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
Toby0987's picture
Replies 1
Last reply 12/2/2015 - 1:21am
Replies by: Anonymous

I was diagnosed feb 2013 with 3b Mel-right forearm mel went to right armpit-1 large Mel node. No other recurrences. I go to Mayo in Rochester. Any idea when the PETS will be just once a year or once every couple a years? 

Thanks-any experiences would be appreciated 

Login or register to post replies.

Brandon's picture
Replies 6
Last reply 12/2/2015 - 12:45am
Replies by: Momofjake, Brandon, Anonymous, arthurjedi007, casagrayson

HI. My name is Brandon. I was diagnosed last month and am looking for others to share experiences with.

I'm 33 years old, married with two children.

Maybe 6 months ago or a bit more, I noticed a large mole on my scalp after getting my hair cut very short. I don't know if my hair had ever been that short so I figured it could have been there forever and I never noticed it. A few months later I noticed it was getting bumpy and was itching. I showed it to my doc and he thought maybe the mole had been cut by clippers as it looked scabbed. He had me come back in a few weeks and we'd see if it looked better. That next visit, we decided to cut a piece off and have it biopsied. Few days later, on November 5th, I was told I had melanoma at least 1.6mm. We won't know it's true size until after my surgery on December 11th.

A few days after the diagnosis, the headache began. It hasn't gone away since. It varies in intensity and travels around the head, but never goes away. There are also pains and itching in my scalp at the site of the melanoma and also in another area a few inches away.

Over a month is so long to wait for the complete diagnosis. I am taking Xanax to help with the anxiety.

I had a CT/PET scan done and it showed no signs of metastasis.

Thank you for reading and I hope to hang around here for a long time! 

Login or register to post replies.

mrsaxde's picture
Replies 16
Last reply 12/2/2015 - 12:28am

I saw my oncologist, Dr. Melnyk, this morning. She went over the finding from the CT scan I had done on Tuesday. I couldn't have asked for much better results.

I've had three cycles of Keytruda. We noticed some changes for the better in some spots on my skin after just the first infusion. The CT scan confirms that things are moving in the right direction. Here are the most important parts of the radiologist's report:

"Previous studies have shown several nodules in the right lung. The largest of these is in the right lower lobe. This nodule was not demonstrated on a chest CT dated 1/6/2014. On a PET/CT dated 2/20/2015 the nodule measured 7.9 mm. In May this nodule mesaured 7.1 x 4.8 mm. It has now further shown a mild decrease in size, now measuring 5.9 x 3.5 mm. Other nodules in the right lung described on the previous examination in May are again seen on images 89 and 110. These also appear slightly smaller than on the previous study. There are no other lung nodules.

1. 3 subcentimeter nodules in the right lung described on studies from earlier this year appear to be slowly decreasing in size.

2. There has been a significant decrease in size of a previously described hypermetabolic cutaneous nodule involving the left chest wall posteriorly."

This is turning out to be a very good day. :-)


Login or register to post replies.

jamieth29's picture
Replies 3
Last reply 12/1/2015 - 11:10pm
Replies by: jamieth29, sayres

Just read thus from Celest's blog and thought it was very promising

Login or register to post replies.

Nanners10's picture
Replies 7
Last reply 12/1/2015 - 11:04pm
Replies by: AshleyS, Nanners10, Anonymous, jamieth29

Hi all,

I am headed for surgery again following a recurrence in the lymph node basin. I have a couple of questions for you. First off, for inguinal lymph node dissections, what basins are still considered regional? Does having an involved lymph node in the iliac region still keep me in the same staging group? Secondly, how many levels of lymph nodes should be removed with this second surgery? The first surgery I had a year and a half ago was a superficial groin dissection, however, now I have one deep groin lymph node and one enlarged iliac lymph node, should all nodes up to pelvic area be removed? If anyone has gone through this if they could provide the extent of their surgery it would be greatly appreciated. I feel like my doctors are not being aggressive enough with their approach and want to ensure that this time I am doing as much as possible.


Login or register to post replies.

jenny22's picture
Replies 10
Last reply 12/1/2015 - 10:56pm

Hi all-  I wanted to share and get some thoughts on my recent oncology consults for next steps in treatment...stage 3B, recurrent......

Quick recap-

Diagnosed Sept. 2013- 1.3mm, right neck.....WLE, but no SNB (long story...but couldn't be done).....thought to be node negative, staged 1B...followed with ultrasounds of neck, all ok until 14 months out....Nov. 2014- 2 tiny pea size bumps- intransit mets....move to stage 3B. Had surgically removed....margins "iffy", had 2nd surgery...all clear....

