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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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

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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

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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.

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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.

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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

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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 !


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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

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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,


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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?


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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

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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.

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Jim M.'s picture
Replies 6
Last reply 5/2/2012 - 1:44pm

Hi everyone,

 I had this twice in the last 6 months. It's a bacterial skin infection (deeper layers of the skin). The first time I had it I had a fairly high temperature and had little energy to get out of bed. I wound up in icu for several hours because my blood pressure was low (80s/40s). The infection was in my right (lymphedema) arm. It was red and hot to the touch. It was also moving up the arm. I was put on iv antibiotics. After several days in the hospital I was sent home with strong oral antibiotics. That did the trick.

 About a month ago I lost most of the range of motion in my left arm. I developed a low grade fever and saw a little red splotch on my left arm. Again it was diagnosed as cellulitis. It did spread to my armpit and a couple spots on my chest. This time I wasn't admitted to the hospital. I was given 1 dose of iv antibiotics in outpatient and prescribed oral antibiotics. My range of motion returned.

 I'm describing my experiences to see if others have dealt with cellulitis. For those who have had it, what advice do you have for preventing it (besides hand washing and trying to avoid scrapes, open wounds and bug bites)? I'm probably more susceptible to cellulitis since I'm taking Hydrocortisone which can weaken the immune system. My doctor would argue that it doesn't since I'm only taking the normal hormone replacement amount.

 Any advice would be appreciated.

 God Bless to all,

 Jim M.

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lunasea's picture
Replies 6
Last reply 10/5/2011 - 11:45pm

I'm brand new to this forum... was just diagnosed with a malignant melanoma in situ this morning.  My dermatologist is ready to do surgery next week, to excise a wider area of skin where the mole was.  However, oddly enough, I had surgery a year and a half ago for a different type of cancer, and that surgeon also specializes in melanoma.  Would it be better to have my dermatologist do this minor surgery, or to go back to my previous surgeon?  Does it matter?  I'm guessing that because it's only "in situ" (thank god for that), that it would be okay to just have my dermatologist do it... just looking for any opinions or info you might have.  It's really weird to me to now have to start Googling and gathering info about THIS type of cancer, after I've been so immersed in forums for my OTHER type of cancer... life is so strange.

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jax2007gxp's picture
Replies 16
Last reply 10/5/2011 - 11:29pm

Hello again,

Saw the doc today...everything is progressing nicely.  I still have the one drain, but I'm not terribly worried about it at the moment.  I think for the first time, I am finally starting to understand, or maybe be willing to face, the actual severity (read: mortality) of my situation.  I have told myself time and again...don't worry, you'll be fine, it could be so much worse.  But the fact is, at IIIc I am not really "fine".  I finally asked the doc about survival rates in my situation...something I've frankly been avoiding.  I really didn't like his answer...50/50 for 5 years.  This just seems like a low number especially in light of other data I've reviewed in the last 24 hours.

So...I've been searching for clinical trials that might give me a shot at trying Yervoy instead of interferon.  Since my mel was resected, the options are more than thin....they are almost non-existent.  Most trials for stage 3 require the tumor(s) to be unresectable.  But, I did find one which is being conducted in many hospitals nationally which compares Yervoy to interferon for stage IIIb, IIIc and some IV patients.  Other than one piece of the qualifying puzzle, I seem to fit the requirements.  The info states that a patient can still be qualified with disease recurrence after excision of original primary if the recurrence is in a regional lymph node basin and the disease was completely surgically resected with free margins.  How can an LND have free margins?  It's a mass of goo, right?

It doesn't look like I have a lot of options...for now.  And even if I can qualify for this study, it's still not a guarantee of receiving Yervoy since half the patients will get the high dose interferon.  But, I figure I would at least have a shot.  I'll be calling them tomorrow to see what I can learn.  In the meantime, I'm not expecting to get a lot of sleep tonight.  But, who knows, it's been a tough day for me mentally and crying least not yet (lol) but it has been a bit exhausting.

Sorry for the length of this...I'm not quite ready to lay this out for those closest to me yet and you guys are the best sounding boards out there.  I need to figure it out first...or at least wrap my head around it a little more.  One more thing I had to come to terms kids for me.  I was still hoping, but he made it pretty clear today that it is an unnecessary risk to myself and the unborn child...even after treatment ends, due to high risk of recurrence.  Like I said...big day for me.

Much love and many prayers for everyone!


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Jessmoon's picture
Replies 8
Last reply 7/5/2013 - 3:10pm

My husband and I just got back from visiting Mayo Clinic for a second opinion regarding his stage IV melanoma that was diagnosed last month.  Our oncologist in Des Moines (along with a melanoma specialist at the University of Iowa), has recommended, he enroll in the ECOG study where he would either receive Interferon or Yervoy. 

Today, Dr. Markovic at Mayo Clinic, has recommended a different treatment, Leukin.  He would inject this daily for 14 days and then be off the medication for 14 days.  This would continue for 3 years.  He does not prescribe Interferon because it does not increase survival time and has many side effects. He is also concerned about Yervoy, because studies have shown that 5% of patients died during the research studies while taking the medication.  He has been using Leukin for over 10 years and has seen good results, plus he reports minimal side effects. 

Has anyone been on this medication? Any suggestions?

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