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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lrkg1234's picture
Replies 10
Last reply 8/22/2012 - 1:25am

Hello all ~Just needing a minute to vent. 

My husband, Scott was diagnosed with stage IV mucosal melanoma on the 8th of this month.  I have been trying to get a doctors appointment at a good cancer center ever since then.  I have jumped through hoops and ran in circles all this time.  I am on the phone non-stop and nothing has happened. 

First Dana Farber set us up an appointment after 3 days of waiting with the wrong department even though I know I asked for Melanoma because the receptionist needed to know how to spell mucosal.  That has slowed us down and I don't have an official appoinment yet because we are having trouble with getting them the pathology slides.  Johns Hopkins has the slides and the other set of slides was sent to the place that tests for BRAF & C-Kit.  Will they give those back to the lab when they are done? 

Johns Hopkins got his records and slides on Monday and have been reviewing them since.  I plan to call again tomorrow.  Once they are done with the slides we have to get them to Dana Farber. 

You wait and wait.  People promise they will call you within 24 hours, does not happen.  Exhausting. 

No one will see you without these slides and it really slows things down. 

I'm so worried that it will probably be full month after diagnosis before we even begin any type of treatment.  I don't want the cancer to spread any further. 

Did anyone else have these problems?  Any tips?  Does a month seem to long to wait or is this typical? 

Any advice?  Lisa (Scotts wife)

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ed kv's picture
Replies 5
Last reply 8/22/2012 - 1:13am

My wife was diagnosed today with stage 4B melanoma.  Primary location in mid back but heavy in right armpit lymph and several spots in R lung.

We live in Michigan but are moving to Houston next week so we can go to MD Anderson.  I'm hoping there are trials there that might give us a chance.  So many details to work through with the move AND the medical stuff!!!! 

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ALM's picture
Replies 7
Last reply 8/21/2012 - 11:38pm

Hi Everyone

From what I have read my melanoma (Acral Lentiginous Melanoma) is fairly rare (more so since I am caucasian).  Is there anyone out there who has the same disease and can offer me any info? I am stage 4. The primary liesion was on the middle toe which was amputated. A year later another liesion appeared on the ankle which was surgically excluded. I would like to know if ALM is any more dangerous or aggressive than other types of melanoma or are all melanoma basically the same?

Thanks for any help 

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hbecker's picture
Replies 8
Last reply 8/21/2012 - 8:16pm
Replies by: kbrenner, hbecker, Anonymous, AlanM, rlowe, scots

Does anyone have experience with a skin graft on top of the (mostly bald) head? That's where the WLE will be done, and it could be as big as three inches in diameter. Just wondering what to expect ... 

Thanks!

blogging at www.hazelbecker.com

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Gene_S's picture
Replies 1
Last reply 8/21/2012 - 7:19pm
Replies by: Anonymous

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 9
Last reply 8/21/2012 - 2:39pm
Replies by: kristine, Anonymous, Harry in Fair Oaks, Jeff's Mom

I am at a crossroads and looking for advice, so please feel free to chime in. I am about 1.5 yrs NED but didn't have the typical diagnosis. I had a small bump removed which pathology suggested was metatstatic melanoma. I had seen 3 oncologists in Chicago area....Dr. Marilyn Evrard, Dr. Howard Kaufman and Dr. Jon Richards. All had/have varying opinions. Dr. Evrard not being a melanoma specialist suggested seeing Dr. Clark at Loyola, Dr. Gajewski at U of C or the two aforementioned doctors as they are the regional experts.Dr. Evrard had the scans performed(no mets anywhere) concurred with doctors and said I potentially have a good prognosisbased on her dealings with melanoma but I'd be better served by seeing an expert. Based on nisurance I saw Richards with a second opinion from Kaufman. Since there is no primary leison I'm lumped into a unique group of unknow primary. Now for the adivce from you, the valiant warriors out there. Not to create prejuidice against either doctor I will only say that one feels I'm stage 4 with uknown primary and require extensive scanning (3 months CT of Chest down to Pelvis & semi annual brain MRI). Risk of recurrence is low/medium.

 

The other feels that there possibly was no primary or my body had immune reaction to destroy it and I'm low risk for recurrence and require semi annual scan of chest & neck. Let me mention that both had my original path slides reviewd and both were suggestive of metastatic disease but didn't say metastatic. Dermal melanoma has been thrown around and I have researched it and it seems a possibility but again nothing is concrete and as I have realized anything is possible with this ugly disease...just doesn't seem fair. I don't post much here but I do follow and check to see how people are doing. I figured with all the good advice and support I see on here, someone can help me with making a choice in regards to which doctor's follow up plan do I go with. I'm scared, confused and lost. I just want to stay on top of this but not subject myself to scans etc that may be harmful in future.

 

Finally anyone familiar with hematocrit on blood test? Mine has been low on last 2 tests but not bad....not bad enough for doctors to be concerned. Anyone have any ideas on that?

 

Stay the course and fight the fight. You're some of the bravest people out there!!! God bless!!!

Let's work for better treatments....for a cure!!!!

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triciad's picture
Replies 1
Last reply 8/19/2012 - 2:00pm
Replies by: Anonymous

Does anyone know how to get your dendritic cell count checked?

I was just reading an article in the Journal of Clinical Oncology, and it mentioned that people who had a low dendritic cell count prior to taking Leukine had a better resrponse.  Maybe I should get that checked before starting this medication.  Any words of wisdom would be appreciated!

Thanks for your help!