Saw 4 melanoma "experts"....MSK, NYU, UPENN, Rutgers, and Mt. Sinai-  after which I  participated in a vaccine trial.....CDX1401 & Poly-ICLC with or without CDX301.

Now, just shy of 1 year after first recurrence, found new "little bump", confirmed to be recurrence # 2, SCAN confirmed no further spread, so continues to be local recurrence. Again, surgically removed.

Radiation is now recommended to "sterilize the neck area"-  Some of you have written that radiation is not beneficial for melanoma .....having now seen NYU & MSK, and  they both agree that it is good for local control in this case...Cleary reminding me it is only for local recurrence, with no systemic benefit.  Since it keeps coming back in the same place they agree this makes sense....There were varying opinions on how to deliver the radiation, which was interesting.  As of now I will start the week after XMAS.

The real question though is on the systemic treatment. I know this can be an interesting topic here.....

Stage 3b, node negative, 2 recurrences- Seems pretty high risk to me-

so what to do?

Neither MSK nor NYU wants to give me IPI (at the newly approved10mg/kg).  Point of interest- 2 days after the LAST vaccine injection i developed diarrhrea which lasted for several months, ending with a colonoscopy, confiming "microscopic colitis"....based on this my Doc (PAVLICK) is REALLY against giving me ipi now.

MSK doesn't have anything to offer than IPI. which he said he would give me if I REALLY wanted it, (but is "disinclined" to offer that)...

NYU- Dr. Pavlick is suggesting i do  one year of Leukine-  I have of course done tons of reading and cant find anything particulary positive about the use of leukine in this setting.

We always tell newbies on this board to make sure they are seeing a Melanoma specialist, who only sees melanoma ALL DAY LONG.....that is exactly waht Dr. Pavlick is...many on this board know and love I do.

So not sure what to do.....looking for PDI trial but haven't see much, and not even any data yet to suggest PDI given alone in the adjuvant setting has any merit...

For all of you out there making similar decisions, in the hopes of not progressing to Stage IV......I'd welcome some opinions.....


Thanks and best,



Login or register to post replies.

Irbvorp's picture
Replies 1
Last reply 12/1/2015 - 10:43pm
Replies by: Janner

So I am just looking for some opinions about my current situation. My grandmother passed away from melanoma and my mother has had melanoma. I tanned in tanning beds and outside religiously for approximately 7 years. I now work in dermatology and I decided it would be wise to get a skin exam. I had 3 severally abnormal compound nevi on my back, all of which needed re-excision. The first has already been excised, the other 2 will be excised this Friday. I also had a mildly atypical compound nevus on my abdomen. The biopsy was performed 1 month ago and the area has already repigmented, with two  completely black moles now. My colleague advised that I should have it punched, which of course I will. My question is, could this possibly be a melanoma? I feel that it repigmented extremely fast and I am concerned now that maybe the shave biopsy did not remove enough tissue for pathology. Either way I know that once it is punched, if the margins are abnormal we will go back and remove more, however peace of mind would definitely be nice right now. 

I appreciate any and all help!


Login or register to post replies.

sayres's picture
Replies 4
Last reply 12/1/2015 - 10:31pm
Replies by: sayres, Anonymous, arthurjedi007

Diagnosed with stage 4 metastic melanoma in lings, liver, and lymph nodes July of 2015. I was started on the trial of Nivo and Ippi. My CT in November showed no change, my tumors were not responding to the immunotherapy.

I'm very depressed over this after seeing such good results for most stage 4 patients. I guess I'm part of the 50% who don't respond to the treatment. I did get very sick with rash and colitis. My liver enzymes went crazy and I had to go on steroids after 3 treatments.

Since there was no change my physician determined that we had to go a new route. I am now taking a combination of 2 types of chemo pills. Dabrafenib and trametinib.

Anyone have any experience with this? I'm looking for some hope here. I've heard these only work for a year and your body becomes immune and the tumors grow again.



Login or register to post replies.

TerraO's picture
Replies 39
Last reply 12/1/2015 - 10:24pm

I just turned 41 years old and received my melanoma diagnosis mid-January. I had two surgeries in 21/2 weeks: First, to excise the area and remove 5 sentinel nodes, second to remove remaining lymph nodes in my neck as well as parotid gland. Primary tumor was 3mm on the back rim of my ear, so surgery involved reconstruction of my ear.

One sentinel node show a small focus of cells, and one additional node (the next down the line, so to speak) also showed a small focus. All other lymph nodes and parotid gland (salivary gland) were clear. Head to pelvis PET/CT was clear, as was MRI of the head.

Now what? My choices are do nothing, one year of high dose Interferon, or participation in a clinical trial that tests high dose Interferon vs. Ipilimumab. The trial is local at University of Rochester Medical Center. My double-edged sword of feelings is that 1) Where is the cancer that we can't see it yet?, and, 2) I FEEL FINE.

