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.

Expand/ Collapse Topic
Replies By
View Topic
lbkimball's picture
Replies 5
Last reply 7/15/2014 - 6:23am


Hi there,


This is my first post, although I've had stage IV melanoma for over a year. I have 30+ brain mets (mostly tiny lesions, but a couple of good sized tumors) and am starting PD-1 on Thursday. I was on Tafinlar and Mekinist for about 8 months, then that stopped working. I had gamma knife treatment in February, and my doctor put me back on a double dose of Tafinlar. Since then (Feb) my brain tumors have been shrinking but the other tumors in my body continue to grow and more are appearing. I tried one infusion of Yervoy but got very sick, so we decided I was a "failure", which allowed me to access PD-1.

My question is, has anyone here had PD-1 treatment with brain mets? If so, what kind of results did you see? I will be stopping Tafinlar, and assume I'll receive more gamma knife treatments if my brain mets start to progress again. 

Finally, I'm being treated at UCSF by Dr. Daud. 

Thanks for any wisdom you might have for me!

laura (my cancer blog)

Login or register to post replies.

cmosley's picture
Replies 3
Last reply 7/15/2014 - 11:07am
Replies by: Gene_S, Socks, MixtaJones

Hi Everyone, 

So glad I stumbled across this resource. 

A few weeks ago I discovered a mole on my head was bleeding on my scalp. After having it removed I found out that it is melanoma. The plastic surgeon said that it was .8mm, no ulceration, and had a mitotic rate of 2/mm2. He's asked me to come back so he can remove a little bit more as a precaution. I'll also be connecting with a general surgeon to discuss further diagnostics; I assume this will involve removing a lymph node.

Does anyone have any recommendations on what to do next? Based on your experiences, what questions should I be asking?

I'm feeling lost here so any insight would be helpful. 





ps - sorry everything is bold - can't seem to turn it off. 

Login or register to post replies.

Anonymous's picture
Replies 0

Hi! This is the first time I have posted here but my nerves are getting to the best of me and I wanted to check in with the group to see if they had any expertise on this subject...

Quick background I was diagnosed with Stage 1 melanoma on the back 4 years ago and have had check ups every 6months since then. 

I have a clear mole on the top of my forehead that gets lots of sun and have had concerns about it for a while but the dr's always brushed it off. I too didn't think much of it, but most recently the mole has become painful to touch or when i brush over it..not sever pain but definitely tender. I made an appointment next week and really want them to remove it. 

Just wondering if anyone else has had a clear mole that was tender that ended up being melanoma or better yet benign...trying to figure out how concerned I should be. 

Thanks :)

Login or register to post replies.

awanning's picture
Replies 10
Last reply 7/15/2014 - 9:33pm
Replies by: kylez, Anonymous, facebookpva, hbecker, awanning, arthurjedi007

Oof. Stage IV. diagnosed a week ago. in my bones, liver, breasts, lymph node(s), neck. 31 years old. I was told I need to start on a BRAF and MEK inhibitor ASAP to "get it under control" before looking at any other treatment options. I'm not seeing those treatments on this forum much and it's making me a bit nervous.  

I can't quite figure out how to find a really good melanoma specialist. There is only one option in my entire state (Colorado), and he has received pretty low ratings from patients for a variety of reasons. Therefore, it is looking like I will need to relocate to find kickass treatment places. But how do you find them? Google tells me MD Anderson, Dana-Farber, NIH. More?

Does anyone have experience at any of these places? I don't have insurance that will travel with me, so I'll need to figure out a financial solution, as well, but my primary focus is the bestest treatment options in the entire world. I'll pay it off for the rest of my life if I have to. Any experiences from folks that have been to any of those cancer centers or have strong recommendations for any others I haven't heard of, would be oh so mightily appreciated. I feel like I am fumbling around in the dark with Google as my only flickering flashlight. I'm so glad I found this forum. 

Login or register to post replies.

sisterkk's picture
Replies 5
Last reply 7/16/2014 - 12:35am
Replies by: Anonymous, Ginger8888, sisterkk

A strange new mole appeared on my right breast.  My husband thinks it is a blood blister, but I'm not so sure.  It's about the size of a pencil eraser and appeared quickly.  What do you think (Picture attached)? 

Login or register to post replies.

5dives's picture
Replies 6
Last reply 7/16/2014 - 1:22am

Hello everyone,

I'm just reaching out, mainly in case somebody has a tip or bright idea I should be moving forward with in the coming days and weeks. 

I live in Chicago. My primary lesion was .81 mm, mitotic rate 1, Clark's level IV, superficial spreading.  I just had my wle / slnb on Thursday, and I'm recovering well at home.  They took only one node for biopsy after the radioactive dye procedure. 

Results today tell me that the surrounding tissue removed with the wle was clear, but the node they took had a "small amount" of melanoma present.  I will get the more definite percentages after a final stain has been run. I will have those results on Thursday. 

I have a few questions for the group.

1. What is the path of melanoma after the nodes? In other words, if there's "only" cancer in one node and in no other nodes, does that mean it hasn't spread beyond the nodes? Do you have any thoughts on having the full inguinal node dissection or if it's not necessary if the scans are clear (brain, lungs, etc)? I do want to be agressive.

2. My doctor is Joseph Clark at Loyola. I have posted about this before, because Dr. Clark works out of Loyola Medical Center, which is not a Center of Excellence, but I know he personally has a very good reputation for melanoma, and he is heading several clinical trials.  I do have access to Northwestern Memorial (Dr. Mary Martini) and University of Chicago (Dr. Thomas Gajewski), but going through the process of getting a second opinion from either of them would delay my scans, which I am eager to have.  I feel like maybe it's okay to have a great doctor in a lesser hospital, but I'm not sure.  I'm open to suggestions. 

