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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arthurjedi007's picture
Replies 32
Last reply 10/8/2015 - 12:53pm

Well it's been another week of no treatment. Like I mentioned the doc would not let me in the trial. He wanted to start the keytruda abraxane last Friday. It is interesting mda has what is called a business center or financials to get such things approved. I was told Friday it would probably take a couple hours and treatment would be Friday or that weekend. Monday I was told 48 hours by the bs and my insurance. Tuesday I was told it was still in medical review. Wednesday the bs said it could be 10 to 15 business days.

The melanoma group although the keytruda was approved they refused to give me a dose to get me by until the combo treatment got approved. They said the doc wants me to do both.

Apparently insurance has their own doc's. One of the latter stages is what they call a peer to peer where the insurance doc talks to your doc. Instead of having to wait weeks I would have thought a good team would get that accelerated to either get it approved or denied. But maybe that's not possible. I dunno but I'm pretty sure it is.

Anyway I'm very upset with the mda melanoma team. At least the group I have with dr Diab. By not even giving me my regular pd1 I had to travel back home missing my very important meeting with the neurosurgeon. It has been 4 weeks overdue since I've got my pd1. So yes the doc correctly saw I was in worse shape than when he first saw me a few weeks before. Plus I lost a lot of money with the nice apartment we had rented and air fare but money is minor issues compared to the important stuff.

Anyway I'm back home. I've requested via their app to reschedule the neurosurgeon appointment and treatment that never happened for the last week of this month. I'm not sure yet if I'm going back a third time or not. So far I've been hosed twice by mda in my opinion. Also my local doc is totally against this treatment the mda doc has changed to. Their refusal to work with me to get just pd1 really upsets me. So I dunno. But my back and legs hurt a lot it has become a problem just trying to walk so I dunno. That wasn't anywhere near this bad before I went to mda. So I dunno. I'm quite depressed, frustrated and upset.


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mary1233's picture
Replies 6
Last reply 10/8/2015 - 9:23am

I hope someone can explain this. The announcement that the FDA has approved the ippi-nivo combination for melanoma patients who are wild-types also included a statement that a year's worth of the treatment would cost in the neighborhood of $250,000.

Here's the queston. I get my insurance through my husband's employer who self-insures. Can my husband's employer fire him because they don't like my medical bills and do not want to be responsible for them? Has anyone dealt with this?

Don't even get me started on how the cost could be $250,000 - I do not understand why anyone whould think I am worth that kind of bill.

Best wishes to all.




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Rita and Charles's picture
Replies 12
Last reply 10/7/2015 - 11:25pm

HI All, 

It's like Christmas [ well sort of if you had a very grim Christmas] and we received Charles' medication.  Can anyone that takes this combo/ or has taken it share if you took it on an empty stomach or after eating for best "feel good" life??  

Does if make your tummy super upset?

Thanks - any comments are helpful!  

Good news, our first 5 months we got covered by a patient access $ pool - super nice gal at the pharmacy worked with us...........see, like Christmas?




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I found this brochure on brain mets from the American Brain Tumor Association.  I thought it gave a solid background for anyone where this is a new issue so I wanted to share the link.

To preface this, there is new data that says gamma knife rather than whole brain radiation may have better outcomes and is not be as damaging to the brain.  It also may not be beneficial in the long term to use whole brain radiation.   

"Study finds Gamma Knife radiosurgery alone yields equal survival outcomes for patients with two to 10 tumors vs whole brain radiation."




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Anonymous's picture
Replies 2
Last reply 10/7/2015 - 2:29pm
Replies by: 273c, arthurjedi007

The doctors are recommending radiation post surgical resection for stage 3.  Of course, there's the option to wait and see but it sounds like the recommendation is pretty strong for radiation (esp since melanoma has come back once locally).  Wondering what other people in our shoes have done?  And if you've done radiation, what have the short term/long term side effects been for you?  We are likely going to be doing  Keytruda/ study as well but need to decide on radiation first....and quickly:) 

Thank you so much for sharing!  Also just wanted to say what a blessing this site has been for us.  It's nice to know there are others out there going through this and we're not alone.  The support and information provided by the people on this site has been unbelievable.  Thank you!


