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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bruski1959's picture
Replies 9
Last reply 1/31/2012 - 7:23pm

Jackie is scheduled for her first melanoma treatment with Yervoy on Friday morning at St. Catherine's Cancer Center. This is of course dependent on the Yervoy being shipped to the cancer center. The oncologist office called yesterday afternoon and said they had spoken with the pharmacist at the speciality pharrmacy and that the Yervoy was in the process of being ordered and shipped. We will get a call if it looks like the Yervoy will not be there tomorrow. We could reschedule to later Friday or Saturday. Otherwise it would need to be the week after next, as I am commuting to Schaumburg next week for a class for work. They want me to be there with Jackie the first treatment and they don't want her to drive after the first treatment until they know how she will react to the Yervoy. The first visit will take 2.5-3 hours, as they will be taking a picture of her port. Also they will give her some preventative medication prior to giving her the Yervoy, which is apparently standard practice for cancer treatment infusions. Its been over 2 months since Jackie's melanoma advanced to stage 4, and we think its important to get the treatment started, as we have seen the melanoma continue to spread. Jackie seems to be doing okay with the port, just having some minor discomfort which seems to be diminishing with time, and she takes pain medication if necessary. Please continue to pray for us, as we enter into this treatment phase. Please pray that Jackie can tolerate the side effects, that the medications we have to treat any side effects make the side effects manageable, and that the Yervoy shrinks the melanoma tumors!

Thanks :)

Bruce and Jackie

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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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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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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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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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Richard_K's picture
Replies 2
Last reply 2/10/2012 - 8:18am
Replies by: Richard_K, boot2aboot

My creatinine level continues to climb and I'm wondering if any others have experienced the same.  I never really tracked it prior to going on Zelboraf, but since that time it has slowly continued to rise. I know it is a known side effect but I'm looking for some input from others on this board. My PCP wants me to see a renal specialist and I just want to be armed with any information I can get prior to that appointment. Thanks

Dick

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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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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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MeNDave's picture
Replies 1
Last reply 1/24/2012 - 5:25pm
Replies by: CarolA

Just thought I would let all of you know that Roswell Park Cancer Institute in Buffalo, NY just opened a clinical trial for those with stage IIB, III, and IV disease (both active disease, and resected for stage IV) with tumors that express the NY-ESO-1 protein.

It appears that prior adjuvant interferon is listed under exclusions, to which extent I'm not sure.  It does not seem to reuire the HLA blood typing either.  Dave has an appointment with the oncologist tomorrow, so I plan to ask more questions.

I'm not sure if the following link will work or not - but the trial is listed at www.clinicaltrials.gov.

http://www.clinicaltrials.gov/ct2/show/NCT01234012?term=melanoma+AND+Roswell&rank=12 

 

For those of you with stage II and III disease, it's nice to know that hopefully more options are coming down the pipe :)

Best wishes to all,

 

Maria

Don't ever, EVER, give up!

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himynameiskevin's picture
Replies 4
Last reply 1/25/2012 - 12:46pm

The good news is that, appointments have been made and I should have these three lesions in my brain taken care of by SRS in the next week or two. The locations and small sizes (largest one showing at 9mm) imply that the procedure should be pretty routine with no expectations of complications. Fingers crossed that it stays this way.

My doctor saw the CT results of my lungs, the good news is that there's nothing new. The bad news is that each one has gotten a little bigger since my last scan on Oct 4th. The largest one increasing from 3cm to about 4cm. I was reminded that sometime things get bigger before they get smaller, and that sometimes Yervoy can take a little time to do it's thing. So I'll be getting another CT of my chest around the second week of February to better show the effectiveness of the treatment. My doctor also pointed out that all the tumors appeared.. I forget the word he used, but he was saying how they're close to perfectly spherical, like cysts or something... implying that "they're doing something". I hope it's something good, like shrinking...

