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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Missie's picture
Replies 7
Last reply 2/25/2014 - 12:57pm
Replies by: JerryfromFauq, Linny, Missie, Anonymous

To be honest I have not been diagnosed. Although I did only have it brought to my attention yesterday. I don't know much about this disease. I am very scared and don't really know where to start. Do I just make an apt. With a cancer doctor or do I go to the hospital? I am really unsure all I know is I want to get this taken care of as soon as possible. I have had this red mark on my arm for years. When I first seen it I just said it will probably go away in a few days... it never went away. In fact recently it got a little bit bigger. My mom seen it yesterday and said immediately that's melanoma I wanted to throw up. You never expect these things to happen and I am not outside in the sun a lot either. I am very pale and always have been and only had sun burn and hand full of times. I don't know how I could get this and I am Afraid of what it may have done to my body the whole time it has gone unnoticed. Can someone point me in the right direction? I am lost and scared and don't have much support here.

Millissa heilman

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Maereard's picture
Replies 4
Last reply 2/25/2014 - 12:41pm
Replies by: Maereard, Janner, BrianP

I always come back here when I'm scared. I was diagnosed with melanoma over a year ago. It was very small. They did wide incision and I was told thete was no need to biopsy the lymph nodes. I was very lucky and all margins came back clear from the incision. I had my regular skin check 2 weeks ago and all clear again:-).....until this past weekend. I found a lump under my arm in the shower. It was about the size of a pea. I sqeezed it:-/...I was hoping it was just a pimple from shaving. Its a few days later and now it is red a very very painful:-( I scheduled an appt with the dermatologist in the morning to have it looked at. Of course now I'm terrified. I am really just posting this to get my fear out.

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sunshinlilyrose's picture
Replies 31
Last reply 2/24/2014 - 11:26pm

Hi all,  so I had a weird growth  on my lower hip for a while and finally had it biopsied. My primary called me yesterday to tell me it is melanoma and told me to see a Dermotologist with a speciality in skin cancers. She faxed me over the pathology report but I don't really understand it.  I would appreciate any help deciphering it.  I also found out I am 7 weeks pregnant and am wondering if this is going to hinder any additional tests I may need.....smh....very stressed.  Ok, this is what my report says

malignant melanoma, superficial spreading type, invasive to level 2 and a measured thickness of 0.4mm, arising in the background of a compound dysplastic nevus with severe atypia, close to lateral and deep margins. ( please see consultation report from dr Martin c. Mihm of Harvard )

ok so above is exactly what mine said, including the parentheses, which btw I did not get a copy of that report. 

Thanks all!!!

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LBIO's picture
Replies 1
Last reply 2/24/2014 - 9:56pm
Replies by: BrianP

Hi, I'm Lisa and I work for Lion Biotechnologies (www.lbio.com) and am looking for patients who have participated in clinical trials using TIL treatment to share their testimonials. If you have and would be interested in sharing your story, you can email us at info@lionbio.com

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/24/2014 - 9:47pm
Replies by: Swanee
msue5's picture
Replies 2
Last reply 2/24/2014 - 9:13pm
Replies by: JerryfromFauq, msue5

Inova Life With Cancer is trying to revive a melanoma group in Fairfax Va. The group will meet Thurs Feb 27at 6:30 till 8pm.  You need to register online or by phone 703-698-2526. It is a 2 minute Dr from I 66 and 495 interchange so convienent to D.C and Va and Md suburbs. 

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Ali's picture
Replies 5
Last reply 2/24/2014 - 9:08pm
Replies by: BrianP, Ali, WITom, Swanee

I haven't posted in a while.  Last month was 2 years since I progressed to stage IV.  I am happy to report that I have much less cancer than I did 2 years ago.  And I feel great!  I have celebrated many victories and made it through a few defeats.  My history is getting harder to tell the longer I live, but hey, hard to complain about that!

Here is a quick rundown and then I want to ask a question.

Jan 2012 cancer in liver, bones, numerous other places

Feb 2012 radiation to femur and ischium

Feb-May high dose IL-2.  Did all 6 weeks of the stuff, after each admission I could feel my subqs shrinking and disappearing.  Unfortunately I could also feel new ones popping up

May scans show numerous tumors everywhere (50-100) and 25 small brain mets

June Temodar started.  Yervoy started.  One dose of Yervoy, colitis developed in 5 days, prednisone started working within days.  I could feel my tumors shrinking like crazy.  We almost started my 2nd dose, but decided because of my reaction to do a colonoscopy first, which looked good to the doctor, but the biopsy came back showing some inflammation/erosion.  So we did not do the second dose. 

Sept scans show all brain tumors gone and only 4 tumors remaining

Nov scans show one tumor near adrenal gland growing.  I search for PD-1 trials (don't get in because of the colitis) and stop taking Temodar.

