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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Erica A's picture
Replies 6
Last reply 7/23/2015 - 4:16pm
Replies by: tcell's wife, mrsriddle, Anonymous, dentholla, stars, _Paul_

Just doing the yearly checkin for my husband, Ken, who was 10 years NED from Stage 4 in June.  Ken is doing great and has had no significant lasting effects from the cancer or the treatment. - he is still going strong and living a normal life these days with only yearly check-ups.  It is my wish that this will give others hope that there can be long term remission from widespread disease. 

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Rita and Charles's picture
Replies 8
Last reply 7/23/2015 - 2:15pm

Hello All - my husband Charles is on Day 4 of the BRAF combo Debrafenib + far so good.  He is tired but the stress of getting into a new routine with taking the drug/eating and a little waiting for the "side effect shoe to drop" could also be a cause of fatigue.  

For those that took this long after you started it did you start to see, if any, side effects?? Thanks - here is hoping that he is part of the happy camp with great success and little toxicity.

Hope everyone is doing well, 



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Anonymous's picture
Replies 4
Last reply 7/23/2015 - 10:07am
Replies by: pookerpb, Anonymous

Many, many years after my initial Stage IV diagnosis, I'm thinking of looking into Disability.  Do you need active disease in order to qualify?  Has anyone else gone this route? 

Luke 1:37

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bonusfries's picture
Replies 3
Last reply 7/23/2015 - 4:13am
Replies by: stars, Mat, arthurjedi007

A few questions I'm mulling after a CT today.

Been on TAF+MEK for 4 months. PET in April didn't show anything suspicious. Brain MRI in June showed shrinking brain mets (already got SRS'd), CT today showed a new small lesion on the left adrenal gland. Onc (normal, not a specialist) had been preaching PD1 as our next move, but today she changes course and says ipi is probably up next for me. I also see a melanoma specialist at Penn, and the two of them talk regularly, so they are going to mind meld and come to a decision over the next few days.

The Qs in my head are

- why the change of heart? is it based on the location/size of the met that beat the combo? This is mostly curiousity on my part.

- I'm also having a follow-up brain MRI in two weeks, so shouldn't those results be taken into consideration before starting my next treatment? Or is immunotherapy still an adjuvant therapy for brain mets with radiation and/or resection being the primary treatments?

Like the title says, its never great to find a new spot, but it could have been much worse in my opinion.



Just do it

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Mom2Addy's picture
Replies 3
Last reply 7/23/2015 - 4:09am
Replies by: stars, Mom2Addy, Bubbles

After SRS,surgical resection (twice) and four rounds of IPI, my husband begins Opdivo tomorrow.  Full body PET at 6:30 AM, labs at 12:00, see Doc at 12:30 for results, then treatment. Long day! Interested in hearing about side effects and any advice to keep them at bay. Our oncologist (top Melanoma guy in our area) said absolutely no steroids. Thank you and continued prayers for all. 

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RGal's picture
Replies 11
Last reply 7/23/2015 - 4:08am

I have been checking just about every day for the past 16 mts now.  This board and all who visit have been such a source of comfort and information during one of the most difficult times of my life.  Sadly, my father passed away last week.  He was at peace with it all so my family and I were as well, or try to be depending on the moement.  I would like to thank each and every one of you for your wisdom, strength, and encouragement.  

My father was unfortunately diagnosed late, (hemorrhoid??) with mucosal melanoma so I knew the odds were against him however, I knew we gave it the best fight, in part, because of all of the vital, up to date information found on this blog.  Honestly, this was really the one place I knew I could find the most recent information, statistics and personal stories.  So much of what is found online is years old with grim statistics.  There is basically no information on mucosal melanoma to make it worse. 

I wish you all luck in fighting this horrendous disease and promise to do all I can to raise money and help to fight in honor of my father and all of you.

Best of luck

Lorraine Palumbo

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Gordknight's picture
Replies 1
Last reply 7/23/2015 - 3:51am
Replies by: stars

So back in october i was diagnosed with stage 1a melanoma. Had the wle done and a few minor scares since then which after biopsied turned out to be nothing. Well over the last month i noticed a mole raising and becoming inflammed. I finally got in to my derm today and he removed it and said it didnt look too concerning but he said he also noticed another mole that had changed and was becoming a halo nevus. He checked the rest of my trunk area, found nothing of note and sent me on my way.

What did i do? Stupidly i went online to find out that sometimes a halo nevus forming at my age can mean melanoma is elsewhere on the body or even internally! Needless to say im panicing again. Any advice or info or comfort anyone can provide will be most helpful. Oh and he did remove the halo nevus. Thanks.

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Anonymous's picture
Replies 5
Last reply 7/22/2015 - 7:49pm
Replies by: Mat, _Paul_, Brendan, Bubbles

So I'm having a bit of weird issue with my left eye.  Over the past few days, I've had pain that seems like it is emanating from the back of the eye.  Not debilitating pain, but requires Advil.  My perception in that eye is also a bit off--particularly my peripheral vision.  Kind of like the first few second after you rub your eye and then open it in a light filled area, except that the eye doesn't get back to normal.  Not limiting, but annoying.  I've also been running a low grade fever and my white count is high (hasn't been high since I had colitis while on ipi).  I visited an eye hospital on Monday to rule out uveitis (which they did).  I'm waiting for the results of my pituitary panel to see if this is hypophysitis.  I'll let the group know.  Hypophysitis is listed as a (low probability) side effect of Keytruda.  I know that others (Brian) have experienced it on ipi, but I haven't seen anyone report it for Keytruda.

