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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Lisa - Aust's picture
Replies 1
Last reply 10/29/2014 - 9:37am
Replies by: Owl

Hi Everyone,

Just looking for some info/experiences/evidence!

My husband Craig has been on MK-3475 for around a year now and has luckily had a complete response.

His oncologist has raised the possibility of him coming off the drug, monitoring and re-introducing if he has a reoccurance.

At this stage it is just an option he has offered (with permission from the drug company), giving us some anecdotal evidence of a few people coming off and continuing to be stable/remain clear (He mentioned mainly people who have come off due to side effects etc, so the discovery of the ongoing response has actually been incidental). Theoretically he is thinking that perhaps the drug has 'done its job' - but obviously it hasnt been around long enough to really make a statement like that.

Does anyone know of any evidence out there/own experiences etc regarding this? 

If we went ahead, I think my hubby will be the first person in our location (Perth, Australia) to go down this path. At this stage, I am not sure if we want him being the guinea pig!



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sharon0803's picture
Replies 1
Last reply 10/29/2014 - 9:16am
Replies by: Anonymous

Hi All,  I have not been on for a while.  I do need some help please; I am looking for a Melanoma Dermatologist in the NW Chicagoland area, even the near suburbs.  


Any suggestions would be greatly appreciated!


My onc has been doing the screening , but I believe I should be seeing a dermatologist for routine checks.





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Anonymous's picture
Replies 7
Last reply 10/29/2014 - 2:43am

Can anyone give me some examples of what a recurrnce located in your WLE would look like.   I had a WLE at the end of June and recently noticed a small bump emerge in the scar.  The bump is red so it makes it hard to tell if it just a normal part of the scaring process.

My melanoma dx has made me a constant worrier.



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Anonymous's picture
Replies 9
Last reply 10/28/2014 - 10:01pm
Replies by: Emcjones1, Bubbles, Anonymous

I just did my second CTC which measures how much melanoma is in the blood stream. The first one i did in June came back at .75 which according to the doctor meant that I had a very small amount of melanoma in blood stream and a very low risk of distant spread.

The second one however has increased allmost 6 fold to 4.25 whcih now puts me at grave risk of distant spread or recurrence. Now I dont know what to do and I am really gutted.

I am currently stage 3 but it seems like things are getting worse quickly although i still feel really good. Apparently the test which is the Maintrac CTC test  has a very good predictive value and is usually six months ahead of what happens.

I dont know what therapies I should try or what i can do now. They only thing they are offering is chemo or interferon which I wont do. 


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Patina's picture
Replies 5
Last reply 10/28/2014 - 6:31pm

More good news to share...

My Mom, who is stage IV with 25 brain mets treated, had her 7 & 6 month checkup after her her last treatments with ipi and gamma knife radiation. - No CT scans. Just MRI scans for her brain.

Everything is really going well. There are no new lesions and the brain mets are stable. Still no known cognitive issues or anything else to report. If things remain the same at her next MRI she will be cleared to drive some time in December. - 1 year and one day after her first treatment.

Keep your fingers crossed that these results hold. She can't wait to drive again. - Everything else is excellent.

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Bubbles's picture
Replies 4
Last reply 10/28/2014 - 5:08pm

Hi all,

Saw this article from Clinical Oncology News, Oct 2014, last night and figured some of you might want to hear what the experts are thinking on the notion of anti-PD1 as a first line therapy for melanoma!!!  Quotes and a link here if you like....

Fingers crossed! Wishing you all my best.  Celeste

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Vmarie_89's picture
Replies 2
Last reply 10/28/2014 - 4:10pm
Replies by: Vmarie_89, Janner

Im scared Im unsure of what I have on the bottom of my foot I use to give myself pedicures and from what I can honestly swear I remember I did have a tiny mole where there is now what looks to be like a mole but spread! ?!? I have no idea how to upload a picture to show you but im pretty much freaking out I dont know if medi-cal covers for any type of dermatologist bills plz plz help!

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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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