Jan 2013 radiation to tumors in adrenal/kidney area

Spring 2013 (not sure now when the dates were).  Two tumors left over from IPI still showing growth, adrenal area and axilla.  I start pain pills for my adrenal tumors, can't walk up the stairs or take deep breaths without pain.  CREEPY.  My amazing Dr. in Utah knew of one of Dr. Weber's trials studying PD-1 in patients who had had dose limiting toxicites to IPI.  By some miracle I qualified and started to fly to Florida every two weeks.

Within days of the first PD-1 dose the pain is gone.  Almost not side effects.

12 week scans showed progression of some tumors and shrinkage or disappearing of others.  We decide to continue on with trial.

Sept.  axillary tumor growing like crazy and I can't stand it anymore. I go to Fred Hutch in Seattle to see about their TIL program that was just starting up.  I qualify for that too!  The plan was to to resect that tumor (and grow the TIL cells from it) and continue with the Pd-1.  However, we later learned that if I signed the consent for one trial, I was kicked off the other, so I could not go back to Florida.  I didn't feel too bad because that tumor was growing like crazy on the pd-1 (it was the size of my fist). 

Nov scans show growth of the adrenal tumors, they are now invading the kidney pole which made them necessary to treat.  So the big question was do we do the TIL now (they were able to grow enough cells).  Or do we try IPI again first (reinduction).  I gotta say, my response to IPI was so incredible, I really really wanted to give that a try again. 

Dec first dose of IPI a breeze.  I waited for the diarrhea and it never came.  2nd dose was a different story.  I got very sick to my stomach and an endoscopy showed trouble.  The diarrhea started before we got those results, and the prednisone was started.  After a few days it didn't seem to be making any difference and I had been in the ER from dehydration and I was sicker than I think I'd ever been (also running a fever which had everyone worried).  We had to move to Remicade (while waiting for that to kick in TPN and a week in the hospital).  This has me really worried.  Do we know people on the board who have continued to respond to IPI even after being given Remicade? 

We did scan just my abdomen mid January and it showed my tumors shrinking (not by much, but not progressing which was huge).  We do a full scan in a couple of weeks.  I would be way more confident if I hadn't have had to take the Remicade.  What is your understanding of how this affects Yervoy's abilities? 

Thank you for all your support.  I am so grateful for this site.  This fight is something awful, we need each other.

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melanomamom's picture
Replies 4
Last reply 2/24/2014 - 6:29pm
Replies by: LBIO, jag, Becky, LynnLuc

Hello everyone!  While I am not happy about the reason I am joining this community or the reasons you are all here, I am very thankful it exisits.  Reading about your struggles and successes is very motivating.  I found out last week that I have stage IV melanoma - it started in my leg in 2007 and has spread to my liver and pancreas.  I joined NCI's TIL cell trial and I start this week.  The first step is liver surgery on Thursday.  I have created a blog at www.melanomamom.com that I plan to update daily.  The point is to document my experience participating in a clinical trial, and to share my fight with others.  I'm just posting it on here because maybe reading about my daily fight will help you with yours just as your stories are helping me.  Love and strength to all of you!

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/24/2014 - 5:45pm
Replies by: arthurjedi007

I have an appointment with my oncologist next week but I want to see what people think here. I have had back pain for 7/8 months. At first it was once a week or so when I bent over with a sharp quick pain and has gradually become almost every time I bend over. It does not hurt if I l am lying down or excercising etc. Just when I bend over. Does this sound like spinal mets? I have a hard time believing that this is athritis as I am in my early 30s. I am really confused as to what it could be. 

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Hi!

I am in a trial, nivolumab/dacarbazin. If I suffer from side effects such as colite can I still be part of the trial or do I have to pause the trial until I am cured from the side effect. Can I be totally neglected to go on with the trial.  if I have another cancer than melanoma in my guts can I still be in the trial. I have blood and slime in my stools and suppose I have to report this to the doctors in the trial. I so want to go on with the trial.  I am hoping for answer. 

Inger

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Kelly Smith's picture
Replies 6
Last reply 2/24/2014 - 11:58am
Replies by: Becky, Ali, Kelly Smith, Janner, Zan

