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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jimjoeb's picture
Replies 5
Last reply 5/13/2011 - 6:02pm
Replies by: MMarieMetcalfe, Anonymous, jimjoeb

I received the first pathology report following my WLE and SLNB of three lymph nodes. The first report says that the provisional diagnositc all is negative. Yeah!!

However, it also says that results of immunostains and step sections pending. I expect those results in a few days. Am I right to understand that there is still a possibility of something showing up or they wouldn't bother with the immunostains and step sections?

Be Not Afraid-God is with you always Stage IIIa

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Leigh's picture
Replies 5
Last reply 5/13/2011 - 11:43am

Hi,

I was diagnosed in December last year at the beginning of a southern hemisphere summer.  A week before we had decided to move to Queensland - melanoma capital of the world.  We used to live there for a couple of years and have some (very) extended family there.  We were really looking forward to this move as it was hopefully going to bridge a gap between our families and my husband is extremely keen to move back to his homeland.  But after the diagnosis, a number of scares, and a summer spent avoiding the outside during the daytime, we decided we should not go.  We are now having second thoughts as we enter a cool winter and we were looking forward to finding some middle ground for us both in terms of where we live and of course they have a great (summery) lifestyle.  (I would actually be happy staying put but we are living in my hometown and although my husband says he is happy here I believe he hasn't settled and wants to move back).

I just dont know if this would be a completely ridiculous move.  On the one hand I think - are you crazy moving to melanoma central, on the other I think well at least I know I should protect myself and how to do this.  My kids are fair too.  Is it possible to live in a warmer climate with melanoma?  (especially with kids who are still only 3y and a baby and will obviously be running around and not willing to wear too much clothing).

I'm not sure if melanoma is caused by burns in childhood primarily or is it actually the amount of UV exposure that plays an important part (obviously I would be absolutely certain to avoid any burns in the girls).

Thanks for your thoughts if you have got this far, I'm not sure if this is a great place to write this but I cant think where else to get advice/opinions.

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TracyLee's picture
Replies 5
Last reply 5/13/2011 - 6:26am

Second opinion consult on Tuesday in Philly at U of Penn.

Since seeing radiation oncologist on Friday, I've popped another node in my neck, right behind the still healing incision site from April 11th surgery.

Now being advised to:

NOT do radiation

NOT allow more surgery

Begin Ipi (Yervoy) every 3 weeks x 4 rounds, then possibly do radiation

Tons of appointments between now and next Wednesday. I do work 40 hours a week, in between appointments! (Blessed with a wonderful boss and co-workers, but the guilt.....ugh)

Mine is Stage III, bordering on IV - scalp & neck

Thoughts?!

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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petie540's picture
Replies 3
Last reply 5/12/2011 - 9:17pm
Replies by: petie540, Anonymous, KatyWI

Has anybody who has been diagnosed as stage 1V been treated only with temodar after the initial diagnosis was elevated to stage 1V?On8/10 after a 11B dx. on 3/09 with only observation I was started on temodar 140mg.for 42 day cycles and 14 days off. Now in cycle 5 and have been so far NED.Next cat/pet is in June then might go off all meds at that time .We will see then. Thanks.And by the way I want to thank the board for the kind responses to my previous post about waiting. That night I let my emotions get the best of me.

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JennerFromIowa's picture
Replies 4
Last reply 5/12/2011 - 8:54pm
Replies by: JennerFromIowa, Fen

Does anyone know of a melanoma walk/run in Iowa?  Have been trying to find one for quite awhile but no luck.  I would have thought Des Moines would have one but haven't found one there either.  Thanks!

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stanscott's picture
Replies 4
Last reply 5/12/2011 - 6:29pm

Just wanted to let everyone know my thoughts are with you. I have been off the page for quite a while. My health totally fell apart with a minor surgery on Oct 7, 08 leaving me bed ridden for a time, but things have improved and life is moving again. Just want to say I'm alive and say hi.

stan

Music is the river that navigates history.

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Lisa13's picture
Replies 2
Last reply 5/12/2011 - 6:00pm
Replies by: Carol Taylor, ShariC

Met with my oncologist yesterday after being kicked off the ipi trial for suspicious activity in lungs. He said my CT scan showed 20 spots, but told me yesterday he feels there's only 2 that look suspicioius and may be melanoma.  That being said, we'll re-scan in 3 weeks to see if any of these spots have changed.  I can only hope that they have either disappeared or havn't changed in anyway.  Since I just had surgery and lymph node dissection 2.5 months ago, I really don't want to progress to Stage 4 so quickly cause that would say alot about my melanoma.

Anyway, if there is change, we're going with decarbazine. I've been pumping my body full of so many holistic supplements for the past 3 months, so I really hope my own immune system will remove whatever is in my lungs.  I hope like many of you, these spots won't change and I can go on feeling a bitt better about things until the next round of scans. 

Keeping the faith.

