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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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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Anonymous's picture
Replies 0

im donating zelboraf vemurafenib two boxes, anyone interested? leave you email and ill send you a response there

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mom3girlsFL's picture
Replies 8
Last reply 9/25/2015 - 10:29pm

Hi Everyone,

It has been a very long time since I've been here.  I guess after so many clean scans and decent health I just went about life.  I really, truly NEVER thought I'd find my way back here.  I guess I am searching for some positive feedback as I begin a new melanoma journey.  I don't know why this time feels different, but I am a bit freaked out - unusual because I've always prided myself with a strong and positive outlook.  Maybe it's because the past two weeks have been unbelievable and I've just now let myself settle with all the news?

I promise to update my profile soon but briefly my history with mel started in 2003 stage 1 surgery, all cured. In 2010 I had recurrence in my groin lymph nodes, had surgery and did hd interferon for a month and 1 month self injection but stopped due to recurrence.  Had surgery again and have had clean scans until two weeks ago.  Through CT , PET and biopsy I have multiple enlarged retroperitoneal nodes, para aortic nodes, and lung node involvement.  Several of the nodes measure up to and slightly above 2 cm.

Oncologist is starting me on Tafinlar and Mekinist.  This process just started yesterday so I should hear from pharmacy by the end of the week.  Ive read it is very expensive.  Onc also wants me to have surgery consult, which i have scheduled Thursday, but he feels there are too many to consider surgery at this point.  I am also having Brain MRI Thursday.

I feel like I have been living in the twilight zone for two weeks.  It broke my heart to tell my husband and children.  They were so young before and they still are.  My oldest is special needs, almost 17.  My other two are (almost) 15, and 12.

PLEASE tell me your good stories and your positive experience with taf/mek, but please tell me also what to expect, no sugar coating!  I am scared.

God Bless this MPIP community!

Do not fear tomorrow, God is already there.

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dentholla's picture
Replies 3
Last reply 10/3/2015 - 4:18pm
Replies by: Beehappy, dentholla, geriakt

Today marks week 12 for my husband on the Ipi versus Nivo trial at Texas Oncology.  He is Stage iiib and we are hoping for the best as scans are already underway.  We should meet with our doctor later today to see if we can proceed with treatment.  

He and I both feel fortunate as he has experienced very little side effects.  He is either getting 9mg of Ipi or 3mg of Nivo.  A little fatigue the day of/after treatments.  At the beginning had a slight rash on his arm but it went away.  A little upset stomach here and there but to date hasn't had to offset it with meds.  Bloodwork has been in the normal range and low LDH when they've tested him for it.  He will be tested for LDH again today.

I've read so many positive things about this trial and hopeful that the efficacy we all expect to see with these drugs being used in adjuvant setting prove in the research.  Here's to hope!!!

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ldub's picture
Replies 3
Last reply 9/23/2015 - 7:24pm

For those of you in Michigan or close to it, I just received a mailing for a free melanoma seminar at UM Ann Arbor on October 3.  It looks like a presentation that is being put on in conjunction with AIM at Melanoma.  Sessions include National Opinions on the State of Melanoma, Surgery in the Era of More Effective Therapies for Melanoma, Keeping Up with Changing Treatments for Advanced Melanoma and Importance of Clinical Trials.  It may be useful for anyone recently diagnosed and/or their families to gain a better understanding about managing this disease and learning about the most current treatments.  To register, the flyer instructs you to go to and click-on Symposiums.

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momof4boys's picture
Replies 1
Last reply 9/21/2015 - 10:40pm
Replies by: ET-SF

So I had my clnd done 2 years ago and out of nowhere I know have 2 little black dots on my scar. They are close together. I know it's not a stich because I have one of those on my wle. It's not a hair either. What do you guys think? I think I see my derm next month.

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BuzzBrown's picture
Replies 6
Last reply 9/23/2015 - 9:45pm

I have recently had wide local excision and lymph node removal. My DR reported that the cancer had not spread to my lymph nodes. My Breslow thickness was 2.65. My Clark level was IV. There was no ulceration. Mitotic rate of 2.  I go back for a surgical follow up in a couple of weeks.  I feel at a loss right now. I'm not sure what to do next. I almost feel that not enough has been done. I've not had an MRI and that makes me nervous. What if the cancer skipped that lymph node they took out and went somewhere else?  Also, to my knowledge, they did not do any genetic mutation testing on my cancer. The doctors really haven't told me much of anything other than the cancer hadn't spread. Should I be asking for additional treatment as a preventive measure or even a second opinion?  I just don't feel reassured yet that everything has been addressed.  I do have a family history of cancer. If anyone has any advice on questions to ask or other avenues to pursue please let me know. I just want to make sure all my bases are covered. I don't want to go back in 3 months for a checkup only to find out something was missed because I wasn't aggressive enough in my own treatment.  Thank you!

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jamieth29's picture
Replies 3
Last reply 9/22/2015 - 9:29am
Replies by: dentholla, jbronicki, DZnDef

Feel like the first positive news I've had. As i posted before i have been taking braf inhibitors for 6 weeks now. My local oncologist is on vacation but i am able to text him. I asked if he seen my ct results from scan last Thursday and he replied that the 18mm iliac lymph node that showed on last scan has shrunk to 7mm. I knew the drugs were working because the in transit spots that were visible on my scar had all shrunk. I so wish the braf drugs would keep working. They are powerful drugs. Hopefully this gets me back to surgically resectable. I celebrated by helping a buddy track a big 10pt buck and proceeded to have a couple to many beers today! I am from Wisconsin so today was great. He is going to text me full report tomorrow.

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