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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beccia1's picture
Replies 5
Last reply 10/4/2011 - 2:40am

my orginal melanoma came back after 41/2 years, i also have myeloma at the present time.

 

i am waiting the results of my genetic testing, but the braf test was negative.

 

waiting results next week of the c-kit test.

 

my oncologist at mass general said because of melanoma and the myeloma if both test are negative 

there is not much he can offer me.

 

i was wondering if  anybody would have recommendations.

 

beccia1

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dutchhook's picture
Replies 3
Last reply 10/4/2011 - 1:05am
Replies by: dearfoam, kylez, Charlie S

This bulletin board has been great. We've posted some miraculous results from the B-Raf medicine, Zelboraf, which shrunk all of my wife's tumors by 90% within two months. We've read some awesome stories too. We;ve tried to only post answers and contribute, but now we could really use some perspective.

Now, the melanoma is growing rapidly. Something we were kind of expecting once the B Raf was no longer effective.

My wife has numerous spots in the brain, the femur and hips. There were 4 brain tumors, with the largest being 1.1 centimeters.

: About 10 days ago, she started  complaining of not being able to concentrate and everything was taking twice as long. She then went into surgery to have a rod put into her femur because of an impending break. When she came out, she was disoriented, and had difficulty speaking. I have had to tell her three different times about the surgery on her leg, because she completely forgot what was done. The doctors said she could go into hospice or into whole brain radiation, with the whole brain radiation giving her a 50/50 chance of living a year. She's a fighter, so she chose to do whatever she can do to fight this horrible disease.I've also had to re-explain this situation two more times. It was bad enough the first time.

The doctors assured me the disorientation was the Oxy, but she's been on the same or higher dose of Oxy for 6-7 months and has functioned fine. I told them over and over that it wasn't the pain meds. She just started whole brain radtation a week ago. We finally got the doctor to raise the dose of Decadron from 2 milligrams to 12 milligrams per day, and that helped a lot for a few days. Now she's back in the soup. I got home from work today and she can't answer any questions but yes or no and can't complete an entire sentence. She can't function, and when I ask odd questions like "Are you green today?" or "What did you think of the snow outside today?" she answers with yes, or a gentle nod.She has this blank stare, so it's really scary.

My daughter is considering moving her wedding from January 7th 2012 to 3 weeks from Saturday because she just wants her mom to be there.

My question is this. Could this be from the brain swelling? Is this a symptom of the tumors affecting her thinking? Can whole brain radiation cause this within a day or two? Does anyone think the disease is progressing rapidly? I called the surgeon again tonight and he just said it was from the swelling and increased the decadron from 12 mg to 16 mg per day.

 

 

 

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nicole's picture
Replies 13
Last reply 10/3/2011 - 11:51pm

Hey everyone! some of you may remember me from years ago... my husband Sean passed away from melanoma in august, 2008...  Since then my life has been completely different! our daughters and i have had our good and bad days, but i think we are coping well...   Unfortunately though, the battle still continues for us! our youngest daughter ella seems to have been stricken with a very high risk for melanoma.. Not only has she lost her dad to melanoma, but by the age of 3, she had a spitz nevus removed and had to have surgery to have a descent sized dysplastic nevus removed... She is now 4 and has another 'spot' on her torso that measures 2.2cm by 9mm.. it is about a shade or 2 darker then her actual skin color and it has been there for about 2 months.. She sees a dermatologist regularly and i also took her in to her family doctor as soon as i realized this is a spot that is not going away! (at first i just thought it was a faded bruise). Her family doctor (who has actually been very wonderful with ella and has significantly helped keeping up with her skin checks) has recommended waiting and watching this spot and re-measuring on a monthly basis-her appt. with her derm is this coming wednesday. At first i agreed with watching it, but after thinking about it CONSTANTLY, i have come to the conclusion that i don't want to wait and watch it! I don't want to watch it grow and turn into something atypical! Yes, it looks harmless now, so why can't we remove it now before it does turn into something harmful?! I called her doctor back and let him know how i feel about the situation, but it is not as simple as just going to get a quick biopsy a the dr.s office-she will have to have a referral to her pediatric surgeon and they will have to put her out... so there are risks with that!  I have a feeling her dermatologist will say the same thing about watching and waiting. I guess this post is more of a venting post then a question!  Anyways... any suggestions for me? Any points that i should bring up with her derm to as WHY she should have this removed?! Anyone that has had any experience with pediatric melanoma-what did your childs melanoma look like?! I do know that a majority of childhood melanomas are not necessarily presented as a melanoma would during adulthood.. Does anyone agree or disagree that the risk is higher to leave it on her then the risks that may come by having it removed?! Any comments are appreciated! Thank you,

Nicole (Widow of Sean)

never, never, never give up! 

