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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Replies by: stars, davekarrie, Tim--MRF

Hello all,

I am wondering if there are any stats on the most durable treatment for widespread stage 4 mel. I have read that there are people out there more than 5/10 years who are NED.  Has there been any studies on these individuals and treatements that may be the most durable with prolonged NED?  I know everyone is different with regards to age, disease and other things.

Just can't imaging not being here for my family and will do anything to get to NED! Hate this disease.

Love to you all, keep up the fight!!

Live life to the fullest and enjoy each day! #noonefightsalone

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DZnDef's picture
Replies 2
Last reply 8/17/2015 - 4:23pm
Replies by: DZnDef, Anonymous

Can anyone tell me if this is something to be concerned about?  I have never seen anything like it.  This person has a 1cm dark mole in the center of their back that's always been there.  But it also has a large white patch all the way around it.  Like a perfect circle of whiteness that is at least double the size of the mole.  Does anyone have experience or insight on a situation like this?  

Does the answer change if this mole is on an 11-year-old girl?

Hoping I'm just being paranoid due to my own situation.  This precious girl is my niece.

Maggie - Stave IV (lung mets unknown primary) since July 2012

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Hayden30's picture
Replies 3
Last reply 8/17/2015 - 10:18am
Replies by: Anonymous, Mat, jamieth29

 

ive been on mekinist and tafinlar for 2 weeks now, and in that time I've had several subcutaneous tumors that I can feel get smaller and some I can't even feel anymore. I know that the drugs are working, but in that same two weeks I had a tumor in my brain grow from 4mm to 20mm!! I've talked to two melanoma specialists that say the drugs do cross the blood brain barrier, and that's the reason my doc put me on them to begin with. Now I'm reading about it and getting conflicting info. Does it take them longer to work on the brain possibly? 

 

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jahendry12's picture
Replies 23
Last reply 8/19/2015 - 3:24pm

Very sad news this morning. Our brave warrior known on this forum as Jerry from Fauq has been sent to be with God. He was one of a kind. He defied all odds and reminded everyone in the melanoma community that they are not a statistic and there is no expiration date stamped on them.  He beat the odds for 8 years so he could help educate and support others. A huge heart, a wealth of knowledge and a kind, giving, humorous man. He was the first one to reach out to me on chat when my husband was diagnosed 4 years ago.  You will be missed T Jerry Ellis ❤️

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DianaD's picture
Replies 6
Last reply 8/15/2015 - 8:48pm

Waiting for biosy results over a weekend is the pitts!  I found this information about why biopsies can take so long: 

 

What happens to the skin sample after the biopsy is removed?

After the biopsy, the skin sample is fixed in special solution, and thin sections of the tissue are cut and placed on microscope slides. The slides are stained for examination by a doctor (usually a dermatologist or pathologist). Sometimes specialized stains are used to examine for antibodies, immune proteins, and other markers of certain diseases. Initial routine biopsy results can be obtained in 48 hours or less, while specialized staining techniques can require a much longer time until final results are available.
I had the mole on my back removed this past Monday at the University of Chicago.  The doctor told me that a dermopatholgist would look at it the next day, but that it could take up to two weeks for me to receive the pathology report. 
Separately, I've just been diagnosed with liver disease, of unkown cause.  I'm flying to Chicaog again on Monday, to see a liver specialist at the University of Chicago, on Tuesday morning.  
I'm hoping that it's not the worst case scenario, i.e., melanoma with mets to the liver. 
Although I live in Ann Arbor, Michigan, which is home to the University of Michigan Health System, I was able to get appointments for both the biopsy and the liver consultation more quickly at the University of Chicago.  I'll use the U of M appointments for second opinions. 

DianaD

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melissalynne's picture
Replies 1
Last reply 8/15/2015 - 4:36am
Replies by: stars

About 2 weeks ago I had a place come up next to my eye. It appeared all at once and resembles a pimple but never has went away. It is pink. Does this sound like a skin cancer and if so what type?? I had melanoma in situ a couple of months ago on leg but this spot looks nothing like that did

Melissa Riley

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stars's picture
Replies 14
Last reply 8/20/2015 - 10:56am
Replies by: Bubbles, Anonymous, Mat, jpg, becky15, stars

Hi

Just a shout out to fellow thin-mellers (well, I'm not thin, but I've had three thin mels).

This is a 2012 study from my home state, Queensland aka skin cancer capital of universe.

http://espace.library.uq.edu.au/view/UQ:275517

It shows 20-year survival for people with thin mels to be 96%.