3. My understanding is that there are no "good" treatments for stage 3, and that if I hope to have treatment in order to be agressive, I'll need to seek a trial, and there aren't many for stage 3. Do I have that right? 

Thank you in advance for any thoughts you may have, and feel free to ansI wer only the parts that interest you.  I put a lot of trust in the wisdom of this group.



Login or register to post replies.

melfighter's picture
Replies 7
Last reply 7/16/2014 - 1:41am

My husband started Xvega last Monday, he seemed fine the 1st 2 days, but around Wednesday, he started feeling very tired and weak. The last 2 days he has not been able to get out of bed, just very tired and very weak. Prior to Xgeva, he was actually feeling much better and with the radiation to his back & sacrum,  he felt the pain was much more manageable.

I read that tiredness and weakness are side effects of Xvega, has anyone experienced the same thing? Is this temporary? 

Login or register to post replies.

It's still early in the process, but any progress is welcome — H.R. 4250 was moved forward by a House subcommittee vote on Tuesday.  The goal is to get the FDA to streamline and act more quickly in testing and approving new ingredients in sunscreen that are already available in Europe and much of the rest of the world (none new in the U.S. since the 1990's).

More details on the bill here:


Login or register to post replies.

vivian's picture
Replies 3
Last reply 7/16/2014 - 6:56am
Replies by: RJoeyB, vivian

Well, after being NED for a year and a half, it appears that I have a new lung nodule in the same lobe (left lower) from which I had one removed in 11/12.  That one was a wedge resection done by VATS.  Currently this nodule is small, only 4.5mm, so I imagine the docs will say wait and see if it grows.  However, the chances seem really good that this is another melanoma met.  I don't see either of my oncologists until next week, so I am just wondering if anyone out there has had more than one resection in the same lobe.  I really like to have as much information as possible before I hear what they have to say - especially as I usually turn into some kind of blithering idiot in the oncology office!  Thanks for any help/experiences you can share. 

Login or register to post replies.

ltalley's picture
Replies 4
Last reply 7/16/2014 - 12:34pm
Replies by: Anonymous, Janner

I would clearly like to know more about the Radial Growth Phase versus the Vertical Growth Phase, and if it is so imporatant why doesn't every pathologists report it in a patients path report? All information on this would be greatly appreciated..

Living Life!smiley

Login or register to post replies.

meganc13's picture
Replies 5
Last reply 7/16/2014 - 2:17pm
Replies by: Lucky Wrenn, Thandster, gaby, Anonymous

I've been seeing a lot lately that people have had issues with infertility after doing interferon.  This terrifies me!  I've been doing interferon for 9 months now, I'm 30 years old and my husband and I have every hope to have children some day.  Have any of you struggled with infertility as a direct result of the interferon?

Login or register to post replies.

ncdaniel's picture
Replies 9
Last reply 7/16/2014 - 11:52pm
Replies by: lbkimball, ncdaniel, Bubbles, Anonymous, NYKaren, RJoeyB

Can anyone provide any information on treatments of brain mets with PD-1?  I am aware that Yale University is just starting a study with patients who have brain mets ,  but my question is has anyone seen any prior evidence or prior experience that PD-1 does address brain mets? Any information will help. Thanks, Daniel

Trust in God - Live one day at a time

Login or register to post replies.

ScaredV's picture
Replies 7
Last reply 7/18/2014 - 2:53am

Hello everyone,

I posted about a week  ago explaining my current situation involving my fiance's melanoma diagnosis.  Basically he was diagnosed with a very thin (but large) melanoma on his left jawline back in April.  After the WLE, we found out the melanoma was thicker than they thought at the deepest point (1.2mm).  So now we are waiting to be seen by an oncologist to decide if we will proceed with a lymph node biopsy as his first surgeon did not think it was necessary, but his dermatologist would like to get one done.  We should be seeing the new ongologist/surgeon in the next two weeks.

The other day, I noticed a very small lump on my fiance's collar bone.  The lump was on the right side right where that 'U' shaped dip is underneath his neck. It is very small, smallar than a pea but I did notice it. When I felt it, it felt hard.  I don't ever remember seeing it there before but my fiance said that it's just his bone... I don't agree with him, I can feel and see this is a small lump.  He has also had a cough for the last three weeks that is left over from a cold he had before.. maybe it's something from that? 

My question is, should I be worried about this?  Ever since I saw it, my anxiety has gone through the roof but I don't know if it's just me being paranoid or is this is something that should be taken seriously? I feel like it doesn't make sense, as his melanoma was on the left side of his face and this lump is on the right side of his collarbone.  Does anyone have any advice for me?  Thank you.

Also, can anyone give me advice on how to calm my anxiety through all this? I am having a very hard time with it and I have never suffered from anxiety before all this.  

Thank you so much.

Login or register to post replies.

1derdog's picture
Replies 4
Last reply 7/18/2014 - 2:58am

My husbands has stage 4 melanoma in his lungs.  He has been on a clinical trial for 21 months now.  The tumor is increasing in size and now the doctor tells us he needs to get on a blood thinner (fragmin) because his arteries are clogging.  He said this is common in cancer patients.  Can anyone tell me if this is so wing they have either heard of or have experienced themselves.  I'm very concerned.  Can this be treated?

any suggestions would be very appreciated. 


Thank you 


Login or register to post replies.

AZ_Gal's picture
Replies 4
Last reply 7/18/2014 - 1:26pm

Is it me or is this kinda ironic?


I get melanoma from too much sun, have it removed, and now I am very careful about sun exposure. Now 3 yrs later I end up with crazy low vitamin d....


Anyone else have this issue? Is it common?



Login or register to post replies.