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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LynnLuc's picture
Replies 1
Last reply 1/28/2012 - 9:20am
Replies by: Laurie from maine

Finally...I added a simple page to update my website letting folks I am still alive! I am working on a new website ( same name) gentlewinds . org

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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bs010kbb's picture
Replies 12
Last reply 1/27/2012 - 8:41pm

Quick update, I started Interferon in September after having a full groin dissection on my left leg and a small mass in the upper left thigh muscle. I made it through December....had all side effects known and scans were updated in December showing disease back in thigh muscle deep in the muscle again but local to the prior area. Prepared myself for another resection with the surgeon recommending radiation. Surgery was to be tomorrow but has been postponed for now. While waiting for surgery, I received another opinion on radiation; however that developed into so much more. Without disclosing where I went, both hospitals are top eight with one being ranked within the top two....regardless, I now have three opinions. The two new hospitals say don't repeat surgery...surgeon will never get it all as I am too high of a risk. One hospital wishes to place me on Yervoy and the other wishes to place me on BRAF.....again, both opposed to surgery. My oncologist wants me to proceed with surgery and reserve the drugs. I also spoke with the Director of my hospital and he feels that there is such a small window for surgery options that if I am still in that criteria I should consider that first. He feels the drugs are so new and while there are some responders, he felt most testing on these drugs was with disease that spread beyond options for surgery. He said what we do know is that surgery has always been the thought of melanoma treatment and while we can resect, resect. The top hospitals feel the drugs potentially could keep me NED for longer......thoughts, PLEASE...Keep in mind prior surgery was just in June and I was only NED for 6 months,

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ctiffany98's picture
Replies 4
Last reply 1/27/2012 - 12:46am
Replies by: Ali, scots, DebbieH, fdess056

Hi,

 

My husband last year was diagonised with Stage IIIA Melonoma and the treatment plan for the last 40 weeks has been interferon shots 3 times a week. Since he is finally finished in three weeks with this treatment he is very concerned with what damage this medication will have on him long term. How long does the Fatigue, stomach pains, and muscle aches last after he is completed with the shots? Any insight anyone would have would be greatly appericated it.

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mrsmarilyn's picture
Replies 5
Last reply 1/27/2012 - 12:17am

Hello-After nine years of battle and almost two years of GSK Braf and Braf/MEK, a gigantic tumor has lodged in the humerous, shoulder, and all surrounding muscle.  Went to an ocology orthapedic today and  arm/ shoulder amputation was recommend for my brother.  We are devistated and wonder if anyone has any other ideas.  The surgeon recommended this take place next week.  Looking for alternatives or support from anyone else who had to go through this procedure.  thank you.

MrsMarilyn

Sister of Gary stage IV since 2003

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Kellie-T's picture
Replies 0

I'm going to start taking the 8 pills a day and would like to hear what side effects those taking this drug have experienced. If you aren't experiencing severe side effects I would like to hear from you too.

Life is not by accident. Make every minute count.

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Kellie-T's picture
Replies 0

I'm going to start taking the 8 pills a day and would like to hear what side effects those taking this drug have experienced. If you aren't experiencing severe side effects I would like to hear from you too.

Life is not by accident. Make every minute count.

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CCarolina's picture
Replies 7
Last reply 1/26/2012 - 4:47pm

Hi everyone,

I am probably just being paranoid, but I recently had two mole biopsies, and one came back as severely atypical and the other one came back as moderately atypical.  Last time (5 years ago) I had a moderately atypical mole my dermotologist re-excised the punch biopsy.  This time I only had a shave biospy, but this derm only wants to conservatively excise the severely atypical mole (1mm) and not do anything with the moderate one (which is on my back where I can't see it).  In addition, from what I can tell from the pathology report (thanks to everyone who posted on this blog, I realized it was somethingIi should request tosee!) it looks like the pathologist couldn't for sure rule out melanoma.  Anyway, I was just wondering if times have changed and my new dermotologist's stance is the new normal treatment for severe and moderate atypia?

Here's what the pathology report says:

1.  Junctional Lentiginous dyspastic nevus with severe atypia.  There is a junctional and lentiginious poliferation of melanocytes with a marked degree of melanocytic aytipia.  There are occasional small microtheques.  Individual cells focally extend upward into the epidermis as single cells in a pagetoid pattern.  The underlying dermis has fibroplasia and lymphocytic host reponse.  There are scattered macrophanges.  This pattern borders on early evolving melanoma in situ but is not diagnostic in this specimen.  There is fibroses in this nevus so that it is difficult to determine whether some of the atypia is related to the dysplaia or whether some of these changes may represent a recurrant or persistant nevus effect in a previously traumatized melancytic nevus.  The margin sin these sections are so close to the lesion that I cannot assure you that the lesion is removed.

