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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rrrule32's picture
Replies 8
Last reply 8/23/2012 - 9:34am

Hello,

Does anyone know if the following supplements can effect the way Zelboraf works?  My fiance is on Zelboraf, but I also just started her on a whole bunch of supplements.  Here is the list of some of the ones I'm curious about:

Resveratrol

Turmeric

Quercetin

Aged Garlic Extract

Eugenol (Cloves)

Fenugreek

 

Thank you for any info you might have.

Travis

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JerryfromFauq's picture
Replies 1
Last reply 8/23/2012 - 9:02am
Replies by: walesgirl

 The management of in-transit metastases is challenging, since the treatments and extent of disease vary greatly based on the number, depth, location, and distribution of lesions, and on their biological behavior. A number of different treatment options exist, but there is no level 1 evidence to guide clinical decision-making. Herein we present our institutional treatment algorithm, which allows for individualization based on the patient's presentation.

 

In-Transit Melanoma: An Individualized Approach

 
By Travis E. Grotz, MD1, Aaron S. Mansfield, MD2,3, Lisa A. Kottschade, CNP2,3, Lori A. Erickson, MD4, Lori A. Erickson, MD5, Svetomir N. Markovic, MD, PhD2,3, James W. Jakub, MD1 | December 30, 2011

I'm me, not a statistic. Praying to not be one for years yet.

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Snickers60's picture
Replies 1
Last reply 8/22/2012 - 10:09pm
Replies by: awillett1991

Think this may be the PREVENTIVE DRUG Dr. B. is talking about to give 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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Snickers60's picture
Replies 2
Last reply 8/22/2012 - 6:48pm
Replies by: Snickers60, Randy437

Wayne got an EXCELLENT PET SCAN REPORT 'except' for a spot on his right leg.  It was there last time, but they did not think it was melly.    This timethe Activtiy of it is up and they do think it is Melly.   They did an MRI and still thought it was Melly.   They are taking a wait/see approach to see if the ZEL will get it and it's just a STUBBORN spot.   It's in the muscle above the knee and out from the femur.    

When they do PET in Oct, if it is still there, they will do biopsy, then surgery if Melly !   At that point, they would expect him to be completely clean of anyquestion of Melly in his body and Dr. B. says the PREVENTIVE MED should be available by then.   Have any of you heard of the MELLY PREVENTIVEMEDS ?      He said they should be released in Oct. or Nov.    OVERALL, we thought this was an excellent report because the PET was even better than before.   NOTHING anywhere else.   CLEAN, CLEAN !  

Anyone here had a MELLY in the muscle ???    THANKS 

Nancy (devoted wife of 3 X Warrior Wayne)   BLESSINGS AND HEALTH TO YOU ALL 

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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We have been contacted by a television reporter who is looking for a particular patient profile.

Do you live in the DC-metro area and have been diagnosed with melanoma on your scalp? Situations where melanomas were caught by a hair stylist or other personal care professional are extra helpful, but not required.

If you meet these guidelines and are willing to talk with a reporter about your story can you drop me a note?

Thanks

Tim--MRF

tturnham@melanoma.org

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chalknpens's picture
Replies 2
Last reply 8/22/2012 - 10:43am
Replies by: chalknpens, washoegal

I met with a dermatologist  yesterday at Dana Farber in Boston and reviewed my pathologies and surgeries. He reassured me that there is no need for an oncologist at this time. He said that as I've caught the melanoma early, and had it removed surgically, it is unlikely that it will spread to organs. His recommendation is that I continue to see the dermatologist and surgeon regularly to keep up with what may be recurring sites. He noted that the surgeries I've had are healing well.

He basically said that if I stay with the three month schedule of derm visits and surgeries as needed, each melanoma will be caught early enough to be excised completely, as has been done so far. To me, the schedule is daunting, as I am going this Friday to have the last of the first five sites' sutures removed. It is just three months from the beginning of the eight surgeries that these sites took. I will stick with it as long as I can. I wish I could share the doctors' sense of success with each surgery. This is better news than might have been. I'm not ungrateful, just overwhelmed.

I am not perfect, but I am enough.

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EmmaR's picture
Replies 17
Last reply 8/22/2012 - 10:11am

I just stumbled across this website today and I'm not really sure how this all works. I got diagnosed with stage 3a melanoma a few months ago and have undergone two surgeries already, and am about to start interferon in a few days. 

I was wondering what type of stuff I can expect during the initial weeks of treatment? I know everyone is different but if you could share any experiences you have had that would be greatly appreciated.

I'm really scared about the upcoming year, and its nice to have found a place where I can know I'm not alone.

Livin' Lymphless

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FightingItinPA's picture
Replies 6
Last reply 8/22/2012 - 9:54am

melanoma on lower neck; 2 surgeries; last revealed no melanoma cells in lymph nodes.  However, thyrid follicles were detected and thryoid removed last week.    SO CONFUSED about whether or not to start the interferon treatments.   Any words of wisdom on what made your decision to do it or not?  thanks

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Hi everyone, I'm new to posting.  My step dad had melanoma 15 years ago (Stage 3) and did Interferon for a year.  I remember looking  at this site and getting all the info I could on Melanoma back then.  It really helped me get informed.  

Back in June of this year, he was diagnosed again with stage 4 and it's in his lungs, kidney, spine and esophagus.  They say too many to even count in one of his lungs.  He also had a malignant plural effusion which he had surgery for to drain the fluid in his lungs on 7-30-12.  They injected talc to prevent it building up again.  He is still healing from that and is very, very weak and tired and in a lot of pain all the time.  Now they have scheduled him for another surgery this Thursday 8-23-12 to put a stint in his kidney to try and save it.  And in the meantime he got marked for this "Phase II/III Study of SBRT for localized Spine Metastasis" yesterday (his choice) to try and shrink the tumor in his spine for pain.  The papers they gave out telling about it have some pretty scary sounding side effects.  I've read a lot about it, but I'm still just pretty unsetteled about the whole thing.  He is supposed to get shot with an hour of this SBRT radiation on Monday.  I'm pretty worried and so is my mom.  He really is already in bad shape.  All we (and he) wanted was to focus on QUALITY of life.  We just want him to feel better and for some of his pain to be relieved.

I just wondered if anyone here has been in this study, knows of anyone who has or has information on it.  Is it worth the risk?  

Thank you so much,

Dawn

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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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