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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Your journey matters.

Journey DX, a patient research company, is working with patient advocacy group Canadian Skin Patient Alliance to better understand the patient journey for melanoma, as well as the impact of this disease.

We are conducting telephone focus groups for Canadians with advanced melanoma, and their caregivers. The focus groups will last approximately one hour, and will be conducted over the telephone to be comfortable and convenient for patients and caregivers who would like to share their experiences.

A compensation of $50 will be provided to those who participate, in appreciation of their time.

If you would like to be involved or would simply like more information, please contact Dr. Jennifer Pereira, Research Director of Journey DX (, 416-485-7387).

Thank you for your consideration.

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odonoghue80's picture
Replies 8
Last reply 2/20/2015 - 10:58am

Hi all, just looking for some insight. I've had stage 4 melanoma for a few years now but over the last 6 months I've had an extremely large tumor in my groin that will not shrink. The tumor is protruding from my right groin/pubic area and it's about the size of a grapefruit. To say the least, I need to figure out how to rid this tumor. From September -December I had 4 rounds chemotherapy (taxol/carbo) that really helped and shrunk or killed many of my other tumors. I also had direct radiation for 10 days to the tumor. However this particular tumor is stubborn and possibly encapsulated itself. Seems that any of the treatments can't penetrate this area. Recently I switched from chemo to Anti-PD1 Keytruda and have had two rounds (3rd this Tuesday) but no response yet.

I've checked with a few surgeons, radiation onc, and a few oncologists so far, and nobody has an idea. Surgery is not an option because of location. Has anybody seen or heard of anyone having any tumors this large? Or are other alternatives to reduce tumors? 

After feeling during some real rough stretches and being on multiple treatments, a brain surgery, clinical trial, chemo, radiation, and now Keytruda, I'm finally feeling a bit better, but this tumor is preventing me from getting back to close to normal. If anybody has any ideas please share.



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susan-scalp MM 2014's picture
Replies 18
Last reply 2/21/2015 - 9:26am

Hi to all tonight and prayers for those in the fight and their caregivers, family and friends!

Went to my 6 month check with Melanoma Oncologist Surgeon today. I am Stage 1B scalp Melanoma and was expecting a routine check. My upper abdomen began swelling a few weeks ago and no pain only discomfort from it pushing up on lungs, some short of breath. My Dr looks at my belly and says "What the hell?!!!"  I love him and if it weren't serious I would have laughed out loud. He is concerned that the Melanoma could have spread through the blood system and is ordered a CT scan to find out what is going on. Has anyone had this kind of spread or symptoms? I am oddly at peace with this, just feel like I went through a tornado and now have landed on the warm sand of the beach with all sun protection on of course!


It is well with my soul!

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Anonymous's picture
Replies 2
Last reply 2/21/2015 - 3:37pm
Replies by: _Paul_, Teochasse

If you have a local recurrence and NED everywhere else and you are in good health would you just keep on trucking on or would you try to get into a clinical trial?

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rjwilson2015's picture
Replies 4
Last reply 2/19/2015 - 7:09pm

So my husband noticed in december a pigmentation in his right thumb (not dominant thumb). The doctor seemed not to worry but gave him the choice of biopsy. He agreed. He a huge worrier he would wake up sweating at night wouldnt eat and was always reading on the internet. Well he got his results and it read as follows

nail plate with intercorneal hemorrhage

negative for fungal ornaisms

right thumb bed nail plate,nail matrix and underlining tissue examined with no sognificant histopathological abnormalities.

no melancyttic proliferation identified as multiple deeper levels examined in biopsy

We took this as great news as the final results said all the things above. So his doctor cut above to the left and right of the pigmentation and a longer sliver behind his nail fold.. He went back two weeks later all looked good. He set another appoinment for the stitches a week later that week he did his instructions to clean it. As it dried out it began to what looks like a bruise right in the middle of the matrix  literally right in the middle of the three incisions and he is stressing again that its not a bruise thats its something else and the doctor cut around it because when he did the biopsy he literally saw nothing. So my question are,  hoping i explained it clearly :

1. If it was a mole in the middle would the three biopsy that said no melanocytric found  pick up on it being around it and would it surface that fast (less than a month after surgery). ( no real changes in the bruise or mole )?