Three things I like about this study:

- I like survival stat % beginning with '90'

- I like survival span of 20 (vs 5 or 10 years) - for me this translates into seeing my young kids into adulthood, not teenagerhood)

- I like that it's from 2012 and surely, if anything, things have gotten better since then with all the new therapies.

Hope some other MRFers get some solace from this (reasonably) good-news study.

Stars

 

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BrianP's picture
Replies 13
Last reply 8/29/2015 - 2:32pm

As many of you know I have been on a sequential trial of ipi and nivo for the last two years.  I started the trial with 2 tumors in my abdomen.  Those two tumors are now about 50% of what they were at about 2 and 1 cm.  I had my last trial infusion of nivo on Wednesday.  For the last couple months I've been thinking about what to do at the end of this trial.  All along I've been thinking about continuing treatment for at least another 6 months to see if more data becomes available on durability and recurrence of patients who have stopped treatment.  I traveled down to Moffitt a few weeks ago and talked with Celeste's favorite Doctor, Dr. Weber.  His recommendation for me was to stop treatment.  He primarily based this recommendation on his first nivo trial.  He said he had 15 patients who either made it to 2 years or made it a significant time before having to stop treatment due to side effects.  Of these 15 patients none have had a recurrence.  I didn't ask him how long it's been since these patients stopped treatment but I would imagine they are in the 1 to 2 year range now.  He also pointed out those patients were on a lesser dosing schedule than I've been on.  I asked him why so many patients who respond seem to have a response like me rather than a complete response and he said it appears that our immune system "walls" off the melanoma.  His believes that the nivolumab should be given to maximum benefit (achieve NED or achieve stable disease) plus 6 months. 

I have my next scan in about a month followed by a CT guided biopsy.  In the meantime I guess I'm having a "vacation" from nivo.  Based on the biopsy results will determine my next course.  If it comes back as necrotic I'll be done with treatment.  If it isn't necrotic I'll be looking at resecting the remaining tumors.  Dr. Weber said don't be surprised if it's not necrotic. 

Anyway, just wanted to share Dr. Weber's thoughts with those in the same boat as me.  Coming off the drug cold turkey is not an easy thing to do, especially when you are virtually experiencing zero side effects.  If anyone has had any similar conversations with their doctors I'd be curious to hear them.  I know Laura's Dr. Hodi has a very different take on this. 

Brian

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davekarrie's picture
Replies 8
Last reply 8/24/2015 - 12:54am

Well, it is no unfortunately official, my biopsy in my abdomen last week is positive for melanoma. So its in my lungs, abdomen and a C7 neck vertebra. I am most worried about the neck at this point.  We go back to mayo aug25, they are still testing for the gene mutations to determine treatment. Just so many questions, will they operate on any of the tumors?  The radioligist said the abdomen tumor is free floating, I am starting to get a bit of pain at times in my neck, don't know if thats from the met or I am just paranoid. I feel great otherwise, and am ready to fight this beast!! Much love to all #noonefightsalone!

Live life to the fullest and enjoy each day! #noonefightsalone

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green7ea's picture
Replies 6
Last reply 8/19/2015 - 12:46pm
Replies by: green7ea, dfeng, CHD

Hi everyone,

My cousin, 32 and otherwise very healthy, was recently diagnosed with oral mucosal melanoma.  We've been on the hunt for a specialist or cancer center in Canada that have experience in treating this form of cancer.  Right now we have an option to treat him in China for the short term, as they have more experience with this type of cancer.  But we need to figure out an option for his long term care within Canada, can't keep going back to China.  Does anyone have any knowledge of who/where we should go to for help on his treatment?

Thank you so much for your help!!

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Anonymous's picture
Replies 3
Last reply 8/16/2015 - 10:51pm
Replies by: cricket, Mom2Addy, DianaD

Can someone recommend a good dermatologist who is up on melanoma in Charlotte, NC? Thank you! 

Cricket

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Anonymous's picture
Replies 1
Last reply 8/14/2015 - 4:30pm
Replies by: DianaD

Can someone recommend a good dermatologist who is up on melanoma in Charlotte, NC? Thank you! 

Cricket

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So, I am wondering if any of you know of anyone who has used cannabis oil for treatment. Would love to hear feedback. My cousin's mother in law had an inoperable brain tumor & was given 6 months to live. She got on this cannabis oil and in 5 months the whole thing is gone. The doctors are amazed. (I have the pictures) I do realize that many of us can not even get our hands on this oil & I really wish that would change.

