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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JewelryCrafterGirl's picture
Replies 17
Last reply 2/5/2011 - 7:47am

I have been having a really bad burning sensation for many days that will not go away in my armpit right above the area where 3 lymph nodes were removed.  The back of my upper arm feels sort of like a numbness shot is wearing off.  It also feels like there may have been injections in my armpit, so hard to describe but a continuous pain/annoyance.  Has anyone experienced this sort of thing?  It has been 11 days since the surgery.

I also had the WLE on my back which is doing remarkably well as far as pain goes.  My uvula was damage from the breathing tube during surgery and that caused me more pain/discomfort than the WLE.

Thanks, Pennie

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Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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melanomamom's picture
Replies 4
Last reply 2/24/2014 - 6:29pm
Replies by: LBIO, jag, Becky, LynnLuc

Hello everyone!  While I am not happy about the reason I am joining this community or the reasons you are all here, I am very thankful it exisits.  Reading about your struggles and successes is very motivating.  I found out last week that I have stage IV melanoma - it started in my leg in 2007 and has spread to my liver and pancreas.  I joined NCI's TIL cell trial and I start this week.  The first step is liver surgery on Thursday.  I have created a blog at that I plan to update daily.  The point is to document my experience participating in a clinical trial, and to share my fight with others.  I'm just posting it on here because maybe reading about my daily fight will help you with yours just as your stories are helping me.  Love and strength to all of you!

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MSKCC to Test Agenus' Personalized Cancer Vaccine in Combination With Novel Immunomodulatory Agents

LEXINGTON, Mass., Jan. 24, 2011 (GLOBE NEWSWIRE) -- Agenus Inc. (Nasdaq:AGEN) today announced it has entered into a research agreement with Memorial Sloan-Kettering Cancer Center (MSKCC) using Agenus' proprietary cancer vaccine technology.

The collaboration will test Agenus' cancer vaccine in combination with antibodies that are intended to target specific markers on tumor cells, such as CTLA-4 and PDL-1. This group of antibodies represents a new class of immunotherapeutic agents that are thought to have complementary mechanisms of action with cancer vaccines. The studies will be performed in the laboratory of Jedd D. Wolchok, M.D., Ph.D., a leader in the field of cancer immunotherapy. Dr. Wolchok serves as the Associate Director of the Ludwig Center for Cancer Immunotherapy at MSKCC as well as Director of Immunotherapy Clinical Trials.

"Collaborating with MSKCC and Dr. Wolchok's laboratory opens a new chapter in the development of our personalized cancer vaccine portfolio for targeting later stages of this disease," said Garo Armen, Ph.D., CEO of Agenus. "Partnerships with leading institutions are central to Agenus' strategy to bringing life-changing products for cancer patients to market faster."

Agenus' cancer vaccine is designed to expand and specifically program the army of T-cells responsible for killing tumor cells; however, as cancer grows it becomes smarter and increasingly builds an 'immune fortress' that can protect itself from the attack of T-cells. Therefore, combining a product that activates T-cells with an agent that blocks the signal preventing the T-cells from effectively killing the tumor could have highly potent outcomes.  

"Combination immunotherapy in cancer is increasingly becoming a key focus of research, and this collaboration will add to this important and growing knowledge base," said Dr. Wolchok. "Our interest in Agenus' cancer vaccine is that it contains many antigens that are genetically matched with the cancer as the product is derived from the tumor itself."

"In addition to this preclinical research effort, we are looking forward to opportunities to rapidly initiate clinical trials, combining our Prophage series of cancer vaccines with either marketed or investigational agents that work against T-cell down regulation," said Dr. Armen.

