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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Hello All,

I've attended the past few symposiums presented by the MFNE and found them excellent resources. 

Jerry from Cape Cod.

An Evening with the Experts

A presentation of the latest in melanoma treatment and research

An opportunity for education, discussion & connection for patients,
survivors, families & friends

Tuesday, November 16, 6:30 – 9:00 pm

Dana Farber Cancer Institute
Jimmy Fund Auditorium
35 Binney Street, Boston, MA

Speakers:
F. Stephen Hodi, MD, Clinical Director, Melanoma Program, Dana Farber Cancer Institute
Donald P. Lawrence, MD, Clinical Director, Center for Melanoma, Mass General Hospital
Anand Mohadevan, MD, Radiation Oncology, Beth Israel Deaconess Medical Center
 

    Dana Farber Cancer Institute
    Jimmy Fund Auditorium
    35 Binney Street, Boston, MA

RSVP:
Melanoma Foundation of New England at (978) 371-5613 or tsignet@mfne.org

Services:
Free Admission, Refreshments, Free Parking (in the Smith Building at 1 Jimmy Fund Way)

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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Nancy's picture
Replies 20
Last reply 11/10/2010 - 9:57pm

Buddy, my dear husbacd of 43 years, passed  away today.

He really fought the melanoma battle.  The journey has been a long one, some ups, some downs, but we always thought we would win.

Winning wasn't in the cards this time,  Anyone so desiring can man

 

H

 

 

 

 

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emilypen's picture
Replies 3
Last reply 11/10/2010 - 9:50pm
Replies by: emilypen, Anonymous, lhaley

Hi All,

Just wanted to let you all know the good news! After 7 weeks on the trial drugs ( Mek & P13k) my husbands  scan results show "stable" disease. The measurements show that the tumours and bone lesions have experienced absolutely no growth!

We were hoping for a reduction in size but as he feels so great and and its only been 7 weeks we're happy. Hopefully in the next scans in 2 months will show a reduction.

Would love to hear how others on the Mek inhibitor have faired with their scans? was reduction immeadiate or did it take time?

 

thanks,

 

Emily

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Rocklove's picture
Replies 14
Last reply 11/10/2010 - 7:07pm

 

I did the 6 rounds of Bio-Chemo things were shrinking well, then went on the maintenance part, did 2 rounds of maintenance then scans showed developed new tumors in the liver. There are multiple new lesions laterally in the liver in segment 8 there are new lesions in segment 5 and 6 as well. Existing tumors were stable or shrinking a little.

Dr. Weber advised I go on the PD-1 Antibody Combo Trial. There will not be any openings until 4 weeks pass, so I am getting worried about waiting so long before I can jump into treatment.

My HLA Type is HLA2 Positive so Dr. Weber said I have good options. Asked if I could go on IPI first so I could get started on something quicker, he said I would not qualify on the PD-1 trial if IPI was first, but could do IPI  if the PD-1 trial did not work.

Moffit sent slides and bloodwork to see what I am compatible with as far as BRAF & Mek inhibitor trials I won't get results for about 3 weeks.

A friend found the MRI Guided Laser Ablation trial and I sent the contact a msg to see if I would qualify http://www.mayoclinic.org/news2010-jax/6006.html

Looking for any comments or advice that I should consider while I wait.

Thanks,

Rocky (Stage IV Liver Mets)

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Brandi's picture
Replies 2
Last reply 11/10/2010 - 5:29pm
Replies by: Brandi, glewis923

I don't know if anyone on here is a steeler fan but here in Pa. I think everyone is. Anyway the reason I bring this up is because coach Bill Cowher's wife died of skin cancer about a year ago (I think). They did not release what kind of skin ca but I saw all the posts about mel not getting the attention it deserves and I thought of this story. Bill will actually be on the news tonight talking about living without Kaye. I too believe this deadly form of cancer needs more attention. I was actually thinking of ways to bring it into the public spotlight. We need people to understand what this is and how bad it can be if left to run rampid. I just thought I would let everyone know of another famous person who died from skin ca. Maybe just maybe it will be brought more into the main stream spotlight. It's a sad way for mel to get attention though. I don't wish it on anyone.