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jaredmiller16's picture
Replies 3
Last reply 10/3/2011 - 10:37pm
Replies by: Anonymous, jaredmiller16, lhaley

Just saw this on the news. Has any of your derms talked about it? www.melasciences.com

I thought this was a dream come true! Especially for those with several atypical moles, such as myself. In fact, I can count on one hand the number of normal moles I have. My body is covered with weird looking moles. I sometimes feel like an idiot when I go to the derm because I stress and sweat about a new change in a mole, but it always turns out to be fine (except for the one HE found and it was a newer mole).  My moles are notorious for change, but its never anything like shape, size, border...Etc, However, I think this tool would give me more of a peace of mind.

Funny thing is,  I talked to my derm about it and he was not a huge fan! Do you think its because it will cut the $$ with the amount of his biopsy's. He created a little program of his own that does serial screening for patients like myself with high risk factors. His office basically hounds me every six months to come in for a screening. At first, I was kinda annoyed, but he then told me they have not lost a patient who participates in the screening for 15 years! All the melanomas they have caught were in their early stages. After what happened to my mom, I stopped getting annoyed.

But, I was kinda bothered that he would never consider such a great device! This could catch more Melanomas In Stiu...

What do you think?

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jaredmiller16's picture
Replies 9
Last reply 10/3/2011 - 7:58pm

 

Been seeing a derm twice a year for the past five years. Nothing has ever come of it, but my last visit he decided to remove a mole that looked different than it had in the past. Turned out to be Stage 1. He said we caught it early and I have 95% survival rate....But I am not buying. Too many times I have heard of people being diagnosed with Stage 1 and then three, six, or twenty years later they have a reoccurrence. So now, I am stuck in the dead depression funk knowing any day, I am going to be six feet under.

Why does melanoma do this? Especially in comparison to to other cancers? Should the treatment for Stage 1 be changed? Is early detection really the key? Or does it just buy you a few more years? Sorry to sound grim about all this, but so many close to me have died of this evil thing and I think its just about time they found a cure! My mom's doctor said Melanoma is a cancer they're the closest with, but, I'll take that with a grain of salt. Thoughts?

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JerryfromFauq's picture
Replies 5
Last reply 10/3/2011 - 3:50pm

This is a great article that discuses melanoma signaling pathways, the molecular drivers of this disease, molecular subtypes and developing proposed treatment guidelines for each subtype, including specific assays, drugs, and clinical trials. labs that conduct various tests, etc.  This information is written at a laymans level and is fairly easy to follow.

 Drug [<>] Company [<>] Status [<>] Clinical Trial [<>] Target

I have only posted the Abstract here.  The real meat is at the URL.

http://mmdm.cancercommons.org/ml/index.php/A_Melanoma_Molecular_Disease_...

I. Abstract

While advanced melanoma is one of the most challenging cancers to treat, recent developments in our understanding of the molecular drivers of this disease have uncovered exciting opportunities to guide personalized therapy decisions. Genetic analysis of melanoma have uncovered several key molecular pathways that are involved in disease onset, progression as well as prognosis. These advances now make possible classification of melanoma into molecular subtypes (unlike traditional histological subtypes), with proposed treatment guidelines for each subtype, including specific assays, drugs, and clinical trials.

This paper outlines such a 'molecular disease model' that can be used by both researchers and clinicians- clinicians could use it a guide in their therapy decisions and contribute to it with real-life patient outcomes data whereas researchers could refine molecular subtypes based on their findings and use clinical outcomes data to guide their research. This 'dynamic' paper will reflect latest scientific, clinical and technological advancements by providing a rapid process for submission, contextualization and dissemination of information and data.

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

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JerryfromFauq's picture
Replies 2
Last reply 10/3/2011 - 3:44pm
Replies by: ValinMtl, Hawaii Bob

http://www.sciencedaily.com/releases/2011/07/110720142513.htm

Breakthrough in Melanoma Research: Protein Suppresses Progression of Melanoma

ScienceDaily (Dec. 23, 2010) — In a breakthrough that could lead to new treatments for patients with malignant melanoma, researchers from Mount Sinai School of Medicine have discovered that a particular protein suppresses the progression of melanoma through regulation of an oncogene, or gene responsible for cancer growth.

