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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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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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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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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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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lsmith - MRF's picture
Replies 5
Last reply 10/1/2015 - 8:14pm

Great news! Today the FDA granted approval for the combination of Opdivo (nivolumab) and Yervoy (ipilimumab) for patients with previously untreated advanced melanoma! Read the MRF's statement to learn why this is an important milestone and what this means for the melanoma community:


- Lauren, MRF

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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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Anonymous's picture
Replies 6
Last reply 10/1/2015 - 5:26pm
Replies by: tschmith, stars, Anonymous, DZnDef, mrsaxde, Millykamp


I was diagnosted with SSM, staage 1a Clark III Breslow 0.6mm mitosis < 1mm2, I was located in my left clavicle, on the middle of it. I am terrified, I know many people here have been diagnosed with an upper stage, but cancer is not good for an earlier stage neither, it's never good at any stage!!!

I have seen people here who were diagnosted with stage 1 and years later have a recurrence and turn into stage 3 or 4. I am very scared because of that, I know we have new immunotherapy treatments, but what is the outcome or the chances to be NED in case of a recurrence?

Do you have any advice for me...I am really depressed and I am always thinking about that and a possible recurrence!!!

Thanks in advance!



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On Saturday November 14th there is a forum and round table discussion for those that have had melanoma enter their lives in some way. It is being help at OHSU(Oregon Health &Sciences University) in Portland. There is no cost and and option to see it in Bend or stream it on your computer. Here is a link to our webpage to get information and it has a link to register.

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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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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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micheley's picture
Replies 15
Last reply 10/1/2015 - 10:09pm

Hey everyone,

 I was just diagnosed with MM end of July. Had the SLB in August, One node, out of three, came back with micromets - then had WAE/reconstruction surgery on face that left some pretty awful scars. My tumor was thick, 1.3 mm, uncerated with a O mitotic rate. Petscan clear for any distant metasteses but showed a possible second cancerous node right next to where the first node was removed. A second opinon on the the neck dissection surgery suggested that the second node could be "reactive?" Not exactly sure how it could be coming up cancerous if it's not but I hope to end up a IIIa - there's a surreal statement there! I will find out after my neck dissection surgery this coming Monday. BIG FEAR THERE!

To say that i am terrified about the future is an understatement. The first month I could hardly work or move. I was in shock I think. I spent far too much time online triying to decipher and figure out my new "normal." All illusions of certainty are gone. I am afraid most of the day. I am seeing a therapist and taking ativan and a sleeping pill but I just don't know how I am going to make it through all of this. You see I have spent most of my almost 50 years of life in fear and sadness -- over things now that seem insignificant, to say the least! Now, there is something to really fear and be sad about and I just don't know how folks get through this. I am a worrier by nature and not so religious, although, I have been working on my spirituality over the years.

Today, I am stuck in self pity, anxiety, and stress about what is to come. I am beating myself up about not addressing that mole sooner! Why did I wait? What was I thinking? I am afraid for me, my husband, and my kids.I know that each letter after that 3 staging is vitally critally for overall recurrence and survival rates and I'm jsut so terrified -- not that IIIa offers any assurances either really.

If anyone can offer words of wisdom, support or general input, they would be most graciously appreciated. How did you deal with your initial diagnosis? How are you dealing with it today? Does it get any easier knowing it could come back anytime? I feel like I'm having a nervous breakdown each day.

I hope to hear back.



Michele C Yerger

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Carol52's picture
Replies 6
Last reply 9/29/2015 - 11:50pm
Replies by: Carol52, stars, mjanssentx, Anonymous

I was Diagnosed in 2007 with Mel on my Left leg inner thigh.. had WLE done and Sentinal Node Biopsy..

Had a spot come up on my forearm - had a biopsy it was a basil Cell cancer... 

1 year ago I had a spot on my belly - biopsy reveald Mel in Situ with evedince of HMB 45 - what does that mean?

also had spot on my Back removed and it was Basil Cell Cancer as well..


MD Anderson, Is recommending I get WLE on both areas.. I have been putting off... Please give your feed back.





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Anonymous's picture
Replies 25
Last reply 10/8/2015 - 4:39pm

Anyone know of any Ipi studies currently available for patients who have 3B and have had tumor completely resected with good margins and complete lymphadenectomy?  We just missed the Ipi/novolumab study and I'm having trouble finding anything else similar.  If nothing available, have you heard of any studies coming out shortly?  We have a small time frame.  Last surgery was 9/2/15.   

Alternatively, any feedback on polynoma virus study?  There's a placebo with it so I'd like to find an ipi study if possible.  But still an option (potentially only option) and I'd be interested to hear any feedback. 

Tumor has recurred once locally so still considered stage 3....but I have a feeling this is a very aggressive tumor.  Don't want to wait and see any longer.  However, not interested in doing interferon.

Thanks for any help or feedback you have!


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Anonymous's picture
Replies 4
Last reply 9/29/2015 - 2:34pm
Replies by: Anonymous, jpg, mjanssentx

Between stage 3a 3b and 3c 


Do  they all get treatment with picc line?  Or is stage 3a only being watch every 3 months for 3 years? 


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