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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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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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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nlac26's picture
Replies 3
Last reply 10/5/2015 - 11:55am
Replies by: nlac26, tschmith, Gene_S

I have been reading this forum since my first diagnosis with melanoma in Feburary. I have found so much helpful information and wanted to say THANK YOU for helping a scared, nervous patient understand more of this life changing event  My initial diagnosis was in Feb. 2015 and listed as stage 3B. My husband and I had just moved to Colorado and as life was busy, I didn't pay much attention to a pesky mole on my back. BIG MISTAKE. As my oncologist says, you can't think about what you should have done, but think about now and where to go forward. I hadn't been to a DR in about 5 years and with speed, I found myself going every week. My first Pet Scan revealed the melanoma had already traveled to my left arm lymph nodes. One week later I was in surgery having them removed. They also ran a Sentinel Node Biopsy on me the morning of surgery to determine where my lymphatic system ran. Since my mole sat in the middle of my back, the tracer ran to both arms. At that point, the surgeon decided to pull lymph nodes out of both of my armpits. This was all done on a Friday. I couldn't help but get weepy in the hospital thinking about all the other people in the world going on with their happy Friday, making plans for the weekend and I'm stuck in a hospital bed, I've been poked on and ran thru a scanner BEFORE being knocked out and cut on in the OR. Not a Friday I care to repeat. Surgery went well and I actually recovered remarkable well. No complications or infections, my JP drain was removed after 4 days..I was back at work within one week! Then it came time for treatment.

I read a lot on here before I started treatment to get a feel of what other patients where going thru or using. My oncologist at the time had pushed for interferon. Had I known then, what i know now, I would have opted out or picked another treatment..but being scared and feeling overwhelmed, I went with it. Everybody is different and some do fine with interferon and it's a great option for them. Me personally, wasted 6 weeks of life feeling like crap, dragging myself to the Cancer Center for the 20 "boot camp" treatments, for it to do absolutely nothing for me. It wasn't until I was to start the self injections at home, that I had a bad gut feeling about my treatment and decided to search out a 2nd opinion. My body was shot. I was having horrible anixety attacks, something I never suffered from before. My head was constantly fuzzy and achy..I was DONE with interferon. I was pointed by a client of mine to a new dermatologist and quickly made an appointment with her. She inturn, pointed me towards the Melanoma Clinic at University of Colorado Hospital. From our fist appointment there, I have been impressed!! Sometimes I kick myself for not doing better research from the begining and starting there. We moved to Colorado to live a life of outdoor adventure, leaving all our family and friends we love behind.  When you're hit with the C word, hundreds of miles away from family and you have to face it on your own, you put your faith and trust in what the DR's are telling you is right..because you have no point of reference and you're SCARED. We did what we thought was the I try not to stab myself with "why didn't I?" too often.

My new Dr and University pulled me off of interferon. In his words, " I don't give this to my patients ...I won't make you continue it" Basically I was told that it only really delays reoccurance and that's about it. Heart crushing to hear that. I put myself thru hell with that drug. For what?!!..but ya can't look back. Now as an established patient at the Melanoma Clinic, we made a plan on moving forward. I scheduled a follow up Pet Scan at my 6 month mark of diagnois and went on with my life. Every week I started to feel better as the interferon worked to leave my system. I did a lot of research on detoxing with fruit and veggies. Anything I could do to pull that junk out of my sysytem. Sept 9th 2015 my follow up Pet Scan rolled out. Matt and I traveled down to the hospital and went thru the rountine again. The next day I had my results with the DR. 

I often tried to put into words what it feels like to stare at computer images that show spots of cancer in your body..but I can't. When the Dr showed Matt and I the 2 new spots, one down by chest wall, a little further down then the last spot and one on my back..all I could do was sit there and hold my throat and Matt's hand. I kept thinking, what is happening??? My staging was moved to 4 and I felt helpless. I didn't give myself much time to process as we immedietly went into talking about new treatment. The Dr sat with Matt and I for over an hr and covered every drug and question we had. I really couldn't ask for better caregivers at that clinic.

Tomorrow, I start my first round of Yervoy. We decided this was a good choice for me and my expectations are high! I've really appreciated reading others experiences with the drug and how side effects have happened..or not in some cases. I'll go the 4 treatments every 3 weeks and be done by Christmas. I feel in great hands this go around and can't wait to go home to Missouri for Christmas with good news!! 

Thank you again to all who particiapte on this site and answer questions. There are so many eyes reading and following along that never say anything. I was one for months and months and it helped me A LOT!  THANK YOU! And if anybody else is also a patient at University of Colorado, maybe we'll meet and say hi one day! :-)



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Anonymous's picture
Replies 3
Last reply 10/4/2015 - 11:25pm
Replies by: Patina, Anonymous, arthurjedi007

Hello everyone, hope your days are brighter everyday - and may the lord be with each and everyone of you!

I had a WLE and A SLNB in 2007 - however where my WLE is located in the side/back of my thigh - I find it to be very tender and appears to be a bruise - hurts in the one spot that is discolored to the touch, I also have pain in my calf on the same leg for months now, feels like i have a charlie horse in my calf...  this pain in my calf has been going on for several several months.. ive tried drinking more water, stretching, eating banannas, ect.....  going to the Doc in 3 weeks.... but concerned if this could all be realated to the Melanoma i had in 2007 removed.  because i do have a tender spot looks like a bruise where the primary mel was removed and the calf on the same leg will not stop hurting...

any feedback?

thank you, 

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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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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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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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dentholla's picture
Replies 3
Last reply 10/3/2015 - 4:18pm
Replies by: Beehappy, dentholla, geriakt

Today marks week 12 for my husband on the Ipi versus Nivo trial at Texas Oncology.  He is Stage iiib and we are hoping for the best as scans are already underway.  We should meet with our doctor later today to see if we can proceed with treatment.  