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DCMF's picture
Replies 4
Last reply 11/10/2010 - 9:25am
Replies by: DCMF, Anonymous, Becky, 2atlascedars

We are an Ontario charity who are looking for young people who are suffering from, or who have been affected by, melanoma to appear in an educational video.  The David Cornfield Melanoma Fund was established in 2007 and is devoted to saving lives from melanoma by promoting awareness of this disease.  The Fund was created in loving memory of David Cornfield, who passed away from melanoma in December 2005 at the age of 32.  David was my step-brother and left behind a legacy, including a young son. 

We are in the process of making an educational video aimed at teaching youth and their caregivers about preventing and detecting melanoma. We plan to distribute the video to summer camps, schools and other stakeholders.  We have hired a dynamic well-known production company, Evidently, to help us shoot this video.  We are moving things forward very quickly are looking for actual patients (preferably younger people, such as teenagers or young adults) or family members to appear in our video.

 The video will be shot in Toronto hopefully around the end of this month. We are not in a position to pay for the appearance but would, of course, cover reasonable expenses i.e. parking.
 
If you or someone you know are able to assist, that would be wonderful.    Kindly contact me on this Board post or by email at david.cornfield.melanoma.fund@gmail.com and I can give you some more information.
 
Thank you
Elyse
  

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jenniperry's picture
Replies 8
Last reply 11/9/2010 - 10:50pm

Husband taken off trial and off chemo. It worked to reduce all tumors and remove the small lung tumors and all subcutaneous are gone. Still has 2 in the liver, one 3.1cm and one 1.8cm. Dr. said we will wait until January and re-scan because he is no longer a candidate for any trial nor chemo. He said waiting 3 months was within guidelines and since they haven't grown or shrunk in two months he feels safe doing so. I feel like I'm going nuts.

Cherish every day you have.

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/9/2010 - 10:27pm

Hello,

I am a very physically fit 45 y/o male, but I was just diagnosed last week with an Acral Lentiginous Melanoma. In the biopsy it was found to have a 3.7mm Breslow's Depth (Clark's Level IV), but it was not ulcerated and had a Mitotic Index of < 1 per mm2. In my first post-diagnosis exam there were no other lesions and no enlargement of the lymph nodes found.

Next week I will have a sentinel node biopsy performed, along with a wide area excision of the melanoma. The surgeon said they will not bother with the lymph nodes in the knee area, but will focus solely on those in the inguinal region. Also, the surgeon mentioned a plan to take a 2 cm margin out with a skin graft from my thigh to close the defect.

I was wondering if anyone had any advice for me at this point in the process. This feels like a bad dream…no a nightmare.

Thanks,
Mark

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simone's picture
Replies 8
Last reply 11/9/2010 - 9:31pm

So sad to be joining this club...

I have been reading the posts for weeks now, but just finally joining.  So, here's the story.  I am a 37 yr old happily-married mom of 2 toddlers.   The Melanoma bomb hit our lives almost 2 months ago.  I was diagnosed in August w/ Melanoma Stage 1C (1.2mm with mitosis) on my arm and had the WLE a month ago w/ Sentinal Node Biopsy in New York.  Lymph nodes were not involved... thank God.  Then, my Melanoma team  tells me that I should be "focused on survival" for the next 2-3 yrs & need to be monitored for 6-10 yrs due to the mitosis.  WHAAAA?!?!?!?!?!  Needless to say, I almost fell off my chair!!!  I thought my news of lymph nodes being clear was starting to sound pretty good.... well, I don't mean "good" but you know, not "survival" discussions.  Then they told me that we should not pursue having another child (as were in the midst of trying & really hoping for). 

Sounds pretty scary & even scarier when I go online to research more. Not sure what to think.... or which part of this should be keeping me up at night.  Also, I got a second opinion from another Mela specialist & he said Mitosis is only relevant if primary is less than 1mm & you are determining whether or not to do SNB.  Have you heard this?  I have mitosis, which one group seems really concerned about in terms of risk for recurrence.  Other doc said no longer relevant.  What have you heard?  Should I really be "focused on survival" and also halt the baby plans? 

Thank you!  You all seem like an amazing group of people -sorry we have to meet this way!  :)

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NicOz's picture
Replies 8
Last reply 11/9/2010 - 2:29pm

Not around often these days- I've found it's better for my health if I remain only a rare visitor :P

Just a heads up for those interested. Had scan yesterday, am getting organised today, flying back tomorrow and having another craniotomy Thursday (Oz time). Feeling very happy and relaxed about it all. Looks like it will be a re-excision of a previous right frontal tumour, so hopefully same bone flap will be used and I can keep my separate sites limited to 6 (ROFL!)

