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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Jubes's picture
Replies 4
Last reply 9/26/2015 - 12:25pm
Replies by: davekarrie, Bubbles, Jubes

Hi all

Just an update on my progress. I had to stop keytruda on August 7 after 11 months and stable and reduced tumour in my lung. I have terrible arthritic/myalgic type pain pretty much paralyzing me in the mornings. It takes a few hours to be able to get out of bed. I am on steroids and now oxycodone for it. But this week I saw a rheumatologist who is a scientist and teacher as well at several universities and I was impressed with his dismissal of my presumption that the pain is due to keytruda. He has sent me for a million new blood tests bone scans and spine mris. He is counting everything out one by one and I hope he can get to the bottom of it. I just wanted to let you all know, as I am the only one I have come across with this so it may be interesting for you or someone in the future if he finds that the cause is the immunotherapy, even if it has somehow triggered genetic rheumatoid arthritis which my mother had at a much older age (I am 58). The doctor is a specialist in women with breast cancer who ended up with arthritic disease symptoms from their treatment 


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Anonymous's picture
Replies 5
Last reply 9/28/2015 - 4:28pm

Is anybody combining Keytruda with alternative therapies?

For example using vitamins, supplements, detox, saunas, enemas etc with Keytruda.

My doctor said i could take any supplements i wanted but he wasnt too keen on doing any detox procedures. In fact he advised against it.

What are other peoples experiences?




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Daisy2004's picture
Replies 14
Last reply 9/28/2015 - 3:53pm


My name is Diane. I couldn't get a username with Diane, So i used Daisy who is my dog. I am a little confused. I had a biopsy of mole 02/15. It came back as a 2.25 Melanoma. I had surgery WLE and SNB. They did not find anything in my lympnodes. So I have been seeing myDermatologist every three months. Long story short I have a very strong family melanoma historyy Dad had occular melanoma, my sister had 8 primary Melanoma's and my brother had a 1.0 Melanoma. We were used in a study and it turns out we have a BAP1 mutation, which causes increased risk for Melanoma. I had been seeing my dermatologist at MGH Boston. last month i found a lump under my arm and was referred to medical oncology.When i went for my appointment the lump is an enlarged lymph node, but not too big, so he decided we watch it. What he said he was concerned about was that I had MICRoSatellites in my original biopsy. He said that microsattelites, in transit mets, macro satellites, are Melanoma cells that had begun to metastasize away from the primary tumor. He said that tells him it is an agressive Melanoma and that makes me Stage III. I am to see him every 3 months and scans every six months. I am scheduled OCT 12th for Brain MRI, CT SCAN of chest,Abdomen and pelvis . I will be asking my derm, but I don't understand why I wasn't told this in February. I did find information online that states it is a stage three diagnosis. I have a question ? 

Has anyone else had a Melanoma with satellites and what treatment if any are you doing ?


Thank You!

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arthurjedi007's picture
Replies 14
Last reply 9/28/2015 - 5:31pm

Doc decided to cancel the keytruda il10 trial I was supposed to start today. He wants to be more aggressive and do the non trial keytruda plus abraxane. Not sure when that will start. Doc said today but nurses are saying this weekend or next week.

Any thoughts about that combo? I guess it's what I'll go ahead and try. It's one dose. Then 3 weeks another dose. Then 3 weeks and scan. He said abraxane is usually weekly but since he's combining keytruda it will be 3 weeks. I've been off treatment exactly a month so hopefully it starts soon. I'm getting in much worse shape than I was a few weeks ago when we first came here.

Also if I understood right they can't do genetic testing on my shoulder. The biopsy doc swore he could tell on his ct the difference between necrotic and not. But all the cores they took out were necrotic. So no testing. No til tcell treatments. He said I wasn't in good enough shape for til anyway.

Also the tiny needle kidney biopsy was also mostly necrotic so they can't tell what type of cancer it is. It did have melanin in it. But the scans show it was bigger than last month so it must not all be necrotic.


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On Wednesday, October 21st, the MRF will host its 1st Annual Wings of Hope for Melanoma gala at the Radisson Blu Aqua Hotel in Chicago.

Our Wings of Hope for Melanoma galas bring together local melanoma communities to celebrate recent advances in research and recognize local heroes with the MRF's Humanitarian and Courage Awards. Gala attendees play an important role in the fight against melanoma by raising awareness and much-needed funding to advance the melanoma research field.

On October 21st, we will present our Humanitarian Award to Dr. James O. Ertle, Assistant Professor of Dermatology at Rush University School of Medicine and honorary member of the American Academy of Dermatology. Additionally, the MRF is proud to present our Courage Award to Mike Gorman in recognition of his courageous fight against melanoma. We will also welcome WGN TV Anchor Dina Bair as our Master of Ceremonies . The event will feature cuisine from the culinary neighborhoods of Chicago, signature cocktails and unique auction items.