 

Have you changed your diet & if so, to what & what improvements have you seen in your health? For me, I am trying to buy more organic, GMO free foods as well as grass fed pastured type meat. I recently started adding gelatin (Great Lakes brand) as well as magnesium into my diet. I am feeling a bit of difference with this and sleeping better.

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Hi All! Sooo, here I thought maybe, just maybe that I'd never see the likes of melanoma again. I got a shocker. Well, in a way, that little voice seems to quite never disappear...but, it was a good run for over 10yrs. 

A little background: I was first diagnosed with 2C back of upper right arm (lymph nodes were clean) & went through a full year of high dose interferon. I never lost weight on it, if anything, I still had my appetitie. I was a lot more sensitive to salt as I remember. I went to the infusion room at the hospital everyday for the first 30 day & then I gave myself a shot in the stomache 3x a week for the next 11 months. I had excellent PPO insurance at this time.

 

Fast forward to today & no Insurance: A few months ago I had a bit of a nodular bulge in the abdomen area---I thought it might be a hernia. I went to a community type clinic and they said it was cellulitis--prescribed me a very strong antibiotic I had never had before for 10 days. The side effects were horrendous. On day 8/9 my whole body was on fire & I was red & blotchy...then I looked in the mirror and was covered head to toe with little red dots. I freaked out. Found out after calling the pharmicist that is an allergic reaction...popped a few benadryl. It took several days to over a week to get it out of me. So, the little bulge remained, but, now started to change...went to another clinic and they said it looked like an abscess and to go to the ER. The ER admitted me to the hospital for surgery. They believed it to be a hematoma. They did make comments as to the fact they have never seen anything quite like it before. (now here comes that little voice) Surgery went well & I was impressed they didn't try and kick me out of the hospital sooner since I don't have insurance. I was there a couple days & they wanted to keep me a 3rd day (but, I had a dog at home & convinced them to let me go) They sent samples off to pathology. I learned how to pack the wound & change my own dressing, but, also utilized the free clinic services. A few weeks go by & I mention that close to the incision area that it feels tough & denser. I also had a follow up appt with the surgeon (he didn't charge me for the visit & cut what I owed in 1/2) he said it was healing beatifully...so I went with it. More time passes and I go back to the surgeon's office & that's when I found out the bad news. He said it came back as melanoma. He was shocked. I am, too and frozen.

So, in the last couple weeks it has redeveloped again and gotten larger & I will now have to self admit back into the ER to get surgery again. I. AM. SCARED. 

I am looking for any guidance, tips, support, friendship, etc. I need to get a plan together, but, everything is moving so slow, but, melanoma is not on any schedule.

Thank you for reading my long-winded intro!

~Cindy

 

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Tim--MRF's picture
Replies 5
Last reply 8/14/2015 - 10:53am
Replies by: Tim--MRF, Ed Williams, Anonymous, Bubbles

We have been following discussions with the FDA around approving Opdivo (nivolumab) as a first-line therapy for metastatic melanoma. Currently the label require patients whose tumors have the BRAF mutation to have BRAF therapy first, then Yervoy (ipilimumab), and only take "nivo" after those approaches have stopped working or proven intolerable. Patients without the BRAF mutation must progress on ipi before taking nivo. 

The company who makes nivo, BMS, has applied to expand the approval so the drug can be given as the first treatment, instead of the second or third. The FDA said it would make a decision by September 30. They have now announced that the deadline for that decision has been pushed back by two months. What does this mean and how will it affect patients?

First, the reason for the delay is that BMS has recently submitted a large amount of new data focusing on patients with the BRAF mutation. The FDA simply needs time to review this data.

Second, based in the initial data the FDA could have approved nivo as first line therapy only for patients whose tumors do not have the BRAF mutation. With this additional data they are more likely to take action for all patients regardless of BRAF status.

Third, the oncology drug section of the FDA has done a good job recently of acting before their deadline, and sometimes well before the deadline, so we can hope this will be the case in this situation.

Fourth (and last!), many oncologist are prescribing either Opdivo or Keytruda (which has the same restrictions) as first line therapy despite what the label says. This is in keeping with other guidelines and has not generally faced any pushback from insurance companies around coverage.

The bottom line is that the delay is not a cause for alarm and may result in more patients having access to anti-PD1 therapy faster.

 

Tim--MRF

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