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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Wally's picture
Replies 16
Last reply 7/27/2012 - 2:01am
Replies by: Wally, Anonymous, Tina D, Harry in Fair Oaks, Janner
I have had a follow-up scan (the first since my RML Lobectomy in April 2011) and it highlights a possible malignant tumour in lower part my right lung. It also highlighted a suspiscious growth on the side of my face, just ahead of my ear on the jawbone. Had needle biopsy yesterday to establish status. Lung tumour will be surgically removed IDC. If the face thing proves to be possitive they intend applying a drug called Ipilimumab and/or Interferan (not Chemo or radiation as apparently that is not effective against Melenoma). Should get results of Biopsy by Thursday or Friday. It appears this is the cause of the pain in my chest - hard to believe because my understanding is that Melanoma is painless.
Is this the right treatment?
Thank you all for your valuable input, much appreciated.
Kindest regards to all the worriors
Wally
The sun shines at the dawn of each new day even though it may not always be visible.

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Anonymous's picture
Anonymous
Replies 0

This was on the path report from my recent WLE, which I just got in the mail.  It says "reactive melanocytosis above area of prior scar, completely removed."  Does anyone know what this means? Is it a common finding on a path report after a prior biopsy? Thanks for any info you could share.

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awillett1991's picture
Replies 1
Last reply 7/26/2012 - 7:15pm
Replies by: gabsound

Stumbled across this and found it useful in explaining where we are in determining which to go with in what order. Pretty easy to read. So many unknowns still but having options is a good thing!

http://www.asco.org/ASCOv2/Home/Education%20&%20Training/Educational%20B...

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sjl's picture
Replies 5
Last reply 7/26/2012 - 9:12am
Replies by: Anonymous, sjl, Angelica Camargo

Well, I'm new to the group.  I've been searching and reading this board for awhile and decided to seek out some help.  My husband was diagnosed with malignant melanoma of the nasal cavity (mucosal) in April following a biopsy after surgery for what they thought was an inverted papilloma and no big deal.  In May, he had another surgery to remove more of the nasal cavity melanoma as well as several lymph nodes, one of which tested positive.  A nodule also showed on one lung but they originally were just going to keep an eye on it because it is small and is a fairly common finding in the general population.  After bouncing around from place to place, other doctors suspected that it was cancer and a Pet Scan was finally approved.  It showed up as cancer on the scan.  Now, because they don't know if it's a spread of the melanoma or a primary lung cancer, we are waiting for a biopsy (scheduled for next week) to determine the type before having surgery done to remove it.   If it's melanoma, they will remove the nodule only.  If it's primary lung cancer, they will remove the lobe.  They suspect primary non small cell lung cancer.   Meanwhile, a hole opened up through the nostril near the surgical incision and we are headed back to the doctor tomorrow to get that checked.  Radiation is expected, but not until they do the lung surgery, and now not until the nose is taken care of.  Chemo has been mentioned, specifically interferon for a year, subject to change depending on the biopsy results of the lung.  He's been given an 80% chance on the lung cancer alone if it's a primary and if not, a 50% chance overall.  I've asked about Gleevec if the melanoma is cKit positive and about BRAF but the doctors have no answers yet.  Yervay has been mentioned to me by someone as something to look into.  So, here we are, two months post diagnosis, with no treatment plan and time is ticking away.  I understand that they have a lot to figure out and now the hole in the nose just complicates things even more.  I'm tired, frustrated, scared, the whole nine yards.  Trying to keep track of multiple appointments each week across a two hour drive is nearly a full time job, as I'm sure all of you are very much aware of.  I'm trying to handle all of this while holding on to two part time jobs, which I need desperately right now, but I'm sure all of you have your own similar situations so this is not meant to be a whine.  I'll just have to deal with it like everyone else in this boat.  What I'm very much concerned about is the delay in treatment for my husband.  I'm so afraid that this monster will rear up and take charge because we can't get the treatments started.  How do any of you feel about the delay?  I'm waiting for a call back from one of the doctors about my concerns over this but have heard nothing yet.  Anyone on this board with this type of cancer?  It's so rare and the few messages I've found elsewhere are a couple of years old.  Current information is very difficult to find.  I'm grasping at straws trying to find anything encouraging.  Sorry it's such a long post.  I thought I'd give the full story in hopes that someone here may be able to shed some more light on things for me.  it's such a shock. 

