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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manu000's picture
Replies 1
Last reply 8/5/2011 - 10:55am
Replies by: lhaley

Hello guys,

Yesterday my girlfriend made ​​a new resonance in the head, is very concerned, now should give you the results.
Tuesday (the day of the resonance) had some degree of fever, but the evening passed quickly.
However, begins to be very tired at any time of day, are the effects of fotemustine or the ipilumumab? or both?

The good news though is that three lymph nodes were visibly reduced almost disappeared.

 

ps.
thanks for the support you give me

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Anonymous's picture
Replies 2
Last reply 8/5/2011 - 9:35am
Replies by: mom3girlsFL, nickmac56

Question for folks with experience with clinical trials.  What affect does the existence of pre-existing health conditions have on your chances of being selected for inclusion in a clinical trial?  Random list:  Seizure disorder/epilepsy (monthly AEDs), pernicious anemia (an auto-immune disorder treated with monthly B12 injections), severe allergies, hypothyroidism, rheumatoid arthritis (also an auto-immune disorder), sub-clinical asthma

Color me just curious.  I currently have some of the items on that list, and it has been suggested I may have some of the others.  I'm very curious what affect these pre-existing existing conditions could have on any clinical trial I may want to be on in the future.   Yes, I realize a lot depends on both on how the clinical trial is designed and the type of drug being tested.  However, I'm looking for general experiences people have had to date.

I would be so disappointed to be prevented from being part of one because of a pre-existing condition.  And not just because of the lost treatment option.  This may sound corny, but I really, truly believe, deep in my heart of hearts, it is my Christian duty participate in any clinical trial I can.  I was so very disappointed when my oncologist told me there were no clinical trials available in our state for which I fit the criteria.  If I ever get a recurrence, I'll be transferring my care to one of the major melanoma centers, and I will be looking not just for treatment trials, but also for the trials that collect information, such as DNA, etc.  I really believe the only way we're ever going to beat this horrible, malicious disease is if everyone who can, does.  And when I'm gone, if they want my body or any portion of it for medical research, they're welcome to it.  (Yes, when the time comes, that will be a discussion I'll have with my medical team.)

Stage IIIb, 2 years NED

"A little ingenuity and a lot of duct tape will solve many problems.", AKC Agility Judges Guidelines

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Phil S's picture
Replies 8
Last reply 8/5/2011 - 9:13pm

While, the month of July proved to be challenging, when Phil's "routine" Pet/Cat and MRI scans at Dana Farber showed a lung nodule that turned out to be melanoma.  Just a quick recap, Phil's case is somewhat unique (mucosal, rectum) melanoma, and he had initial surgery in Feb 2010, then one year of interferon.  He did great on interferon, and we really felt it kept his aggressive melanoma (mucosal, deep primary, very high mitotic rate) at bay for the eighteen months he stayed at stage 3.  Others can disagree, and we will never know for sure, but two months after completing his year of interferon, the lung tumor was found.  Since, he was clean on all scans except for that one lung nodule, he had his right middle lobe removed on July 14th, and they got all the tumor and clean margins, no lymph node involvement. 

Phil is also Braf,C-kit, and HLA 02 negative, so future options are limited.  Stage IV NED, also limits clinical trial involvement, but we aren't complaining, thankful that surgery was an option.  We pushed for Leukine, and he is starting on Monday, praying that this drug can keep him stable for awhile.  We frequent this bulletin daily and get wonderful information and hope from all the people who share their experiences on this Board, especially Jerry (another stage IV mucosal melanoma case) who battles on, despite last year's fight with a horse.  Jerry is a true inspiration to us. 

We grieve with all those who have lost love ones to this disease.  We understand how everyone can and does feel sad, angry, scared, frustrated, disappointed, and hopeless when melanoma once again takes a front seat in their lives.  We truly emphasize with all the familes with young children (our kids are six and eight years old) and how fighting melanoma takes away part of their childhood, or at least part of the summer.  But, one thing I have learned in the past 18 months, is that people are resilient even children, and on a personal note, our kids are doing really well.  Phil is plugging along, lung surgery was fairly easy for him, and he is ready for the next step, hoping leukine boosts his immune system.  And, I have rallied too, after some dark moments especially at night, to again help my husband begin another battle with the beast.  Take Care!  Valerie (Phil's wife)

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DeniseK's picture
Replies 4
Last reply 8/5/2011 - 1:44pm

Hi all!!  I had a horrible night last night with pain in my neck, collarbone area, and shoulder.  You know the area right where you neck meets your shoulder.  Anyway, I was real close to  packing up and going to the ER.  I put some ice on it and it helped and took some pain relievers.  I woke up with what appeared to be a bruise in this area and tenderness but the deep pain was gone.  I think it may have been a muscle spasm but I've had this pain for a long time.  I've told my surgeon and Dr. Weber in San Fran but no one thinks it's related to the Melanoma due to the scans coming back clear. 

