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
cwu's picture
Replies 2
Last reply 10/14/2011 - 10:12pm
Replies by: cwu, FormerCaregiver

Hi everyone,

My father has in transit lesions a year after surgery to remove tumor on his right heel. These lesions mostly on his calf and they are popping up on his skin so you can see them (not sure if cuteanous is the right word).  He started his first dose of Yervoy (IPI) almost three weeks ago.  Since that infusion, his lesions have started drying up alot.  There is one that is quiet big and the skin around it is so dry that it started cracking and bleeding.  I was wondering if anyone has similar experience and what recommendations you have.  It is not bleeding alot and it doesnt cause him pain but we are concerned about infection. We were hoping that since the lesions are drying, they would start falling off.  We have taken pictures and sent them to his Dr. and waiting to hear back.

Thank you for any suggestions.


Login or register to post replies.

emilypen's picture
Replies 16
Last reply 10/8/2011 - 6:45pm

Hi All,

My hubby started on chemo this week, Monday. My question is how quickly does it normally show results after 1 treatment?

He has a lot of sub-q mets on his back and chest, and we felt they were starting to shrink before the treatment on Monday although the doctor felt IPI had not been successfull in any way because his internal tumours had grown so much.

Now however , almost all of the sub-q's on his back and arms are starting to flatten out and get smaller. I noticed it on Tuesday and thought there is no way it's the chemo working this fast?


Would love to hear others thoughts and/or experiences?




Login or register to post replies.

mom3girlsFL's picture
Replies 8
Last reply 10/7/2011 - 6:13pm

So I had a PET 2 wks ago and it lit up in a node (small SUV, 2.5) in the poplitieal fossa (behind the knee) in the same leg my radical groin dissection was done last year.  Onc sends me to have a CT to "double check"...

Results of CT were normal except for "non-specific prominent enlarged node popliteal fossa".  This was left on my answering machine from my onc's assistant as my onc is on vacation till monday.  The assistant said she will put my chart on doc's desk for monday morning.

So...of course my gut says it's mel...BUT, my optimistic, treat everything with a little humour side, is telling me maybe it is not...

I know a biopsy is probably the next course of action?  My hubby says why are they messing around with this - why did they CT? the PET showed it, why didn't we biopsy then? and why are we biopsing (sp?)? just take out all the nodes!

Advice? Comments? Anyone?

:( Laurie

Do not fear tomorrow, God is already there.

Login or register to post replies.

MaryD's picture
Replies 13
Last reply 10/11/2011 - 10:56am

Just wanted to share some encouraging news - I am so humbled and grateful to report that my recent scans were clear and finally made a 3 year mark without a  recurrence.

I was DX in 2001 and in 2007 moved to stage IV status via one lung met.   During the past 10 years, I've done 1 year interferon, a peptide vaccine trial, radiation, an Ipi trial for resected disease, and finally, 6 months of pulsed IL-2 treatments two years ago.

Needless to say, I will never take this for granted.   Over the many years I have been on this board, there have been so many brave warriors fighting this disease with such grace and dignity  and there seems to be no rhyme or reason as to the outcome.

I can only hope that this news provides hope and encouragement to all of you who are fighting this battle.   Please know my prayers and good thoughts go out to all of you . .

Best regards,


Login or register to post replies.

bblapril's picture
Replies 16
Last reply 10/8/2011 - 3:46pm

A couple weeks ago I posted a topic "bump on neck" and I wanted to give an update and look for guidance.

The bump is two swollen lymph nodes and the biposy revealed more melanoma.  Also, the neck and chest scans revealed that it has spread to the lungs.  I am shocked how quickly this has happend.  He just had his neck disection in June 2011 and started interferon in July and petscan was clear in July.  Surgery has been scheduled to remove the nodes next week.  After a two week healing time he will begin IL2.  Any info or thoughts about this would be appreciated.  Thanks so much!


Be a fountain not a drain

Login or register to post replies.

Lisa13's picture
Replies 4
Last reply 10/21/2011 - 2:54pm

My Dr. told me to start taking my Entocourt today and I'm a bit leery of taking it.  I know the risks of ipi, but other than a tender to the touch area on my lower left side (above my pelvis), I have no symptoms.  He believes it may be the start of inflammation in my colon/intestine and wants to keep it under control. 

I know this drug effects the gut, but it also mentions "weakening of the immune system" which is not what I want to have when I'm so close to finishing this treatment.  Can this steriod take away the effect of ipi or do they not even know this yet?  I see my Dr. next week, so I'll probably take it and see where I stand next week.  I'm currently still battling a cold I've had for a week, so I don't want to weaken my immune system even more.

Many impossible things have been accomplished for those who refuse to quit

Login or register to post replies.

justlittleoleme's picture
Replies 6
Last reply 10/6/2011 - 11:44pm

We had surgery on 9/23. Pathology is back and there is no staging information. Dr.'s nurse said because tumor was below skin they don't stage the cancer. The report states it is metastatic melanoma. Originally we were told stage 3 since it is a local recurrence. I am confused since metastatic melanoma is stage 4. I would like your thoughts since staging between 3/4 makes a difference with regards go the treatments available.