Source:">Personalized Cancer Vaccine in Combination With Novel Immunomodulatory Agents

Vaccine + Anti-CTLA-4 and or PD-1, PD-L1 equals Immune response

Best regards

Jimmy B

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Hi there all,

Ive just started taking PLX4032 (4 days ago) as part of the BRIM 3 Trial.  When I first went on this trial back in July, I was randomized to recieve treatment with Dacarbazine (DTIC) , which didnt help me at all. I recieved it for about 5 rounds, when we discovered that my disease was progressing.  Then for a few months I went untreated, while I tried to sign up to other trials (focusing on the V600E BRAF Mutation), only to be knocked back for not meeting criteria by the slimmest of margins.  I then went on to the compassionate use of IPI, with no success either.

So, Im finally getting the treatment that I've so desperately been waiting for, and I am positive that it is going to be the one that is going to work for me.  I just know it, and have faith in its ability to put my disease in the rubbish bin, where it belongs!!  I do know a lot about this pill, its tendency to only work for a certain amount of time, etc, but with this disease, I am living for today. and if I can go through months of 'todays' in remission, without having to worry about this horrible disease then I would be so thankful and happy.  Then when and if a bad 'today' happpens in the future, then I must find and have faith in another treatment......  but for now, I live for TODAY! :-)

So, what I would like to know about is other patients experiences on this pill? 

Did you get any initial side effects when you first started taking it? & did they pass? 

How soon did you see a response?  & what to look for, in regards to it working or not?

How well did it work for you? 

What have been the worst side effects of this drug overall? 

If it worked for you, how long did it keep melanoma at bay?

If it worked for you initially but then stopped, what road did you travel down next?

I'd really appreciate it if some of you wonderfully caring, strong, inspirational people out there would share your experiences and knowledge with me.  Because although Ive read a lot of info on the net, its still 'text book' information as far as I'm concerned.  Its based on statistics and the typical experience.  Im NOT a statistic and neither are any of you!  Im an individual and would like to find out other individuals personal stories and real life experiences.

Thanking you all in advance and sending you all much love and light to guide each of  you out there in MPIP Land on this extremely cruel, lousy and bloody rough journey we're all on.....

love Simmy from Oz   xoxo



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I hope this okay to post here.  It is not a question, but an interesting radio show/podcast about melanoma which includes an interview with a mom that has stage 4 melanoma.

I know the interviewer via twitter, was happy to see someone taking the time to discuss and bring more attention to the topic.

Best wishes to all ~ Pennie

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elefk's picture
Replies 7
Last reply 2/20/2011 - 1:54pm
Replies by: JerryfromFauq, elefk, Anonymous, Fen, washoegal

I am newly diagnosed with internal melanoma. I would like to hear about anyone on clinical trials or other treatment plans.

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justzack's picture
Replies 8
Last reply 1/24/2011 - 12:49am

I am new to the board, so excuse my posting ettiquette :0)  I had a 1.55 Melnoma, Clarks IV on my right infamammary (under right breast, chest wall).  WLE and SLNB was performed by Dr. Zaeger at Moffitt in Tampa.  Ongoing health issues - unexplained hypertensive crisis', tachycardia, sever skin flushing, facial swelling, massive headches, multiple admissions and ICU stays, unexplained acute renal failure in april 2010.  Last month, I had a case of pneumonia and xray showed possible lung nodules ot right lung and medastinal shift with enlarged heart, thyroid, and liver.  In prior scans in April, no evidence of what is now showing on scans.  Primary Care doc ordered Thoracic Ct Scan.  Impression results:  3 calcified lung nodules that appear to be granulomatas and 3 non-calcified lung nodules, that are not specific.  Recommendation to follow-up with oncologist due to patient history and possible metastasis.  The non-calcified nodules are very small 2-3 mm.  My chief complaints right now are severe back and chest pain, that gets worse when I lie down.  Minimal coughing that produces no sputum.  Weightloss of 22 lbs this month, but still eating ... big girl so not really worried, but just unsually - was on weight watchers for 18 months recently and couldn't lose more than 15 lbs due to major fluid and swelling of face and stomach.  All of this to say ... we are at a loss, we are fearful the NED Badge will no longer be mine to wear.  I have an appointment on Monday, January 28th with Dr. Zaeger at Moffitt, he has read the report, but not seen the films.  He advised his nurse that he wants to see me soon.  The appointment was scheduled for first available, just a week and a half from the date we notified them ... unheard of at Moffitt ;0), but really welcomed.