If you or a loved one are in the Chicago area, please join us! Tickets are still available and proceeds directly benefit the MRF’s mission to promote research, education and awareness of melanoma. Purchase your tickets at:

We hope you see you in Chicago!

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mrsaxde's picture
Replies 10
Last reply 10/2/2015 - 7:37pm

OK, I have a question for everybody.

I had my 4th cycle of Keytruda today, and the nurse told me that my veins are no good. Never had anybody say that before today. I only have one arm for them to use, because of the lymph node dissection from my other arm. She recommended that I contact my surgeon about getting a port.

So here's my question. Who else here is getting Keytruda, or another long term IV therapy who has a port? What are your experiences with it, and what is your opinion of it? My wife, who is an RN, says that since my treatment plan says I'll get Keytruda "until progression," a port makes a lot of sense. It does to me, too. But I don't know anybody who has or has ever had one. So if you have one, or you have had one, tell me anything you think I should know.


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Anonymous's picture
Replies 6
Last reply 9/26/2015 - 9:34am
Replies by: ET-SF, BrianP, Julie in SoCal, Anonymous

I'm looking for a doctor located within the facility that can read the biopsies taken during MOHS surgery with in the same day.  I think it is horrifying to have to have MOHS then go home and come back day after day for more until they have gotten all of the melanoma.  I am looking for somewhere other than Duke University .  I live in VA. 


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holy moly melanomy's picture
Replies 4
Last reply 9/24/2015 - 4:44pm

Hello All!  I am wondering if I can pick your brain on something.  How do you get doctors to have a little bit of concern about your health?

Along with Melanoma, I also have Ulcerative Colitis throughout my entire large intestine (DX 2007).  The last couple of years I have had this pain that I assumed was the U.C.  July of this year I had my 2 year colonoscopy and everything looked better than it has in years - no ulceration, very minimal inflammation - which is great news, however it doesn't explain the pain.

Pain is all day, every day.  Mainly lower right side, achy at best - sometimes more crampy.  A few times a week I will get an intense stabbing pain that luckily only last a few seconds.  I can actually feel my intestines throbbing during "bad days". 

Following the great colonoscopy, I went back to my PCP (Kaiser) and informed them about the pain.  She suggested a PAP and an ultrasound to check my internal lady bits: uterus, fallopian tubes, ovaries and bladder are tip-top shape.  Back to the drawing board.

Two weeks ago, I passed blood. The following day, I got up to go to the bathroom and couldn't stand up straight because of the pain - I thought I was going to collapse.

Last Friday I saw a Gastro doc who ordered several blood panel tests and everything is in the normal range except for my lymphocytes being out of range low - some others are right on the cusp of being either too high or two low (examples: C-Reactive Protein, Basophils & RBC Nucleated).  She also gave me an anti-spasmodic to take and she assured me this would help with some of the pain. 

Fast forward to almost a week later - not really helping.  Tuesday morning @ 3am I was lying in bed and had the sharpest pain that I have had yet.  I wrote the doctors and told them what is going on and asked for a scan or something (which I'd love the pill camera just for the damn science of it).

I got a response this morning saying that "it's likely I have IBS".  I cried.  IBS doesn't bleed.  IBS doesn't wake you from a sleep for pain.  How do I get them to be concerned??!

"Everything happens for a reason"


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WallyE's picture
Replies 5
Last reply 9/26/2015 - 8:41am
Replies by: BrianP, WallyE, Jubes

Hello all

I am from Johannesburg South Africa

I have not visited this site for quite some time as I went NED during 2011 having had Melenoma in the lung (primary a mole on my ear which was supposed to have been in situ.

In March this year I was diagnosed with prostate cancer and yesterday I underwent Brachytherapy (implantation of radiation pellets) after having had a TURP in June.

Since the beginning of the year I have been plagued with a cough. None of the doctors I saw could tell me what the problem was. I eventually asked my GP last week to refer me to a specialist for a colonoscopy and / or gastroscopy to see if we could get to the root of the problem. He thought this was a good idea, referenced me and I had the procedure done last Wednesday. I was told it was a very large stomach ulcer and that my colon was clear. Good news! But because of my previous history with melanoma, the surgeon deemed it appropriate to send a biopsy sample for analysis.

Good thing he did. I got the result yesterday while in hospital after the Brachytherapy while waiting to be discharged.

I was told that the ulcer turned out to be a rather large melanoma tumor. What a shock to the system!

Anyway, we will be meeting next Wednesday to discuss the way forward, incorporating a full body pet scan to see if it has possibly spread to any other parts of my body.

I am told that if it has spread further, I may have to apply for a clinical trial. If I do not qualify, obviously because of the prohibitive cost of the treatment, we will have to see if my medical aid will pay.

The other alternative is a stomach resection.

What I need to know is what is the prognosis and whether anybody out there has has a similar diagnosis and how was it treated. I am really floored as this was the last thing I expected.


One day at a time.

