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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RJoeyB's picture
Replies 1
Last reply 10/28/2014 - 3:49pm
Replies by: DZnDef

New video (episode 13) in OncLive's melanoma series:

Of great personal interest to me, because I've been at this particular game of "whack-a-mole" (pun intended) for awhile...  following IL-2 and TIL, I've had several surgeries (two to leg bones, one craniotomy) to resect single mets that for whatever reason didn't respond (the bone mets) or ocurred long after systemic treatment (the brain met, 2+ years after TIL).  The approach has worked for me thus far, using systemic immunotherapies early on and addressing single mets as they've occurred with either surgery or radiation (or both), keeping the newer systemic agents available should the need arise.


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mary1233's picture
Replies 3
Last reply 10/28/2014 - 11:17am
Replies by: Anonymous, Janner, mary1233

I am currently in remission for mucosal melanoma, so I may be overreacting.

I have two sisters who are dealing with moles removed by dermatologists who found cancer "in situ". They are planning to follow up with the dermatologist.

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Anonymous's picture
Replies 8
Last reply 10/28/2014 - 11:11am
Replies by: kalisama, Anonymous, Carole K, ecc26, JoshF, Ed Williams

My mother is at stage 3c . After 6 months of clean scans, we found in an MRI reoprt about her brain mets. She had absolutely no probelms. What are the options of treatement?

God bless you

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cbe's picture
Replies 5
Last reply 10/28/2014 - 9:55am
Replies by: kalisama, MattF, katie1, DZnDef

My husband is stage 4 with melanoma in the liver and lymph nodes. (Had  3 doses of ipi before switching to anti-PD1/Keytruda when it metastized to liver) Scan at 7 weeks showed spots still in liver but no new spread and latest blood tests had liver functions in normal range. So we are still waiting and hoping that the Keytruda is working.

My question is about prednizone which he's been on since August. He no longer has fevers, night sweats, headaches or any of the symptoms that caused him to go on the steroid in the first place and is now taking 10 mg/day. He's currently suffering from severe reflux which is not alleviated by Nexium and Zantac. He's tried going off the prednizone but when he does he's completely exhausted. We now understand you can't just stop.  Has anyone successfully tapered off from 10mg prednizone and any advice on how to do it, supplements to take, etc, to get the adrenal glands working again? There seem to be lots of different theories out there.

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theresar's picture
Replies 4
Last reply 10/28/2014 - 9:39am

Quick review of history- I'm a 54 yo woman initially had vulvar lesion removed 3 years ago with clean margins and lymph nodes. Now Dx in early July 2014 with metastatic mucosal melanoma with lesions on my liver and lungs. Completed my 4th infusion of Yervoy 9/25 and on follow-up visit 10/23. My oncologist said he did not need a CT to determine that the Yervoy did not work. (i might agree with the status of my belly and my liver function tests are dangerously high, LDH soaring.)

I am  seeing a melanoma specialist and he has recommended 2 options  1) I can move forward with the Keytruda which would be the next step and he would obtation a CT as a baseline but he would reccomend the Keytuda very cautiously because of my liver function-he is concerned that the side effects on my liver could put me into failure quite quickly. Or route 2) He could start me on steroids and that would temporarily make me feel much more comfortable but obviously would not treat the tumors. A palliative care and likely hospice referral would come with this option.

I was told that once I started on steriods my option for the Keytruda would be off the table. Also told that Iwould not qualify for any clinical trials because  my liver function is so bad. I know that there are other treatments out there that have been approved. I do not have any of the genetic mutations ie BRAF, etc. identified.

I know that there are other options out there beginning with a 2nd opinion and certainly alternative therapies but just looking for thoughts experiences and advice. I do live in Michigan.....

Where there is Faith there is Hope!!


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5dives's picture
Replies 10
Last reply 10/28/2014 - 6:54am

Hi all,

I am 45 years old, and I have recently moved from stage 1B to 3A because of a second opinion at Memorial Sloan-Ketterting that helped clarify some very iffy pathology results. The MSK doc called me T1bN1aM0, but did not want to say "3A". He preferred to say T1bN1a. To be honest, I don't understand his reluctance to say 3A, but I want you to have the full picture. My one lymph node had micro, not macro metastasis. The MSK doc said if it was a macro amount he would recommend CLND, but for my situation and my age, he thought it would be overkill. MSK does not do interferon. 

