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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Angela C's picture
Replies 1
Last reply 3/24/2011 - 11:51pm
Replies by: FormerCaregiver

Hi everyone.

 I have been fighting melanoma since January of 2007 and most recently became Stage IV in November. I did one cycle of IL2 and had scans on Tuesday. I had a mixed response. Some spots stable, a couple shrank, and one spot doubled in size. So, no more IL2 for me.

Now I have to find a clinical trial. I have to say that the whole process is frustrating having to do all of the research, make the phone calls, etc. It just seems to me that our doctors should be more involved in this process and helping us to find the right trial. But, I guess so many things are still so early in trials that it is tough for even the doctors to make a strong recommendation. Ugh.

But, anyway, I am currently looking into either the MDX1106 trial or the Ipi/GMCSF trial. I was originally looking into the Ipi/MDX1106 trial but was told by Sloan Kettering that a hold has been put on that trial.

MDX1106 is my first choice, but I'm having some difficulty getting into that one. I have a pathology reports from five years ago that says a spot in my lung "favors sarcoidosis." I have never been diagnosed with sarcoidosis, been treated for it, or had issues with these spots. I've even had one of my doctors tell me that I never had it and if I did, "It was the smallest case of sarcoidosis in the world." However, it is listed on my records and sarcoidosis is an exclusion criteria. So, I'm working on getting notes from the doctor that told me I never had it and that MIGHT help to get me into this trial. So frustrating!!

If that doesn't pan out, then my next choice is the Ipi/GMCSF trial.

So, are any of you out there on either of these trials? What kind of side effects have you had? Are you showing success with the treatments?

Thanks for your replies!!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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When I first met with SS to apply for Eric's disability the guy who helped me said that he was going to try and backdate Eric's disability because it was obvious that Eric worked while he was very ill.  We got the letter in the mail that the backdating was declined because he made more than $1,000 a month while he worked, so we figured that was it....we were wrong.

On March 2nd, I had an appointment to add our daughters to Eric's SSD claim.  Since we had the 5 month waiting period which would be over April 1st, I wasn't in a big hurry to get them added at the initial appointment.  I think this is where God had a plan all along.  So I sat down with the clerk that called my name and she said "I know you came in today to add your children to the SSD claim, but we are going to work on something else today."  I was shocked.  She said that she reviewed Eric's claim and she couldn't believe that it wasn't backdated.  I told her that the previous clerk tried to get it through but it was declined.  She said that the necessary paperwork wasn't completed so she was going to help me with that.

So heres the deal!  If you worked as long as you could while you were Stage 4 you might still be able to have your claim backdated!  Even though Eric made more than $1,000 a month, they approved his backdating when we sent in the reconsideration.  You will need to have your employer complete a form that Social Security has.  It's a form that basically states that you did not work at full capacity while you were working with cancer.  Eric's employer checked the box that said he was working at 50% capacity so Social Security automatically took 50% off of his income.  They consider that 50% a disability payment from your employer and not earned income.  THEN, you get a letter from your Oncologist that says that your medical bills were necessary for your condition and it needs to state your diagnosis and date of diagnosis.  That will allow Social Security to deduct all of your medical bills during that time.  We had $5,000 in medical bills and they deducted them from his income.  I'm pretty organized so I had all his medical bills on a spreadsheet and then I put them in an envelope and took them into the SS office.  A week letter the SS clerk called and told us it was approved.  We will be getting a check for $14,760.00!!!! for 10 months backpay!

I wanted to post this in hopes that it can help someone else.   I was very lucky that I got the right clerk who really cared.  Please be sure to ask that you get the right forms you need to have your claim backdated.

Hope I have helped.  JillNEric in OH

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We are looking to speak with patients diagnosed with specific types of melanoma to participate in a confidential paid phone/online study.

 

If they meet the study criteria and participate

They will be paid $175 for a one-hour teleconference

The discussion will be scheduled at their convenience anytime between April 7th to April 15, 2011.

 

This study is being conducted to help improve treatment and education for people living with specific types of melanoma.

 

To see if you qualify click this link  https://www.surveymonkey.com/s/JGVKBJZ

 

For additional information please contact:

Jane Walker at 888-392-5000

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As a member of this cancer information bulletin board, we wanted to share an opportunity that may be of interest to you.  During March and April, Harris Interactive, on behalf of a major pharmaceutical company, is conducting an online survey among people who have various forms of cancer to learn more about how the disease impacts their lives. Sharing your experience will help to provide a better understanding of what life is like with various forms of cancer and what steps could be taken to make life easier for those who live with the disease.

