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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ElaineLinn's picture
Replies 6
Last reply 3/21/2016 - 2:06am

This battle began about 3 years ago, my first bout with melanoma was a mole on my back that my family dr. said was nothing and one day when he wasn't busy we would remove it. But in the mean time 3 months down the road I was having surgery to remove a nodule on my voice box, My ENT dr. saw the mole and asked me if he could remove it while he had me under working on my voice box and of course I said yes. 2 days later  this Dr calls me to come in for the TALK . I was sure I had throat cancer, but what he told me even shocked me worse. The mole was Melanoma and I had to have the wide extraction. He sends me straight from there to James Cancer Center in Columbus Ohio for the wide extraction. This surgery went fine, but it was in a bad place on my back and would not heal. I just knew something was wrong but no one would listen. 1 year later I had a hymnodies swell in my neck, AGAIN my family Dr. said it was nothing just caused from and infection. I let it go for about 6 months until it became almost impossible to move my left arm and decided to take a trip to quick care, and this dr. is the one to inform me that my cancer had spread to the hymnodies. Back to James Cancer Center for another surgery to remove the tumor and all surrounding nodes. Dr. Agnes removed 48 nodes and only 1  checked out for Melanoma, on to the oncology for Leukine treatments. After 5 months of treatments all was going so good [or so I thought] I was getting my strength back and was moving my arm very well. But yet again a routine trip to a NEW family Dr. because of kidney stone symptoms, he order a CT scan of the abdomen where they accidently got part of my lower lung and found 2  spots on my lung. This lead to a CT scan of my full lung that show 15 spots on my lungs. I was really floored. But once again back to Dr. Agnes who tells me that it is in operably because of the number of spots, so the next meeting was with my oncology Dr. Kendra , and we decide to try the IPI infusion. I had my first treatment on Feb. 4th , no side effects other than itchy skin which I can deal with. But I must admit I am VERY scared because I have been told that this drug only works in 20 out of 100 people. I am a mother of 4 adult children and  have 7 grandkids, which I have had custody of 3 of them for over a year.  I want to be around to raise these little ones, but I am not sure I made the right choice in treatments.

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katiebird's picture
Replies 5
Last reply 2/17/2012 - 4:09pm
Replies by: ElaineLinn, katiebird

It's been a while but I'm back with a question. My primary was Stage 1B  on my left thigh in the summer of 08. SNB and WLE were both all clear and I've had clear check ups regularly since then other than one spot on my left calf that required just removing the skin around the site to be safe. Can't remember now what that procedure is called!

Fast forward to a month ago, I noticed a small lump right below my left jaw bone. At first I thought it was a pimple but it never really went away. The nurse at the school I work at checked and said it was a swollen lymph node. I'm sure I've had swollen lymph nodes before but I've never known it. This has been over a month now and I'm wondering if it's something worth getting checked out, and if so by whom? Do I go to my PCP or my dermatologist? I'm sure it's something totally unrelated to my melanoma but that thought is always lingering in the back of my  mind.

Thanks

Kate

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Lisa13's picture
Replies 6
Last reply 2/20/2012 - 2:38pm
Replies by: Maxximom, kylez, Anonymous, boot2aboot, LynnLuc, WendyPam

I'm starting ipi again on Friday - has anyone heard of the percentage of numbers for reinduction?  I've heard they're better used by responders, but I just have no idea.  There seems to be many different numbers, so it's hard to understand what it could be.  Half the time, I can't understand why a medicine wouldn't work if it worked before, but nobody seems to know this clinical drug very well.

Also, where in the U.S. are they having the cinical trial for Anti PD1 - Bristol Meyers? Apparently this one has been doing very well, but there isn't alot of these out there.  So confusing!  In Canada, we'll have Anti PD-1 (Merck) in 2 months, but I'm not even sure if this is going to be as good. 

One last thing, my Dr talked about a new clinical trial for brain mets coming available, so when I here about this, I'll be letting you all know.

Lisa

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

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Angela C's picture
Replies 6
Last reply 2/17/2012 - 4:38pm
Replies by: boot2aboot, Angela C, LynnLuc, Rebecca and Bob, Anonymous

Hi there.

I have an adrenal tumor and a tumor next to the pancreas that need to be removed surgically since I have failed IL2, MDX-1106 and Yervoy. It's been decided to try and get into the TIL trial.

My doctors office contacted NCI today and I an waiting to hear from them on what information I need to send. I'm just wondering how long it has taken others to get in for a consult? We as patients always want things done yesterday. :) I'm just concerned how long it might take for me to get everything compiled and sent and then how long it will take got them to get me scheduled. Every day we wait us another say these tumors are growing and becoming harder to remove surgically.

Also, do you know if they will remove just part of a tumor for TIL if they are unable to remove the whole thing?

Thanks!!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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walesgirl's picture
Replies 4
Last reply 2/14/2012 - 8:41pm
Replies by: scots, Sherron, SoCalDave

Greetings comrades and Happy Valentine's Day!

I will be meeting with a radiologist on Friday to discuss local treatment to an area on my scalp where 'my' primary and local recurrence were located...

anyone have any experience with scalp (as opposed to brain) radiation treatments? Could I lose ALL of my hair, or only that in the general area...I'm just not sure if what I read is applicable to radiiation to the skin, as opposed to deeper tissue...of course, I'll learn much from the physician, but just curious...thanks so much and enjoy this day!!! 

