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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FriendofMari's picture
Replies 4
Last reply 6/17/2016 - 10:55am

Hello my friends, As you know, my friend Mari is Fighting  Malignant melanoma with mts in liver and bones. The last Pet Scan showed 5 stable mts in liver, 3 stable mts on bones and one increased mts in liver (on the last pets it was 3.1 sm, now 4.1) - after 5 infusion of Keitryda.  Doctor said that Keytruda worked partially and as the analyses said Cd-117 positive in tumors, Doctor decided to continue treatment with Gleevec (Imatinib), once per day, 400 mg, for two months and check-up after two months. Is there any results, researches, private experience about this case, about this mutation? Can you help us? we are a  bit dissapointed...

thank you in advace


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Society for Melanoma Research Congress - Amazon Web Services

by JS Weber - ‎2015

Richard DCarvajal, MD. Associate Professor of Medicine. Director, Experimental Therapeutics. Director, Melanoma Service. Columbia University Medical


Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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jennunicorn's picture
Replies 23
Last reply 6/16/2016 - 11:37pm

Had another PET/CT on Tuesday. Just got results this morning. The only new thing was a 3mm spot on the upper lobe of my left lung. It was not there on previous scans. My onc is not worried about it since lung spots can be so many different things and this is tiny. Will be keeping a close watch on it with the next scans. Everything else looked good. 

My joints have been really bothering me the past week. I have a history of joint problems, mostly in my finger joints. They're killing me to type but I like torture I guess. My knees, wrists, elbows, hips.. they all hate me. Some days I feel like I am 29 going on 89. But, it's not debilitating, I can walk around and go to work and moderate my activity. My onc didn't want to put me on a steroid right now, she'd rather hold off for as long as possible and hopefully the joint issues resolve on their own and I don't need steroids. She prescribed Percocet for the pain, just to have something a bit stronger than aspirin or ibuprofen that do absolutely nothing to relieve the pain. I don't like taking strong medication, I still have a whole bottle of Norco that I was given after my surgery, took that stuff one day and it made me sick so I never took it again. I'll try a half a Percocet, but doubt I'll want to take it for long. I've tried anti-inflammatory foods like tumeric and pineapple, but at this level it does nothing. Any other suggestions for joint pain would be appreciated.

Hope everyone is enjoying the beginning of summer.

Jenn -  IIIC

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KimberlyVU's picture
Replies 6
Last reply 6/16/2016 - 10:51pm
Replies by: MoiraM, Janner, youngann, jenny22, jennunicorn, Anonymous

I am new to the board and wanted to see if anyone had advice on how to follow a thread.

i find that I am missing responses to posts I have made as well as other people's posts that I would like to follow the replies. 

is there an easier way other than logging in and checking each post for new replies?

thank you

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vickiaa0529's picture
Replies 10
Last reply 6/16/2016 - 8:34pm


Just wondering if anyone has heard if Nivo was mentioned at the ASCO conference for treatment for Stage3. My oncologist is pushing IPI and I would like to hold out for Nivo





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dodgedh2's picture
Replies 7
Last reply 6/16/2016 - 8:00pm

I still browse this forum since it helped me through many difficult times. Just wanted to pop in and say that it is officially 8 years now of being NED at Stage 4. There is hope out there, but NED doesn't take away all the worry about recurrance. I'm living life differntly than I was before, and starting to feel that i do have a future. Still in my mind that I may not have a long future, but making evry day count with the grandkids and family now!

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kpcollins31's picture
Replies 3
Last reply 6/16/2016 - 7:45pm

Thought I would post another hopeful message... scans yesterday came back clear again and I continue to be NED just about 2.5 years following a bowel resection in Jan 2014 where the melanoma had spread to my small intestine. Aside from that last surgery, I have not required any treatment but it is good to know that there are many more options available now than when I started this journey. I have been on the melanoma roller coaster for over 5 years now and that stage 4 diagnosis brings with it some anxiety and dark thoughts... but my message to those going through the same thing is to stay hopeful. NED could be one surgery or treatment away.



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Anonymous's picture
Replies 1
Last reply 6/16/2016 - 4:33pm
Replies by: Janner

I got a skin check shortly after finding out my grandma had two spots of carcinoma removed. I use a tanning bed regularly, so after her scare, I decided to be checked as well. 

