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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ecc26's picture
Replies 16
Last reply 1/31/2016 - 9:42pm

I know I've been absent from this board for a long time, but I find myself apparently failing the Merk PD-1 I started a year and a half or so ago. I won't go into a lot of details about my past as you can find my other posts on here by doing a search

I had 2 masses in my chest that I underwent radiation for in the fall and those look great at this point, but I also had 5 new brain mets (that turned into 14 by the time I got up to the center for gamma knife). I've got an enlarged lymph node in my neck and after yesterday's scan results apparently a new tumor in my spleen and one near the cranial pole of one of my adrenal glands. Since they treated 14 with gamma knife instead of 5, my medical oncologist is reserving judgement on that until the scans get up to that doctor, but there were still a whole bunch on the MRI. Hopefullly I'll have an answer about which were treated and (hopefully) responding. 

I've been fighting off my oncologist's suggestion that I switch to the PD-1/Ipi combo because I remember well how I felt on Ipi and I've had no side effects on on the PD-1 over the last year and a half. I should also note that if not for the scans, the only tumor I'd have known about is the lymph node in my neck- for which I was hoping to possibly use the recently approved Herpes vectored vaccine (since it needs to be injected directly into the tumor). But I think I've run out of time to stave off changing therapies, especially if the MRI shows no improvement or worsening. I've been spending time today looking for trials and other possibilities. 

The other possibility my oncologist mentioned was a vaccine trial happening in Buffalo, NY, but he didn't seem to be that excited about it- probably because the melanoma specialist I used to see up there has moved out of the area and is no longer there, but also because vaccines in the past have not really panned out very well. I'm not sure he has as much faith in the the department that's there now, and he did call my former specialist to get his opinion- who suggested the combo therapy. He has also contacted Dana Farber (Boston, MA) and they have not implemented that for their patients, despite having run trials for it at their hospital. 

Does anyone on here have any other suggestions? I'm on a bit of a time crunch to get it figured out as he'll be looking for an answer likely tomorrow evening after I see the radiation oncologist. I'm not critical (yet) but know myself well enough to know not to hold off too long. I don't want to give up the no side-effects if I don't have to, but I don't want to waste time on a vaccine trial either. I know there's no way to tell if it will work or not, but I have no idea (I'll be reading about it this afternoon) what is involved with the trial or if I'd even qualify for it. Any help/suggestions would be greatly appreciated


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MaryD's picture
Replies 2
Last reply 1/31/2016 - 4:59pm
Replies by: Bubbles, Jubes

I am fortunate to be long term Stage IV survivor (7 years since last recurrence) and over a period of 8 years, did multiple treatments (INF, vaccine trial, Ipi, pulsed IL-2).

While I'm certainly not getting any younger (61), I've really noticed more joint pain and osteoarthritis in my feet and hands.    A lot of this seemed to come on  after the pulsed IL-2 treatment but it may well be the result of cumulative treatments over time.  

I was wondering if anyone else has experienced this after doing multiple immunotherapy treatments.  

Thank you,


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grahamtosh's picture
Replies 10
Last reply 1/31/2016 - 12:50am
Replies by: grahamtosh, Janner, Anonymous, WithinMySkin


hope there's a qualified person that can very kindly advise 

I had 2 melanomas removed last year. So now am wary  and listen to the doc but not too sure  . I have a back covered in what look like atypical Nevi. Dermo has done mole mapping and says she wants to excise  17 atypical moles with margins , from my back . ( they will of course then go for biopsy ). Mainly due to diameter but some smaller ones also due to my age 46 . 

Do I need all 17 excised ? Is this a worthwhile precaution ?

thanks for your advice .


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gcooperbl's picture
Replies 6
Last reply 1/30/2016 - 5:56pm

my dad has stage 4 melanoma in brain lungs and liver......he has been offered pembro but only one dose? we cant understand why as it is supposed to take 3-4 doses min? 

he is braf negative 

his cancer in liver is getting worse and needs treated asap, he is due to start pembro next week, and he is on steroids though coming off them.

any advice? he needs the best treatment? any other drugs out there that could help? or any more tests we could do?


