around the mole and sent it off to be analyzed. 

From my research, I haven't seen displastic nevi handled in such an aggressive manner. I go back on 12/8 to have the stitiches removed, so I can pose my questions to the doctor at that time, but does anyone have any suggestions as to what questions (other than the obvious, "Is it melanoma?") I should be asking? Are there stages to displastic nevi that warrant aggressive action and concern? I appreciate your suggestions and opinions, and I thank you all in advance for your attention to my question and concerns. 

ktrlieb

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FrankG's picture
Replies 6
Last reply 12/11/2013 - 3:42am
Replies by: Kim K, FrankG, Janner, Anonymous

I had a stage I melanoma in 2001.  I have had 8 skin biopsies since July, including two basal cells, two benign lesions, and four moles that have been described to me as, "A 9, with 1 as totally benign and 10 as melanoma."  My dermatologist is at Johns Hopkins and really knows his stuff.  I have every confidence in him. Upon reading the path report for the last biopsy, I sent a message to my dermatologist, who replied with the following:

"I am very perplexed by the pathology results every time I do a biopsy on you.  The reason I have not contacted you yet is because I am asking around pathologists and other physicians if they have come across someone like you, meaning someone who had a melanoma and whose nevi show similar findings to you: lichenoid inflammation, regression changes, melanocyte nesting, intraepidermal atypia and so forth.
This seems to be the case every time I sample a mole on you.
"

The "and so forth includes things like nuclear enlargement, prominent nucleoli, dermal fibrosis, numerous colloid bodies, and prominent pigment incontinence.

The same day I received a call from the resident who did the biopsy with him.  He told me that they had spoken to a number of pathologists and dermatologists at Johns Hoplins and had not found one who had had a similar case. They were particularly concerned that there had been immune responses to each of these dysplastic nevi, which he said does not normally occur.  Subsequently they did a literature seach and found that all cases reported in the literature of immune system responses to non-melanoma nevi were associated with unidentified melanoma elsewhere in the body.

I have another appointment to discuss nest steps.

Has anyne had experience or does anyone have knowledge that could be helpful?

 

Thanks.

 

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delora's picture
Replies 10
Last reply 12/5/2013 - 5:06pm

I'm definitely reaching out for anyone with a similiar experience.  I had melanoma 12 years ago discovered on a mole on the back of my right leg.  I had to have my lymph nodes removed because the sentinnal node was positive.  I could only do a month of interferion.  I got bit by something at the beach a couple months ago near my cancer site.  When it was gone, I was left with what felt like a cyst.  After a buddy of mine told me he thought spiders had laid eggs in my leg (haha), I went back to my surgeon.  He took out the cyst...melanoma.  The new oncologist is puzzled.  Reoccurances in the same site don't happen 12 years later.  I am scheduled for PET Scan and Brain MRI on the 5th.  My blood work in the Drs office looked good.  My lungs sounded clear.  I'm confused.  I'm scared.  I'm a single mom of two kids 21 and 7.  My oldest has already lived through this nightmare.  My 7 year old has no idea what's going on, which is great.  I'm 38.  I am just waiting; trying to keep my mind focused.  I have my moments.  Has anyone had an experience like this?

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chuicat77's picture
Replies 3
Last reply 11/30/2013 - 10:41pm
Replies by: Janner, Anonymous

I was diagnosed with Melanoma on February 21, 2012, had wide excision surgery on March 6, 2012. My lesion was reddish pink, and discovered on my left breast during a breast exam. I have a genetic pre-disposition for cancer, as I have 3 1st degree relatives that have died of cancer. Due to the size and abnormality of it, I had major surgery and approximately 15% of my breast removed and reconstructed. My cancer was large across but not deep. It was classified as Melanoma in situ.

Many biopsies and surgical procedures to remove atypical moles in the past 18 months. Biopsy was perfomed on a "black mole" small in size, yet abnormal looking came back as "pre-cancerous" on November 25th of this year.....research has brought up many different definitions of this and my Dermo says that nothing more needs to be done. X-rays were also done on my chest and a granuloma was found on my right lung, blood work was abnormal as far as liver function and urinary. My gut is telling me something more is going on and that a more aggressive approach needs to be taken. I have contacted my surgeon and asked for his opinion, but I would like others who are going, or have gone through this, to help me. 

I have also had Basal Cell Carcinoma 3 times. I am thankful that I have an appointment with a geneticist on December 6 for an initial appointment. 

 

Thank you for your help!!!

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POW's picture
Replies 9
Last reply 12/15/2013 - 11:17am
Replies by: POW, Janet Lee, Anonymous, Fen, tasjacques, Brendan

I was just recollecting a very, very nice thing a melanoma patient's friends did for her. It occurred to me that this gesture would make a lovely gift for either a patient or a caregiver. Then I got to thinking that maybe others of you could come up with other thoughtful gifts that would mean a lot to people struggling under the physical, emotional and financial stresses of coping with melanoma. My suggestion is below. I would appreciate any other ideas you may have. 

Idea #1 - engage a professional cleaning service to come in and thoroughly clean the house from top to bottom. 

I don't know about you, but when my brother was sick, cleaning the house was near the bottom of my list of priorities. I didn't have the energy and dust mice in the corners just didn't seem all that important in the grand scheme of things. However, I was ashamed of the state of the house so I was very reluctant to invite people in. This lead to fewer visits to my brother and more social isolation for me. 

Another caregiver told me that her friends banded together and hired a cleaning service to come in for one whole day to scrub her house from top to bottom, including cleaning the carpets. For the first time in a long time her home was sparkling clean. Entering such pleasant surroundings after yet another long and trying day of  tedious traffic, boring waiting rooms and scan anxiety made her smile and feel relaxed. 

I think that was a lovely and creative gift for her friends to give her, don't you? 

Can you suggest anything else that would make a wonderful gift for someone who is struggling with melanoma? Has anyone done something really nice for you? Have any of you done something really nice for a patient or a caregiver? Do you have a secret wish that you hesitate to ask for? Filing all the papers that have piled up on the dining table? Mowing the lawn and caring for the garden? Volunteering to spend one afternoon a week helping the patient so the caregiver can get out for a few hours? Please share it here.

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Mat's picture
Replies 5
Last reply 12/2/2013 - 2:40am
Replies by: GAngel, Aussielyn, BrianP, POW

Hi Everyone,

I'm grateful to report that I'm continuing to get great results from the GSK combo (my initial treatment since my Stage IV diagnosis in July).  I started in August 2013 with a heavy and aggressive tumor burden, particularly in my liver.  While I still have more than 15 tumors in my liver, they continue to reduce in size--approx. reduction of 70-75% since August (with remaining tumors under 4 x 4 cm).  (Prior to treatment my liver mets grew in size by 20% over 20 days).  Other tumors have either resolved (spleen, some small lung mets), remain stable (a few remaining small lung mets) or continue to shrink in size (small abdominal wall met).  I feel great.  Other than (valuable and educational) time spent reading this forum and related materials, I'm thankful that melanoma is presently occupying a relatively small part of my day-to-day life.  Of course, I haven't lost sight of the fact that this is a bridge treatment (at least for many patients) and, thanks to you, I continue to stay abreast of other treatment options.  Happy holidays.

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