I am a 29 year old mother of 2 boys, 7 and 3, and in 2 weeks I will be induced with my 3rd, a little girl named Ava. This all started with what I was told was a "bug bite" 8 months ago...It just appeared one day. NOTHING like what you would expect melanoma to look like. Fast forward to Jan. 7th of this year. I did not feel right about this bump, which was still there, not growing, but would itch from time to time. I had a new dermatologist look at it, and she also said that it was nothing. I insisted that she take it off and have it biopsied. I did not think that it was melanoma, but I didn't like it. I got a call 2 weeks later, Jan. 20th, stating that it was melanoma. There is a differential disagnosis of atypical spitz nevus, atypical spitz tumor, and spitzoid melanoma. So, I saw a surgical oncologist, who did the WLE, and SNB on Jan. 29th, with me being 32 weeks pregnant. Frozen section said negative for melanoma...big sigh of relief. BUT...On Jan. 31st, we got the phone call that there were actually "rare single and small groups of cells in one sentinel node." What a complete bummer. The biggest focus was 0.3mm.  Regardless, there was something found in the lymph node, which puts me at 3a...I cannot have PET/CAT scans done until my daughter is born. I am a WRECK. Now my question is...my dermatologist and a family member of mine who is also a dermatopaholoist have both said that my diagnosis can actually be "somewhat less aggressive than a convenional melanoma." Has anyone else heard this? The breslow depth was 1.45, non-ulcerated, no mitotic rate was specified, although I know that there were some cell seen in mitosis.I am just so confused. I have also researched that fact that atypical spitz tumors can and do metastasize to lymph nodes. So the whole differntial diagnosis thing is really really confusing to me. I am not saying that I don't inded have melanoma, I am just so confused. I know that many people who are 3a stay that way, and some don't. I am realistic. Also I'm a wreck, and at times I feel like it's the end of the world. I would really really really appreciate any info. that you all can give me. Thank you...

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Michelem's picture
Replies 5
Last reply 2/24/2014 - 10:34am
Replies by: Michelem, Gene_S, POW, Janner

We're in the ER because my husband seems to have a sudden blockage. We don't know if it's the melanoma - he has many mets in the abdominal area - he is also on ipi, and had many lymph nodes removed in the groin area. He is being catheterized now but I'm not sure ER staff fully "get" all factors.

has anyone else had this experience.

MicheleM

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kpcollins31's picture
Replies 8
Last reply 2/24/2014 - 9:51am

So I had my surgical follow-up earlier in the week... healing really well, feel great. We discussed the biopsy results, which were confirmed as melanoma (metastasis to the small bowel). Margins were tested and clear. In addition, my surgeon removed 20 lymph nodes in the region... one of which tested positive for melanoma. Bottom line is I am now stage 4 NED.

We discussed treatment options... when you are NED, they are fairly limited. Interferon, clinical trials, or watch and wait. I chose watch and wait with the 3 month scan frequency and I feel very comfortable with it. Am I crazy? I fully expect to have a recurrence at some point... not sure if it will be 3 months or 3 years (or 30 years for that matter), but I hate to start firing my treatment bullets too soon. I do not believe interferon is effective. Some current clinical trials seem to be showing a lot of promise, but I do not want to take something now that might rule out a better treatment down the road. My thought process now is to get my body strong again following the surgery to prepare for the next battle. Any thoughts on this approach?

Kevin

 

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GeeCee's picture
Replies 6
Last reply 2/24/2014 - 1:25am
Replies by: GeeCee, Anonymous, Charlie S, jim Breitfeller, POW, Janner
Hi, I'm trying to find detailed survival and adverse event statistics so I can advise my stage IV 70 year old fathe with metastatic sites in the liver and both lungs.
 
We're trying to decide whether to start chemo (Bacarbazine) whilst waiting for another liver biopsy looking for any mutation (the first biopsy missed all cancerous cells!). We expect this to take 4 weeks (in the UK on the National Health Service).
 
I know that Bacarbazine is ineffective in 85% of cases! but that's for all patient groups! what's its efficacy for 70 year old men?
 
Similarly, Bacarbazine is considered well tolerated, but again that's for all patient groups, my father is not in good health. What are the instances of adverse events for him likely to be?
 
Can anyone point me at studies that publish these detailed statistics please?
 
Many thanks.

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JoshF's picture
Replies 22
Last reply 2/23/2014 - 6:43pm

It's been a long road since I was desperately posting in Aug/Sept. For those of you who have been following I opted to do Promtheus Labs Trial/Study of ipi + IL2 randomized combo after recurrence in rt cheek and ultimately mets to lungs. Went through 4 doses of ipi...side effects were itchyskin/rash & hypothyroid which we're still trying to get under control. Then did 2 rounds of IL2...took 11 of 12 bags each time...rough treatment but I was well prepared after hearing from some of you notably Jerry from Fauq and Rebecca & Bob. I've been out of hospital 3 weeks now...feeling pretty good.

I had Pet scan Monday and received results  yesterday. Lung nodules gone...NED!!! I was shocked and relieved. There was mild uptake in rt cheek but doc said this is consistent with scarring/healing. Still makes me nervous...that's where it all started...and I had surgery in September. That sound right? I get aggravated with myself because this is news we all want to hear and though I'm happy...seems like I can never fully accept it. 

I'm pulling and praying for all of you out there...this is one tricky disease. I know there's some promising treatments on horizon and my wish for 2014 is that they continue to come to fruition and benefit all of you courageous warriors.

Best

Josh

Let's work for better treatments....for a cure!!!!

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