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jamieth29's picture
Replies 24
Last reply 1/30/2016 - 2:10pm

Just got done at my local oncologist visit and found out they approved it for me. I was very surprised just wanted to let people know some doctors and Insurance may let people get it. I still have some hurdles to get through the first big step is pet/ct and MRI next Thursday. I asked my doctor how long we would go for and his opinion was 6 months or a year. I'm still unsure about my decision and am not going try and not Look past scans on Thursday hopefully the come out clear. I tried getting Nivo through a trial before but relapsed locally before trial started. So I am basically getting trial at home. Everything in 3c N.E.D is kind of a unknown as far as side effects and such but leaning heavy on going for it. I have read info on the trial that Celest went through a couple times so there is some data. Any thoughts or questions?

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Replies by: mamatupou, Anonymous

Hey all, it has been a long time:) Happy to be 6 years away from diagnosis!

So, went to derm and had some biopsies done. OF course I have some basal cell stuff. I feel like I will have my whole face redone 1 inch at a time. However, the other biopsy was on my right leg.

This poor leg has had two surgeries, one to remove the original tumor and one to remove my lymph nodes (RLND). This new pathology shows a "compound nevus ( associated architectural disorder and severe cytologic atypia)

So here is where I need advice. The derm wants to do a wide excision. My concern is the complications that come with surgery on this leg. Is it severe enough to take my chances, or is it so unlikely to become melanoma that I don't do the surgery and take my chances?

I would love to hear straight forward answers. pro/cons, the good the bad and the ugly.

I have 4 kids under 13 and need to make smart health decisions. I try to make educated conservative decisions, but I feel like I am making decisions on 5 yr old information.

thanks ahead of time


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LoveLife's picture
Replies 8
Last reply 1/29/2016 - 8:12pm
Replies by: Cynlee, LoveLife, Janner, Anonymous

I wanted to share my story since I am going in for a biopsy for an atypical mole on my foot. It will then be sent to a pathologist and it's irregular, discolored and with black dots. For those of you with short attention spans, I'll ask my question now before I share. I am having a wide exision biopsy on my foot? How long was your recovery? What was the procedure like?

Now that my question is out, I also wanted to share my story because I'm scared and I've already learned so much from reading this Bulliten Board. Today is the day I audition for a dance company that I've been training several months for. I'm 30 and even though I was overweight and miserable for most of my early schooling, I had a great life change in my 20's and started to salsa dance more intensely. The irony of it all was that I was told I was not the ballet type when I was 5, but Salsa is like ballet with congas!

It took me a long time to feel comfortable in my body. I hadn't seen my doctor in a while. I had a blood clot in my leg that traveled to my lungs (pulmonary embolism) when I was 24 but this is the healthiest I've ever been. I got really sick with a random virus before Christmas and booked a last minute appointment to show my doctor a growth on my pinky toe. It wasn't discolored but she sent me to a podiatrist to have it removed. What I thought to be a superficial visit to the podiatrist became a concerning visit. I actually felt weird going to the doctor for it.

The Podiatrist looked at my toe and then started asking about another mole on my foot. I've had this mole since I was a child. I've had two and while one of them has faded, the other has become more discolored and dark. I made a joke about it and then the Doctor looked at me with a look of concern I couldn't shake off. He asked me if anyone in my family had skin cancer and then took a step back and said, "You need two surgeries and I'd like to do that in my outpatient clinic at Beth Israel Hospital in Boston.

He then asked, "Can I draw on you?" My first reaction was, "Can I audition on Tuesday?" He didn't look amused or say anything about dance. He then drew the shape of an eye-lid on my foot. He explained how that I needed a wide-local excision. At that point, between his concern and urgency, I felt scared. I asked if this is something that could happen on an existing mole and I can't remember what he said. All I heard was, "My staff will call you from the hospital," and there I was sitting in the doctor's room alone. 

I left the office and went for an x-ray. He said that the grow could be an extra bone but also wanted to remove the mole and the skin underneath to have a biopsy. I usually have a delayed emotional reaction to things. I'm really good at responding to a crisis but this visit was different. I called my primary care doctor since I need to get clear for surgery and she said that I'd have to go on medication before the surgery since I've had a pumonary embolism and bed rest is risky for me.

I took a good long look at the mole when I got home. It's irregular, two different colors and I have some black dots on the side. I remember is scabbed the last time I went on vacation. I also have a new one that appeared on the sole of my foot. I'm scared and in what I've read I have a lot of respect for those with Melanoma. I do not have an diagnosis since I am days before my surgery but I kept telling my friends two weeks before this happend that I felt like I needed to start juicing and change my diet to feel more energy. I've been calling the office everyday since the doctor needs to submit his notes in order for me to be scheduled. He hasn't done that since Thursday.

