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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madeclaire's picture
Replies 6
Last reply 9/25/2012 - 2:59pm
Replies by: madeclaire, Charlie S, Jeff's Mom, Anonymous

Hello everyone,  I was originally diagnosed with mucosal melanoma (nasal cavity) in 2003.  It was a non pigmented lesion that began to bleed.  I then entered a vaccine trial and remained NED for 5 years but closely followed by an excellent nead and neck surgeion and an oncologist specializing in melanoma at Northwestern Memorial in Chicago.  I had a recurrance in 2008 and again had surgery which involved a partial maxillectomy (removal of some of the palate, teeth and jaw bone)  I was only offered interferon and chose not to take it.  Then I recurred again in 2011 and had more of the palat, teeth and jaw removed and received radiation.  6 weeks ago a scan can back with uptake in one neck node and several lesions in the liver.  I had tissue sent ot to be analyzed for mutations.  I waited two weeks only to be told that the results were inconclusive due to bone mixed in with soft tissue.  I decided to have the neck node removed and now await again a full molecular analysis of this tissue.  If I have either a C-Kit or Braf mutation my treatment options are clear and hopeful.  If not, my oncologist is offering me either  standard chemo, IL 2 or yervoy.  He also thought I should consider some of the trials out there.  I have been pcking through a list of more than 28 trials around the country and have narrowed it down to NIH in Bethesda which has a vaccine trial and also an IL 15 trial or the U of Chicago which is also doing a vaccine trial.  Does anyone out there have any info on better trials for someone in my situation.  As you all know when diagnosed stage IV and given less than a year to live without treatment it feels like there is a gun to your head.  I don't want to waste energy or look in too many directions at once, but I do want to make an informed decision on my next step.  I have two kids in college and would love to live to meet my grandkids.  I am also healthy and active and love life.  This board has been an inspiration to me for some time.  

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madeclaire's picture
Replies 2
Last reply 9/25/2012 - 2:39pm
Replies by: madeclaire, Lucassi

Im facing the difficult decision to begin treatment as a stage !V with mets to the liver.  My results for molecular testing will not be in for a week and I've already waited 6 weeks due to a problem with the first tissue sample sent to the lab.  I'm about to begin on yervoy since everything I've read indicates this could reinforce other drugs I may be eligible for should I have a mutation.  Anyone out there that can tell me realistically what I can expect everyday life to be on Yervoy?  I'll be receiving 4 doses over the next 12 weeks.

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becky15's picture
Replies 8
Last reply 9/25/2012 - 12:27pm

A few days ago I noticed a raised skin coloured lump on the underside of my right foot, near the ball of my foot. It is about 1 cm across. I visited my GP today who doesn't think it is anything to do with my melanoma (stage 1a diagnosed 7 months ago, 0.72mm breslow on my lower left thigh near the knee with zero mitosis and invasive radial growth phase even though "superficial" Clark level 4 ), seemingly on the basis that it seems not to be attached to the tendons etc. He thought it could be a ganglion or something to do with the tendon sheaths.

Now I've done some research on the internet, however, I've gone into meltdown as it seems it could be a subcutaneous metastic melanoma and would therefore be a recurrence and fast forward me to stage 4. I'm not sure that my GP has enough knowledge about melanoma to even know about such a recurrence.

I am pulling forward my 3 monthly follow up with my consultant dermatologist to this Thursday but, in the meantime, any words of reassurance would be greatly appreciated as I am falling apart.

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newmanmark's picture
Replies 4
Last reply 9/25/2012 - 11:18am

Hello,

It has been a while since I have posted anything.  This December will be 3 years NED for me.  I was diagnosed as Stage 3C in October 2009.  I had CT scans done last week and I got the call from my Oncologist today saying that they see something on my pancreas.  I am now going for a PET scan and a more detailed CT scan.  I'm praying that it is nothing.  Has anyone had a CT scan show something and then have it come back negative for melanoma?  I'm scared.

