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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Anonymous's picture
Replies 7
Last reply 11/21/2015 - 8:38pm
Replies by: Anonymous, Beehappy, MattF, arthurjedi007, Julie in SoCal

I have had four infusions of keytruda without really any side effects.

However in the last couple of days i have been having the urge to go to the toilet badly and only a bit comes out and my bottom or sphincer is really sore. I mean it is really sore after defecating.

In fact it is dangerous for me to pass wind as i might soil myself a bit..

I know i could use immodium but the thting is I am not really constipated in fact it seems i only get a bit out but i still have the urge to go to the toilet. I dont see my doctor for another week.

Has anyone else had similar symptoms and what have you done? 


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Toby0987's picture
Replies 7
Last reply 11/25/2015 - 7:22pm

Hi-I was diagnosed feb of 2013 with stage 3b melanoma at mayo-primary site was under side of right arm that spread into my right axilla-1 node macro. I turned down interferon and radiation. They did a wide excision and also took out 48 armpit lymph nodes/just one fat one was positive. Well since then I've had unrelated pap thyroid cancer (ablated and dead) and now I have a pea sized hard lump a couple of inches from my forearm site. It has been there for a month and doesn't seem to change. Forgot my mitotic rate was 4 from melanoma. So should I get the hard pea cut out just under my skin (no color and it formed under the skin) or should I leave it for my pet scan/ultrasound in March? What do you think?

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Debbieamccoy's picture
Replies 1
Last reply 11/16/2015 - 7:10pm
Replies by: DZnDef

Spent three days in hospital for edema fluid retention and constipation . IV gained 40 lbs in water . Severely constipation and have +4 edema .on a bm regime new diuretic . My doc said this is normal with liver involvement  I'm so discouraged 

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Ninniditti's picture
Replies 5
Last reply 11/16/2015 - 6:15pm

Hi, I have been having increasing pain in my  maxillary sinus, my upper plate, my scullbase, side of my eye and the ear, in fact where my tumors are. I have my seventh dose of Keytruda next week. Can T-cells invading the tumor have anything to do with the pain? Pain would be much more bearable if it was. I am taking LYRICA, but it does not help.



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scottr's picture
Replies 8
Last reply 11/16/2015 - 3:34am

Hi All,


I posted back a month ago regarding a new diagnosis of Stage 1 tumour. It was .32 breslow, non brisk TIL, and said the lesion had regression present - over 75% of lesion involved. The tumour was on my mid-back.

About 20 years ago I had a similiar looking mole to the melanoma. It was there for quite a while. Rather dramatically it split in two and then disappeared completely. I took note but did not seek medical attention.

That was kind of stupid because my grandfather died of this illness 10 years earlier. I did not htink mine was melanoma especially after it disappeared..

Anyway yesterday I met with surgical oncologist for what I thought was a consultation. (according to my doctor who said she would be performing WLE and SLNB.) Apperently she decided to do the WLE on this meeting instead. SHe also informed me that she did not think that the SLNB was neccesary.

During our conversation I asked about the extensive regression and she said that this was a good thing. That is the first time I have heard this as every article I have read suggests that over 75% regression was not a good thing.

I have a small lump in my neck, she felt it and said that it does not concern her.

I told her about the mole that disappeared 20 years ago and now there is a smaller but similiar mole in the same place. She biposied this with the WLE.

I can not shake the feeling that somehow stuff is getting missed. I am trying to be ok with everthing but was surprised she was not going to perform a SLNB, particularly with the small lump that was dismissed.

She is the expert but I am left wondering if this disease is being left to potentially progress. I hope not.


By the way... Lots of love to all of you.

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gregor913's picture
Replies 10
Last reply 11/14/2015 - 2:58am


I just got back my results from the SLNB. My surgeon told me the node came back positive for traces of microscopic cancer cells. He does not know if I should have anymore nodes removed because the disease is only microscopic but did state that I would need further treatment. They only found one sentinol node and he ended up removing another 2 nodes because they were really close to each other. Im only 34 years old and I dont think Im comfortable with that approach and I really would like the rest of the lymph nodes taken from that region under my armpit just in case any other cells are in other lymph nodes. Since my tumor was ulcerated im a stage 3b right now.

Any thoughts would be appreciated since I feel like a boulder was dropped on me.

Thanks Greg

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Anonymous's picture
Replies 7
Last reply 12/3/2015 - 2:00pm
Replies by: Anonymous, geriakt, DZnDef, AnitaLoree

My husband is using it.  I dont know much about it and wonder if anyone has any experiences with it. 