I know it could not nothing, something, or life-changing. Either way, foot surgery at the peak of my dance is really upsetting. I went to rehersal last night and cried the whole way home. I wanted to ask if anyone else has had a wide exision on their foot and if so, how long did your recovery take? I obviously won't be able to place any pressure on it and I walk to and from work.

Any advice would be appreciated and for those actively fighting melanoma, I thank you for sharing your story. It's helped me a lot during this time of uncertaintly. In my gut, something wasn't right about that visit. When I played sports we always had to get to know our opponent to create a strategy. I feel like the more I read, the better I can be prepared but at the same time, I just want to know what's going on with that mole.

Thank you for reading and sharing in advance.


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keepthefaith11's picture
Replies 5
Last reply 1/29/2016 - 6:01pm
Replies by: Anonymous, mybelle, keepthefaith11

Ok, here is another question. At this point, would it greatly benefit him to go to Moffitt in Tampa? Since at this stage the nest step would be Yervoy. I am not seeing many other options except wait and see. Would they do anything differently you think? I just don't want to delay the start of Yervoy waiting for an appointment over there. Any opinions?

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MindyD's picture
Replies 22
Last reply 1/29/2016 - 11:18am
Replies by: cece, Anonymous, Robyn W, MindyD, Squash, Happy_girl, jenny22, Janner

Hi all,

New to the forum, as I was diagnosed earlier this month.  It's been a crazy couple of weeks, and I have learned a lot from stalking this forum.  ;-)

I am one week out from having the WLE and SLN biopsy, which removed 5 axillary nodes - all negative.  Yay!

This puts me at at Stage IIa.  My surgical oncologist decided to submit the tumor for a new test that they've only been doing for about 6 months.  It is called DecisionDx - Melanoma, performed by Castle Biosciences, Inc.  It is a gene expression profile test...  Quote from the site:   "...a molecular test which has been shown to identify tumors at high-risk for metastasis more accurately than the factors currently used by doctors, including the depth of the melanoma (Breslow's thickness)".

My doc says that if it comes back in the Class 2 (high risk) category, then there is a better argument to have further tests/scans to check for spreading, which insurance is more likely to cover.  He also said risk for recurrence would be higher, so we might go ahead with adjuvent treatment.

I am thrilled that something like this now exists, as I did not like the idea of the "wait and see" approach for the next 5 years.  Especially since it had been 6 years since I had seen a dermatologist prior to having this mole removed.  Who knows how long it's been there...  and I've heard several examples of Stage 2 skipping 3 altogether and goind directly to 4. 

From the studies I've read, the accuracy of past patients has been highly accurate.  I should get results in a couple weeks.  In the meantime, I tried to find some threads about this topic, to no avail.  Has anyone had this test done that would like to share their experience? 


- Mindy

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DZnDef's picture
Replies 6
Last reply 1/28/2016 - 7:49pm
Replies by: DZnDef, WithinMySkin, BrianP, Anonymous

Hi everyone,

I took an MPIP "holiday" over the Holidays and pretended I didn't have cancer for a while.  It was nice to just enjoy living life for a bit.  I started lurking again earlier this month but decided today I should finally post again.

Today is the 2-year anniversary of my recurrence.  After being NED from surgery in 2012, a chest X-Ray on today's date in 2014 revealed new spots in my lungs.  I thought I was a goner in a few months.  I never expected to be around in 2 years still feeling "healthy".  So I thought that was worth celebrating.

As for the update, some of you may recall that I made the wacky decision to pursue alternative treatment first which I started in March of last year.  This was after January 2015 scans showed both growth and a new met (after several mostly stable scans).  In December 2015 I decided to have scans again after an 11-month interval.  I was really hoping the scans would be definitive (either definitely working or definitely not) so my next steps would be obvious.  Unfortunately, as is so often the case with this disease, the results are not so cut and dry.

The good news:  No new mets!  (Yay!)

The bad news:  All mets are larger.  (Boo.)

My conventional doc (the pulmonologist in this case) wanted me to start conventional treatment right away.  My NY doc (the alternative one) was not concerned with the results as she claims the growth is likely inflammation not true growth and to focus on the news that there were no new mets over an 11 month period.

