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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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. 


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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! 


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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! 


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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 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!



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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.



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Skywalker's picture
Replies 11
Last reply 9/26/2015 - 8:12pm
Replies by: Skywalker, Anonymous, _Paul_

The 'age spot' on the back of my nose that my dermatologist froze twice across the last few years and had me pay for the freezing since it was 'just a cosmetic issue' turns out to be melanoma in situ, after I now insisted on a biopsy, given that I already had an SCC and breast cancer. 

I need to decide whether to get a plastic surgeon or should the skin cancer derm I now found 'cover' the defect? Does it make a difference? 

What kind of staining should be used in the pathology? I read that there are numerous different versions and that some are not chosen because they are expensive. Should I insist on a certain method? 

What kind of grafts or flaps are particularly successful and look the best (I'm a girl) on the back of the nose? 

The doc says he'll ecxise with a .75mm margin; is that good? 

I'd value your input. 

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Polymath's picture
Replies 9
Last reply 8/15/2015 - 4:49pm

I don't recall this topic coming up and have always had my suspicions.  Like Artie, I had every side-effect possible in the extreme when on my first drug therapy Zelboraf.  It was a horrendous experience but my goodness, was it effective.  My tumors, several subcutaneous seemed to melt away in what was days, not weeks.  But after progressing in just three months, Taf/mek combo, then Yervoy, then Keytruda all were easy to tolerate, and (lucky me) had few if any side-effects at all.  But all these were completely ineffective (unlucky me), and now I'm in a clinical trial having exhausted all FDA approved (insurance covered) treatments.

Has anyone else noticed a correlation between side effects, and the effectiveness of treatment or is my case seem unique?

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mkirkland's picture
Replies 5
Last reply 8/14/2015 - 7:03pm

Well since my last post I have had my wide excision on my foot and my slnb which came back positive. My original breslow of 1.5 changed to 2.96 and my Clarks level went from 3 to 5. I meet with my dr again next week to discuss lymph node dissection & scans. I am also in the process of scheduled an apt at MD Anderson which is a large cancer hospital with a great melanoma team. I want to know all my options!! 

But most importantly!!!! My question or really any info anyone can provide would be grateful... I have a one year old littler girl. Could it be possible that I had this melanoma when I was pregnant?? I know cancer can be passed through the placenta. I plan to ask my dr also. Any light that can be shed would be much appreciated! 

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Keepingyourchinup's picture
Replies 6
Last reply 8/18/2015 - 7:49pm

Hi Everyone,

So I have several questions.... I know a few of you on here have told me you received the pegylated interferon treatment but stopped it for mutliple reasons or chose not to go down that road. I started the treatment in June but have decided to stop it as I really don't like what it has done to my quality of life. I am stage 3A and this is really the only treatment I qualify for. I am NED for now but am a newly diagnosed melanoma patient, since April of 2015. I have lost 20 pounds, the fatigue is terrible, and I sleep at least 16 hours a day; I won't go into the rest of the symptoms that go along with this. I decided that I would just "watch and wait" for now as I don't see the statisitcal value in this drug and I would rather have a good quality of life back then to live like I have been since June. I originallly felt like  a whimp for quitting but 5 years of feeling like this is not for me. There are pills to combat some of the side effects; I am on lexapro, zofran, ibuprofen, and they were going to prescribe an appetite stimulant before I said enough is enough. This is all very frustrating, which I am sure you can relate to.

Anyway, my question is how long was it before you started to feel like yourself again after stopping the treatment? Also, I know I have to follow up with my surgeon and oncologist for a specific plan but how often are you receiving PET scans? I had one in June and it was clear but I am not sure what the whole "watch and wait" plan is. I like to be prepared before I see my docs so I can make an educated decision in this process.

Thank you for any help that you can offer.



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Anonymous's picture
Replies 26
Last reply 8/18/2015 - 6:50pm

Just wanted to state that some people need to be anon because of their jobs or not wanting their friends to know their diagnosis.  I know I lost many friends who avoided me because it scared them.  Also, many "real" names on here are made up fake ones anyhoo.  So Ed, etc, leave the anons alone, they have good reasons.

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SABKLYN's picture
Replies 2
Last reply 8/15/2015 - 6:43am
Replies by: Anonymous
Anonymous's picture
Replies 2
Last reply 8/14/2015 - 12:23am
Replies by: KMick, kylez

If you were amelanotic, what would you be looking for; skin wise for recurrence

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