The survey will last approximately 20 minutes. If you qualify for and complete the survey, as a thank you, you will be offered $10 for your time. This can either be mailed directly to you or you can opt to donate it to a charity.  It’s your choice.

If you are interested in participating in this survey or would like more information, click on the link below and provide your name and contact information.  Harris Interactive will then send you a separate link to access the online survey.

http://go.hpolsurveys.com/cancer

Thank you in advance. Your participation is important and greatly appreciated!

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Hi,

I responded to a survey MRF posted and was selected to be interviewed by a New York Times reporter about my experience with Ipilimumab, and he actually wanted to know about my journey with melanoma (5 years) and other treatments. I dont know how much, if any, of my "story" he will arite up in the New York Times, but just to interview was exciting! The reporter called me at home last night. He said he will send me a copy of the article when he is finished.

I know I dont have much experience with Ipi, just having started it December 1, 2010, but I have had really good success with it. I am hoping it keep on working for me and I start my next round mid-May. 

Just wanted to let people here know.

Vermont_Donna, stage 3a

currently stable (NED) after 4 infusions of Ipi

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aynw's picture
Replies 9
Last reply 6/11/2012 - 7:34am

In late 2008 I was diagnosed with mm on my left thigh. Had a WLE in Nov 2008 that confirmed it was in situ and clear margins, so no further treatment was required, just skin checks every 6 months. In Jan 2011 I went to see my GP for a lump that was growing on my right calf. At the visit we noticed a mole of concern behind my knee about 4 inches away. I got into CancerCare right away and they removed both. Results came back 2 weeks ago - the lump was nothing of concern, but the mole was invasive mm - breslow of 1.65, clark level 4. I had surgery last week - WLE with skin graft and SLNB. Now I am at home recovering and waiting for results. Because everything happened so quickly and I was scheduled for surgery at the same time we received the results, I haven't had a chance to really understand what the next steps may be, and I won't see my oncologist till mid-April.  Does anyone know what is a typical treatment for a recurrence like this?  I have an idea if there is lymph node involvement what will come, but what if they come back clear (hopefully)?  Is the surgery all, or should I expect more tests, therapy, etc?  I am frightened that this recurrence happened so quickly, as I had my last skin check in Oct and everything looked fine.  How can I be sure that there isn't something else happening that we can't see?  Any advice would be appreciated. 

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himynameiskevin's picture
Replies 8
Last reply 3/25/2011 - 11:59am

As soon as I finished my visit with the doctors I felt a scratchy throat coming on and by the time my flight landed home here in San Diego I had a full on cold/flu/fever thing going on. It hit me quick and had me pretty down and out for a few days. Must have been the flights, hotels, stress, jet lag, and/or sick hotel shuttle driver. But I'm on the mend now and well enough to update those interested...

So this months scans show that things are still down a bit, not sure of an exact number, maybe around 7%? Again I'm not sure the exact number but I think I'm down to about 12 tumors in the lungs.. or maybe it was 9. I'm not sure. You know there were so many numbers and percentages and comparisons. I get kinda flustered and tongue tied when the doctors come in and I'm trying to remember so many things while doing math and thinking what to ask while listening to what they say... so... that's where I'm at. I do know for sure, that there's still nothing new, my brain is still clear and things are shrinking a tad. So this is good news. Just hope/pray/wish/manifest something similar next month and preferably months to come. We'll see...

Ok, well, I'm going to try and finish off this bug with some tea and a good nights sleep. I'll talk to you all soon. -Kevin

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cindyeh's picture
Replies 4
Last reply 3/23/2011 - 8:11pm
Replies by: Sharyn, Vermont_Donna, Anonymous

My husband is having his 3rd IPI infusion tomorrow.  He has intransit lesions on his upper groin area, a few below the knee, but mainly all upper thigh/groin area.  For those of you have had intransits and had an IPI response, how did they go away?  Absorb back into the skin or fall off??  My husband has many of them and they are almost one big whole scabbed area on the whole front of his thigh.  Some ooze and bleed, but they do seem to be drying up in areas.  He has lymph edema quite bad now. 