2.  Dysplastic compound nevus with moderate melancytic atypia.  Melanocytes are present at the junction and within the dermis.  There is an aberrant architecture with associate stromal fibroplasi and a lymphocytic host response.  Upward growth of single cells is not conspicuous but there is moderate atypia of the melancytic cells.  The margin is sufficiently close that I cannot assure oyu that the lesion is removed.

Anyway, I am probably just being paranoid, but I would appreciate any advice you can give!

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Replies by: lyndaloo, Gene_S, LynnLuc

My husband had his third round of ipi (3mg) three weeks ago and his eyesight became increasingly bad with headaches. When he became nauseous I took him to emerg and they did a cat scan and mri. Today we found out the drug caused brain swelling because he had some tumors that were radiated in August (near his ocular vision) and the drug irritated the tumors and caused edema. There was a lot of edema but now the steriods have taken down the brain swelling. This was a scary two weeks not knowing if the tumors had become active or if more disease had occurred. Today the doctors were happy to report that his tumor burden has decreased by 2/3rds. The edema has cleared up enough to get the 4th and final dose of ipi. All his skin tumors have disappeared. We are so happy that he is able to get the fourth dose of ipi as he is responding to this drug amazingly well.

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Hi everyone,

I am probably just being paranoid, but I recently had two mole biopsies, and one came back as severely atypical and the other one came back as moderately atypical.  Last time (5 years ago) I had a moderately atypical mole my dermotologist re-excised the punch biopsy.  This time I only had a shave biospy, but this derm only wants to conservatively excise the severely atypical mole (1mm) and not do anything with the moderate one (which is on my back where I can't see it).  In addition, from what I can tell from the pathology report (thanks to everyone who posted on this blog, I realized it was somethingIi should request tosee!) it looks like the pathologist couldn't for sure rule out melanoma.  Anyway, I was just wondering if times have changed and my new dermotologist's stance is the new normal treatment for severe and moderate atypia?

Here's what the pathology report says:

1.  Junctional Lentiginous dyspastic nevus with severe atypia.  There is a junctional and lentiginious poliferation of melanocytes with a marked degree of melanocytic aytipia.  There are occasional small microtheques.  Individual cells focally extend upward into the epidermis as single cells in a pagetoid pattern.  The underlying dermis has fibroplasia and lymphocytic host reponse.  There are scattered macrophanges.  This pattern borders on early evolving melanoma in situ but is not diagnostic in this specimen.  There is fibroses in this nevus so that it is difficult to determine whether some of the atypia is related to the dysplaia or whether some of these changes may represent a recurrant or persistant nevus effect in a previously traumatized melancytic nevus.  The margin sin these sections are so close to the lesion that I cannot assure you that the lesion is removed.

2.  Dysplastic compound nevus with moderate melancytic atypia.  Melanocytes are present at the junction and within the dermis.  There is an aberrant architecture with associate stromal fibroplasi and a lymphocytic host response.  Upward growth of single cells is not conspicuous but there is moderate atypia of the melancytic cells.  The margin is sufficiently close that I cannot assure oyu that the lesion is removed.

Anyway, I am probably just being paranoid, but I would appreciate any advice you can give!

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rjcravens's picture
Replies 4
Last reply 1/26/2012 - 11:14am
Replies by: scots, King, fdess056, Wendi Lynn

I only have three months of interferon left. Its been a long haul, i finally have the fatigue, depression and nausea under control. I have really been feeling good. And picking up extraa shifts at work. (I am a nurse). Then, starting this past weekend, i started getting this sever itching on my lower back. Its spread all over my back area and sometimes on my hips. But there no rash, no reddeness, no areas of concern...its just plain itching that is driving me crazy! No changes in fabrics or deterg or soap or any of that. Has anyone ever had this problem? I am walking around the house trying to find any corner i can use to scratch it. I am going to end up in a straight jacket.

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atcchris's picture
Replies 8
Last reply 1/26/2012 - 11:01am

I know, I know, it's my decision and I gotta be good with it, but wondering what some fellow warriors think about the rationale.

I was initiall diagnosed in January 2009, lesion on my back.. can't remember the depth, but I know there was some concern that it was deep.  It had progressed to the sentinal node, but no other of all the other nodes in the cluster.