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Anonymous's picture
Anonymous
Replies 12
Last reply 9/10/2012 - 6:27pm

Hi, new here and looking for some info, input, people's 2cents etc.  As you can see below, I have quite a few questions!

my husband was diagnosed with melanoma just over a month ago.  Clark level II, Breslow 0.19mm  so pretty small.  But it is on his face... so they have done a wide excision biopsy and skin graft.  Healing well.   The pathology came back a few days ago saying that the wide excision biopsy has no evidence of residual in situ or malignant melanoma.  However, they didn't do a sentinel lymph node biopsy because it is on his face... so we don't actually know whether or not there is any cancer in his lymph nodes.

However, we just got a call from our local cancer centre saying that the radiation oncologist wants to meet with him... no other information.  So as I now sit around wondering...

Does anybody have any input or info about a similar type/stage of melanoma?  what is normally done for treament if the wide exision biopsy comes back clear? from what I read online, it should just be done with now (aside from long term monitoring), so I am really confused about this oncologist appointment... Has anyone here had radiation therapy for melanoma?

 

thanks a bunch!

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Maxximom's picture
Replies 19
Last reply 2/19/2012 - 5:28pm

Well my adventure into the Brave New World of Melanoma started yesterday with my first Ippi treatment in Columbus at the James Cancer Center at OSU. Any hints at what to expect or any suggestions would be appreciated.The infusion went fine..so far no side effects.. but then it's only been less than 24 hours. Keeping my fingers crossed that this will work and the side effect will be at a minimum. Happy Valebtines day to All of you

Joan

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natasha's picture
Replies 2
Last reply 2/14/2012 - 9:27pm
Replies by: Mike N, aldakota22

HAPPY VALENTINE'S DAY !!!!!!!   WISH YOU A LOT OF LOVE AND HAPPINESS !!

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Anonymous's picture
Replies 3
Last reply 2/15/2012 - 9:03pm
Replies by: runnergirl, Richard_K

Is there an issue with this feature? 

I now receive a message about ' this page is under construction or not available...'?

Luke 1:37

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Roxy1453's picture
Replies 3
Last reply 2/14/2012 - 6:18pm
Replies by: Roxy1453, kylez, Linny

I haven't posted for awhile so I thought I would fill you in. I had a pet scan 2 weeks ago. It did not show any new spots but the one I have showed brighter. It also showed that my colitis was not gone. So I didn't have my third IPI treatment and I'm staying on the steroids. I went in again this past Fri. And will be staying on the steroids for 3 more weeks.

He told me that the IPI has ramped up my immune system with just the 2 treatments and that if I got more it would just creat more problems. He stopped short of saying it was kicking the cancer. It's too soon to know. It's just good to know it has been ramped up.

I pray for healing for all of us, stay strong!

Nancy

"I can do all things through Christ who strengthens me." Philippians 4:13

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Jydnew's picture
Replies 6
Last reply 2/15/2012 - 8:43pm
Replies by: CLPrice31, Leigh, Mike N, natasha, Anonymous, gtown

Hi,

My husband just returned from his oncologist and remains NED 10 years after being diagnosed at stage IIIA.  He had his last CT scan in August, and continues with annual chest x-rays and semi-annual bloodwork.  He was originally dx in January 2002 with a 1.3mm depth melanoma on the right tricep area.  There were micromets in 1 or 2 nodes (I can't quite tell from the path report).  He opted for no further interventions after surgery to remove the rest of the lymph nodes in his armpit.  He is now 36.

I hope for NED for everyone on this board, and wish daily for a cure for this horrible disease.

Wendy

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aldakota22's picture
Replies 7
Last reply 2/18/2012 - 4:29pm

  I am diagnosed with stage 4 melanoma. since last feb. Have been on Zelboraf since sept.12, 2011. Drug is working remarkably. no noticeable tumors on neck.Have had side effects but can live with them.Have a weight loss from 212 down to 196 and steady. Body was firm at start but is now a little flabby.Would love to weight lift to firm up stomach and legs especially.has anyone done this before.Any down side if done with caution and moderation. Would like your input from those who have been thru this.Thanks

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Replies by: Lisa13, Alicia15

For those who've had brain mets (more than 2) and are still living live 1,2, 3 + years later, I'd really love to know what the reasoning of this could be and the treatment that may have helped.  One woman had 3 and that was 5 years ago and another amazing woman had 15 and that's been 2.5 years! !   I know some tumours keep coming and then stop, or others just keep coming and don't stop.  I know there is hope though, but I supposed I need to understand it a bit.

I had 2 brain mets and then got followed up after 8 weeks and found 2 more - very small and nothing more found in my brain (less than 0.5mm) from the brain mri.   I'll be going every 8 weeks to keep tabs on them which I believe is the best thing possible as well as gamma knife.

Lisa

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

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o2bcheri's picture
Replies 5
Last reply 4/17/2012 - 7:30am

 

 

has anyone heard of Cellect?  or tried it?? 

 

been doing a lot of research for my best friend and daughter....

 

check it out... interesting at the least... 

 

http://checkmedaily.com/health-beauty/diagnosed-no-evidence-of-cancer-tr...

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mlbjab's picture
Replies 18
Last reply 7/8/2012 - 11:28pm

A high school classmate of mine was just diagnosed with stage IV melanoma after having a fairly shallow melanoma removed almost 5 yrs ago with negative SNB.  He had GI issues and tests were run that showed the melanoma is in liver, lung and adrenal glands.  He chose hospice and no treatment.  Is there not a treatment or hope for him?  I know it is his choice, but if there is any chance??  He is young (30s) and has children and a wife. 

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