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

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

Login or register to post replies.

kim2712's picture
Replies 6
Last reply 3/25/2011 - 10:28am
Replies by: kim2712, Nancylee, Peter L, dian in spokane, Anonymous, jrami3

My son Erik was diagnosed with stage 3 melanoma in 2004. He did one year of high dose Interferon.  He has done well since then. On March 7th his lung collapsed 100%. He had been having pain and shortness of breath a few days prior to this. They put a chest tube in from the top of his lung to drain fluid and try to keep lung inflated. After a week of this, a thoracic surgeon was called in and decided he needed surgery to put the larger drain tube in at the bottom of the lung. They did this Monday morning, the 14th. After 2 agonizing hours the surgeon met us in a private room and just said I'm sorry, it's bad. His right lung, pleural area, chest cavity and chest wall is full of malignant melanoma tumors, hundreds of them he said. Resection was not an option. We are heading to the Cleveland Clinic Tuesday and University Hospital in Cleveland on Wednesday to see the melanoma guru's at both places. We are in Toledo.

My question...is there realistically any hope?

Thank you from a terrified mom

Login or register to post replies.

kim2712's picture
Replies 10
Last reply 3/25/2011 - 10:22am

My son Erik was diagnosed with stage 3 melanoma in 2004. He did one year of high dose Interferon.  He has done well since then. On March 7th his lung collapsed 100%. He had been having pain and shortness of breath a few days prior to this. They put a chest tube in from the top of his lung to drain fluid and try to keep lung inflated. After a week of this, a thoracic surgeon was called in and decided he needed surgery to put the larger drain tube in at the bottom of the lung. They did this Monday morning, the 14th. After 2 agonizing hours the surgeon met us in a private room and just said I'm sorry, it's bad. His right lung, pleural area, chest cavity and chest wall is full of malignant melanoma tumors, hundreds of them he said. Resection was not an option. We are heading to the Cleveland Clinic Tuesday and University Hospital in Cleveland on Wednesday to see the melanoma guru's at both places. We are in Toledo.

My question...is there realistically any hope?

Thank you from a terrified mom

Login or register to post replies.

dwhistonb's picture
Replies 6
Last reply 3/25/2011 - 4:45am

It appears that my family has joined the melanoma club.  The club no one wants to belong to!  My father had a spot taken off of his leg last month.  DIagnosed as melanoma.  Had surgery last week to remove the area and take the firs 3 lymph nodes from his groin area.  We just got the results of the biopsies of the lymph nodes - the melanoma has spread.  NOW where do we go from here?  Of course me being the organized one in the family started researching this afternoon (about an hour after speaking with me Dad) and came across this website and group. I am sure all of you know what the beginning felt like so I am hoping that through this group I can obtain information much quicker; especially since you have all been there before in one capacity or another.  Help??

Login or register to post replies.

alicia's picture
Replies 20
Last reply 3/25/2011 - 12:48am

Hello everyone, this week has been crazy!!! Ill give you a bit of my hx: in 2006 I was diagnosed with my first primary melanoma stage 3. It was a Clarks level IV with sentinel node (+). I did interferon treatment 35wks shy of 11 mo. July 2010 I was diagnosed with 2nd primary Mel Clarks level 2 it was thin so no SNB just WLE. Now here we r in dec 2010 and I have 3rd primary Mel this report says Clarks level IV at least and probably will have residual when WLE is done. The problem is I already had big surgery to lt groin in 2006 and this new primary in lt lower back. Surgeon is referring me to Duke because he thinks I will need LND because where lymphatics were disrupted during 1st surgery a sentinel node can not be detected. He put me thru lymphoscintogram and found that lesion drains to both groins nodes. Has anyone else experienced this and what should I expect from node dissection to both groins. It's been over a year since I've had a pet scan and makes me worry what could be going on inside my body. Anyone else going to Duke???? Who is the best surgeon for this??? Thank you all in advance I'm so scared:(

Login or register to post replies.

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

Login or register to post replies.

olivia53's picture
Replies 5
Last reply 3/24/2011 - 10:33pm

My Mom had no idea there was a tiny black dot at the top of her head.  I only noticed it when I blew-dry her hair.  I brought it to the attention of her Derm. Mohs Surgeon two weeks ago.  Report came back melanoma.  My Mom has had 3 melanomas over 15+ years.  They were all in situ.  This one isn't.

The surgeon says it is 2.2mm deep, so she is going to do a wide and deep excision this week or next (about 2" all around).  Tomorrow I bring my Mom for blood tests and CT Scan of Abdomen, Brain, Chest, Throat, Lungs.  Oh Lord, why did I not do anything about this back in September when I first noticed it?

My Mom is 85.  Some people I'm sure will think, "Oh well, she's up there in age.  Has to go with something."  But my Mom looks, acts, feels like 65!  And I need her to have some happy years ahead--she's had a tough life with anxiety and depression (agoraphobia for years).

As I write this, I am shaking because the results of the tests won't be back for about 48 hours.

Has anyone had this experience (maybe where it did not metastisize)?  Everything I read on the Internet seems like we're doomed.

Thank you in advance.

Olivia

Login or register to post replies.

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

Login or register to post replies.

Jeff's Mom's picture
Replies 12
Last reply 3/24/2011 - 8:58pm

Good afternoon,

My 30 year old son was recently diagnosed with STAGE 3c malignant melanoma - you can read his story on my profile page.  He is now recovering from his second surgery and has been given two options for therapy before he starts radiation:  interferon or leukine.

Help!!  Any advice would be greatly appreciated.  What were your experiences like if you were treated with either of these two therapies?  What can he expect?  Thanks in advance.

 

Jeff's MOM

Login or register to post replies.

Terra's picture
Replies 5
Last reply 3/24/2011 - 8:11pm

Hi, we are seeing our onc onMonday and wanted to discuss abalation for multiple liver mets (largest is 1.3 cm).  Not sure where this is done and if any of you have had experience with it. 

Please share. 

Lungs mets as well so we will need to look at something else ie ipi.

Thank-you for your input.

Terra

 

Login or register to post replies.

 

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

Login or register to post replies.

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!

Login or register to post replies.

was888's picture
Replies 7
Last reply 3/24/2011 - 12:22pm
Replies by: ShariC, Sharyn, was888, Fen, lhaley

Hello everyone,

My father was recently diagnosed with Stage IV Melanoma.  This is the second time around for him with Melanoma.  2 1/2 years ago he received a diagnosis of Stage III melanoma.  He had the nodes removed from his neck and began Interfuron and Radiation.  He was unfortunately not able to finish the Interfuron because of what it was doing to his health.  He is now 66 years old.

Last week he had his 3 month PET Scan and unfortunately this scan lit up.  They state they see 30-40 nodes of concern located throughout his body.  On Friday of last week he had a biopsy done on nodes below his arm pit on the left side.  They ended up taking out 4 golf ball sized nodes and did a biopsy in the surgery room and they all came back as positive for melanoma.  We should get his final biopsy results back today, however the doctor's stated that based upon the initial results they feel everything on the PET scan is now linked to melanoma.

I am reaching out to this board to possibly help give some guidance on the most current and up to date treatment options available.  My father is willing to travel, and is ready to fight this horrid cancer.  We are meeting with his oncologist on Thursday to determine his recommendations of treatment after he is able to review the final biopsy reports.

I had a good friend who passed away from Stage IV melanoma last year, so I am somewhat knowledgeable about the treatments and procedures, but know this board is full of people who can help provide more details on these treatments.

Thank you all in advance for any info you are willing to share.

Login or register to post replies.

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

Login or register to post replies.

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!

Login or register to post replies.

Pages