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AshleyS's picture
Replies 27
Last reply 11/17/2015 - 12:11pm

After beginning (then trial) Ipi/Nivo combo therapy in March 2015, I was kicked off after 3/4 treatments. However, scans in May indicated the combo worked well - all subcutaneous tumors were gone and my liver mets shrunk by 95%. Scans in August were stable. After a day full of scans yesterday, I met with my doctor this morning and I'm now a COMPLETE RESPONDER! We are doing a happy dance. 

Thank you to everyone who has answered my questions on this board. Your help and support has been tremendous, perhaps even lifesaving - I switched my care to MDA after everyone here urged me to see a specialist.

Also, thank you to everyone who participated in Yervoy, Opdivo, and the combo trial before me. Again, you may have helped save my life. 

I can't wait to get home, hug my babies, and to start planning my little guy's first birthday!



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Anonymous's picture
Replies 7
Last reply 12/11/2015 - 8:15am

Hi all, I have posted under different subject lines up to now but I do need to know if anybody can specifically comment on stomach mets. My Oncologist says this is the first case in her 30 years that she has come accross stomach mets. The tumor is quite large at +- 6 cm x 2 cm in the upper region of the stomach.

I have yet to see her to discuss treatment going forward. In the meantime I am having continious black stools and a fair amount of discomforting pain in the stomach region.

There is talk of total resection and reconstruction surgery - has anybody had this and is it effective?

What other treatment is available?

Any advice / input will really be appreciated.


Wally from South Africa


One day at a time.

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RobGoldsmith's picture
Replies 6
Last reply 11/16/2015 - 1:10pm
Replies by: Janner, swissie

I have a mole which has regressed.. well this is what my GPs think.

I went to see a GP who has a specialist field in Dermotology, he used a dermoscope on all of my moles (I have a lot). He then found this mole which is half pink, probably almost 3/4ths pink. 

The GP thinks it is a benign atypical mole which has regressed. He is having me sent to a derm on Monday to have it cut out however. I have looked online fort days and I can hardly find any cases of a benign mole regressing on someone in their early 30s. 


Literally everything I read says melanoma. Why are there no reports of images of an atypical mole regressing right back? It must have been doing it for 6 months plus. 



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Boo79's picture
Replies 4
Last reply 11/11/2015 - 1:24am

I posted on here over the summer regarding a couple of moles I had to have removed. They didn't look weird to me at the time. They weren't symmetrical, but they hadn't changed either. One came back severely atypical and the other moderate to severe. I had a third one removed later which came back moderately atypical. The first two didn't have clear margins so I went back and got clear margins. Janner was wonderful with her response of watching from now on. In the meantime, I was getting really sick...ended up not being mole related. I had tick illnesses. But while trying to determine what was wrong, they did ct scan and MRI of abdomen. They came back with multiple lesions on liver. The radiologist said the large ones were hemangiomas but small ones were probably cysts. I am just concerned that maybe they missed something and it could be more than that. 

Now back to the mole removal. One of the incisions was near another mile and when I was stitched up, the other mole was stitched into it. This mole seems to be slowly making its way across my scar now. Just a tiny bit. It has been three months since stitches were removed, and in the last couple of weeks, the scar is itching like crazy. 

Should I be concerned or am I over thinking all of this???

one more long does a full body mole check normally take? The derm looked over my body in less than one minute. Never had me stand up. I have one abnormal looking mole on the palm of my hand and she didn't remove because she said it would be uncomfortable for me???

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jenny22's picture
Replies 14
Last reply 11/12/2015 - 9:21am

Hi All- After recent 2nd recurrence (last week), just had surgery today at MSK....very early today....home now.

Since this is 2nd recurrence docs (both surgeon, COIT at MSK and ONC Pavlick at NYU) are recommending a course of radiation in the hopes of preventing more local recurrences....

After surgery today, Dr. Coit told my husband it is as much an art as a science to get it right.....size of radiation field among other things.  In my case its more tricky since its on the NECK.

So my question is, wonder if i need RAD ONC whose specialty is Melanoma or Head/Neck....I know my docs will weigh in, but wondered if anyone here had any thoughts on this subect.

After Radiation of course trying to find/decide on adjuvant systemic treatment......

Must say, this is a little scary these days....

Any thoughts appreciated.


Best to all,



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Hello. I am here to the online community. Looking for some guidance from others who have been or are going through this.

