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.

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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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"The researchers knew that a targeted therapy would kill only the tumor population, not
the fibroblasts in the tumor structure. However, the finding that fibroblasts contribute
to melanoma drug resistance was unexpected."
For the full article see: http://www.sciencedaily.com/releases/2012/01/120105131643.htm

Take care

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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rbruce's picture
Replies 2
Last reply 1/24/2012 - 3:52am
Replies by: LynnLuc

I have been on a clinical trial (PI3k inhibitor) at UCSF for 3 months now and my last scan showed no new tumors and no growth, but no reduction.  The side effects come and go which include large itchy rashes and bumps as well as diarreah.  Sometimes the itching becomes unbearable so they back off on the doseage for a few days.  I take the med orally, 2 pills in am and 2 at pm so it's been pretty easy.  Compared to the biochomo I went through, this is a cakewalk.  I chose this particular trial because of my NRAS Q61 mutation and am told that inhibiting the PI3K shows promise and that there wasn't an open spot for a PD-1 trial anywhere on the west coast.  UCSF is trying to get a PD-1 trial open soon and I want to be prepared to make a decision.  After reading and hearing about PD-1 for the last year, I haven't seen much new info lately.  All of the new PD-1 trials that are opening seem to be single agent, ie. PD-1 only, while some of the older trials that seemed to show a lot of promise included a vaccine component.  With that said, can anyone share their experiences with any of the single agent PD-1 trials that have opened recently?  Side effects, s\results, etc?  I know it's early, so any information you can share would benefit a lot of people waiting for a PD-1 trial to open near them. 

Thank you!

Robert

p.s. I went back to work on December 19th when after my biochemo I didn't know if I was going to make it ....period!  I'm feeling good, a little pain from my rib mets and a bit of fatigue, but all in all, I'm doing well. 

The circumstances of our lives have as much power as we choose to give them. David McNally

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Replies by: bruski1959

The same surgeon that removed Jackie's lymph nodes in August will be installing a port tomorrow. The port will be used for her weekly blood draws as well as the Yervoy infusions. Paperwork has been done with oncologist's office and specialty pharmacy to get the Yervoy delivered to our local cancer center. Yervoy has been requested for Thursday or Friday. Jackie will have the first Yervoy infusion Thursday or Friday if all goes well. We got a "treatment bible" from the oncologist's PA today, and have a much clearer idea of what to expect, who to call, what numbers to call etc. Her oncologist has treated melanoma before, and also has experience treating melanoma with Yervoy. Jackie also has an oncologist that has treated melanoma at the Mayo Clinic that we are working with who also is experienced treating melanoma with Yervoy.  We appreciate your feedback, your thoughts and your prayers as we take the next step in Jackie's battle with melanoma (left ring finger amputated, lymph nodes left armpit removed, lymph nodes metasteses recurred, PET scan shows melanoma in liver and lungs, liver biopsy postive for melanoma). 

Thanks,
Bruce and Jackie

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The same surgeon that removed Jackie's lymph nodes in August will be installing a port tomorrow. The port will be used for her weekly blood draws as well as the Yervoy infusions. Paperwork has been done with oncologist's office and specialty pharmacy to get the Yervoy delivered to our local cancer center. Yervoy has been requested for Thursday or Friday. Jackie will have the first Yervoy infusion Thursday or Friday if all goes well. We got a "treatment bible" from the oncologist's PA today, and have a much clearer idea of what to expect, who to call, what numbers to call etc. Her oncologist has treated melanoma before, and also has experience treating melanoma with Yervoy. Jackie also has an oncologist that has treated melanoma at the Mayo Clinic that we are working with who also is experienced treating melanoma with Yervoy.  We appreciate your feedback, your thoughts and your prayers as we take the next step in Jackie's battle with melanoma (left ring finger amputated, lymph nodes left armpit removed, lymph nodes metasteses recurred, PET scan shows melanoma in liver and lungs, liver biopsy postive for melanoma). 

Thanks,
Bruce and Jackie

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piii's picture
Replies 12
Last reply 1/25/2012 - 11:39am

Just an update – and venting. I did the one month high dose and started the year of low dose but I decided to stop today. I know the high dose was going to be tough but I could get through 1 month I just can’t go a whole year with the symptoms. They are just as bad as the high dose. My wife feels I am giving up. She is pretty mad tonight but I think she is afraid if I give up it will come back. I am not giving up – I need to feel good to start living again and not worry about cancer. I believe the positive mind is a powerful thing and I can go a whole year feeling like I do know. Anyway thanks for reading.

 

Peter

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gtown's picture
Replies 5
Last reply 2/14/2013 - 8:22pm

Just had a chest x -ray which came out clear but while waiting for the results my brain started going into overdrive. Is there a place where I can find the survival rates of people that have nodular melanoma only? If my lesion started as a open ulcer and then closed up could this be construed as an ulcerated lesion? The biopsy results said that it wasn't ulcerated. How do they determine an ulcerated lesion? My doctors secretary said it was done microscopically. ( I been trying to connect with my doctor but we're playing phone tag )  Can anyone point me to a website for a diet for this disease?