Frankly, I'm terrified to start any treatment due to side effects and potential for toxicity. But, I'm more terrified of doing nothing. At my age and otherwise good health, doctors are confident I can withstand treatment. But, I'm concerned about the long term side effects of Ipi. What if I make it through the study and don't show recurrance  a few years down the line, only to have them say, "Sorry, you are still cancer-free, but your pancreas is shutting down." I think I'm too young for that risk! risky is it?

This has been a terrible inconvience so far, and I see my life as being consumed by treatment that may make me feel sick. My inner rage is a rollercoaster ride; I don't want to go through all this and die (from melanoma) anyway.

But, I have to make a decision soon. I know if I agree to participate in the trial that I could be randomized into the Interferon group anyway. I've been reading a lot, but now need to hear first hand experience. Anyone?

Terra, Stage IIIB

Login or register to post replies.

I'm curious as to whether anybody with brain mets was asymptomatic when they were discovered? Here's why I ask:

Last week I saw my oncologist, and I told her I had been having occasional mild headaches.I have always had sinus issues, my sinuses have been bothering me lately, and these headaches feel to me like sinus headaches. They are very mild and don't last too long, and I notice sinus pressure when I have them. But I thought it was a good idea to mention them. So she sent me for a CT scan today.

I am having zero symptoms that might suggest brain mets. In fact, I haven't even had any headaches lately. But of course now I'm nervous that my scan might show something, and I thought I'd ask if any of you who have brain mets had no symptoms when they were discovered.

Thanks in advance.


Login or register to post replies.

mdoh's picture
Replies 5
Last reply 12/1/2015 - 9:42pm

In a recent article posted on OncLive, James Allison on the Future of Checkpoint Inhibitors in Melanoma,  Dr. James Allison stated..."

What is on the horizon for immunotherapy in melanoma?

With the variety of combinations that have come to bear, the response rates are going to continue to go up. I think we are going to get to a point very soon where the majority of patients with late-stage melanoma are going to be able to look toward decades of response. To use the “C” word, I think we are heading toward a cure.

Thanks to all of you who posted recently about your ongoing battles with this demon called melanoma.  We're fighting a good fight and one day soon according to Dr. Allison we just might win!

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 12/1/2015 - 8:12pm
Replies by: Julie in SoCal

Hi Everyody

I have liver mets and lymph nodes involement.

I have had 3 Keytruda infusions.

I just got a copy yesterday from my doctor of my bloodwork and I noticed that my LDH is rising over the last two months.

It was always around 160 in the normal range and then it went up to 183 and now it is outside the range and has gone to 215. The scale is 100-190.

All other bloodwork and liver function is normal except for the eosinophils which have gone from .1- .55.  I have heard this is possibly a good thing?

My doctor didnt say anything at all about the LDH.

I am quite concerned with this as it seems from what i have read that this is a bad sign. And it is quite possibly related to the liver mets from what i have read.

The doctor has said in the past that things might grow before Keytruda starts to work and that i would need up to 6 or 7 infusions before we could be sure if it was working or not?

Has anyone been in the same situation or can they offer advice ?

Starting to really worry that Keytruda is not working with this rising LDH and time might be running out.





Login or register to post replies.

Anonymous's picture
Replies 10
Last reply 12/1/2015 - 7:10pm
Replies by: Anonymous, Brandon, Lil0909, kylez, CHD, geriakt, DZnDef, casagrayson, JenSam

I'm taking this dx really hard. I'm thinking of going to the doctor for some anxiety medication to level me out. I feel if I don't get help this anxiety will hurt me emotional long term and my immune system. Is there anyone else that takes anti anxiety or anti depression pills. I tried meditation and breathing but that had not helped.


Login or register to post replies.

Anonymous's picture
Replies 4
Last reply 12/1/2015 - 4:32pm
Replies by: jenny22, Anonymous, Bubbles, Scooby123

Have anyone read about this article? I used to take supplements, curcumin, ip6 inositol, purple mushroom cell forte, vitamine D3.


Any comments, please?



Login or register to post replies.

Scooby123's picture
Replies 10
Last reply 12/1/2015 - 4:32pm

Hi all, I had a MRI on my brain with no contrast, I thought at the time it's always been with contrast. My nurse called and said my scans 3 weeks ago stable . I had MRI brain without contrast and CT body. I had a call today from my hospital that my consultant wanted another MRI brain with contrast. I am now worrying hoping it just he wanted it with contrast last time and they did not do that. The worse mets. Wish when they call you they would explain why when all was ok last week. Anyone who had MRI brain has it always been with contrast.


Login or register to post replies.