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Coneflowers's picture
Replies 13
Last reply 10/7/2015 - 1:31pm
Replies by: Coneflowers, ldub, kylez, Kim K, Anonymous, Fen

So I have been trying to sign up on here for what seems like forever! Not sure why I was having problems...maybe it was my old computer.  Anyway, was wondering if anyone can recommend a pediatric melanoma specialist?  Yes, have more questons, but will start with this...Thank you!

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Anonymous's picture
Replies 4
Last reply 10/7/2015 - 9:20am
Replies by: Bubbles, Polymath, BrianP, Anonymous



Has anyone used this drug and what have you heard about this treatment?  I am going to see a Doctor who has tried this vaccine on patients and I don't know much about it.  

I believe this is an alternative option for Stage III Melanoma.


Thanks for any input.


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liberty04281's picture
Replies 6
Last reply 10/7/2015 - 8:51am

I finished Yervoy treatment at the beginning of April. I had scans every two months. Last scan was on Saturday and I saw my oncologist today. Lung nodules shrunk after the treatment, but there are a few very small left after the treatment. This is my third scan after I finished the treatment, and all scans so far are stable. My oncologist said it is very good, and my next scan is in three months. I do not know what to think.

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I have not been on these boards in years--but am back with a new concern.  Its beginning to look like every 4 years when this begins to fade something resurfaces to remind me...I aint in control.  Perhaps this post is more the cathartic need to write out my concerns hoping that another has been down this road before than any practical help at this point.

I have been diagnosed twice with stage 1 melanomas (2007 and 2011) on different sites; Plus 5 major dysplastic exisicions; 3 minors and countless biopsies over these past 8 years, I have sadly become numb and routine to these procedures.  However, always grateful how "minor" the melanomas were and straightforwad the treamtent plans (my prayers to those who have far more severe melanomas).

But now that we have basically run out of moles on the skin to biopsy, my eye doctor did the old "hmmmmmm" while giving me my annual exam.  She then said there is a small choroidal nevus that needs to be looked at in 2-3 months to see if there is any change.

Highly likely its just a freckle...but the old anxiety of "have they found something" was reawaken.  Not to mention the fact that this one is in my eyeball so I cannot obsessively watch over these 3 months.

So wondering if there are others who may tend towards a dysplasia nevus syndrome every gotten one in the eyeball?  Since they cannot biopsy (can they?) an eyeball freckle to figure out what it is, what can be done?


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ashleyc's picture
Replies 8
Last reply 10/6/2015 - 5:04pm

My father was diagnosed with mucosal melanoma of the nasal cavity in 2010. He was treated with surgery and radiation and had remained NED until two weeks ago where they found a recurrence further back in the nasal cavity. ENT is doing BRAF testing but its taking an extremely long time to get the results. He also referred him to Moores Cancer Center since we live in San Diego California but we couldn't get an appointment until the end of this month. Feeling hopeless waiting around with no plan and no answers. Any advice including of places where to seek out treatment would be appreciated. 

Thank you concerned daughter, 


ashley chavez

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Daisyduke's picture
Replies 6
Last reply 10/6/2015 - 11:27am
Replies by: nlac26, Anonymous, Daisyduke, jpg, geriakt

I have read about all of the side effects that go along with Interferon, what I don't know is what to expect  daily?  Do you feel the side effects for the duration you are on it or are there days that it subsides.  So do you have good days and bad days?


I have read that once you get past  the IV Injections and you go to Home Injections it gets more tolerable. Am I getting this wrong?  Are you able to work?


I know everyone is different but I don't know what to expect.  I know that any time on Interferon is better than going without.  I have also heard that taking it at bedtime helps.