Tricia

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christie's picture
Replies 7
Last reply 8/19/2012 - 12:25pm
Replies by: ValJaneMB, christie, bcl, BonnieLea, Anonymous

Does anyone have any suggestions on what I can ask or suggest to our doctors?  My husband was diagnosed with Stage 3 Melamona in 2010.  He did the year of Interferon and completed it November last year.  He had been doing very well until recently.  He was having problems so we went to the doctors and a ct was done.  He has a 3 cm mass in the front part of his brain.  They have put him on steroids but to me, it doesn't seem like they are helping (he is in the hospital).  He was scheduled for the Gamma Knife but we found out yesterday there is a tumor in his spine.  They have now told us that the Gamma Knife won't happen and are just going to make him comfortable.  They are doing radiation on his spine but that is it. 

Is there something that might help him?  We are in Manitoba, Canada.  No Melanoma center, just an Oncogist in Winnipeg that lets the Cancer Center where we live know what to do.  I feel helpless.

Thanks

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marysan's picture
Replies 9
Last reply 8/19/2012 - 11:40am

Has anyone done whole leg perfusion?  Can anyone recommend a teaching facility in the NE that has had success with this?  My husband has Stage 3C melanoma, started with the 4th toe with two recurrences over the past year on the lower leg.  Thanks for any information.

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dafad777's picture
Replies 6
Last reply 8/19/2012 - 11:07am

my daughter is nine years old.she first told me about spot on her ear about a year ago.i really didnt think anything about it because I had no information or edacation on melanoma.I am one of those people that thought this only happens to older people.as time went by the spot started to grow bigger.not fast but slowly.more slowly that it was not that noticeable until it was the size of a pencil eraser.I said to my husband this doesnt look right it almost looked like she tryed to peirce her ear.when we took her to the doctors they looked at it and told us to go see a dermatoligist.unfurtunate getting an appointment with them takes a while.had to wait four months to get in.one day my daughter said look mommy i took a piece of that black thing off my ear.I said to her leave it alone until the dr. looks at it.now i know that its called ulceration.when we saw the dermatoligist she set us up with plastic surgeon to remove the lesion.the pathology report came back melanocytic tumor of uncertain malignant potential.then under comments it said it had caracteristics which has been termed pigmented epithelioid melanocytoma with overlap with melanophagic/animal-type melanoma.after the report was looked at by three different dermapatholigist they recomended she go back and have a wider margin removed 5mm.she had that surgery done right before christmas.that came back with margins free of lesion.she has an appt. to go see the melanoma specilist feb 22.Has anyone heard of this type in children what other treatments will she have.will they do a slnb?

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Replies by: GaylaB, Anonymous, Tina D, buffcody, Richard_K, BonnieLea, H555, Janner

Wayne had colon cancer with an early spread 9 years before the initial melanoma behind his earlobe and then 13 1/2 years between the mole and the mets

to lungs, liver, sternum, spine, bone.     Was just wondering if any of you had any other kind of cancer other than MELLY?

Nancy (devoted wife of 3 X warrior Wayne) 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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JenJen12's picture
Replies 6
Last reply 8/18/2012 - 8:56pm

Hi all,

My name is Jen and i used to come on this site all the time. I still read posts on a weekly basis but unfortunately i now need help and advice.i was diagnosed stage 3a  from primary on left foot by toes 2.5 mm. I had 4 cells in my sentinel node  on left thigh and did a year of interferon which i handled just fine.  I just had my 3 year NED anniversary with a PET/CT that followed 2 weeks later. Unfortunately my onc called yesterday and said there was a hot spot on the right side of my body that had a high suv of 4.9. It is near my groin, bladder and colon. So this would move me to stage 4 :( They couldnt pin point it though because it did not show up on ct. It is very likely melanoma because of high suv. No other spots showed up in body. I had an MRI yesterday around 5 pm to further investigate. I have not heard back from my oncologist which i'm sure is bad. I leave for Europe tomorrow for two weeks. I was going to cancel but i am going to go still and deal with all of this when i get back.

What do you think my next step would be? I don't have the Braf mutation either. Surgery adn then IL-2 ? Yervoy. I handled interferon really easily. I am a 29 year old female that was diagnosed at 26. Any advice on what my next steps should be are greatly appreciated!

Thanks so much,

Jenjen 3a now probably 4

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Replies by: audgator, LynnLuc, Theresa123, Anonymous, Tim--MRF, Linny

My oncologist told me to "look up" anti PD 1.  I was wondering if someone could explain it to me so I could understand it.   Like to a 2 year old or something;)   I need the information to make a decision about my care.

 

Thanks,

Terri

Stage 4

Every day is a miracle.

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ed kv's picture
Replies 2
Last reply 8/18/2012 - 8:51am
Replies by: Cate

My wife was diagnosed today with stage 4B melanoma.  Primary location in mid back but heavy in right armpit lymph and several spots in R lung.

We live in Michigan but are moving to Houston next week so we can go to MD Anderson.  I'm hoping there are trials there that might give us a chance.  So many details to work through with the move AND the medical stuff!!!! 

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bikerwife's picture
Replies 2
Last reply 8/17/2012 - 7:21pm
Replies by: gabsound, Fen

Monday was an awful day. Went in at 715 for a 4 hour procedure for 2 mets turned into a 9 hour procedure for 6 mets. Dr said they got them and they were barley visible. Still I'm thinking its spreading everywhere mon was rough by tuesday we both were emotionally exhausted.

Wed morning we go in for kidney scan and chest cavity scan. We walk in dr office and dr high 5s Lynn. I'm still wondering so he shows me the scan from 3 months ago it was 9.8 cent and its glowing then he shows me new one it not glowingi say and dr says that's cause its gone. What's in chest cavity is almost gone also we shared lots of tears and hugs with our dr. This drug is awesome.

Gamma knife can be used again and they will continue to monitor brain closely but for know we smile. Lynn says he's slowly crawling back. He says keep fighting keep praying and keep beleiving.

Lots of love
Lynn husband to bikerwife

What God leads u to he will. Lead you through

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