Mark

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Anonymous's picture
Anonymous
Replies 5
Last reply 9/25/2012 - 11:05am
Replies by: polwilliams, Lucassi, Anonymous, Janner, sharmon

Hi, I'm looking for some advice about whether I should seek a second opinion about a mark that has appeared under my toenail and has been there for about a year. I can't remember exactly how or when it started but assumed I had damaged it somehow without noticing and that it had bruised or was bleeding underneath the nail. It hasn't grown out with the nail and when I did a search on the internet read that it was advisable to seek medical advice if the mark doesn't grow out within a couple of months.

My GP didn't seem to know much about it and said it was unlikely to be melanoma because it was too 'straight'. However from what I've read, this is a characteristic of this type of melanoma. I tried to attach a photo here but it doesn't seem to work. The mark is on my little toenail, is brown in colour (not reddidh or purple, more a light brown), and covers the inside half of the nail.

Grateful for any advice you can give.

Thanks

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bikerwife's picture
Replies 0

It's been awhile since I posted and I read the post daily. I was heart broken when I read kevins post. He is a inspiration to us all as well as so many others on this board. I came here so many months ago looking for help and I found a family that cried the same tears I cried felt the same emotions and gave such encouraging words.

Tonight as my thoughts are with each of you know that I cherish the bond we have and pray for you daily.

Lynn starts 4th month of z tomo. He's doing well still hasn't gained his weight back and has some joint pain hair loss and awful skin issues. We are going to dr wed. For checkup not sure when we scan again.

Belva

What God leads u to he will. Lead you through

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Marilynn Eiken's picture
Replies 6
Last reply 9/24/2012 - 9:27pm

My husband is on his second 2 week dosing of Leukine.  The first round went well til about day 5.  Everything I read warned that injection site reactions were very common.  Which is what happened.  On day 5 his belly started swelling, welting, etc.  He suffered threw it til the end of the 2 weeks but when we started the injections this time the reaction was immediate.  The welts are the size of my hand, including my fingers, and mind you I am not a dainty handed girl.  Is this what most have experienced with Leukine?  I am a nurse and keep reminding him that his side effects could be so much worse compared to many treatments but after 14 days of injections Im not sure if he will have an unwelted area left on him.  We are using hydrocortisone, ice, heat, ibuprofen, caladryl.  Any other tips/tricks anyone could suggest? 

 

Thanks a bunch!

 

Marilynn

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/24/2012 - 7:50pm
Replies by: Maereard, mlbjab, Janner, Anonymous

Hi All Again,

I'm sorry but I have another question and any response may help me sleep.  I just recently had a spot on my back removed.  It was a freckle that appeared out of no where and started to get bigger and reddish.  It came back as melanoma.   It was only .25mm breslow depth so they did wide incision surgery only and did not check my lymph nodes because the oncologist said it was not needed.  Of course now I am seeing spots everywhere.  I have not even got the stitches out from the wide incision and I have discovered a freckle on the same shoulder that is mysteriously raised.  I am not a moley person but I do have a lot of freckles and to my knowledge this is the only one that is raised.  The oncologist did look at this spot for a breif moment when I went in last week but he said that I only have the one primary spot and that was probably it.  I have like a 2% chance that it will ever come back and I should be happy.  But I still terrified.  Can it appear as a raised freckle because if you google raised freckle you get melanoma?! Has anyone had more than one primary?  and this may be a stupid question but can one be deeper than the other?  This mysterious raised freckle has me very concerned.  I understand I should be happy about .25mm breslow but from what I have read there was a 4% chance that I would ever get melanoma in the first place so the 2% chance of it coming back seems pretty likely to me:(

Beth

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Rinn2012's picture
Replies 4
Last reply 9/24/2012 - 10:42am
Replies by: mel123, Linny, Rinn2012, Anonymous

Hello

I just found out recently I was diagnosed with stage 1 melanoma.

They said they will probably do a wide margin biopsy, and possible lymph node biopsy.

Can anyone tell me the details on the lymph node biopsy?

I am a little nervous and scared about this whole diagnosis ect.  It was a huge shock.