***************

"Researchers then manipulated macroH2A levels in melanoma and found that when they removed it in the early stages of the disease, the melanoma progressed more aggressively both in growth and metastasis. Adding macroH2A to late-stage aggressive melanoma cells created the opposite effect."

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

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glewis923's picture
Replies 4
Last reply 10/3/2011 - 12:07pm

Dear ALL fellow Met-mel fighters:  Just had MRI /CT scans:  very grateful about results:  

1)  No spread to other organs.  

2) Lung numerous tumors have shrunk dramatically or are gone.  A couple just stable but small.  Big medial hilar region that poped up also regressed.

3) Multiple brain tumors have mostly shrunk (regressed) or just stable.  Some or most could be just plain old dead! I hope.

4) Been on Zelboraf for almost 5 weeks......developed some "sores" that Mayo Dr. on Friday is convinced is Shingles!  I can deal with that, but strange.  Anyone else heard of such?

Background:  Since May 2009 several chemo & interferon.  Feb. had 7 brain tumors SRS zapped, and 10 days WBR.   Did regimine of Yervoy March thru May of 2011.  Started Zelboraf Aug. 19th? and still on it.  

I should have already been dead- Just very thankful that something- all of the above perhaps- has kept me mostly stable or regressed; but not naive enuff to think i'm anywhere close to being "Outta the woods"

 

Love ALL,  Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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FREE SKIN SCREENING in Nashville, TN

Saturday, October 8, 8am, at Church of the Living Word, 51st and Wyoming Ave in Sylvan Park near McCabe Golf Course at the Music City Miles for Melanoma 5k. Get checked by a local dermatologist. For Free!

No insurance is necessary. Registration for the run/walk event is NOT required. First come, first served until 11am.

5100 Wyoming Ave, Nashville, TN 37209.

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JerryfromFauq's picture
Replies 2
Last reply 10/3/2011 - 1:59am
Replies by: JerryfromFauq, Anonymous

This is a great article that discuses melanoma signaling pathways, the molecular drivers of this disease, molecular subtypes and developing proposed treatment guidelines for each subtype, including specific assays, drugs, and clinical trials. labs that conduct various tests, etc.  This information is written at a layman level and is fairly easy to follow.

 Drug
[<>] Company
[<>] Status
[<>] Clinical Trial
[<>] Target

I have only posted the Abstract here.  The real meat is at the URL.

http://mmdm.cancercommons.org/ml/index.php/A_Melanoma_Molecular_Disease_...

I. Abstract

While advanced melanoma is one of the most challenging cancers to treat, recent developments in our understanding of the molecular drivers of this disease have uncovered exciting opportunities to guide personalized therapy decisions. Genetic analysis of melanoma have uncovered several key molecular pathways that are involved in disease onset, progression as well as prognosis. These advances now make possible classification of melanoma into molecular subtypes (unlike traditional histological subtypes), with proposed treatment guidelines for each subtype, including specific assays, drugs, and clinical trials.

This paper outlines such a 'molecular disease model' that can be used by both researchers and clinicians- clinicians could use it a guide in their therapy decisions and contribute to it with real-life patient outcomes data whereas researchers could refine molecular subtypes based on their findings and use clinical outcomes data to guide their research. This 'dynamic' paper will reflect latest scientific, clinical and technological advancements by providing a rapid process for submission, contextualization and dissemination of information and data.

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

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ValinMtl's picture
Replies 24
Last reply 10/3/2011 - 12:48am

Well, went back to NIH with a great deal of trepidation!!  GOOD NEWS!!!  After 3 weeks, there has been 27% reduction based on the nodules studied and their diametres.  Did I get that right?  My doctor will provide me with a written report since at times like this it's difficult to understand.  I can certainly see the improvements.  My doctors tells me overall there is a 62% improvement if you do not focus on only the 'analyzed part'.....anyways I was going to wait until I had a proper written report from the doctors on Monday but I've waited long enough, I was petrified to say anything and now I will sing it to the top of the hills.  More detailed info will follow.