I am going to see my Oncologist this week to discuss my treatment options whether it be Watch and Wait or Interferon and of course I am confused and scared,


Thanks for any input.



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gm77's picture
Replies 3
Last reply 10/6/2015 - 10:33am
Replies by: fortiz, kylez, Anonymous

Hello everyone,

my father (age 69) is currently been treated in Milan, Italy for metastatic melanoma with brain metastasis.  He has been on trial NCT02039947 ("Study to Evaluate Treatment of Dabrafenib Plus Trametinib in Subjects With BRAF Mutation-Positive Melanoma That Has Metastasized to the Brain") since January. Back then he had 3 brain mets, and many (non-countable in scans) and growing in lungs, kidneys and bowel. He had a great response: all metastasis gone from bowel, only one brain met left but now point-like, and only two small ones in the lungs (but stable since March). We are very HAPPY about the results also because he has no side effects, and is able to have a very good quality of life, including going to the gym and lap swimming 3 times a week.

Starting on month 10, the trial wants him to have scans (full body cat scan and brain MRI) monthly instead of every two months, as he has done so far. I guess it's because around this time many people on BRAF-MEK inhibitors see mets growing again since tumor develops resistance. We clearly want to stay in the trial as long as there is response, but I was wondering whether having a full body CAT scan and a brain MRI every single month is an overkill. 

Does anybody who has been on BRAF/MEK inhibitors have any experience on that? What was your scan frequency around and after month 10?

Thanks everyone in advance, and let me express my gratitude for your contributions to this forum: it is a constant source of inspiration for all of us who are living through this experience.



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Daisyduke's picture
Replies 10
Last reply 10/6/2015 - 10:18am


I too am terrified and have been reading a lot of post and gone on a lot of websites trying to learn about all of the new dugs out there.  Do I use the wait and see approach?  Do I try some of the new drugs?


I was first diagnosed with Melanoma that appeared under my nail on my big toe back in 2013.  It was originally diagnosed by my foot doctor as nail fungus ?!?!   and went untreated that way for months.  It was my dermatologist that did a biopsy that found the melanoma.  I had my left gerat toe amputated and my Lumph Nodes checked and they all came back normal.  Now 21/2 years later several uymph Nodes came back with Melanona and like others I am scared to death.


I have read that many people get second opinions, but I am going to the Cancer Treatment Center of America and I feel that I am in the right place.  I don't know if I am Stage 3 or 4 and what Imune Therapy I should try, I am so confused and I just don't want to be sick.  

I just don't like what this is doing to my family, my children are afraid that they won't have me around for their weddings or for my grandchildren.

I have an appointment next  week, what questions do I need to ask my Oncologist to move forward.  

I am so glad that there is a support group out there, I can use any and all support and guidance and I am glad you guys are out there.

Please help!!

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Anonymous's picture
Replies 2
Last reply 10/6/2015 - 7:05am
Replies by: Kim K, Anonymous

Has anyone used the Family Medical Leave Act protocol to go on short term disability at 60% of salary and also used their Social Security disability at the same time? Is that allowed (from what I can tell, I think it is but am not sure)? The SS process seems really complicated, but I am about to start treatment for stage 4 melanoma (I am post op and scans are done) and just want to know all the options before I start. 


Christine P. 

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Anonymous's picture
Replies 1
Last reply 10/5/2015 - 10:38pm
Replies by: Anonymous


I was diagnosed with Stage IIIa and had a sentinal lymphnode bioopsy in January of this year. One node was positive of the two removed and I decided, after much consideration, to move forward with the option of close monitoring, rather than interferon or full dissection or a trial. I had made this decision based on the arrangement with my doctor for CT scans or MRIs every 4-6 months. I have recently moved and in this province they apparently do not provide scans for Stage IIIa people that do not undergo treatment. I am looking for trials or other research that suggest the value of these scans. If anyone has any information it would be greatly appreciated.

Thank you.  

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