So my question to all, does anyone have experience with lung mets, how small or big were they, what were your symptoms, what are treatment options, what are biopsy options, anyone diagnosed with pneumonia - but really melanoma lung metastasis ... I hav so many questions, but so glad to have everyone's guidance.

Peace to all --- Missy

He has taught me to say, it is well, t is well with my soul ...

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Dawn's picture
Replies 13
Last reply 2/12/2011 - 10:41pm

My nine year old daughter just completed her 3rd infusion of ipi.  She was diagnosed in Nov 2010 with Melanoma of the CNS witha primary in her brain....very rare for a child.  She is tolerating it well.  Itches tremendously at times, but otherwise we are not seeing many other problems.  Clinically, she is doing well.  This is the best she has felt since she was diagnosed.  Prior to ipi, she went through WBR and was on temodar.  We were told that she is the only child on this right now...we had to work with the doc, the pharmaceutical company, and the FDA for this to go through.   My question is,  are there any other children out there that anyone knows about that are on ipi?  I would like to connect with them if possible.  Thanks Dawn

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2atlascedars's picture
Replies 1
Last reply 1/22/2011 - 9:10pm
Replies by: Janner

I am finally back on my feet after a three-month ordeal that began with an October 26th diagnosis of MM on the sole of my foot. I just stopped needing to use crutches this week, after having been in a wheelchair for 6 weeks following my WLE on November 19th. I had to have a full-thickness skin graft to reconstruct the WLE site, which required nearly 3 weeks in a hospital and surgical rehab center, followed by countless hours of wound care and physical therapy by home health care providers. Also, I could not drive or work until January 3rd, when I was first permitted to use crutches.

I was VERY fortunate to have my SNB results come back negative, particularly since my MM was 3.7 mm deep. I have read so many post of yours on this site which indicate much shallowed depths of MM that had spread to the lymph or cirulatory systems. Since I had no ulceration, I believe I am stage 2A. I will have my first of many 3-month follow-ups with my Melanoma Specialist in February. I was wondering if anyone can offer their advice on what questions I should ask and what tests I should insist to be performed to ensure that I am, and continue to remain, NED.

I feel as though I should know as much about my primary melanoma as possible, such as the genetic profile, so I can stay abreast of the continued advances in targeted treatments. I know I am not truely cured yet, and want to be as prepared as humanly possible to quickly send my melanoma back to the HOLY F----ING HELL that it came from...if it should come back.

Also, I have heard that 8% of patients who had local-only disease go on to have a recurrance (spreading) of their original this correct? Are there any stats that break this down to more specific stages? (References are greatly appreciated).

Thanks for your help fellow MM Warriors!

Best regard,
Mark from California

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chet's picture
Replies 11
Last reply 1/24/2011 - 3:55pm

So I just got done with my first week of high dose IL-2. It was pretty rough but I managed to pull through. I did 9 bags total and wanted to get to 14 but my doctor said it was getting too toxic. She said it was not so much about the quantity but more so about my immune response. The worst part of the whole week were the rigors. The nurses would give me a shot of demerol right when I was starting to feel it coming on but it made me super nauseous to where I vomited a few times but they gave me a shot of phenergan right after to combat that. The third night was the worst for me. My allergies made it difficult for me to breathe that night so they had to give me oxygen. I don't really remember much from that night but the nurse told me I had a heart rate of 190 that night which was like me running a marathon. I'm at home recouping and I go back in on Feb. 7 for my next cycle. I'm not experiencing rashes like a lot of others but I'm peeling a lot along my ears and on my neck. My lips are super cracked and feel gross. I didn't sleep a wink last night. I heard that the IL-2 causes insomnia. Any truth to that? Anyway, how long until my skin goes back to normal? I don't like feeling crusty lol.

