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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My mother has been recently diagnosed with stage 4 Melanoma.  It is in her lungs and lymph nodes.  We have just received the results of the BRAF mutation and she is negative.  We are all confused about this and I am having a difficult time finding information online to tell us if this is a good result or a bad result.  All of these posts have been very helpful to us and I was wondering if any of you knew anything about BRAF mutations?

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rjcravens's picture
Replies 5
Last reply 7/31/2012 - 6:23am

Question- About a month and a half ago I had this upper resp infection that made its way around out house. Well, the upper resp. part improved but I had this awful cough that would not go away and was terrible at night or anytime I laughed and did any activity. So the week before last, I went to doc. (primary family) He said I prob had some stubborn brochitis and gave me advair, z-pak, and cough syrup. Well the cough is better. However, the entire time I have had this stabbing pain that feels like its between my lung and spineand has a lingering burn. When i cough it hurts terrible, but even when I am just sitting here this stabbing pain comes and goes. I tried aleve and nothing. But when I went to doc they did a chest xray when they dx the bronchitis. Wouldn't it have shown up on chest xray if something to be concerned about?

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deardad's picture
Replies 14
Last reply 8/6/2012 - 7:26pm

Sorry no news is good news at the moment.

I am loosing my dear dad, he can nearly no longer walk and his right arm is now going numb.

The damm flu has robbed him of sleep for 4 nights and taking away his final quality of life.

I feel ripped off and desperately sad.

I hate melanoma.

Nahmi from Melbourne

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Anonymous's picture
Anonymous
Replies 13
Last reply 8/4/2012 - 10:01pm

I recently had a very dark mole removed. I have lots of moles and this one definitley looked different. About the size of pencil eraser. I had punch biopsy and dr took margins and I received 4 stitches. She also talked about plaque. She called one week later and said they could not rule out melanoma so they are sending it on to expert in California. Wondering how worried should I be? Dr in California is the worlds leading authority on melanoma. Is this just for liability? Not sure what to think.

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bikerwife's picture
Replies 1
Last reply 7/31/2012 - 7:50am
Replies by: deardad

Had 5 mets removed from brain in feb sucessfully. Lastest scans show 2 more very small ones not sure if new are was there before and 2 little to see. Due to do gamma knife again in aug.

He is taking zelobraf and in four weeks all his visible tumors have completely disappeared. Hoping one inside chest cavity on one on kidney are shrinking also.

I'm worried. About doing gamma knife again but our dr assures us it will be fine and that they can get them.

What God leads u to he will. Lead you through

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Anonymous's picture
Replies 4
Last reply 7/30/2012 - 6:37pm
Replies by: rbruce, Candi13, LynnLuc, melmar

Hi Margo,

 

How are you doing on the Merck trial??? Any side effects?

I think that you mentioned your second set of scans would be in July. I hope that you found no cancer & NED.

My brother, was dx 2010-stage 4. He is on this trial in San Antonio. His last scans showed 50% shrinkage on 3 tumors- 2 lung, and liver.

It is nice to share info on these trials.

Anyone else on this Merck trial??/ Please post how you are doing so we can share hope & encouage each other.

Wishing everyone the Best.

Tim's Sister, Annie.

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Vega0624's picture
Replies 4
Last reply 7/29/2012 - 8:58am
Replies by: Gene_S, Anonymous, deardad, Harry in Fair Oaks

My father was first diagnosed with melanoma cancer back in 08. It was found early and removed. Earlier this month, my father went to the hospital with pneumonia. The doctors had found that melanoma had actually spread, and found bits of it in his right lung. During this week, the doctors discovered both lungs mets (the right one being worse), liver mets, brain mets (one small tumor and just recently today, 2 more). No word yet as to whether he'll undergo radiation therapy.

My father is 64, but is incredibly healthy for his age. He is very fragile at the moment though since he recently had a bronchoscopy to treat the meta in his lung. He also has had a wounded leg for the last 50 years which is potentially infected. It may be the cause of high white blood cells in his system, but has still lived a normal life with it.