Biggest concern is that they don't make my eyebrows uneven. They fixed them last time, so let's cross fingers that they keep them where they are :)

Yes, that will make 7 separate surgeries for craniotomy, and a total of 9 times opened up. The timing is fantastic, as I will be well healed and free(ish) of headaches for Georgia's first dance concert and school presentation concert in a few weeks.

They are concerned that they are finding it difficult to find stable areas to screw in the frame (it's the soccer ball effect of my head). I've suggested that I am doing them a favour by keeping them on their toes and helping them develop their problem-solving skills. I think that's important in the medical profession, don't you? That will leave me with 4? in there, but they aren't causing symptoms so I'm not bothered. We're pretty limited to one at a time thanks to my unstable skull, so it's all about prioritising.

Meanwhile, getting my things together and logistics organised... and feeling rather smug that I'm still ahead of JAG in the craniotomy stakes :P

See you on the flip side!

Nic xxx

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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JenC's picture
Replies 1
Last reply 11/9/2010 - 12:45pm
Replies by: Sherron

My husband just finished his 2nd week of IL-2. Just before his first dose he got high dose radiation on two large tumors on his face and neck. The one on his parotid gland is about the size of a golf ball and it started oozing brownish discharge after week 1 of IL-2. He put a bandage on it to cover it up and ever since he removed the bandage it has been dripping blood. I know his platelets are low due to the treatment but I'm concerned about the bleeding. If it is covered it stops, but as soon as the bandage is removed it flows. We will call his doctor in the morning, but has anyone else experienced this?
Week 2 was definitely worse than 1, and he only got 7 doses. However the worst side effect had nothing to do with IL-2. On Wed he was crawling out of his skin and could not relax, a symptom he got the 1 st time. He said it felt like he was xeroxing from heroin (based on tv/ movies). The nurses assured us it was IL2 toxicity. He was ready to quit when someone finally realized that he stopped requesting oxycodone. At home he was up to 8/ day and by Thursday he had only taken 5. He was detoxing! They started to give him oxycodone and he was able to get 2 more doses.
Now for the 4 week wait!

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We are an Ontario charity who are looking for young people who are suffering from, or who have been affected by, melanoma to appear in an educational video.  The David Cornfield Melanoma Fund was established in 2007 and is devoted to saving lives from melanoma by promoting awareness of this disease.  The Fund was created in loving memory of David Cornfield, who passed away from melanoma in December 2005 at the age of 32.  David was my step-brother and left behind a legacy, including a young son. 

We are in the process of making an educational video aimed at teaching youth and their caregivers about preventing and detecting melanoma. We plan to distribute the video to summer camps, schools and other stakeholders.  We have hired a dynamic well-known production company, Evidently, to help us shoot this video.  We are moving things forward very quickly are looking for actual patients (preferably younger people, such as teenagers or young adults) or family members to appear in our video.

 The video will be shot in Toronto hopefully around the end of this month. We are not in a position to pay for the appearance but would, of course, cover reasonable expenses i.e. parking.
 
If you or someone you know are able to assist, that would be wonderful.    Kindly contact me on this Board post or by email at david.cornfield.melanoma.fund@gmail.com and I can give you some more information.
 
Thank you
Elyse
  

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Nebr78's picture
Replies 1
Last reply 11/9/2010 - 4:09am
Replies by: Dynasysman

Have you noted that FDA has delayed the approval of Ipilimumab by 3 months.  I suppose they all want to go on vacation with our president, while some of us stay home and suffer.   Since I can't get into a clinical trial, I was waiting for Ipili to be approved for my Dr. to use possibly. I am the one with heart disease also.

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djpayn's picture
Replies 1
Last reply 11/8/2010 - 9:29pm
Replies by: Jim M.

Hi!! I am in desperate need of a wheelchair for a few weeks to months and was hoping that someone in the tampa / moffitt hopital area has an old one they would let me have for a while.  if not, does anyone know where i can get one donated or for cheap?

this is not for me, but a family member who is unable to walk right now due to an accident.

 

thank you for your help with this.

 

Djpayn (dawna)

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need for suggestens for recovery from surgery

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