2. Could it just be bruising from under the healed matrix surfacing since its dried out.

3. Has anyone else experienced this im trying to ease his thoughts that its just a bruise?

thank you guys for any responses and stories i look forward to hear from you guys!

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kaitokid's picture
Replies 13
Last reply 2/17/2015 - 7:52pm
Replies by: Squash, SABKLYN, Janner, kaitokid

Hey guys,

24 year old here. No history of extreme sun exposure, but a few bad burns in childhood. I live in California and work out outdoors so some history of mild exposure over the last few years, a few times a week maybe 1 hour at a time.

I recently noticed that a freckle on the top of my right hand had developed a black "crust" or scab. If I rub my finger on top of it it feels like a scab.

It's black and irregular, which is why I'm suspecting Melanoma. Also didn't use to be there, and it's on top of said "freckle". It's roughly the same size as the freckle. Definitely smaller than a pencil's eraser.

I'm freaking out. I have a doctor appointment in 7 days.

Here are some photos:

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Choosejoy1's picture
Replies 1
Last reply 2/17/2015 - 6:53pm
Replies by: Bubbles

My husband(45 yrs old) was diagnosed with Stage IIIa Melanoma in October 2013. Wide excision on left shoulder followed by lymph node removal in armpit area. 16 months NED. 1/15 found lump above collarbone. Surgery. Metastatic Melanoma. Surgeon indicated change in stage to IV. Visited Mayo yesterday. Dr said we could call it Stage III OR Stage IV as although it had metastasized, it was on the same side as the orginal occurance so it was a better prognosis. Still NED. Has anyone experienced this? We go back on Friday (5 hour drive) for a consult with the Oncology Radiologist for possible radiation of the immediate area. Three options after that. Leukine or two clinical trials. Any advice/experience would be appreciated.

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Replies by: Janner, StephyD83


I haven't been here in a long time. I've had several early stage melanomas, all Stage 0 or 1 over the course of the last 20 years or so. I'm currently being followed by Dr. Venna (who used to be at Washington Hospital Center) at INOVA Fairfax. 

My question is if any of you have been diagnosed with early menopause. My gynecologist said my FSH level is 66 (normal reproductive years FSH is between 4 and 22, post-menopausal is between 25 and 135). Like the melanoma I have no family history of early menopause. One other cause of early menopause is thyroid problems (my throid hormone levels are "normal") and/or a pituitary gland problem/tumor along with a likely familial cancer syndrome thing.

I don't think this is a possibility in my case, based on my "symptoms", but I just wondered if these two things which are happening to me at a very young age are related at all. So I thought I'd reach out to you all to see if anyone had any similar experience with this.



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Mat's picture
Replies 8
Last reply 2/18/2015 - 10:15pm

So, I had a great run with the GSK combo with ipi in between.  I had ~4 months of reduction followed by ~14 months of stable disease.  My latest scans from a few days ago show progression—3 new lung nodules and a new brain met (8mm).  I'm otherwise (thankfully) asymptomatic and, interestingly, my existing tumors (mostly in my liver) were stable.  Tomorrow I’ll have a gamma knife procedure for the brain met (I previously had one shortly after my initial diagnosis)--and I hope to start on pembro later in the week. 

I did discuss pembro versus nivo with my onc.  It sounds like nivo is not yet readily available and there isn’t a prevailing view that one is “better” (at the higher dosage/frequency, for ipi refractory, etc.) than the other at this point.  I also discussed trials with my onc and a few other experts (supplementing my own research on these forums and clinical trial search engines) and there doesn’t seem to be an alternative that is clearly better.  (However, if Rick Simpson starts a cannabis oil trial, please sign me up!)