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Eileen L's picture
Replies 8
Last reply 7/26/2012 - 1:27am
Replies by: Eileen L, Harry in Fair Oaks, King, Jeff's Mom, Anonymous

Hi, folks. Just a quick update on what I am experiencing on the Hoffman-Roche BRAF/MEK trial. I had PET/CT about two weeks ago that basically showed my two tumors, one lung and one adrenal gland, had an overall 50% reduction in mass and are in no longer reactive. The radiologist thinks the remaining tumor might be just dead tissue. This is after only six weeks on the drug combo! Also, almost all of the side effects (rash on my legs, trunk, arms and face, joint pains, fever and chills, sores in my mouth, fatigue, sore feet and fingers) are gone except for the sun sensitivity. I just developed a new mild rash about a  week ago  on my abdomen that appeared during the week that I wasn't on MEK (this trial has me on the BRAF all the time and the MEK 3 weeks on, one week off) which resolved when I went back on the MEK.  

I am extremely pleased with the results! The biggest problem has been the number of appointments I have had. Since it is a Phase I trial they are keeping very close tabs of us at the beginning, with weekly lab draws, EKGs, doctor's appointments, etc. Now that I have been in the trial for eight weeks I go to monthly appointments, lab draws, and EKGs, and every six week PET/CT scans. I expect to soon glow in the dark from all the scans! 

Eileen L

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momof2kids's picture
Replies 18
Last reply 7/25/2012 - 7:46pm

I know many out there have never had any Brain Tumors, but others of us, like myself, have had Brain Tumors (One removed via Craniotimy , the other removed via Gamma Knife).

I'm assuming that having Brain Tumors/had Brain Tumors is worse than those out there who have never had any Brain Tumors.  Are getting Brain Tumors as easy to get as other tumors in your organs/body parts, or is it tougher for the cancer to travel to the brain, so if you are lucky enough to never get Brain Tumors, you're a lucky one, etc?

Are there any reports/data out there that proves having Brain Tumors in the past, or currently, that we are less likely to survive, than those out there who have never had Brain Tumors?  I'm assuming there is, but I'm still just stuck on this end of life rut I'm stuck in, wondering how many years I have left if I'm lucky, and if no new Brain Tumors come back to haunt me again.

I'm just not ready to accept living everyday happy as can be, happy to be on this earth, I'm still stuck in this I'm going to die before I'm 40 unless I'm extremely lucky.

I know there's plenty of Stage IV survivors out there, but did many of them have Brain Tumors, or were they the lucky ones to only have regular body tumors, and never touched the Brain?  I know none of us have control over how long we're here, but I am hoping that mine will be 10+ years, just to see my kids grow up, but I don't feel that the treatments out there will give me that (I'm BRAF negative, so right there I lose a few treatments/drugs).

 

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LynnLuc's picture
Replies 5
Last reply 7/25/2012 - 1:30pm

This is Brandon, and I am passing along what information we have right now. The two tumors that mom had radiation on a few weeks ago are bleeding, and that is the reason she is in the hospital. She is doing better, but information seems to be much slower coming from the doctors than before. She is going to have another scan to determine if the bleeding has subsided, but we do not know when. It will be within the next day or two. The first scan she had yesterday did reveal two new tumors in her brain. As of now, I know nothing more about those. I will be posting for the time being as the computer is proving to be frustrating for her (it's not exactly in the best of shape). I will pass along information as I recieve it

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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himynameiskevin's picture
Replies 18
Last reply 7/25/2012 - 1:21pm

This was yesterday's update... http://www.melanoma.org/community/mpip-melanoma-patients-information-pag...

I sent a few emails out for advice or trial options. One doctor replied to my email, he suggests to stop the Zelboraf, have the radiation oncologist address any growing lesions in my head, and then resume IL2 with or without Zelboraf. (after the break during radiation).

I did IL2 in September of 2010, my first therapy. I  tolerated it well, 14bags, and 9 bags. And although it wasn't my magic bullet, it did appear to get rid of the tumor in my liver. Maybe another round after every thing else I've done could be beneficial? Not sure if people ever have any luck trying IL2 more than once? Or doing IL2 while on Zelboraf?

Just want to see if any of you have any advice or insight on this. I truly trust this Doctor, he's been my guy since day one. But you've all been there since day one too, so your opinions are just as important. Any advice or insight would be appreciated.