And that's about it for now. As long as the SRS goes as planned, the scan three weeks from now will be most important, not sure what options I'll have available, I've heard mention of something-Antipd1 - not sure where I'd have to travel for that or if I'd be accepted. The BRAF one is an option, possibly Yervoy or NIH again depending on the results of the scan.. so we'll see when I get there. In the meantime, I'm taking good care of myself, My diet is phenomenal, most thankfully to the place I work. I'm naturally very active and continue to be. And although it tough, I'm doing my best to stay optimistic and keep my state of mind focused and worry-free. I remind myself that I commonly see people on here overcoming the the odds, and updating all of us with a post titled "Good News!". May we all be fortunate enough to do that some day. Hoping for the best.

To our health.
-Kevin

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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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dearfoam's picture
Replies 22
Last reply 2/23/2012 - 6:57am

Hi everyone,

I just wanted to let you all know that Dad is no longer suffering. He passed away on January 12th.

(I will go ahead and say I have to type this somehwere. It has been a really hard year, and you may not want to read as I recount the last weeks and hours.)

I had posted that we had to move to hospice care after a really hectic out-of-town Thanksgiving hospital episode. I feel like at the time it was deemed Temodar was no longer effective, I had already noticed a subtle decline. He also had a poor reaction to the Zelboraf in November, I think in part due to how advanced his brain tumors had become. The tumors affecting his heart rhythm, the meds also also affecting the rhythm. The continued effects of the steroids, etc. The infection. The seizure(s). All the medications got complicated, and were still just were not effective for him.

Hospice helped a lot, but we still had a lot of stressful problems helping dad through December. Eventually we had to check him into the Palliative care unit at the hospital becaus ehe had gotten very combative and confused, and form there to the nursing home while we figured out what to do. He was such a big guy, I couldn't move him or help him up, and he couldn't remeber that he didnt have the stamina or even blood pressure to suport himself and would fall. I felt pretty helpless.

We finally made arrangements on a Friday to safely bring him home early the next week. We had soem minor crisis at home and had to delay til that Wednesday. We would readmit him to hospice, have more helpers, etc. He had lost the ability to speak clearly, but I could tell he could hear and understand me. He was so excited his favorite team (U of ALabama) had won the championship against LSU. He cracked a tiny half smile. I told him he was coming home the next day and all his "granddogs" were waiting on his bed. He smiled a tiny subtle smaile again. I could plainly see I was not going to have to worry about him "sneaking" out of his bed and falling anymore.

I packed some of his things that day, and the next morning came to get the rest. He looked pitiful and really uncomfortable for the first time since he ad that chest tube in April 2011. I was so glad we were able to get him soemwhere familiar and hopefully relaxing. He was coming home in the ambulance later. I was surprised, but not upset, that he had to go on an oxygen machine. We had used one a lot during the spring after his lung collapsed (from biopsy) and in the summer after his blood clots in both lungs, so it didn't really phase me.

He knew he'd made it and we could tell he was happy, but also in pain. I played a favorite collection of Wagner, brought the dogs to see him (those are our kids), and was able to give him water. He was vaguely responsive. The admitting nurse said she had seen many patients like him "perk up" and have a few weeks. I knew transport must have been tiresome and he needed some good rest, though the timeline seemed off to me. That night it was rough, breathing wise, it got really labored and rapid and congested. The oxygen machine was turned up from 2 to 4 liters. It malfunctioned and then was ok, but the guy was out at 1 am to replace it. It didn't seem to help. I told the nurse over the phone it reminded me of my cat's breathing the night before she died, and it was unnerving. He was not responsive, except I could tell him to swallow and he would. But not much else. The on call nurse came to help me around 2am. (She lived about an hour away.) His HR climbed up into the 160s and his breathing rate was aabout 36/ minute, despite the ativan and morphine. We got him "relaxed" as much as possible his breathing rate had gotten less intense, chest no longer heaving. I finally got in bed at 4:30 and was up on the hour for medicine. She called to check in a few times, and shortly before 8, I went in and he was gone. It was so surreal.

I felt so relived and so sad and so exhausted. I still do.

Thanks for all the help everyone offered to me and answering questions and letting me vent. I still worry about you who are dealing with this, but I am also relieved that so many have had much better responses to their treatment, mostly because you had at least found it before it was so advanced. I hope you all remain active participants in your healthcare and enjoy the hell out of life.

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