He and I both feel fortunate as he has experienced very little side effects.  He is either getting 9mg of Ipi or 3mg of Nivo.  A little fatigue the day of/after treatments.  At the beginning had a slight rash on his arm but it went away.  A little upset stomach here and there but to date hasn't had to offset it with meds.  Bloodwork has been in the normal range and low LDH when they've tested him for it.  He will be tested for LDH again today.

I've read so many positive things about this trial and hopeful that the efficacy we all expect to see with these drugs being used in adjuvant setting prove in the research.  Here's to hope!!!

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lsmith - MRF's picture
Replies 7
Last reply 10/3/2015 - 3:23pm
Replies by: Anonymous, Linny, Polymath, Ed Williams, tschmith

Hi all,

We are aware of an unsually high amount of spam on the forums today and we're working to fix this issue as quickly as possible.


- Lauren, MRF

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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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Tracyd715's picture
Replies 8
Last reply 10/3/2015 - 2:12pm

Has anyone had Gamma Knife treatment for a brain lesion? My husband is scheduled to have this done next Friday and was looking for some input on what to expect and how your results were.

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Anonymous's picture
Replies 6
Last reply 10/3/2015 - 2:07pm
Replies by: kylez, DZnDef, scmcelroy, Anonymous, stars

I have melanoma insitu on my nostril.  Everything I read and the couple of doctors i have seen want to do MOHS surgery which has the potential to take off half my nose if not more depending on whether they get clear margins. The unknown of not knowing where the stopping point is is terrifying me.  Maybe to the point I'm willing to not do anything.  Since it is insitu it may take a long time to spread if it and when it does spread - right??  I've heard a little about this Imiquimod cream.  Does anyone know anything about it?  I've heard that it is sometimes used when the potential for disfigurement is a possibility.  It just seems like i'm hearing so many cases of having it and then having surgery and then having it reappear somewhere else.  An endless cycle.  How many people out there are walking around clueless that they may have this and live a fairly long fulfilling life without the constant fear that now invades me.  I think sometimes we are our worst enemies by trying to always be one step ahead of our health.  Don't get me wrong, i have always been proactive in my health care.  But i am just having a heard time believing that by cutting off half my face that my life is going to be so much better.  Depression will surely set in and succomb a portion of my time before i get back on my feet and rise above it.  When talking to people i feel like i am the only one who feels this way.  You say the word cancer and everyones life immediately changes because they choose to try to defeat it.  Quality of life is more important than quantity in my opinion.  People suffer through chemo and all of these treatments that are out for what?? I few extra years on their life.  I've always heard once you cut on someone for cancer it has a greater chance of spreading and there are cases where i honestly believe this.  One minute i am ready for surgery the next no way.  I don't know how to be at peace with either answer.  Anyhow, thanks for listening and GOD be with all of you.


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Christine.P's picture
Replies 3
Last reply 10/3/2015 - 12:22pm
Replies by: _Paul_, Swanee, CarolA

My recent history: two primary melanomas - a large one that required a skin graft on my right calf with no spread to sentinal lymph nodes and a small one on my left arm near the elbow that had spread to sentinal lymph nodes. Had full axillary dissection of 20 nodes; only one was positive for cancer,  but it was large (a little over 6 cm). 

I just got my the results of my MRI and CT scan and, thankfully, there is currently no spread to brain, lungs, or liver. Unfortunately, though, the CT scan revealed two masses/lumps  - one in my left breast and one between my breasts just above my diaphragm (and in front of the breast bone). Mammogram and biopsies are pending. 

My question is whether anyone out there has experienced this kind of spread. I know both could just be cysts but I also know they could both be melanoma - or even a different kind of breast cancer. 

I'm not sure how this will affect my final staging and I know I can't know until the tests are back, but I can't help but be a little worried and I wanted to reach out to this kind and well-informed community. 

Thank you!

Christine P. 

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mrsaxde's picture
Replies 10
Last reply 10/2/2015 - 7:37pm

OK, I have a question for everybody.

I had my 4th cycle of Keytruda today, and the nurse told me that my veins are no good. Never had anybody say that before today. I only have one arm for them to use, because of the lymph node dissection from my other arm. She recommended that I contact my surgeon about getting a port.

So here's my question. Who else here is getting Keytruda, or another long term IV therapy who has a port? What are your experiences with it, and what is your opinion of it? My wife, who is an RN, says that since my treatment plan says I'll get Keytruda "until progression," a port makes a lot of sense. It does to me, too. But I don't know anybody who has or has ever had one. So if you have one, or you have had one, tell me anything you think I should know.


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mizmena's picture
Replies 6
Last reply 10/2/2015 - 4:56pm

Started this trial yesterday...just curious if anyone else is participating and what the side effects are? I have a very swollen throat today and its got me a little concerned. I didnt think I would have any effects after the first treatment. Headahce, naseua and this sore throat are bothering me. Finally got rid of the headache and nasuea but not the sore throat...any input on anyone else in this trial i would greatly appreciate.


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