I go next week to the onco so I will definately tell him about the pain.

The pain is on the same side that my tumor was about 6 inches above.  I honestly don't think it's a coincidence.  What kind of scan is better than a PET?  Or is that the best? 

Has anyone else had this kind of pain/spasm in the area of their excision? 

Thanks everyone!!  Denise

 

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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arnie and sherry's picture
Replies 3
Last reply 8/5/2011 - 12:48am

my husband had gama knife end of june five brain mets, what can we do next?

keep on trucking

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Jydnew's picture
Replies 9
Last reply 8/5/2011 - 1:48pm

Hi,

I am so saddened by the recent posts on the board, and hope that my post can give a seed of hope to others who are facing their melanoma diagnoses. 

My husband had his last CT scan today at 1:00 and we got the results by 3:00 - No Evidence of Disease.  Thank you to the nurses, staff and doctors at the St. Luke's Hospital Cancer Center and the Imaging Center in Bethlehem for always going above and beyond for us.  For any of you in the Lehigh Valley, PA, or surrounding areas, I absolutely recommend this hospital.

Anyway, I just wanted to post the specifics of my husband's cancer and follow-up so that if someone is searching for a long-term survivor, they will find this post.  He was diagnosed Stage IIIA at age 26 back in January 2002, just a week after we returned from our honeymoon.  His lesion was 1.3 mm, Clarks level IV, not ulcerated - mitotic rate was not given back then...  It was on the tricep area of his right arm.  After the initial surgery to remove the mole, he had a wide excision and sentinel node biopsy.  Microscopic melanoma was found in 2 nodes - one had less than 2 mm deposit and the other had "not more than 10 loosely scattered cells."  Both were subcapsular.  He had a complete lymph node removal, no other interventions.  He had CT scans every 3 months for 2 years, every 6 months for 3 more years, and then every year since then.  He has bloodwork drawn every 6 months, visits his oncologist every 6 months and visits his dermatologist every 6 months.  He eats what he wants, but we rarely eat processed foods (not as a result of the cancer diagnosis, we just always have), he drinks lots of beer, he exercises regularly, and he gets a good nights' sleep.

Since 2002, he has earned a teaching certificate, a masters in education and has 5 years of teaching middle school under his belt.  We have traveled the country, have moved 5 times, bought a house, got 2 dogs, and have had 2 children, one who died before birth and one who was born prematurely at 28 weeks and is thriving at age 2.  There have been lots of ups and downs, but most importantly, there has been lots of living.

My best to you all in your journeys,

Wendy

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NYKaren's picture
Replies 4
Last reply 8/5/2011 - 11:06am

Hi,

Last night I woke up with a 101.4 fever.  Shivering, the whole bit.  My normal temp is 97.8 - 98.  I called Dr. Wolchuk's office today and the nurse said to call if it gets that high again and I'd talk with the fellow (I think Wolchuk's out of town??) about what to do...don't even take tylenol until I call.  Also, my whole body aches.

Ayone experience this?

 

Many thanks,

karen

Don't Stop Believing

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mom3girlsFL's picture
Replies 8
Last reply 8/5/2011 - 9:24am

I am just going to ramble, so if you've even opened this post...I am a mess.

I have nothing to complain about.  I dealt with the beast most of last year, but since PET, nov 2010,  I have been okay.  A CT of abdomen and pelvis in March was clear also. What is my problem?  I NEED to be here - I have a 12 yr old special needs daughter who requires full time care and 2 younger girls who are amazing and beautiful.  I have a wonderful, supportive husband and a great extended family.

My last derm appt (july) was perfect, not one thing taken and/or frozen off.  My next onc appt is at the end of this month.  Probably a scan due.  Okay, maybe scanxiety, but...no.  Maybe feeling sketchy about the "watch and wait" approach? No, don't think so.  Then, WTH???!!!

I think maybe I just might be pissed off.  Angry that we've lost such an amazing warrior in Eric.  Angry that one post talks about hospice and the next post is a clean scan.  Angry that the beast does not discriminate, does not follow "rules"....it is a roller coaster ride that never quite reaches the drop off point - just keeps you hanging, awaiting your fate.  IT'S NOT FAIR!!!

I hate feeling like I can conquer the world one day and wonder if I'll be able to conquer the world the next day.  I hate pretending that everything is back to normal, when in realtiy it not always is.  I hate complaining when others are dealing with such heavy loads.  I hate knowing I've been there, I know.  I hate feeling grateful I'm not there now.  I hate that my young children had to go through a living hell last year.  I hate that I am not prepared to deal with a fight again if necessary.  I hate being emotionally exhausted.

Mostly, I hate posting this.  This is me.

Laurie

Do not fear tomorrow, God is already there.