Glass half full—hopefully I’ll get the so-called abscopal effect that Celeste has reported about on her blog.  Obviously a time of uncertainty and anxiety—while I’m excited to have the opportunity to try PD-1 (it isn’t lost on me that the timing of my progression is fortunate with the recent FDA approvals), it is unsettling to have less options in the quiver.  That said, I’m generally feeling ok about the situation.  While I could certainly do without the brain met, I feel like we’ve caught the progression early.  (By the way, I credit my “ok-ness” to a MBSR (mindfulness-based stress reduction) course I took last year and my continuing practice and reading in that area.)

One piece of advice for my fellow Stage IV-ers—insist on a MRI of the brain with each periodic scan, particularly if you've had a prior brain met.  I have always done this.  Insurance will sometimes push back, but your onc can appeal.  That was the situation for me with these latest scans.  Had we not pushed back, I wouldn’t even know about the brain met.

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vince1962's picture
Replies 2
Last reply 2/16/2015 - 6:41pm
Replies by: vince1962, Janner

Ok I have a 9mm nodule mid right back, nodes on the right side are pallable but also shows some spots high left subpectoral,since it,s left the node basin and spread to the left side would that make it stage IV?

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My husband is a stage 4 melanoma patient at UCSF who has been on PD-1 for the last 7 months. He has three main tumors in his liver that are being treated and with a combo of PD-1 and a couple of chemo embolization surgeries his scans have stayed mostly 'status quo' since he was diagnosed. No spread outside the liver and no major growth in the liver.


We just got back from the National Cancer Intitute (NCI) and was accepted into a t-cell therapy clinical trial. It's excellent news and we're in the process doing our research and getting opinions from his melanoma specialist and interventional radiologist at UCSF just to ensure it's the right decision for right now. It seems like a slam dunk but as you all know it's a huge lifestyle shift to move across the country for such an intensive treatment.


Has anyone on the forum gone through it and had a good or bad experience within the last year or two? I found threads from 2012/2013 but treatments change so quickly.


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newmanmark's picture
Replies 4
Last reply 2/18/2015 - 4:13am


I live in Toronto, Canada and have stage 4 melanoma.  There is a clinical trial here in Toronto that is combining a BRAF inhibitor with a MEK inhibitor.  There are no PD1 trials available at the moment and the only way to obtain PD1 is to fail on BRAF and IPI.  The company will then grant compassionate use.

I found a trial in Pittsburgh that will be opening in March that combines BRAF+MEK+PD1.  Here is the link.

It seems to me like there is more hope in a treatment involving PD1.  If I start the Canada trial I will no longer qualify for the US trial because I can not have prior use of a BRAF or MEK inhibitor.

Obviously doing a trial outside of my country will present some challenges but I am willing to travel if it's a better option.  Does anyone have any thoughts or insight?  I'm not sure what to do at this point but have to make a decsion soon.



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clthomas2131's picture
Replies 6
Last reply 2/20/2015 - 12:31pm


Does anyone have any experience on or about the trials for:


Avastin and/or Yervoy 


Interferon and/or Yervoy?


Those were 2 of my options with the 3rd being just yervoy.


Just trying to get as much feedback as possible.



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JerryfromFauq's picture
Replies 1
Last reply 2/16/2015 - 9:45am
Replies by: rosa1

I  am in another group that had an Italian lady join yesterday.She is wanting private conveersations with  ""someone has the state IV with BRAF V600E and met brain?" 

I'm me, not a statistic. Praying to not be one for years yet.

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csellers23's picture
Replies 10
Last reply 2/19/2015 - 9:11pm

My husband has had one round of keytruda. I noticed what i thought was a bruise on his ankle. Now both ankles are swollen and the bottom of his feet are red it happen fast. It hurt so bad he couldnt walk. I gave him one ibuprofen but cant give him much due to brain mets.has this happen to anyone? If so how long did it last and did they give you any meds to take it away? Also his joints hurt all over. How long did that last for you? Thank you all.


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