I did interferon, one month high dose, then started on the rest of the year and made it for 5 more months but decided to stop it because the side effects were just so bad.

Scans every 3 months since then.. started with PET and MRI, then after a year, CT and MRI.  All is well until June, when they saw a spot with the CT on my lung.  Next scan, spot had grown, so a PET was done, and it wasn't particularly "hot", so 3 months later, another PET showed still not "hot", but had grown 3mm (doubled in size).  Decided to do laproscopic surgery to remove it, and it turned out to be melanoma.  No other evidence of disease at present.

Talked to my surgical oncologist, who said there were 3 options:  watch and wait to see if something else popped up,  see if it has the BRAF mutation and then take the pill (ZELBORAF), or take YERVOY.  He said if it were him, he'd put in the port, do the YERVOY and be done with it and referred me to the medical oncologist who had administered the interferon.  In talking with this doctor, he echoed my options, but added some information.  He told me that, over time ZELBORAF lost its' effectiveness.  In a case where there was no tumor load, a person could conceivably take it indefinitely and never know if it had done any good at all.  YERVOY usually was done 4 times, but he had a 78 year old patient with significant tumor in his groin who respended quite well, and continues on a once every 3 month maintenance regimen.

While I was there, my medical oncologist called the surgical one and they talked about my case together, and both seemed comfortable with a plan to wait, watch and scan, and if something popped up, treat it with ZELBORAF initially to see if ZELBORAF could get rid of it.. If the tumor could be eliminated with ZELBORAF, fine and good, but if only stability was gained, if the tumor was operable, surgically remove it and continue on ZELBORAF until another tumor showed up.. otherwise, go on and try YERVOY.

This seems reasonable to me.  On the other hand, there is the thought that there's less than 20% chance that I don't have anything else pop up, so maybe I should hit whatever's in there as hard as I can at the start in hopes of eradicating it all while it's just a few cells running around my bloodstream.

Just hard to know if I'd be using all those drugs and enduring the side effects for nothing or if the odds really are great that taking one of these new drugs would actually wipe out whatever melanoma cells I have.

Any thoughts?  As I said, I'm leaning toward watch, wait and scan, knowing that the odds are I'll have new tumors, and I have no way of knowing where they might show up.

 

Thanks for your responses... and don't worry.. you're not likely to offend me by any of your thoughts on the subject.  I'm in information absorbing mode.

 

Chris

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It's been a very long time since I've posted last...mainly because I've been out living life.  But recently, I've developed pain under my right arm but with no apparent lymph node swelling.  In 2004, I had a full axillary disection on the left arm, and have been NED since 2005.  I've read that there is a relationship between Melanoma & Lymphoma and am a litle concerned.  Does anyone have any experience with this? 

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Lisa13's picture
Replies 2
Last reply 1/25/2012 - 10:44pm
Replies by: momof2kids, WendyPam

Today was my 24 week scan from ipi. Keep in mind, they were fabulous with 50 percent shrinkage and some even disappeared. Now at 24 weeks, they've all marginally grown and even my dr. seems confused. My lymphocytes were high during the ipi and then the day I got my 16 week scan and results, the lymphocytes went down to 0.53. Today, they are back to 1900 which my dr. feels a reintroduction of ipi would be the best idea.

I know if you're a responder to ipi, you have a good chance of it working again. Has anyone experienced this? does anyone know why something would be so great and then all of a sudden stop suddenly.

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

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Today was my 24 week scan from ipi. Keep in mind, they were fabulous with 50 percent shrinkage and some even disappeared. Now at 24 weeks, they've all marginally grown and even my dr. seems confused. My lymphocytes were high during the ipi and then the day I got my 16 week scan and results, the lymphocytes went down to 0.53. Today, they are back to 1900 which my dr. feels a reintroduction of ipi would be the best idea.

I know if you're a responder to ipi, you have a good chance of it working again. Has anyone experienced this? does anyone know why something would be so great and then all of a sudden stop suddenly.

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

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Today was my 24 week scan from ipi. Keep in mind, they were fabulous with 50 percent shrinkage and some even disappeared. Now at 24 weeks, they've all marginally grown and even my dr. seems confused. My lymphocytes were high during the ipi and then the day I got my 16 week scan and results, the lymphocytes went down to 0.53. Today, they are back to 1900 which my dr. feels a reintroduction of ipi would be the best idea.

I know if you're a responder to ipi, you have a good chance of it working again. Has anyone experienced this? does anyone know why something would be so great and then all of a sudden stop suddenly.

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

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