Additional odd tidbit:  They only mentioned one met in my right lung where previously they always mentioned two (one of which was always stable at 3mm).  They didn't say it went away or is no longer visualized.  They just didn't mention it at all.  Maybe it fell between the slices this time and is still there.  At least it didn't get any bigger or it would definitely have been mentioned.

Which is all to say I can't be sure this treatment is working and I can't be sure it isn't.  I'll just keep at it for now and continue to reserve my right to change my mind at any moment.

I appreciate so much everyone sharing their stories on this site.  I'm constantly re-evaluating what my next steps might be based on the valuable information you all share.  I am such a coward when it comes to drugs. I hope I can muster the courage to jump in if it proves necessary (and I hope I have the wisdom to identify that moment if it hasn't passed already).

Happy New Year to all of you and I wish you all good health


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

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Sfern5's picture
Replies 4
Last reply 1/28/2016 - 6:44pm

about a week ago I had my third infusion of Keytruda.  After the first two treatments I felt great and could see subcutaneous tumors disappearing. My only side effect was constipation. I am now experiencing some lower back pain. Has anyone else had that? Do you know what causes it? Could it just be the constipation is worsening? I also did Develop a cold sore for the first time in my life. The doctor immediately ordered a course of  anti-viral medication. Otherwise I feel great! Just concerned about the back pain.

Cancer, Schmancer.

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Anonymous's picture
Replies 11
Last reply 1/28/2016 - 6:15pm
Replies by: Anonymous, JuTMSY4, BrianP, Polymath, Mat, Bubbles, pookerpb

I need some advice on treatment options.

I have mets everywhere in the liver, bones, spine, neck, lymph nodes , lungs and abdominal wall.

I have been on Keytruda for five months.

The doctor wants to switch me to Nivo to see if i respond to nivo. He says he has patients that responded to Nivo that didnt respond to Keytruda but I believe it is basically the same drug so am not really keen on doing it.

I mentioned Ipi and he said i could try that.

What do other people think? Which is the better option?







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Anonymous's picture
Replies 7
Last reply 1/28/2016 - 11:22am

Can anyone tell me if during your IL-2 treatment while receiving infusions the week in the hospital, if you needed someone there with you?  My husband will be starting a new trial and while in the 5 days I wont be able to be with him. I worry that he will feel too sick at times to be able to either ask the staff for things he needs, or to get them a snack or something.

He doesnt want me there as he says he will be well taken care of and feels more at peace when I am home with our children. The hospital is 3 hours away and he doesnt really want either of parents there either. They are not a good support system for him. Instread of focusing on his needs, etc. they are torn and apart and so distraught (they are both in their late 70's) over this they upset him more.

Anyway, I would just like to know how feasible it is for him to do this without me?  I dont want to be worried sick if I am not there, even though I can be there if need be at any moment.



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Anonymous's picture
Replies 10
Last reply 1/28/2016 - 7:41am

Just wondering what to expect for my upcoming ipi/nivo treatments. I have heard some people respond without many side effects and some with quite a few. I was diagnosed 7 years ago with a melanoma mole on my right thigh, removed it surgically with very large margins. 5 years later a lump within the same region showed up. Again, surgery very similiar to the first. At the time interfuron was an option or observation. I decided to observe. 2 years later (now) I had a lump in front of my right ear biopsied and it tested positive for melanoma. A subsiquent PET was done and one other tumor was found in my abdomen under my liver on the messentary wall about the size of a softball. Wow have things changed. Anyone else have any similar situations? Just looking for some info as not much is to be had thus far.

FYI, I was originally supposed to start on a clinical trial a couple weeks ago in Portland Oregon. It was a combonation of Ipi and IL2. Just prior the insurance company denied the treatment and said they do not support clinical trials. It sounded like quite the 1-2 punch but I hope the ipi/nivo takes hold.

Thanks so much for listening. Scott.


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Renate's picture
Replies 5
Last reply 1/27/2016 - 2:10pm
Replies by: Renate, AllysonRuth, Janner

I had a 1.3mm melanoma removed from my thigh and microscopic cells were found in one lymph node.  They did a MRI and PETCT Scan and the results were clean except there is a gumball sized hotspot on the PET Scan on the opposite side of my pelvis where the melanoma was found.  My dr thinks it is probably metabolic activity in my small intestine but to make sure they are going to do a CT Scan to see if its solid - Has anyone had anything like this???  This waiting and worrying is hard to handle.

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