At my appointment the dermatologist removed one mole that I hadn't noticed any changes in, I've had it my entire life, but she had pointed out that it was pink around the edges. I believe she did a punch - kind of leaving a small hole in my shoulder. Two weeks out it's still not healing well - the scab keeps falling off, I think because of it being a little deep. Anyways, not the point. 

They called me a week later telling me that it came back as moderately atypical, and that the cells are changing, not melanoma yet, but starting to form it? I'm not sure how that was worded, or how well that makes sense. 

I now have an appointment on July 6 to see their plastic surgeon to remove the skin around the mole and send it back in for biopsy. Of course, hearing this is kind of frightening not knowing much about melanoma, how quickly this spot could change into melanoma, if it even could, and what my chances of finding out that it could be melanoma after the biopsy could be. I know I'm all over the place here, it's hard to word all of this when I'm not familiar with the medical field to begin with.

I am just curious what to expect at this point. 

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Bubbles's picture
Replies 8
Last reply 6/16/2016 - 2:47pm

If you like cool graphs and clear explanations of where we've been, time line of new drug approvals, explanations and data from studies looking at targeted therapy, immunotherapy, and changes in target lesion based on treatment...this PDF linked in my post is awesome!!  Out of Italy a presentation by Dr. Ascierto.  Here you go:

Happy Wednesday!  - c

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KimberlyVU's picture
Replies 3
Last reply 6/16/2016 - 2:51am

Hello everyone

I was diagnosed 1b at the end of April and had my WLE and SLNB last Monday. I have the appointment for my pathology results on Thursday June 16th. 

I am really overwhelmed with all of the information on treatment and I hope you all can help. I saw the recent post of Ccarney83 with a lot of great information against interferon. 

What is recommended if the nodes are negative? What about positive?

Are people able to work during these treatments?

How do you feel about complete lymph node dissection in the case of positive nodes?

Thank you all for your experience and sharing. 


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Charlie S's picture
Replies 5
Last reply 6/15/2016 - 11:49pm
Replies by: desertsun, JoshF, jade1111, Anonymous, Bubbles

In 1987 I was 36 years old when I had my first knife fight with melanoma and came out with the lump under my arm ended up being  diagnosed Stage 3 Melanoma with a unknown primary .

That lump , which was a lymph node was surgically removed with a bunch of others and  well............there I was.

Surgery did it.  No further problems......................until.

Nine years later a lump in my chest.

I do not have a patnet here anymore due to security concerns.

Here is the long and short of everything.  

I am now 65 and my scans yesterday  say nothing bigger, nothing smaller and nothing new, but melanoma is inside of me.

I think, I lose track, it has been seven or eight  recurrences for me.

Anyway 26 bags iof IL2 under my belt last month and Monday going for more.

Jeeze, half of my lifetime suffering from melanoma.

I want to give hope,  I want to empower.  I want to educate.  I want to question I want to support, I want to live and I will decide.

And if any post by me have pissed people off, here is quote from an old Simon and Garfunckle tune the Sound of Silence

"Silence like a cancer grows"

I have enough problems, so the last thing I am going to do is shut up about my opinion and approach of how to kill that no good dirty rat bastard melanoma.

Maybe not a cohesive post, but I think I got everything in.



Charlie S






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Charlie S's picture
Replies 6
Last reply 6/15/2016 - 11:40pm

Kicked out of the hospital (well, really just discharged, but kicked out sounds beter.) Saturday.  

Big , swollen neckache ended up being  a Deep Vein Thrombosis in my neck, so have to self inject lovenox once daily straight into my belly to address that.  Get an ultrasound in four days to see how that is working.

Returning to town I went to see my Mom.  

She is on the high side of 88 years old, lives independently, walks on average of two miles daily, is a retired computer programmer and rocks her laptop and crossoword.

Well, she was confused and wanted me to take her daily medication for her. ................huh??????

Got her to the hospital and admitted with a wrritten and digital copy of her medical records, especially her daily heart and thyroid meds.

At the hospital this morning , after looking at her chart I saw she had received no medications of any kind.

I asked the nurses to page the attending physician

Just as I was explaining the importance of Mom receiving her medication and ESPECIALLY Toporol, which has a black box warning about not stopping suddenly .......................of which she takes twice daily and had not received once since being in the hospital.