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AnitaLoree's picture
Replies 1
Last reply 9/24/2015 - 11:10am
Replies by: _Paul_

Thx Paul for posting yesterday re your Keytruda fatigue, taking a break, now trying modafinil with good results.  Fatigue from Keytruda bugs my husband too so spoke w our oncologist @ today's exam/infusion. He says the latest is a tweaked form: Nuvigil (armadafinil), apparently less SE's/interactions.  Is being used in several glioblastoma trials bcs fatigue such a big problem for glioblastoma folks. (Didn't get into if Kaiser is involved in any). We will pursue this next month. Husband's celebrating 1 yr anniversary on Keytruda and continues PFS. So grateful for this extra time and don't want to mess anything up! Will tread carefully but would be great to have some energy again. Peace, perseverence and +++++mindset to all you tough mel warriors. A.L.

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Millykamp's picture
Replies 7
Last reply 9/24/2015 - 10:03pm

Well got the phone call 


the SLNB showed melanoma cancer...   Can I ask what will I be expecting?  I go see the doctor on Oct 7th and get set up for another surgery 


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Anonymous's picture
Replies 10
Last reply 10/1/2015 - 12:06am
Replies by: Anonymous, Prd10, stars, SABKLYN, ldub, ET-SF

I have been diagnosed with Melanoma insitu in my left nostril.  It was found by accident during a skin screening that was done.  The doctor saw a small bump ( I had a real hard time seeing the bump) that she thought was basel cell.  They did a biopsy and the bump was just fybroid tissue but they found melanoma insitu under the bump.  They wanted to do MOHS surgery there, but i chose to go to another center that could read the levels on-site.  I was told that with Melanoma the pathology would have to be sent off overnight to have it read instead of being able to read it in the office like you do with basel cell. I wanted to have it done all in one day instead of the possibility of having to go back each day.  So i went to this highly recommended university to have a consultation and then surgery immediately thereafter.  I was totally not prepared for what i was told.  This dr said that they would have to at a minimum take my left nostril off, take cartlidge from my ear to rebuild and then cut from my nose to the corner of my mouth and do what i assume was going to be a flap.  He never really told me that in those words.  I was so upset that i don't think i heard anything else that was said.  I was going in thinking a small MOHS hole and a skin graft from behind my ear.  His bedside manner had no compassion at all.  My husband and i left without doing the surgery that day.  I needed time to research and absurb what i was told.  They would not do a second biopsy which i don't understand why.  I am almost 51 years old and in great health.  Yes, like many i have tanned over the years, but not abused it.  To say the least i am petrified of them cutting off half my face.  It just seems to be so many unknowns.  I am seriously thinking of not doing anything.  If it is in the very early stages who is to say that it will take many many years before it goes any further.  Especially since it cannot be seen with the naked eye. I know God is good and that he has the ability to keep it at bay if he chooses.  I would really like to talk to someone that chose not to have such an evasive surgery on the face.  I am really scared more of the surgery and the recovery than with the fact that it is cancer.  

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Replies by: Scooby123, Bubbles

It's a long story for me but when had melanoma removed in 2011 but GP kept saying for a year it was nothing I was then treated by a surgical team who said if it comes back it would by by your lymph nodes. We will check you every 3 months for 5 years. I was still not convinced it was clear but they said it was. I was checked every 3 months and on my 4 year i did on times attending checks complaining some thing was not right , but was told it will be my arthuritus playing up and everything was ok. I had a bowel problem which when I told my doctor who I was under he said well we will do a one off scan. Not sure he wanted but due to my other issue he did one. Then going to the appointment for results was told I had 3 tumours on liver 2 on lungs and lymph node involment . I was told no cure started me on ippi cus I do not have the braf gene. Ippi reduced tumours by 50% so I would think 1.5 would be my biggist tumour. Does anyone have surgeons that would remove them now they have shrunk or is it watch wait. I am having a second opinion at another hospital but advice from you guys would be appreciated . I feel I do not trust them anymore after what I have been through. Hope this makes sense 

Scooby ❤️

Just to add I was right from the start I was not clear and it went straight through my body not my lymph nodes. I had six mels at the bottom of my back inside my body not on skin .




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Anonymous's picture
Replies 12
Last reply 9/25/2015 - 9:31pm
Replies by: Anonymous, mrsaxde, Ed Williams, Bubbles, _Paul_, BrianP

I had my first shot of Keytruda last week and havent really noticed much except a little bit constipated a bit of rumbllings in the stomach.

Overall but I feel good.

I am wondering thou how this drug works?

Is it sort of cumulative?

So after two or three weeks i might get more side effects?

And then after next dosage maybe something more?

And how fast does it work?

I mean can it work straight away within days or does it take months?

thanks fro any respones.





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Anonymous's picture
Replies 0

im donating zelboraf two boxes (vemurafenib) anyone interested send me an email and ill send you a response, it would have to be through my oncologist, ok? just to check you have been prescribed the medicine



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