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Lisa13's picture
Replies 8
Last reply 8/4/2011 - 10:27pm

Just came back from all the screening for the ipi (yervoy) clinical trial I'm starting next week. My brain is clear!!  This is VERY good news since the last time my brain was scanned was mid February! 

I may have small mets to my lungs, but I'm going to enjoy this day because it's a good day!

Best wishes and prayers to you all,

Lisa

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

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nickmac56's picture
Replies 7
Last reply 8/4/2011 - 8:16am

My wife and I went in for her MRI brain scan results today, Bad news. She has six new brain mets. So that pretty much rules out any trials of any sort. Or a standard course of IL-2 (the only non-clinical trial drug she could go on - after having already tried Ipi). With active extracranial disease (lungs and who else knows where by now) and very active central nervous system disease, it's all right now about trying to buy time. We meet tomorrow with the radiation oncologist - it's either gamma knife or whole brain radiation. They are spread all over - and we have to assume there are more lurking. We'll see what onc recommends. We are game to do the WBRT - our doc said any dementia side effects would kick in long after she is gone - so it's worth it to try to buy some time. She's already lost her hair from the Cyberknife so that's no big deal. She is definitely bothered by the probable side effects of short term memory deficits, but it beats the alternative. She will continue on the Temodar and may switch to Taxol in a month if it looks like it's not doing anything.

The hardest thing we've had to deal with today is expectations around life expectancy. Since she's suffered some cognitive deficits as a result of her stroke, it's been hard to get her to understand. She gets that she won't get through this; she does want the time to get her final projects done (the letters to the boys when they get married, have kids). But she doesn't want the pressure - which is kind of unavoidable. 

Despite a very sad, emptional and teary day - she is a remarkable woman who is showing tremendous grace under all this stress. She is very loved by a very broad and deep community of friends and family who will support her on this leg of her journey. I just wish there was a different path...

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Ranisa's picture
Replies 5
Last reply 8/4/2011 - 7:35am

I know that with the lose of Eric she could sure use the extra prayers right now! 

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Becky C.'s picture
Replies 5
Last reply 8/4/2011 - 12:53pm

Hello. I have been reading on this forum for awhile now and there seem to be some very knowledgable people here.  I was diagnosed last month. I had a mole removed from my right foot that came back a superficial spreading melanoma, Breslow depth 1.57, no ulceration, mitosis was high at 18, biopsy showed no vascular or lymphatic invasion, margins were clear. I then had my WLE and SLNB. Surgeon did a graft on my foot which is doing great, two nodes removed, sentinel node had microscopic cancer cells, second node was clear. Naturally, this has been the scariest thing I have ever faced.  I have done lots of reading, probably too much.  I am having rest of nodes taken out next week. My oncologist really expects them to be clear. Also had CT scan, it was clear. One of the fears I have is of cancer cells getting in the bloodstream. My oncologist said that the cells seek out the lymphatics. Everything I have read says the same thing. From what I have read, thicker lesions are the most likely to penetrate the bloodstream. Does anyone have good information about how often this happens. My oncologist also said, when i asked about recurrence, that it does not recur very often. My doctor came very highly recommended, and he has given me a good outlook.  Also, I am concerned about lymphadema. Has anyone had an experience with this in their leg. I would greatly appreciate any feedback.

 

Thanks

BeckyC. 

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EricNJill's picture
Replies 60
Last reply 8/31/2011 - 10:06pm

At 12:12 a.m. Eric is now an angel in heaven.  My heart is broken.  Now that Eric is finally at peace, my battle is just beginning.  Please pray for God to give me strength.  Eric is my hero, my soulmate and now my angel.  I love you forever, Eric.

JillNEric in OH

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I am curious if anybody has participated in these trials at NIH?  Dave could not qualify at this time for the TIL and TBI trial due to the surgery being too risky to harvest the tumor.  If he progresses and there is disease that is resectable, then he could.  These were two other options presented to us if his tumor shows either of these expressions.

Any info would be greatly appreciated!!

Maria

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Julie in SoCal's picture
Replies 1
Last reply 8/2/2011 - 11:10pm
Replies by: mombase

Dear Friends,

I'm just posting to say hey and that I'm now 3 years NED.  There were days I didn't think I'd get this far, but thanks to God's care and good doctors, I'm in mainland Southeast Asia (mostly Thailand & Cambodia) doing dissertation research. Whowuddathunkit!?!

I don't post often but as often as I can I read and try and keep up with you all on this board-- saddened to hear of a warrior's passing and rejoicing with each clear scan.  You all have been a great source of information and realistic encouragement to me!  I'm grateful!

Here's wishing NED to you all!

Blessings

Julie in So Cal

3A, primary on back of hand,

SNB, LND, HD INF, 11 mos  GM-CSF.

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PEMBRO.

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