I've done research on metastasis melanoma and have found an average range of 2-8 months. I have past family members that were outliers of that statistic. My grandmother was given 3 months and ended up living for 4 more years and she too had melanoma. My aunt was given 6 months but ended up living 11 years and she had throat cancer. However, neither of them had brain metastasis.

The doctors won't tell us a timeline because they aren't sure themselves, but I need to know. I am currently attending UC Irvine and classes are starting the middle of September. It is about 2 hours from home so I won't be going back often. I have come to accept that in his condition, he doesn't have long so I just want to prepare myself. I don't want to receive a phone call from my family one day in class, or during a test, or in the library, but when it does happen, I just want to be ready. Has anyone had a similar experience like this, or know an estimated timeline?

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LynnLuc's picture
Replies 9
Last reply 7/30/2012 - 8:47pm

Stage 4 NED 2 years 4 months!!~ Lynn

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Anonymous's picture
Anonymous
Replies 7
Last reply 7/29/2012 - 7:48pm
Replies by: Angela C, Anonymous

Angela,

How are you doing since your IL-12 treatment at NIH. I hope your scans showed that the treatment is working.

Wishing you  the BEST & NED status.

Mary

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fdess056's picture
Replies 2
Last reply 7/30/2012 - 5:22pm
Replies by: fdess056, LynnLuc

Hi, all Anyone experience or hear of mets inside the stomach?  My most recent PET scan showed activity that has just been confirmed as melanoma. I also have mets in the knee bone, lungs and brain.  I completed yervoy in March, had brain SRS in March and May.  Lung mets shrunk 65%, everything else remained stable.  We assumed yervoy was working.  Now this new situation.  I'm on steroids and scheduled to start Zelboraf on Tuesday. Any feedback would be appreciated

Thanks!

Frankd Brooklyn

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Steve2142's picture
Replies 12
Last reply 7/31/2012 - 7:04am

Hello -

A small lesion with a high mitotic rate was removed from my cheek two weeks ago.  The SLNB showed three microscopic deposits in one of two nodes that were removed.  I go see the Doctor on Tuesday to discuss a CLND in the neck to remove 50 more lymph nodes.  This surgery makes me nervous but I feel relatively calm in general as there is nothing I can do about my cancer or prognosis today...except read, learn, and hear what you have to say.  I am in the process of preparing a bunch of questions for the consultation including if this is Stage IIIA or B (due to the mitotic rate).  I have a pet scan Friday - I assume this is to determine if it has spread to the brain/liver/lungs/bone thus making a CLND irrelevant.

Please share your recovery story if you had a similar CLND.  How long before you went back to work and felt relatively normal physically?

I have also been separated for a little under a year and this adds a little relationship complexity to the situation.  Feel free to share on this topic as well.

Thank you!

Steve

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Nell's picture
Replies 6
Last reply 7/30/2012 - 1:37pm

Have 2 different opinions.  Following 3rd local reoccurance in the right axilla, radiology oncologist wants 5 1/2 weeks of radiation to gain local control. My oncologist at Siteman Cancer Center in St. louis says radiation is not very effective for systemic control..if I should move to Stage IV...wants me in a clinical vaccine trial.  I see him next Tuesday, and I would like to know more than I know now...Is it possible to have radiation and then still be accepted for a trial after healing? Or would doing radiation knock me out of the trial? A vaccine sounds good..but I know nothing of the study yet... Thanks for help.

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

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himynameiskevin's picture
Replies 10
Last reply 7/30/2012 - 12:23am

Just wondering if  anyone here of has had, or heard of substantial benefit from doing IL2 a second time, or being on temodar, or trying whole brain radiation?

These are a few things, up in the air, that I may trying that I haven't yet..

Sometimes just a single story of success is enough to get that spark, that optimism, and make these times of waiting easier.

Thanks, -Kevin

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Liz C's picture
Replies 0

After 9 years NED, I have a new primary. Here we go again.

Stay vigilant!

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Liz C's picture
Replies 0

After 9 years NED, I have a new primary. Here we go again.

Stay vigilant!

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