Lisa

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

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JenC's picture
Replies 15
Last reply 5/12/2011 - 1:49pm

My husband has been in this horrible fight for 17 months. Each step of the way has been met with disappointment and loss of hope. He has done the standard treatments of surgery, adjuvant radiation and interferon, tried to get on the braf trial only to get the control, IL-2 and more radiation and now ipi. However it seems that there is no getting ahead of this cancer. He hasn't been able to eat mostly due to pain and nausea but also due to the fact that he has tumors on both sides of his throat which causes difficult swallowing. His oncologist has always been positive, but was not able to offer much hope during this week's visit. My husband is down 60 pounds and looks like a cancer patient. He is on week 7 of the ipi trial and we're holding on to some hope that his tumors could still shrink, however his body cannot heal small wounds, let alone massive tumors. We have a home health and hospice nurse but are not ready to give up completely. I have read this board quite often in the past year and a half and have found hope and insight. I have read many of your stories and have been inspired. I don't want to just complain about our struggles, but maybe someone out there could provide words of hope. My hope has caused me to go on with my day life almost to the point of not facing the graveness of his situation. Life has been full and busy with two young children and a full time job. I am at a point where I may need to let go of some of my hope and just be with my husband. I hope I don't make my decision when it's too late.
Thanks for listening
JenC

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How long have you had mel, and what stage are you at now?

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lhaley's picture
Replies 16
Last reply 5/12/2011 - 9:58am

Yesterday I posted good scans. Well.......  it was the wet read and the report had not been dictated yet.

While in the office I complained about my surgery site from Oct. hurting.  The Dr. said that the radiologist hadn't commented but he saw that it had lit up and was surprised that nothing had been said to him on the phone. He felt and felt and could not feel anything. He called the radiologist and we thought he had gotten back with him because the Dr. was in and out of the room several times.  He even showed me the spot on the scan.

I was also seeing a surgeon about some stomach issues I've been having and when he left he said he was going to speak to my oncologist. 30 min. passed and we talked to the nurse and asked if she could call us today for the final decision if they were going to do additional tests on the gallbladder (not suspected to be mel). She said sure because my mel specialist was with another patient and she could not interrupt him.  I do love that I get to see more than one Doc often for the price of one, just always makes more waiting....  It was already 5pm at this point and we had left the house at 7am. with a 2 hour ride still to go.

Phone call just came. It seems that he was waiting for the final read on the scan. The arm is suspicious for recurrance. The tumor board is meeting on Monday to discuss. they always joke about how they just have to mention my name and they all know me.  He gave me some options that would be discussed if the final decision was recurrance.  At this point he is thinking surgery followed by radiation but he did give me other options including systemic. When they look at the scans again they might be thinking differently (my thoughts)

I went from high elevation to stomach rolling.  This would now be recurrance #6.  I've not lost my positive thinking but for the moment I'm down.  Have definitely decided that stomach issues are anxiety! Was feeling great before the Dr called, now I have that vice grip back.

Have 10 women coming tomorrow evening for an art quilt meeting and since I was in a good mood today I played instead of cleaned my house!  Sure hope they understand!!

Linda

Stage IV since July, 06  almost at that 5 year mark!

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AZJulie85's picture
Replies 1
Last reply 5/11/2011 - 11:39pm
Replies by: lhaley

I am currently Stage 3b after having had two WLE and negative SNB's on the left leg and did one month of high dose interferon. Seems like every 5 years, melanoma reappears on my leg.  My derm just did a shave biopsy in the same area that came back as melanoma , but it is very thin (.2mm).  Will be seeing my oncologist and onc. surgeon next week, but am wondering if I should be expecting them to suggest a Wide Local Excision (WLE) and Sentinel Node Biopsy (SNB) again due to it being a recurrance, even though it is very thin?  The biopsy was a 5 x 4 x 1mm area, and the path report did say the melanoma extended to the edges of the specimen.   The derm scheduled an excision, but I thought I should probably get consult first from my previous surgeon - if he doesn't suggest a WLE should I insist on it?  Any thoughts on WLE and SNB would be appreciated. 

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sheri47's picture
Replies 1
Last reply 5/11/2011 - 9:45pm
Replies by: lhaley

little about my moms mm,  her first mm was in 1982 left heel they removed half her heel stage 1 level 5 no nodes,

then 2001 came back encased in a lymphnode in the belly was against the colon stage 4,

 2005 and 2009 back to the same foot , she always just did suregery to removed masses, no other treatment,

 ok now 2011 back to same foot , was wondering if radiation will kill the mass;s there are 3 now biggest 2 cm will kill them thank you sheri from ohio

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Shelby - MRF's picture
Replies 1
Last reply 5/11/2011 - 6:02pm
Replies by: Gene_S

The MRF has partnered with the Melanoma International Foundation to offer a free webinar to patients on Thursday, May 12, 2011 from 7-8:30pm EDT.  Please join Dr. Antoni Ribas to learn about The Changing Landscape of Melanoma Therapies.  Dr. Ribas, from UCLA, is a two-time MRF research grant awardee, once in 2006 and again in 2011.  To register for the webinar, please use the following link:

 https://www1.gotomeeting.com/register/269280121 

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Anonymous's picture
Replies 1
Last reply 5/11/2011 - 4:43pm
Replies by: Linny

We just moved to Margate City New Jersey and need a great dermatologist for my husband.  We are willing to travel if necessary .  Any suggestions would be most helpful. 

 

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lhaley's picture
Replies 13
Last reply 5/11/2011 - 4:33pm

I know that we have a lot of new posters lately and I just wanted to give you some hope. My mel arrived in 1979 and had multiple primaries. In 06 I had a deep recurrance under the original scar which took me to stage IV.  That was almost 5 years ago!! 

They've been watching 2 lung nodules and scans today showed they are still stable. Oncologist thinks they might even be a shade smaller. Too small to biopsy and they have been watched now for 5 months. In retrospect we can see that they were there for over a year.  

While I've had 5 recurrances, twice in the bladder, I'm still here and not planning on stopping!

Happy dance tonight!

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