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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carol b's picture
Replies 5
Last reply 1/25/2011 - 10:36pm
Replies by: carol b, Lori C, nicoli

ok. i have a question. my melanoma tumor under my arm is about 4 inches wide. well yesterday i felt terrible and ran a small fever. the tumor under my arm was just throbbing. i was laying on couch and went to roll over and i herad and felt a "pop". and then it fetl like something inside me was running down into my rib section. today my arm feels so much better. My tumor doesnt hurt near as bad and im able to put my arm down beside my side. my question can a tumor burst? and if it can burst will it cause the cancer to spread even more? i need anserws fast please. im extramly worried. do i need to call vandy and as them? thanks in advance for your answers

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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How soon after starting PLX4032, did you know that it was working?  & how did you know?

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Jenjen's picture
Replies 10
Last reply 1/27/2011 - 10:14pm

Hi everyone,

 

My name is Jen and I am  currently stage 3a  (a couple cells in sentinel node), 2.4 mm, melanoma on foot. I was diagnosed when 26, am now 28 and about 18 months NED, after interferon and LND.  I am now taking classes to try and become a nurse and apply to nursing school in about a year. Some of my oncologists (but not all, they disagree on the subject) have mentioned that getting future vaccinations or immunizations could cause my melanoma to come back.  One of my oncs said he had a stage 2 patient who went 40 years without a recurrence, then had a vaccination to go on safari in europe and it came back stage 4. My oncologists at UCSF , dont agree with this, so i feel like i need some additional opinions or knowledge.

Has anyone heard of this? Or can anyone offer any insight on this subject. To become a nurse you have to get certain vaccinations.( for example: hep b)  I really want to do this but need to know how serious this risk is? And if i have to give up my dream of becoming a nurse.

 

Any advice or knowledge on the subject would be great.

 

Thank you,

 

Jenjen 3a, NED 18 months

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alicia's picture
Replies 15
Last reply 1/30/2011 - 5:35pm

Hello everyone I just got back from Vandy a few days ago and recieved pretty good news from my path results.  There was no evidence of melanoma in my lymph nodes however the melanoma tumor was thicker than previously thought.  there was 2.3mm of residual melanoma on the skin they excised but got clear margins.  I guess one the questions i forgot to ask my dr was do they add the 1mm of melanoma they removed with the biopsy to the 2.3mm to get the total depth or how does that work.  He said this was a thick melanoma and puts me at a stage 2 for this primary.  This is my third primary melanoma BTW:(  The first mel I had 4 yrs ago was 2.3mm at least and spread to one of my lymph nodes.  and then in July of this year I had a thin 0.59mm melanoma clarks level II only treated with wide excision.  I do have another question about my SNB this time.  The first surgeon I was referred to said that since I have already had surgery to my left groin to remove some lymph nodes (due to first mel being on left hip and +SNB Lt groin) that lymphatics had been disrupted and a CLND needed to be done because it would be impossible to find the SN by doing the lymphoschintigraphy or blue dye test.  Well I then get referred to Vandy because my surgeon feels it would be best I see a mel specialist to do my surgery since i'm only 28 yrs old and this is my 3rd primary and the surgery could be complicated since scar tissue in left groin etc etc.  Well the mel surgeon at Vandy says no we will do SNB only and not CLND so day of surgery we do the injection and the nodes light up in both groins so he removed 3 in left groin and 1 in right groin.  While i am so excited that all came back clear of melanoma I still worry at times if he could have missed the true SN as the first surgeon said there is no way of finding it by doing the dye test cause lymphatics have been disrupted.  Sorry to ramble when most of you are dealing with way more serious issues than me.  I just dont know who to talk to about these details and you all have experienced this first hand and truly understand what this feels like.  I go see my oncologist here at home in a couple of weeks.  The mel surgeon said he wouldn't recommend interferon since i've already been there done that but he thought a PET scan needs to be done since I need to be followed as a stage 3 patient and this melanoma was pretty thick.  He also mentioned doing US surveilence of nodes and do FNA if there are any suspicious areas.  Thank you again for your time.

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I live in Alabama. I am currently NED (YAY!!).  I truly don't know if I'm stage III or stage IV because my local oncologist refused to (couldn't?) put an actual stage to my melanoma.

When my melanoma recurred in a lymph node in June 2009 after a 17 year absence, my local "general" oncologist said depending on what criteria you used, it could be staged as either stage III or IV.  He stated that because of the long time period since the 1st occurence, and because we couldn't find a primary, if we treated it as a completely new occurrence, then it would be stage III.  However, if we treated it as a recurrence, because my original melanoma was on the LEFT side, and the recurrence was in the lymph nodes on the RIGHT, it would be stage IV.  Since he couldn't definitevly state which it was, he wasn't willing to stage it.  The PET/CT showed only the one positive melanoma site and treatment proceeded as if it were stage III - surgery (CLND) followed by the year of interferon hell (completed Nov 2010).

ANYWAY, my oncologist says I'm at high risk for recurrence.  I like to be prepared (former Girl Scout).  For that reason, I want to have at least SOME idea of what I want to do should it recur.  Based on what I've read on this site, I know I will need to get myself referred to a melanoma treatment center.  

So, although UAB in Birmingham,AL is listed on this site as a Melanoma Treatment Center, they just don't seem to be as "robust" a center as others - nor are they as well known.  (And I can't necessarily rely on my current oncologist's recommendation because he graduated from UAB!)  If I chose not to use them, I have to be able to defend my choice to my spouse (which should be relatively easy just based on the availability of clinical trials.)

So, if you had to chose:  Would you go to Moffett, MDAnderson, Vanderbilt, or somewhere else?  I very am fortunate that at this time, I have good insurance that will allow me to go almost anywhere.   (I'd like to stay in the southeast, but I would consider the NIH because of the TIL trials, which seem to be a very viable option.)

Thank you!

PS - I don't consider this negative thinking.  I prefer not to be in a panic should the worst should occur.  If I've at least thought about what I want to do, I'll be better prepared to make a decision and better able to discuss all the choices rationally with my husband.  Something VERY important with my VERY logical husband!

"A little ingenuity and a lot of duct tape will solve many problems.", AKC Agility Judges Guidelines

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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 www.melanomamom.com 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:http://www.globenewswire.com/newsroom/news.html?d=211612">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.  http://girltalkwithmarlo.com/metastatic-melanoma-skin-cancer

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 primary...is 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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