Overall, I felt very reassured by my visit to MSK and am oddly comforted by being told I'm T1bN1a instead of "just" stage 1b, because the MSK doc recommended 6 month scans. He also recommended being careful with brain scans as melanoma rarely goes to the brain without going somewhere else first. He said my oncologist at Loyola in Chicago could choose what scans he would like to do.

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BrianP's picture
Replies 3
Last reply 10/28/2014 - 5:54am
Replies by: rick1981, Bubbles, tschmith

I'm registered and planning to attend.  Would be nice to put some faces with some names if anyone else is planning to attend.  I'm going to try and take copius notes but it's been a long time so my note taking skills may be a little rusty.  I'll come back and post any good info I learn. 


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KimP's picture
Replies 7
Last reply 10/27/2014 - 3:54pm

Hi. Used to come here. First husband had melanoma and passed away 6 years ago. I just had mole biopsies with the subject line. Derm says it is cancer. I say it is not. What do you all say?  I was Horski or Kimmyie back then if any of you were here then.


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uccio2014's picture
Replies 4
Last reply 10/27/2014 - 4:57am

Hello all,

it is the first time i write here but i follow the site dialy.

Here my question:

there is someone under zelboraf for a long period?

any ned? and if so after how long? and for how long?

how did you detect it had stop to work?

Praying to go on  reading about all of you for years


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MattF's picture
Replies 14
Last reply 10/26/2014 - 11:45pm

Hey everyone

So I am currently on Xgeva injetins fo my bone mets.  And I just finished Yervoy.


Had TAF / MEK Jan - Jun (failed in June and i went downward fast) 

Ipi Aug - Sept 

2 rounds of radiation (brain spots and abdomin) over the summer.


Start Keytruda  on Wed 


Thinking this is the last treatment


pretty darn scared.




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Anonymous's picture
Replies 0

HI Everyone,


I will be in chat tomorrow night and will see who else I can find of the old timers,  Hope to see you there

Monday night at 8 PM EST

Hope you can jon us 

Love and Light

Carole K

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Emcjones1's picture
Replies 17
Last reply 10/26/2014 - 4:54pm

I am 4 weeks post initial diagnosis, and 3 weeks post WLE and SLNB. Pathology identified micrometastases in two nodes. Can anyone else in a similar situation tell me how long their oncologist waited to do PET or CT scans?

I am a 50 year old female biomedical scientist with stage 3a melanoma.

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_Paul_'s picture
Replies 25
Last reply 10/26/2014 - 10:00am
Replies by: kylez, kalisama, Bubbles, _Paul_, Anonymous, Janner

Hi Everybody,

I haven't posted here for quite a while. But it looks like I am back! I reluctantly joined the stage 4 club last month, a little over two years from my initial diagnosis.

My oncologist suggested I embark on a cliniical trial which combines the standard of care, ipi, with irradiation of one of my tumors. The hope being that my immune system will recognize some of the matter from the tumor as antigenic, and combined with the ipi will produce a higher response rate than if the ipi was used alone.

We also talked about nivolumab, since it just got approved by the FDA and has a higher response rate than ipi. But the FDA has approved nivo only for when the ipi has failed. That sounded backwards to me, since it would seem like you should try the drug with the best probability of response first and then move down the line.

So then I got my first insurance statement from the ipi which came in at over $40k! I have never been much of a conspiracy theorist, but given the fact that Bristol-Myers Squibb makes both ipi and nivo, and that the nivo will likely cost the same or more than the ipi, it sure seems suspicious!

I talked to my Dr. about getting the nivo first, and he said that would be an "off-label" use of the drug and not covered by insurance.

Any thoughts on why I have to try (and fail) the ipi before I can try the nivo?

Thanks! - Paul.

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Anonymous's picture
Replies 2
Last reply 10/26/2014 - 8:33am
Replies by: kalisama, Janner

Can blood moles be melanoma? I was first diagnosed in 2003 and have been NED since my WLE. I required no other treatment. 

I have a blood mole that has been there for a few years but is changing. I can't get into derm until Friday. Freaking out a bit.  TIA 

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