Also, we are approaching two weeks post op. One of the dr's we are consulting with wants a brain MRI to rule out brain involvement. Our local hospital said we need to wait until 8 weeks post op. The consulting dr has him scheduled 10/14 for the MRI. Do we need to be concerned about the MRI and his internal stitches? Anyone ever encounter this?

Thanks, barb

We don't know how strong we are until being strong is the only choice we have.

Login or register to post replies.

Bruce in NH's picture
Replies 5
Last reply 10/11/2011 - 8:10am


I am in the process of completing the 42 day Temodar chemo pill program which is designed to attack the melanoma metastases in the brain. I have just completed the 25th day of 42. My question has to do with how many days after the program ends should the next brain MRI be done to assess treatment success. Since it's a chemo based product, one would think you might need several weeks for the chemo to knock down the mets. If you have experience is this area, I would like to hear from you. I need to get down to 3 or less mets to enter the t-cell clinical trial at NIH in Maryland, so this is very important to me that Temodar be successful. Any related comments regarding your success with this drug are appreciated.


Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

Login or register to post replies.

The next immunothrapy that will most likely be FDA approved.

Here is a video that may help you understand how Anti-PD-1 works. The that they use is call CT-011. It is the anti-PD-1 monoclonal antibody.

CT-011 Anti-PD-1 video

Best regards,

Jimmy B

Login or register to post replies.

kbc123's picture
Replies 5
Last reply 10/11/2011 - 6:22pm
Replies by: Jydnew, Anonymous, Hereiam, Janner

Good Morning Warriors..

I am trying to convince myself that I am just have total ANXIETY and there is no NEED to worry but I cant help but ALWAYS bringing Melanoma up to the forefront...

I am considered Stage 3a (a few cells found in one sentinal node by NYU - mole was 1.01 - non ulcerated - wide excision and LNB in February 2011) and here I am, eight months later..

I was also diagnosed two years ago with a herniated disc at L5-S1 - I had horrible back pain.  they sent me for MRI and for therapy and that was that.  I was cured never to have a problem with it again. 

Last Wednesday, I dozed off on the couch, woke up in the middle of the night with pain, not horrible pain but pain, lower back again, that progressively got worse through the day.  I did visit my ortho by the end of the week as I was in horrible pain again.  ASSUMING I am just dealing with SCIATICA again, he sends me to Physical Therapy, which I am doing, but I cant help but THINK, can this be something starting in the back now?  I know, I AM probably crazy, ( no, I KNOW i am crazy - that is a proven fact) however, does anyone think I should CALL my oncologist and run it by him.?  I have to say I do feel, maybe 10 percent better than last week, but it just feels like it is taking forever to start feeling myself again.  I was on Medrol Dose Pack and some non-narcotic pain meds but I still have the pain down the butt and thigh and its tough getting around.

So, give me some input, so I can sleep at night again !

Hope this note is finding everyone having a great AUTUMN day !


Login or register to post replies.

TracyLee's picture
Replies 2
Last reply 10/6/2011 - 2:32pm
Replies by: mombase, NYKaren

Hi y'all,

I've been discharged by U of Penn, and will contine on BRAF while being followed by my local oncologist.

I continue to respond well to BRAF, with some side effects: arthritis in my hands/elbows (fleeting); erythema nodosum (VERY PAINFUL) little red lumps = look like mosquito bites; dry skin; extreme sun sensitivity.

I find I don't need to shave my legs, at all! There's always a silver lining, and the hair loss seems to be on my legs, mainly! I do seem to lose more hair on my head, but not causing patches, etc.

Question re: erythema nodosum   bumps...mine is like a random game. I've gotten them on my arms, and all over my legs and feet. Each day is a surprise: where is one popping up today?! I've had several flairs on my feet, and man does it make it hard to walk. BUT it resolves in a few days.

Anyone else had these, and have any treatment ideas? I'd posted previously, and was told to take Aleve. This does help, to a certain point.

I'm just happy to wake up each day and assess how I am doing before I head off to life: work/kids/house/church. It's all good, and kind of an adventure! "Wonder where/when the next one will be?"

Praying for everyone on this board, we're in it to win it!


Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

Login or register to post replies.

dearfoam's picture
Replies 1
Last reply 10/6/2011 - 4:44pm
Replies by: justlittleoleme

Had to take dad in to the neuro unit at our hospital yesterday. his slow, slow, slow taper off of the low dose dexamethasone from 2 mg, to 2 and 1 mg every other day, to 1 mg/ day over several weeks appears to have resulted in some bonus brain edema around one of his larger brain tumors. His Radio Onc who usually looks at this was out of town, and so was the Neurosurgeon who we have seen once recently (about an upcoming crainial needle biopsy to determine BRAF status), so the report got jumbled like in that game "telephone."