My SNB came back clear in May of 2011 has anyone had the disease progress to other parts of the body with a clear SNB? Just give me the truth and I'll deal with it.

Thanks in advance

Gtown

Nodular Melanoma 1.9 mm on shoulder diagnosed 4/ 2011  Taken out at U of P hospital 5/2011

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djcota's picture
Replies 8
Last reply 1/31/2012 - 6:46pm

Where do we start?  Husband just diagnosed with malignant melanoma:  head is spinning, frustrated.  Have many questions/concerns.  Next surgery date not till Feb. 15!!!  We feel that is too far away.  We would rather be safe than sorry.  Presently seeing dermatologist--should we jump the gun and go to another Dr.?  Where can I find the most up to date and accurate information? 

We would appreciate any information you can give us.

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samcanada's picture
Replies 5
Last reply 1/25/2012 - 11:50am
Replies by: dodgedh2, Gene_S, TracyP, bdhf, Janner

My husband just had his first visit with an oncologist last week during which she informed us that he has a 40% chance of recurrence.

My question is, and I know this may sound silly, does that mean that he has a 60% chance of being just fine and this being gone?

I was under the impression that is was just a matter of time before this showed up again, that it was pretty much a done deal if you will. Every story I have read seems to point to the fact that it will definately come back so I'm not sure what to believe?

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Jerry from Cape Cod's picture
Replies 6
Last reply 1/24/2012 - 12:48pm

Hello all,

I just wanted to give you a very brief and I mean very brief update on my progress.  The paralysis on my right side is almost complete disappeared.  Unfortunately, I have a lot of muscle to repair and train again.  My left side has finally to everybody's amazement started to respond. 

 

Frankly, we all expected me to come out of Rehab with not much hope of left side recovery, but what was seen in the last two To three weeks has given us a tremendous amount of optimism for some decent level of left side response and return to useful status.  So when I walked to the great unknown with a lot of confidence in my rehab team and hope that my nerve pathways continue to look for alternative routing.

as far as a "Mass" in the neckwe really don't have any idea of what it is and currently what it's doing.  We have an MRI did for at least three months as I am remaining stable or improving in that area.  Depending on how you interpret the results to date.  The plans are to have updated MRIs done within the next three weeks and have a meeting with the clinical oncologists.  Shortly thereafter to review what's going on.  Because of the high dosage steroids and other meds I'm on and the fact that I'm going through active rehab with what appears to be stable, Mass. we frankly don't intend to do a thing for a while.

Due insurance restrictions.  I've moved to a smaller, but Okay Rehab facility But I was fortunate to be able to "select" two great specialiststo ensure I get the most for the time limitations and equipment shortness.

I'm trying to gather all the experiences to post in the blog and will try to have an update by the end of the week.

and most important of all, thank you all who have sent e-mails, cards, phone calls prayers and just plain kindness.  It is held so much get through this time.

Jerry from Cape Cod

note: Composing this e-mail required using the assistance of voice recognition software. I proofread diligently but find I sometimes miss errors. I'm still "training" the software but I notice capitalization, punctuation and usage problems crop up from time to time. Please let me know if you have any questions about content meaning, or questions that may have been caused by the interpretation of the software.. Thank you for your understanding.

 

 

 

 

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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himynameiskevin's picture
Replies 6
Last reply 4/26/2012 - 8:47pm

I've got a few random questions,  if any one has any answers or insights, I would love to hear. Help put my waiting/worried mind at rest.

1. I finished my last dose of Yervoy on Dec 20th and so far it doesn't look like I am going to benefit from it. The last time I talked to my doctor, he mentioned that he wouldn't give up on it just yet, and explained that sometimes it take a while to "work". Has anyone experienced any kind of delayed or late response?

2. As of about 5 days ago, I am experiencing what seems like mild paralysis in my left hand/wrist. No pain/numbness/tingling, it's just not quick to respond. Like my fingers don't wiggle or move as usual. It's a bit clumsy I guess. I read this could be an uncommon side effect that could arrive weeks/months after the last dose. Every time I went in for a dose of yervoy a few of the numerous questions asked if I've been dropping things or have had trouble gripping. Has anyone experienced this?

3. After finding out I have three brain mets last Friday, I understand that this paralysis feeling could be something neurological, maybe there's one of the lesions is causing pressure and problems? If that's the case, has anyone experienced something similar? If that what's causing the problems and the stereotactic radiation successfully takes these guys out this week, could i expect my hand to come back to normal?

 

That's it for now. Thanks in advance. For anyone wondering, I have an appointment with the radiation oncologist on Tuesday to see about zapping these guys out. As for the results of my ctscan, I still don't know. I dropped off the disc last Tuesday, called twice but have yet to here back, I'm not sure if that's a good thing or bad thing. My doctor is a great guy and never seems to waste a second informing me, so I'm sure there's an explanation. Should be getting a lot of news this week, I'm a bit worried, but doing my best to stay optimistic and hoping for the best. -Kevin

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