I see the surgeon on Monday to discuss the treatment ect.  But was curious about the lymph node in case I have to do that.

thanks in advance

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NYKaren's picture
Replies 16
Last reply 9/23/2012 - 10:40pm
Replies by: MeNDave, NYKaren, shellebrownies, LynnLuc, sjl, sharmon, Anonymous

Hi everyone.

I recently completed 6 weeks of Temodar and am going for PET scan tomorrow.  From the looks of things, I've had a partial response (so what's new?)

I realize that chemo is usually a temporary measure, and we're looking for stabilization until I can get into an anti PD-1 trial.  You never know, though.  since I've partially responded then advanced on Ipi, IL-2 and radiation, who knows what might happen on chemo.

Dr. Wolchok has said that we'd talk about adding other chemo drug(s) or switching regimins, so i'd l'm looking for any positive experience with Temodar and other chemo drug combos or other combos that have worked, even temporarily for people.

Thanks!

karen

Don't Stop Believing

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Tim--MRF's picture
Replies 6
Last reply 9/23/2012 - 8:41pm

 

Two pieces of breaking information today that you may hear about.  Neither are about new treatments, unfortunatelty, but both are very exciting for their potential to make a difference.

 

First, Congressman Bilbray, and Congresswomen Maloney and DeLaura are submitting legislation today that, if passed, will provide extended patent protection for investigational drugs that are tested in combination.  This will provide a major financial incentive for industry to do the kinds of studies they now find difficult but which offer the best hope for melanoma patients.  

This legislation came out of meetings MRF had with Congressman Bilbray, whose daughter has Stage III melanoma.  We proposed the idea to the Congressman and provided a background document showing how similar action in pediatrics and some infectious diseases has resulted in tremendous progress in drug development.

Most doctors agree that real advances in effective treatments will only come through combining two or more drugs together.  If these drugs are already approved, doing studies like this are relatively easy.  If they are not yet approved--still in clinical trials--they are very difficult.  Companies worry that any side effects that arise from a combination study will "taint" the data of their drug and hurt its chances of approval.  And they are reluctant to collaborate with other companies on these studies.  This legislation will add a "carrot" to the mix and will help accelerate these important studies.

 

Second, the new lead of MD Anderson decided to embrace a select group of cancers around which they will build major comprehensive programs.  The idea is to find ways MDA can have a major impact on these cancers, from prevention to cures.  They call the concept a “moon-shot”, hearkening back to the day that President Kennedy made a commitment that the USA would put a man on the moon.  

Everyone at MDA has worked to put forward a proposal that their particular cancer will be part of this initiative.  Those cancers chosen will receive significant new funding for research and outreach.  In that process, MRF has worked closely with key melanoma people at MDA to discuss both what a melanoma program could look like and how we can collaborate to make such a program successful.  Today MDA announced that melanoma will be one of the cancers chosen for this major investment of resources.

 

Neither of these announcements are new treatments or cures, but both developments have the potential to have a major impact in the fight against melanoma.  All in all, a very good day.

 

Tim--MRF

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NatalieZLea's picture
Replies 6
Last reply 9/23/2012 - 3:14pm

 

Hello all!

I was wondering if anyone could share their experience with Zelboraf.  In particular, I would like anyone's insight/experience with foot calluses and related pain.  My mom was diagnosed with metastatic melanoma last May.  Since then, she has undergone a lung resection, biochemotherapy, and most recently three craniotomies in three months' time.  Currently, mom has six brain tumors, a lesion in her liver and also disease in a lymph node near her pancreas.  Two and a half weeks ago, mom's oncologist at MDAnderson here in Houston started her on Zelboraf.  Since then, she quickly experienced side effects--notably sun sensitivity, a terrible rash all over her body and unbearably painful yellow calluses on the bottoms of her feet.  Her oncologist decided to suspend treatment for a week because mom's rash was so terrible and foot pain intolerable, and we will re-visit everything on Monday.  I was curious whether others have had the same experience as my mom regarding the excruciating foot pain and if so, how long does it last?  What remedies were used to releive the pain?  Also, any other contributions regarding your experience with the drug would be most appreciated. 