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uccio2014's picture
Replies 7
Last reply 7/22/2015 - 9:28am

Hi all

my wife is under z since august 2014 and from last tac all tumors disappears or strinks.

But some brian mets appears in last tac (16 from MRI only one 6 mm visible from TAC)

Our doc suggest for 3 weeks  wbrt daily session with low radiation and go on with z after (z will be stopped during radiation). 

In the meaning my wife founds some inguinal lynfonode grow up (where was lynfonode sentunel in the primal melanoma removal in 2013.


Have someone similar experience?



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cbeckner98's picture
Replies 4
Last reply 7/22/2015 - 12:29am
Replies by: _Paul_, dfeng, Anonymous, tschmith

Hi all,

I've posted a few times - we're up in Seattle and my Dad has brain mets and one tumor in his lungs.  He's also BRAF negative and so we've seen Dr. Thompson at SCCA twice in order to help us chart a treatment plan.  In any case, last week Dr. Thompson recommended my Dad start Keytruda/Pembro as his first-line treatment (now that his whole brain radiation is complete).  It did take a week of pushing but his insurance, Regence Medicare Advantage, did approve him to go directly to pembro without going on ipi first.  Hurray!  Wanted to share that news with others out there!!!  Our local cancer center is actually administering pembro (their first time ever to do so) and I had the pharmacist look up pembro in the NCCN compendium in order to support our claim as well as the doctor had to advocate strongly too.  Now, we're really hoping that this drug works...  Saying lots of prayers!!!

Also, we did ask Dr. Thompson about the ipi/nivo combo and SCCA's track record with it (for background, SCCA is Seattle Cancer Care Alliance which includes the UW and Hutch).  He said that when they initially heard about it, they were very excited and switched a number of patients to that protocol.  Many got very, very sick, however, and so they have actually pulled back on using that as a default treatment option for Stage 4.  He said that it overtaxed the entire staff of the melanoma clinic and that they are only starting to dip their toes back into prescribing it for select patients (and especially when other treatments haven't worked).  Found that interesting and thought it was worth sharing. 

All the best to everyone out there fighting this disease!  I am so appreciative for the advice and genuine support on this message board!!!


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Anonymous's picture
Replies 3
Last reply 7/21/2015 - 2:07pm
Replies by: tschmith, stars, dfeng

I was diagnosed and succefully treated stage 1 melanoma in 1995 at the age of 15.  I have never had a reoccurance or in 20 years.  Now I have this new "spot" that appeared shortly after my last derm appointment.  It has no color just a hard little bump on my arm. 


Should I get this looked at before my yearly spot check???


I'm feeling a little paranoid because it looks nothing like any picture I have seen for Melanoma.

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mizmena's picture
Replies 5
Last reply 7/21/2015 - 12:34pm

Started this trial yesterday...just curious if anyone else is participating and what the side effects are? I have a very swollen throat today and its got me a little concerned. I didnt think I would have any effects after the first treatment. Headahce, naseua and this sore throat are bothering me. Finally got rid of the headache and nasuea but not the sore throat...any input on anyone else in this trial i would greatly appreciate.


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zhanggar's picture
Replies 16
Last reply 7/20/2015 - 3:24pm

I just got a shave biopsy for a suspicious mole a few days ago and I am waiting to hear the results. I just spotted the mole less than a week ago It was a flat black mole on my thigh and the diamater was just smaller than a pencil eraser. I have not experienced any symptoms such as bleeding, itching, etc. and don't have the risk factors for melanoma.  The doctor said it probably was not melanoma in the later stages because of the flatness and he did not see any part of the mole was remaining after but cannot be sure. 

My question is if the melanoma already invaded deeper in the skin, shouldn't there be a dark spot on the wound or does it not matter? 

Here is a picture of the wound a day after

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Anonymous's picture
Replies 6
Last reply 7/20/2015 - 10:10am
Replies by: Anonymous, stars, Janner

Originally stage 2b two years ago.

Recently melanoma found in scar tissue at excision site.

PET scan done and came back no recurrent disease, no nodal involvment , no distant disease.

Now does that mean I have moved to stage 3 or am i still stage 2b?

And does that make my prognosis worse?

To complicate matters the scar tissue is very thick and near nerves and blood vessels so I am wondering if they can get it all anyway when they do the excision. And if they cant what would be the usual procedure to get the remaining unresectable disease.



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Anonymous's picture
Replies 14
Last reply 7/20/2015 - 9:07am

Just leaving from moffitt. Things are really not going my way. So since i had a extra nodal extension in the path report from node dissection and have not had radiation they are not letting me in the trial. It would take 4 weeks for radiation treatment and another 4 weeks after treatment to get in. Two other people are in line for the spot and they obviously cant hold it for me. In another kick in the ass the checkmate 238 trial will exclude me also because radiation is the standard of care for a path report like mine and that trial does not allow any radiation. Not once have i had a doctor tell me this was going to be a factor. My home doctor actually told me he wouldn't do radiation unless we didn't have a choice. It doesn't work very well and will most certainly give me lymphedema. Dr abdul said well the drugs will be available if you progress to stage 4...then i just about lost it in the exam room. Why the hell did she think i was there. I told her the whole point of me coming across the country was to find a treatment that may stop this before i progress. I feel like i got kicked in the chest. Also threw 800.00 out the window also. But who cares about that just icing on the cake...Totally crushed right now and not sure what my next move is.

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