At the snap of a finger, the monitors went off.................her heart rate went from 75 to 195 and BP from 147/90 to 80/50.

It took two hours for the nurses to get her stable.

After she was stable, I went to her attending doctor and simply said, "I do have confidence you are the best choice to attend to her medical needs. since you failed to see the importance of her current medical regiment" and think it best that Mom have a doctor that is bit more sensitive to her medical history.

This doctor and I had been standing face to face.  She sat down in a chair, reclined back, dropped the medical record on the floor, bowed her chest out, dangled both arms down, kicked her feet out and said "Boy, I am your mothers doctor and I know what is best for her".  Her facial expression was cold as stone.

Okay, I.m gonna shorten this up, I told her she was fired and has no medical authority over my mother ( with my mothers power of attorney in hand)

Doc calls security, two burly fellows show up right behind each of my shoulders, she tells them I can't fire her, they look at one another, some nurse calls and gets some suit, short conversation with me, then tells the are releived of your duties regarding this patient.

Took about 15 minutes and presto:  new Doc, new orders (and there were a bunch of smirking nurses)

Honestly, I don't get why it always has to be this hard for me.

Does tenacity always come with this price?

Sorry, weak moment,; and no I do not need any cheese to go with my whine thankyou.

It is so important to always be on guard while deep in the throes of medical care and remember that doctors are not all omnipotent......................they are jjust like the rest of us............human; warts and all.



Charlie S







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mjanssentx's picture
Replies 5
Last reply 6/15/2016 - 6:18pm

Just wanted to chime in with some more positive news.  My 1.75 year PET scan was completely clear.  Don't post as often because my "expertise" was Interferon and my experience has almost become "obsolete"....which I think would be considered universally good news.

Another happy news story....I met a patient in the waiting room and she told me she was diagnosed two years ago as a stage 4.  Her original prognosis was the standard 8-11 months to live.  She failed on Ipi but was doing great on Opdivo with many tumors retreating.  I had never met her before but she looked and sounded like she was doing great.  Just think, a couple of years ago...I would not have met her at all at 2 years into stage 4.

I don't think Cure is the right word yet...but hope is there.  I know there are some folks fighting for their lives out there (and we have lost some).  For the new folks here, do your homework.  The new stuff has real promise but it also carries significant challenges if not managed by a real Melanoma specialist.

For those that are Stage 1-3, I think it is safe to say melanoma is no longer a death sentence.  But you need to be vigilant.  Things like scan anxiety are very real.  Your life will never be the same after your diagnosis.  

Best wishes.



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JoshF's picture
Replies 7
Last reply 6/15/2016 - 6:09pm

I know I've seen this or read this somewhere but I'm on overload...too much waiting, researching wondering what to do. Anyway simple question...

If one has failed ipi...then failed nivo. What is the possibility of responding to combo?

I went into complete remission on ipi...started Nivo late in 2015(dec) when I only had 1 subq and then as many of you came back in many places and grew quickly over 6 months.



Let's work for better treatments....for a cure!!!!

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Tina2016's picture
Replies 6
Last reply 6/15/2016 - 5:45pm
Replies by: Tina2016, tracey25, Bradley75, WithinMySkin, Anonymous

I was diagnosed with stage 3b melanoma, unknown primary tumor in January 2016. I had noticed a lump in my left groin in November 2015 which was finally biopsied. I had never noticed any suspicious lesions and I have had yearly full body dermatology checks ever since I can remember. I have history of 5 BCC on my chest and back area over the last decade, so I am pretty diligent with all that. The report also showed that I have the BRAF gene. My PET scans have shown no other evidence of disease.

I have seen a medical oncologist and 2 surgical oncologist who have all agreed that I need to have a complete lymph node dissection of my left groin.

I had already been scheduled for a left hip replacement and the doctors agreed that I should have that done first since I was in extreme pain. That was done in February and I have now recovered from that.

My questions is...with all the advances in drug therapies, should I consider getting an opinion from Sloan Memorial, USC, MD Anderson or Moffitt?

The possible complications from complete lymph node dissection have me feeling quite anxious!

Any thoughts or suggestions?

Thank you, this has all been quite overwhelming!




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