Kindest Regards,
Natalie

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this is brenda writing on behalf of kevin....

first i wana say that you all have been an ispiration to kevin, and are the reason for his positive attitude and strenght.

i took him to the E.R on friday because he wasnt doing too good.he had an mri and the results showed a significance increase in the amount of tumors and the size of the previous ones he had.he went through whole brain radiation and it seems like it wasnt effective.we talked to the doctor today and she said that he has began to bleed in his brain, and unfortunately theres nothing more we can do.

as you can imagine our hearts are broken. he has been so strong and brave through this journey, but its time for him to go HOME. i truly belive he came into this world to inspire and show people how to be  caring loving compassionate human beings.

he's not in any pain, but he is on pain medication because it helps him relax and sleep. when the medication wears off he's able to speak to people fine. hopefully he'll be able to write a personal message later on.

please, please dont be sad, or sorry. i cant express how much love he has for you all. and since hes going HOME i know he will watch over each and every one of you, think of him as your personal angel because thats what he will be. 

i wish you all strenght and healing. and when your feeling down and out and it seems like theres no hope, please ask yourself what would kevin do?

and i promise you, you will get the strenght and motivation that you need.

 

love, brenda.

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sjl's picture
Replies 4
Last reply 9/23/2012 - 12:50pm
Replies by: NYKaren, Gene_S, Tim--MRF, Linny

Well, here I am again with more questions.  My husband is currently stage 3c mucosal melanoma and is responding exceptionally well to carbo/taxil.  Plus he feels good.  The doctor intially said it would have no durable response but after the first treatment they think there's a chance that it might just work for him.  Some of you have pointed out to me that all too often the response is only temporary.  So, what might plan B be?  He's been told that he can't have IL2, is BRAF and CKit negative, and can't do clinical trials because of a seconday primary lung cancer.  Yervoy was the one they were going to try but because his tumors were so extremely aggressive they went with the chemo to get things under control and then move on to something else.  I just checked our insurance company's formulary and Yervoy is not covered.  There is absolutely NO WAY that we can pay for it.  The expenses are hard enough as it is already.  Anyone have any luck getting the insurance to pay somehow?  We have PPO Blue - Highmark Blue Cross Blue/Shield.  If Yerovy is not an option then what in the world is left for my husband?  Initally they were going to do interferon and radiation but that plan went out the window when the tumors popped up overnight and took off like wild fire.  The radiologist who is treating the lung cancer mentioned that he may, at some point, radiate the neck area where the tumors popped up.  Honestly, I don't know how all of you good people handle this.  It's been 5 months and I'm still a basket case.  Thankfully, my husband is a "go with the flow" type of guy and is handling this far better than I.  I'm scared out of my mind but I try my darndest not to let him know. 

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lrkg1234's picture
Replies 3
Last reply 9/22/2012 - 7:45pm
Replies by: lrkg1234, Beth, Phil S

Hi,

My husband Scott was diagnosed a little over a month ago with stage 4 mucosal.  The cancer has spread to the liver, but not big time.  The source (primary) is the esophagus and it's inoperable.  

We found out that he was C-Kit positive and that there was a Dasatinib trial for C-kit patients going on 2 miles from our house at IU methodist in Indy. 

He started taking his pills Friday.  So far no side effects. Has anyone else tried this and how did it go?  How long do you think it takes to do anything?  They will do blood tests soon and then every 2 weeks. Scans will be every 6 weeks. 

He is so uncomfortable sometimes.  He is still working and carrying on as usual, but I know it's exhausting and painful at times. It's so hard to know this misery is going on and that I can't do anything to help.  He doesn't say anything about it but it's not hard to see.  I hope this stuff works!

For now he's just taking hydrocodone for pain and it works fairly well, but he's already getting used to it in just over a week.  Any suggestions??

Thanks, Lisa

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