“The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.” — Buddha

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Amy Busby's picture
Replies 6
Last reply 1/24/2011 - 10:20pm

I have no idea what I should go after for my next line of treatment.  I don't seem to be having a response to the ipi.  I am still on the trial for the 10 weeks off period, but my onc and I agreed that I should be looking at alternatives since I'll probably be booted at that time for greater then 25% progression.  I am in alot of pain from my leg mets.  Going up and up on the meds.  Dennis thinks I really need to address that first since I am in so much pain.  But if I do radiation then it pushes me at least 4 weeks out to do any trials.  The one I'm looking at most strongly is the E7080 drug with temador, but there's only one or two spots left.  I have an appt lined up for next week to start all the papers / tests / etc.

Or I could start radiation on the left leg and possibly have hope of walking again like a normal person (wheelchair and walker bound now).

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

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Kim K's picture
Replies 13
Last reply 9/24/2011 - 8:20am

I also got a firm comitment on 6 month PET/CT whole body & brain MRI with and without contrast.  I go back in July unless anything pops up in the meantime.

I also had to make sure they don't pull the "we can't give you your results over the phone and the Dr. is gone for the day" crap.  My doc was shocked when he heard they wouldn't tell me my results over the phone.  We already had a deal that it is fine to do so.  I mean it's not like because I am in medicine therefore I am being a pain, but rather, if there was something I would want to know everything PRIOR to my appt. so I can spend the time constructively developing a game plan that made sense.  I could spend the time more productively and have my questions lined up and research done PRIOR to my appt.  It didn't help that the receptionist at this particular branch office isn't the brightest crayon in the box.....

I will recheck next week to ensure that it is the first thing that shows up is my Dr.'s consent to read me my results over the phone and or fax them to me as soon as they are reported.  Damn stupid beuracracy.  My doc did get a chuckle out of my Mela-sucka-noma shirt.  (The one that BG has).

I also ran into my lung surgeon who seemed a little suprised I was still doing well.  If only I could be a fly on the wall at the next tumor board meeting.....

I also can't wait for my new Sole 35 eliptical machine.  Now that I will be around for a while more, I guess I need to get my butt back in shape.  Jade my 5 y/o daughter insists Mommy is only fluffy and not fat.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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LynnLuc's picture
Replies 9
Last reply 1/25/2011 - 5:05pm
Replies by: LynnLuc, filbert, MARTERWAG, Rocklove, Tracy Chicago, Anonymous

I am wanting to go back to work...dx with stage 4 melanoma-I have been NED for nearly 9 months . I am still in the trial here at Moffitt.  I will need 2 more days off for treatment for the trial...Am I crazy for wanting to go back to work? I know if I do go back I will lose my state disability ( from state job in North Dakota) as well as my SSDI. If I get reoccurrence I will never get my North Dakota disability back as I am in Florida now...I wonder how hard it will be and how long it would take to get the SSDI started again...anyone know if it would be easier the second time around?

I feel like I can't sit around and do nothing like I am waiting to die. Yes I know I felt that way in the beginning, but now I really want to move forward and hope and pray for the best.

Another question...should I tell them at my interview about my diagnosis? Or wait and tell my direct manager/supervisor. I know the law says they can't discriminate...but in this  area unemployment is 15% and afraid they can pick and choose and trump up a reason not to hire me if they don't like my dx...I do not want to claim disabled ...I want  to be hired because of my skills and experience...not because of my dx...

anybody want to throw some thoughts out there?? Thanks, Lynn ( have interview next Wednesday...)

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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carol b's picture
Replies 7
Last reply 1/23/2011 - 11:33am

my pet scans just showed only the tumors we can see and feel..NO mets anwhere eles in my body. THANK GOD FOR THAT

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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