 

Thanks, Cindy

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Rebecca and Bob's picture
Replies 10
Last reply 3/24/2011 - 10:22pm

 

Hi all,

We got back from NIH a little earlier today and got good news. Brain MRI and CTSCAN clear. We go back in 3 months, next time a PETSCAN.  NED 20 months from last surgery of small intestine mets.

Planning on relaxing now and finding some wine or beer to have a little toast.

Rebecca

Believe

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Jeff's Mom's picture
Replies 4
Last reply 3/23/2011 - 9:55am

Thank you for your kind replies on my previous post about my son's treatment options.   So many of your stories are heroic and inspirational, and I hope that a cure will soon be found for this awful disease.  

My questions deal with IPI -  I've read that it will soon be approved by the FDA.  Any information on when??  Also, will it be used for all stages of melanoma?  Has it been shown to stop recurrence with only unresected tumor growth?  Any information would certainly be welcome as we are looking into a possible IPI clinical trial with (unfortunately) a placebo arm.

Thanks!

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mommydog's picture
Replies 9
Last reply 3/28/2011 - 3:18pm

My husband was diagnosed with stage VI metastatic melanoma in early February.  He has mets on his lungs, spine and liver.  After much screening he started a clinical trial yesterday at UCSF with BRAF and MEK.  For the MEK dosage he was "randomized" to receive the highest dosage allowed in the study. The doctor told us that he believes my husband is getting the best possible treatment for a horrible diagnosis.  Would anyone else like to share info/experiences with this trial? Thanks.

Deborah

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Anonymous's picture
Replies 1
Last reply 3/22/2011 - 2:52pm
Replies by: Anonymous

Hi All,

Been away from MPIP & trying ti catch up.

Last I heard, Kevin was back at NIH for tests. Has anyone heard fom him. Hoping for good news, we certainly could need some!

Douglas

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Lisa13's picture
Replies 6
Last reply 3/22/2011 - 9:46pm

Yesterday I received my pathology report from the surgery I had a month ago.  I have a nodular melanoma 22MM deep, ulcerated with 1 lymph node out of 19 positive for melanoma. That being said, I'm relieved that only 1 lymph node was involved, but now, I'm VERY concerned with how deep it is.  My mitotic value is surprisingly low (1) which is rare for a deep tumour.  I'm also currently NED as per PET scan results.

Anyway, is there anyone out there whose had a deep tumour or nodular melanoma with similar characteristics?  Everything I read about this melanoma is BAD and I know the prognosis is BAD, so I'm really hoping there is someone out there who has beaten the statistics.   I'm also wondering if it's do deep, does it even matter how many lymph nodes are involved. 

I'm now deciding between Interferon or hoping this Ipilumumab gets approved so I can get get myself over to the U.S. for treatment.  Any advice, any help?  I've got a 16 month old daughter, so my goal is to keep this away for as long as possible.

P.S  I must thank my dermatologist who LAST September told me it was a sebaceous cyst!

 

Thanks!

Lisa

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

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Rebecca and Bob's picture
Replies 2
Last reply 3/22/2011 - 2:57pm
Replies by: Anonymous, lhaley

Hi all,

The anxiety always gets tough the week before going in and the past two days for me have been partically hard. It doesn't help that I ran out of sleep aid. I keep wondering if it will ever get easier. This will be 20 months since my husbands last surgery and we are just praying he is still NED.

Thinking of everyone here always.

 

Rebecca

Believe

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Charlie S's picture
Replies 31
Last reply 3/27/2011 - 9:48pm

Every time I have talked, called or seen  Amy B, it has always been "Amy B, how you be sweet Pea ?"" because she has always been the daughter I never had

.She always gave me either a sterling smile, upbeat optimistic look forward or shared a secret darkness that goes unsaid

No, Amy is not dead; but after speaking with Dennis on the phone miinutes ago, Amy has done every thing she can and will do what is best for her and her family.

 The possible trials are all out the window.....................(editorial)..after, I might add that they gave her hope, but full well knew her medical history in advance,  and after weeks , turned her down because of her medical history (wtf is UP with that?)

I told Dennis, and I meant it, that he has balls of steel to keep it all together right now.

He has made arrangements with Hospice so that Amy can be, as she is now, at home and as comfortable as possible.

Please keep Amy, Dennis and all of their family in your thoughts as they traverse the hills, mountains and valleys while they all reach and cling  for one more sunrise and sunset....................no matter how difficult it may be.

annnnnnnnnnnnnnnnnnnnnnd, AMY B..............how you be be sweet Pea??????

smoch

Charlie S

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