-Kevin

 

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bikerwife's picture
Replies 2
Last reply 7/25/2012 - 12:11am
Replies by: James from Sydney, Anonymous

Has anyone had gamma knife more than once. We had it in feb for 5 mets and they are gone. We have 2 new ones that will be gamma knifed on aug 13and I'm scared of having this procedure done again. Our dr told me to stop worrying that they got them the first time and can get them again. I do feel kinda at ease about.

Also he's still taking zelobraf which is working wonderful all tumors we could see are almost gone. Why doesn't it work in brain.

Thanks for the help

What God leads u to he will. Lead you through

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Sherron's picture
Replies 4
Last reply 7/24/2012 - 9:02pm

Thinking of her, praying for her, and sending her hugs!

Take Care,

 

Sherron, wife to Jim FOREVER

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himynameiskevin's picture
Replies 12
Last reply 7/24/2012 - 4:27pm

Well this morning marks two years since being/knowing I was stage IV. A long journey it's been, and this mornings brain MRI has me feeling a little like I did two years ago. The images show some new tumors, there were a few tiny areas that were left untreated when I started Zelboraf. So maybe those, maybe a couple more? Radiation oncologist is going to get all the details out of the scans to have all the info possible come Wednesday morning, when I see her again, to discuss the options and treatment. I'm guessing more SRS or trying WBR for the first time, I don't know. She said they were small though, none over a cm. And told me not to lose sleep over it. I won't, I'm experencing a sense of calm, not sure what to make of that.

Anyway, I should have PETCT soon, not sure the protocol from here, if they're just going to take me off Zelboraf or if there are any options left. I may be out of the loop, I know most trials won't accept someone with brain mets. Despite the status of my head, I feel close to normal, no noticible strange neurological symptoms. If anyone knows something new I'm unaware of, I'd like to know. I've done IL-2, Adoptive Cell Therapy with young TIL and IL-2, a few rounds of SRS, Yervoy, and Zelboraf. Thanks in advance.

Warmly, -Kevin

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Thinking of her, praying for her, and sending her hugs!

Take Care,

 

Sherron, wife to Jim FOREVER

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Wally's picture
Replies 10
Last reply 7/24/2012 - 10:31am
Replies by: Wally, Lilbrat, Minnesota

I had an in-situ malignant mole removed from my ear in 1006 and this progressed to my RML resulting in a Lobectomy in 4/11. Following this op I experienced continious pain in my chest - rib area. This was ascribed to nerve regeneration so no further action taken. My 4 monthly check-ups were of little consequence with only a Mel blood count taken, which showed low count and an NED dianosis. Of late I have had severe body aches starting at my hips to my legs and also my shoulders and hands. Felt much like arthritis or gout, I suppose. Walking became difficult. My GP brushed this off as old age. My Oncologist was a little more supportive and suggested some X-rays. These have indicate a possible Pleural Effusion.

My question is - are these the typical symptoms of a pleural effusion and what are the chances of this being a malignant effusion?

if the result is possitive (I go for a pet scan on 18/7 to determine the extent of this finding) what is the process. The Oncologist did not discuss any of this with me, sauying lets wait and see what ther outcome is first. I find this difficult as I need to prepare myself for variable possbilities.

Can anyone out there please  help me with answers as it is a long wait to 18/7. Best regards to all and may you all experience speedy recoveries. Wally from RSA.

The sun shines at the dawn of each new day even though it may not always be visible.

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LilithFaith's picture
Replies 29
Last reply 7/24/2012 - 7:47am

My mother, Tracy Lee, stage 4 melanoma lost to a long hard fought battle of her cancer today at 12:12. Without everybody's prayers the medication she was on, BRAF starting in August, she would not have made it to Christmas. I am her daughter and she is also survived by her husband Neil and my siblings Bailey, 21, chandler, 19, myself, 16, Kalla, 14, and her granddaughter Stella. Thanks to the people across the country praying for her and active people on this board who gave her hope through her battle. She is in a much more peacful place.

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

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LynnLuc's picture
Replies 11
Last reply 7/24/2012 - 1:59am
 Asking prayer for Linda Protas Haley ..she posted this at 747 AM---"we come home from the beach. I've lost some of me speach and type spelling! He husband is tacking his speaking and taking his shower.Then he are going to the hipital to hours from here. I hate this diseash! Harent told family so not post post ofram fb. ugh.................. hope you get hopre this. This only is just a jf hours! jeen pranayers"
Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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