First, some melanoma history:

1.  My father died of metasized melanoma at age 70. He had a mole on his back and it changed and he didn't get it checked in time.

2. This January, at age 58, I had a superfical spreading melanoma removed from my right shoulder. It was a nonpigmented lesion that I think had been there three, maybe four at the most, months. I actually thought I'd scraped my shoulder; it sort of faded and returned. I missed my regular yearly skin checkup due to other family members' health issues so I kick myself. But I was lucky. It had no depth, no ulceration. Was melanoma in situ. I had the followup surgery after the biospy and they got it all. Note: When I went to the dermatologist, the PA said that he just thought it was a basel cell and only twice had he seen a melanoma in 10 years. Go figure right.

So - to followup I get my skin checked every three months. And in between, because I'm now perhaps overly cautious, I go in if I see anything else. (A note here - it's often two weeks to get in and it's always two weeks to get my biospy results - Does that seem like a long time? )

3. Since January, I've had several moles removed and they came back fine.

4. Since January, I've had three definite and one possible actinic keratosis frozen off my left eyebrow. Precancerous, the PA said. No issues.

And now for the issue and the real reason for my posting.

5. On Oct. 27, I had my regular three month skin check. All was well. This was when my PA - who I think is pro active and always listens to me - froze two of the Actinic Keratosises. While I was there, I asked her to remove two moles on my stomach. She did. One was small and it came back fine. The other one came back with "severe atypical cells." I go in for more surgery Nov. 24, although I'm hoping to get that moved up but don't think the schedule will allow.

Here's the issue:" THERE WERE NO CLINICAL SIGNS on this mole - and yet it comes back with "SEVERE atypical cells." In fact, four different medical personnel in this practice have looked at this mole, sometimes as regular checkups and other times at my questioning, and NEVER saw any reason to remove it.

SO here are my questions and if anyone can answer any or all of them I would be most grateful.

1. Going forward, what do I do about moles on my skin? How can I be sure that there's not another one of these "nothing looks bad but it's bad inside" moles? Do I insist on EVERY mole that's bigger than a certain side or isn't completely round or I just don't like be taken off? I'm ready to do that! That frankly is my major worry - if you are supposed to get checked and watch for evolution or changes but there aren't any and it's still severe atypical cells, is there any way to be MORE pro active?

2. And now I have questions about what I've been told by the nurse and the PA regarding this severe atypical celled mole. First the nurse said it "is not cancer" and then said "it's pre cancerous." Then she said that it was sort of like the actinic keatosis. Then she said that they're take a bigger chunk of tissue and send it off "to see if there are any more cells" and then she said "to test to see if it's melanoma." And I said Wait, you just said it's not cancer! And she sort of backpeddled and said, "well that would be rare.

3. Now to the information from the PA (my regular PA isn't in the office this week so I talked to another one) He said that "you have nothing to worry about." And that "you never know if these things will be turn to cancer or not." And he dismissed my question about why no one thought on exam to remove this mole and it's got severe atypical cells. And then he said that really concerned me "You know there's a fine line between severe atypcal moles and melanoma in situ. Some pathologists would say it's one, some the other. It's like a political debate." And then on my questioning, said oh, no it will be fine.

4. The PA also said there were "just a few severe atypical cells at the edge" and not deep into the sample.

So there are my questions/concerns. I would appreciate any direction.

Also, the entire year has stressed me out. I spend lots of long nights looking at every spot on my skin, trying to catch the cancer before it gets me. It's totally destroyed my emotional balance and I feel like I've got nobody to talk to. So again thanks for any help/advice/suggestions




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Bobman's picture
Replies 3
Last reply 11/11/2015 - 4:03pm
Replies by: stars, Bobman, Janner

I am  now up to 6 primaries. Besides  that, I am producing  more lesions  at an incredible  rate lately . Depending  who I  see,the opinion  varies  on  what is the best biopsy  method . My surgeon  prefers punch,while most of the dermatologists have performed  shave. I know most of what I've  read here suggest  punch. One thing I don't  fully understand , is if on a large lesion  I get the punch,could the area punched be ok,while the other part of it be malignant ? 

Thanks  in advance  for any help,

Aloha , Bob

We are one.

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Anonymous's picture
Replies 0

An unusual mole popped began itching and burning on my calf a while back.  A biopsy was taken two weeks ago and the diagnosis came back stage 1B.  I just regestired on the site and feel lucky to have found the community.  I appreciate what I have learned so far just from reading the posts and hope to stay informed and in charge of my treatment.

Thanks all!

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