So anyway, I had initially called his medical onco's nurse to report the increased confusion/ less stable walking/ nearly falling several times. That had mostly happened on Monday evening (though later he told me and the nurse it had happened Saturday, which was news to me). Was a lot better balance wise Tuesday AM, but not back to his baseline and still confusing some little things. Not enough to be alarming, but I thought I should report it since we had to swap his quap can for the old walker.

By the time the triage report got from hematology to radiology to neurology, etc, apparently the story got exaggerated. The nurse called and said, go straight to admissions, we need to do an MRI and skip the ER, the dr subbing for your nero will meet you there. Go now. The nurse on the phone was so sweet, but I was caught off guard and didn't ask wy we were admitting him if he just needs to do an MRI and get back up on the steroid - I mean, I understood they probably want to observe him if the suspect bleeding or other sweeling issues in the brain. So I got him settled into the room, etc, the on call dr makes his orders, and then the admitting neuro's resident dr comes in and says, well, you don't look as bad as the picture painted for us. Come to find out, they heard he'd gotten completely immobile, in a wheelchair, and whatnot. He still needed to been seen and everything, and get the tests done to rule out some other possibilities, but it was kinda weird feeling like oh, he's not as bad as they thought, but its not my fault... He did spend the night and get the MRI done, which did show slightly increased size of one tumor in the left temporal area, and swelling there.

I guess dad will be on dexamethasone the rest of his life... it's already been since April!!!

Just wanted to recount the story. I'm glad everythign was managable, but boy I am exhausted after all the running around over town, worrying, trying to get the accurate story to drs, waiting hours for discharge... and of course I got the usual all day tension headache that comes FREE with every hospital visit we make!!! On top of that, I got to remind dad, whoc is still confused just on certain details, why we are there and to stop calling the family to tell them made up stories about what we are there for, like brain surgery. (?!?)

SIncerely Exhausted,


Login or register to post replies.

Anonymous's picture
Replies 7
Last reply 10/6/2011 - 10:05am


I  am a newbie & need some help.

I had my 3rd surgery on my inner thigh in June.The surgeon cut down to the muscle to get the tumor and also took out surrounding lymph channels. Also, the  other surgeries on my inner thigh took out  lymph nodes.

Long story short, my upper leg from my knee to the top of my thigh is numb.  I have continuous lynphedema in my thigh.

It has been 4 months since my surgery and I have seen no improvement. I have NOT had a LND but my inner thigh is missing lymph nodes. Could these missing lymph nodes in my inner thighs be causing  my lymphedema.  I am very active, yet the lymhedema does not go away even after sleeping all night, I still wake up with lymphema and swollen thigh..

My surgeon basically tells me that is what happens with inner thigh  surgery.

I would appreciate it if I could see a doctor who could evaluate my leg, and perhaps make a recommendation how I can improve the function of my leg. I guess the nerve damage is causing the numbness. Will the numbness go away & the nerves come back? Without lymph nodes in my inner thigh, perhaps the fluid has no where to go.

Any suggestions, on what type of doctor/specialist I should see for my leg. My surgeon really does not care & I am very frustrated. I just want someone to evaluate my leg & tell me what is going on, and if possible, what I can do to improve my upper leg.

Any feedback//suggestions is sincerely appreciated. What kind of doctor specializes in leg?


Login or register to post replies.

Lisa13's picture
Replies 4
Last reply 10/6/2011 - 12:16pm
Replies by: Lisa13, NYKaren, Tim--MRF, Jim M.

Next week is my final infusion of ipi before scans. I'm getting nervous now and hoping that those scans are going to prove nothing but success.  I had 2 ladybugs land on me today, so hopefully this brings good luck :)

I've been relatively symptom free throughout this treatment, other than itchy skin and some cramping. Today I noticed a slightly tender to the touch lower left side (around my intestinal/bowel area). I also have cramping that feels like pockets of gas surounding this area. I'm calling the clinical nurse tomorrow just in case it's an inflammation of my intestines, which happens to be a potential problem while on yervoy.  Has anyone experienced something like this while on Yervoy? I think the medical term is diverticulitis (inflammation of intestines).  

Lisa - Stage 4

Many impossible things have been accomplished for those who refuse to quit

Login or register to post replies.

Jim M.'s picture
Replies 4
Last reply 10/6/2011 - 6:31am
Replies by: Jim M., MaryD, JerryfromFauq

Hi everyone,

 For the past almost 3 years I've had lymphedema in my right arm. I began to favor my left arm by carrying more things consistently on that side while giving my right arm a rest. We helped move our children from one place to another ( both are in college!). I know there have been times I've carried too much with my left arm. I've also done some exercises with 5 lb. weights.

 I had an MRI on my left shoulder. That's when I lost the range of motion due to cellulitis. The MRI revealed 2 small tears in the tendons in different areas of the shoulder. My doc. said that it happened over years. I believe my actions over the last 3 years at least accelerated the damage to the area.

 I began to take a supplement called Collagen 1&3 which is supposed to support tendons and ligaments, among other things.

 I'm not posing a question here, rather just advice for those in similar situations. Don't overuse your unaffected arm!

 God Bless,

 Jim M.

Login or register to post replies.