It is sooo nice to see something positive for a change.  To show how little is understood about this program, I had a little bit of a bad turn back in Montreal and ended up in the hospital for one day (halucinations)...one oncologist took my son (my son..NOT me nor my husband!!) aside and asked what were his intentions for his mother since she had only succeeded in 2 of 12 bags of  IL-2 and that is not success (well I've got the famous itch right now!!)...He did not take in to account the millions of good white cells (4.28 milllion) re-injected into my body nor stem cells nor radiation....Go figure.  I told Shaun to ignore his comment.

Dr. Hessman was my fellow and both Dr. Yang and Dr. Phan came by to congratulate me and apparently Dr. Rosenberg is just delighted.  They told me I am healing faster (ouuchh, my whole body aches especially the lymphedema leg still hurt) than many because of my determination and positive attitude....When I was being offered morphine and palliative radiation in Canada, I knew it was time to take things under my own wing. THANK YOU WARREN, your e-mail was such a God send and wonderful timing.  I had a date for palliative radiation in left groin within a day...I stopped it and spoke to NIH first.   IT WAS A DEFINITE DO NOT DO THAT UNTIL you see us.  Thank goodness.  If they had, they would not have been able to remove an area unafffected by radiation.  Hard qualifications all..in all..  BUT got through and was randomized to TBI side of trial same as Warren 5 years ago.

Combination treatment might be the wave of the future.  I had yervoy which I responded to very well but left behind two growths in left groin and other growths...TIL just might have killed the rest of the evil one!  One can pray.

God bless

And in honour (both past and present) of all our dear friends that fought so hard and volunteered for us to reach this new level of treatment for stage IV.   Val

PS  Warren how are you doing? I pray they have come up with a treatment for your Merkel cell carcinoma.  Val

Live Laugh Love Nothing is worth more than this day!

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jax2007gxp's picture
Replies 6
Last reply 10/2/2011 - 9:55pm
Replies by: jax2007gxp, KatyWI, Richard_K, Anonymous, Beckyinsandiego

Hello friends,

Yesterday I was conducting "paper management" and discovered the mammogram order which I failed to get done this year.  It made me start wondering....would the PET/CT scan show other kinds of cancer beyond mel?  I know my scans revealed a likely thyroid issue (not cancer), so I'm thinking it could identify other hot spots where a different kind of cancer may exist.

Thanks for your feedback!

Jacki

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Beckyinsandiego's picture
Replies 10
Last reply 10/2/2011 - 8:57pm

My original melanoma was back in 1999 and since then I have had 4 recurrences. I am Stage IV and have activity in my sternum. My doctor wants to put me on Ipi and I was hoping to hear from fellow melanoma warriors out there about their experience with Ipi. I would like to hear success stories of course but I know that it does not work for everyone. Please share your story with me if you can. I know I am going to beat this disease like I always do. Keep positive because it is over 1/2 the battle.

Take Care of Yourselves

Becky from San Diego

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Anonymous's picture
Anonymous
Replies 1
Last reply 10/2/2011 - 8:53pm
Replies by: Anonymous

Hi Becky,

Before you make a final decision on Yeroy, which could give you severe side effects, you might want to discuss PD1 & PDL-1 with your doctor.

It is a immunology treatment like yervoy with less side effects. So far, data as shown PD1 & PDL-1 drugs are more effective than Yervoy with very mild side effects if any.

Since you are at Angles Clinic, I heard that PD1 & PDL-1 clinical trials would be opening at Angeles Clinic soon.

I would definately ask you doctor about PD1 & PDL-1 before getting your insurance approval for Yervoy.

It would be greatly appreciated by all of us if you can CONFIRM  if PD1 & PDL-1 clinical trials will be opening soon at Angles Clinic. I think that all of us want to know where we could get a PD1 & Pdl-1 drug if needed.

Thanks & good luck with your decision for treatment

A.

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nickmac56's picture
Replies 5
Last reply 10/2/2011 - 8:01pm

My wife went in for her second gammaknife treatment to pick off two brain tumors. Her scan was ten days ago. They did the pre-treatment MRI this morning and found three more - all three had emerged during this ten day period. Obviously not a good sign - means the cancer is fast growing up there. She was able to have the gammaknife treatment and they went after all five. They will scan again in 30 days. But likely the next treatment for her head will be whole brain radiation. She's pretty emotionally distraught this evening, even though she came through it fine. No side effects yet, even though one was in the speech center. 

We have the weekend to recover - then she has a golf ball size sub-q tumor on her upper arm removed Monday. Then a week later - maybe start a new chemo. 

This disease is just terrible.

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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