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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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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Ginger8888's picture
Replies 7
Last reply 7/20/2015 - 10:21am

I did my last treatment of Yervoy Aug 13th 2014 and so far all scans have been NED..Today i got my new scans and am stll NED..Whoot!!!

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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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Jennycrn1's picture
Replies 27
Last reply 7/20/2015 - 6:55am

Forgive me--I looked back and didn't see this topic recently so I'm posting and looking for advice. I'm starting Interferon this week (Friday the 17th vs Monday the 20th). I'm looking for advice from anyone that has taken Interferon or is family of the Interferon taker.... How disruptive is it really to the day to day life? What real things can I do if I have bad symptoms to feel better?  What helps? What makes things worse? How soon after dosing would I start feeling bad? Can I drive myself alone back and forth to the appointments so my kids can stay home with a grandma? Should I dose in the mornig or afternoon? Sorry if I sound needy, but I'd like to hear from someone with real experience and not just the doc or nurse from the office with no personal experience. Thanks in advance, Jenny

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Eileensulliv's picture
Replies 8
Last reply 7/20/2015 - 5:05am

Things have been going pretty well for me on the ipi/nivo combo trial. I only got one dose of ipi because I didn't tolerate the combo much. So I have been on just nivo for a few months, and get my next scan August 6th.

My biggest side effect has been diarrhea. It has become the "new normal" for me, but has been manageable. I also have some fatigue, aches and pains, peeling hands and feet, and my hair has thinned quite a bit.  Lately I am feeling increasingly forgetful. Maybe it's just stress, but I wonder if it can be attributed in part to the nivo. It has become astonishing just how much I am forgetting lately. I've been forgetting appointments, tasks I was working on, even words! I will be talking with someone and trying to get a simple everyday word out. I can think of it and picture it, but I just can't remember the word. I swear it feels like I'm losing my mind!  Has anybody else experienced this?

I'm sure this is stress related and I'm just overreacting.  I will talk with my doctor about this, but I just thought I'd ask if anyone has experienced this while I remember to ask. :-)




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stars's picture
Replies 2
Last reply 7/20/2015 - 2:44am
Replies by: stars, Janner

Hi Janner

I've been looking at the boards for a while, ever since I was first diagnosed with stage 0 melanoma in Jan this year after a whole-body skin check.

Unfortunately, I've since been diagnosed with two more - both stage 1, still waiting on one WLE (other WLE done and pathology all clear).

So that puts me in the three melanoma club... all within 6 months... I feel like I've been struck by lightning then hit by a bus..

I'm 43 and want to bleat about being too young for all of this, but looking at the boards there are plenty younger than me here! I also live in Australia, in the melanoma capital of the world.

My question for you (or perhaps questions, if you have time):

what is your frequency of full skin check, and with which specialist? To date I have only been to a skin cancer clinic - this is a clinic run by GPs, not derms or any other specialists. Basically, these GPs decide to 'specialise' in skin cancer and do lots of dermoscopy courses. I have been seeing them for six months but have now made an appt with a derm as I think I might have outgrown GP care at this stage GP = general practitioner.

what is your advice re self monitoring - I have basically found all of my melanomas, all looked different to each other and all were at first regarded as nothing at all by both my family GP and (with the exception of one melanoma) even the skin cancer clinic - it's only because I insisted that my last two melanomas were biopsied, one even with a shave (!) which makes me angry as even I as a first time melanoma pt know how inadvisable a shave biopsy is for lesions that are ALL about depth. I can monitor the visible ones... but what about my back etc?

what is your advice for obtaining peace of mind or as close to it as possible? I feel like every (frequent) skin check I go to results in biopsy, stress, WLE....

I don't have any family history of melanoma... what are your thoughts on gene testing in my situation?

Hope to hear from you, and anyone else who would care to respond


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TraceyN's picture
Replies 10
Last reply 7/19/2015 - 10:26pm

I am really concerned I am having so many issues right now, and I can't seem to get anyone to take me seriously??!!!!!!  I'm getting really frustrated.  I was referred to Nashville Skin & Cancer here in clarksville, and my doctor did'nt even do a proper skin check!!!!!  Did'nt look in my hair, my feet, privates, etc..., now I have sores all over my head that are scabbing and bleeding, I had a mole on my chest pop up and turn black, and started scabbing, and itching, and today came off.  I immediately put it in a ziploc bag, and ran to the skin and cancer center, and was told it's probably nothing to worry about, and threw my tissue in the trash???!!!!!!!!!!  Is anyone else having problems like this??!!!!  I tried calling Dr. Kelly at Vanderbilt, but he's gone now along with his nurse.  I am so worried because it was so scary when I was diagnosed in 2000, I had 4 surgeries in 5 months, and my right groin lymphnodes were removed, as 3 tested positive.  I was put on the cancervax clinical trial for 5 yrs, and it was closed proven not to be successful..  Uggghhh, I'm worn out, because I know how quickly this can get away from you if not being aggressive.  Any advice or suggestions I would greatly appreciate.  Thank You.

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1derdog's picture
Replies 4
Last reply 7/18/2015 - 10:18pm

My husband had three doses of Keytruda & the latest scan showed an increase in the tumor in his pancreas.  The doctor now wants him to start Yervoy & Keytruda as soon as possible.   Has anyone else moved hat quickly off of Keytruda to the combo treatment? I was under the impression that Keytruda needed time to work.  The doctor said if the combo doesn't work then he'll give my husband targeted radiation.  In hopes of some shrinkage so they can resect the tumor safely.  

Can anyone tell me if they've had any similar e perience with this sequence?

thank you

wife (caregiver)

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