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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Daisyduke's picture
Replies 3
Last reply 10/5/2015 - 10:14pm
Replies by: Patina, Linny, Anonymous

Can anyone recommend any medical clinics or specialists for a 2nd Opinion?  How do you get on Yervoy and does Insurance cover it?  What about  Watch and Wait.  I believe I am at III A or III B.


I need to make some decisions soon before my followup appointment.  I do not want to go on Interferon!!!!!

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Anonymous's picture
Replies 2
Last reply 10/8/2015 - 3:35pm
Replies by: brewgirl68, Kim K

Anyone have BRAF testing done in stage 3 (we are stage 3b w/local recurrence)?  We are having difficulties getting insurance to cover.  I think it's very important to know as soon as possible.  And it would also be helpful as we decide on doing a study, etc now.  Any ideas, tips, etc you have would be wonderful.  Thank you!


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I just started the Clinical Study NCT02388906.  I am stage IIIB and this trial is for either Yervoy or Opdivo with placebo for stage IIIB and above full resection of lymph nodes. 

I was told when I signed up for the study that BMS (the sponser) would cover all treatment costs that are directly related to the study and I would be responsible to pay for all "Standard of Care" for my diagnosis. 

I have had 3 infusions so far and it turns out I was billed for everything but the drugs.  Is there anyone else on this study and what were you billed for?

I would like to email privately about this to compare but I have been billed for all CT scans, all infusions (Chemo room) and all DR visits to have the DR sign off on my labs to get the infusion.  The only thing I was not billed for was the drugs.

I have to question how they can charge me for infusions since almost half can be a placebo? 

You can PM me directly.


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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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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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Anonymous's picture
Replies 0

Has any one started feeling better after nivo/Ipi 

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Anonymous's picture
Replies 1
Last reply 10/4/2015 - 1:49pm
Replies by: Patina

Hi I'm 27 years old and when I was a kid I got badly burned in the sun and ever since had a mole on my back it had alway been small and my mum did take me to my doctor to have it looked at and he said it was fine but if it changed come back I can't remember a lot of this as I said I was a young boy now at the age ov 27 I can alway remember having this particular mole and have noticed it changing over the years growing up as a teenager through school and all through my 20s I know I haven't had it looked at since I was four from what my mum tells me but she is now very concerned as she noticed it last week and she told me that a doctor told her I would have a really high risk ov devolving skin cancer and to watch the mole very carefully which she has said both her and my dad were keeping an eye on it looking for changes and as it didn't over a year they stopped I grew up and they hadn't really thought about it it's 1inch wide and 3 quarters  ov an inch tall it has three different shades of brown it has a rugged edging and surrounding like in island surrounded in sand but not if you get what I mean and in the last 4 months been itching like hell any advise please 

Christopher Mclear 

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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 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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Chicks07's picture
Replies 5
Last reply 10/5/2015 - 3:18pm
Replies by: geriakt, Chicks07, Patina, MattF

Brand new to this.  Had a shave biopsy come back melanoma 9 days ago and just 2 days ago had wide excision surgery on my right shin.  Can someone tell me exactly what path report really means?  Like what stage?

Melanoma, level 2, .6mm tumor, T1aNxMx

I fear that I moved to fast and didn't really understand what I even was diagnosed with prior to jumping into surgery.  Maybe should have done MOHs instead? Unwrapped bandages today and my leg looks horrible, wondering what others may have encountered with surgery on the tight areas like a shin.  Don't know how to attach photos here :-)

also no testing to nodes,, this ok?



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Christine.P's picture
Replies 2
Last reply 10/4/2015 - 11:32am

I just found out yesterday that my melanoma has spread to a tumor near my sternum and I will have a biopsy of another tumor in my breast on Tuesday. (My surgeon was able to do the biopsy on my sternum, but wants a radiologist to do the one in my breast because the ultrasound equipment at the hospital is clearer...)

As I have been doing continued research and reading, I find that I am mainly just overwhelmed and haven't been able to find any clear information about the actual drug treatments for my stage. I know everyone is different and I know it depends on whether I have the BRAF gene, etc. but if anyone can simplify the options/standard treatments for 4a, it would be helpful. 

I meet with the medical oncologist for the first time on Monday and I know I will get more information then, but I want to know as much as I can before I go in so I can ask better questions. 

Some stats: 2 primary sites - rght calf (very deep; skin graft; no spread) and left elbow; full axillary dissection; one large positive lymph node with 20 total removed); and now spread to sternum and possibly breast. (MRI and CT scan showed no mets to brain, lungs, or liver). 

Even you can just share your stage 4a stories, it would be helpful. Thank you all for being here for us newbies...

Christine P. 

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Anonymous's picture
Replies 5
Last reply 10/4/2015 - 1:13pm

I read somewhere that Keytruda is not very effective with liver mets compared to mets elsewhere in the body and in fact the ORR is under 20 percent.

I asked my doctor if i could get my liver mets resected but he wanted me to go on Keytruda for a few months first because there is mel in two other places

Now i guess my question is that if I progress in three months time it might well be too late to do anything as the liver mets will be too big.

He also told me that the liver would shut down in about six months without treatment for the liver mets.

All in all very depressing stuff.



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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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Debbieamccoy's picture
Replies 2
Last reply 10/2/2015 - 11:56am

My ast doubled to 660 one week after Keytruda . I have mets to liver . Trying to stay positive 

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mom3girlsFL's picture
Replies 2
Last reply 10/3/2015 - 2:17pm
Replies by: mom3girlsFL, jamieth29

Brain mri was clean! Guess i am just dealing with nodes in retroperinoteal area as well as one suspicious lung nodule. Surgery consult was informative-nodes in that area are difficult to get to and high risk of serious complications. He agreed with oncologist to try meds first.

So, just got meds this afternoon, will start tomorrow PHEW!!! I've heard so many comments of people being on taf/mek combo with NO side effects-I WILL BE ONE OF THE RESPONDERS AND NO SIDE EFFECTS!

Thank you to those who responded to my prior post. I have always appreciated the knowledge and support from this forum!


Do not fear tomorrow, God is already there.

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