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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DA Boston 42's picture
Replies 3
Last reply 12/23/2012 - 10:25pm

Hi everyone,
I used to take zelboraf and want to take it again.
I also used it when it was a clinical trial. I am of course BRAF positive.
Anyone have any thoughts about doing Zelboraf again?
Please respond!
Thank you,
Don Armstrong

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Anonymous's picture
Anonymous
Replies 10
Last reply 12/24/2012 - 8:59am

I didn't post often, but frequented the site to find helpful info. My mom passed away Friday evening after a 10 month melanoma battle. She was young, vibrant, giving, caring, so loving... I could go on and on. I pray for each and every one of you, patient and caregiver, and those of you who have lost a loved one to this horrible cancer. Never give up.

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buffcody's picture
Replies 2
Last reply 12/25/2012 - 5:51am
Replies by: LynnLuc, POW

My wife the other night was rejoicing that I was now NED.  I said I thought that was not clearly the case.  I've only had one met to the body.  That was surgically removed, and my last PET scan was negative for any cancer.  But my last MRI showed me with two very small brain mets.  Both of those were "dealt with" by SRS, according to the onc, successfully.  Does successful SRS treatment of the brain mean that my brain is currently NED?  Guess that's my question before I claim the status. I know, despite being hit by SRS, you can still see something on MRIs in the area that was radiated.

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POW's picture
Replies 11
Last reply 12/26/2012 - 1:14pm

My brother was diagnosed 6 months ago Stage IV with mets all over, including the brain. A combination of WBR and Zelboraf worked well for 5 months. Recently, a liver tumor started growing again and his oncologist said that he was becoming resistant to the Z. He is now off Z for a 30 day "wash out" period and then he will either get into an anti-PD-1 clinical trial (fingers crossed) or he will try try Ipi. Both of these treatments are based on monoclonal antibodies.

My concern is that melanoma that is resistant to Z often comes back more aggressive than it was originally. I think I'm beginning to see signs that his brain tumors are growing already (slurred speech, extreme fatigue, unstable walk) although this could just be paranoia on my part. My concern is that his tumors will grow so fast that he won't survive the wash out period plus the 4-8 weeks it takes these antibody-based treatments to exert an effect. But, really, what choice does he have? Any hopeful stories out there? Any suggestions?

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Marilynn Eiken's picture
Replies 9
Last reply 1/6/2013 - 5:51pm

My husband just had his second craniotomy with tumor resection because of a melanoma brain tumor that grew back in the exact same spot as the last one.  We were confident that it was necrosis and not tumor regrowth because all the perfusion studies were cold.  Black even, showing no blood flow to the area.  It was a huge disappointment to find out it was the melanoma again.  He's had an odd course.  He started with a skin lesion 3 years ago and then boom..brain tumor two years later.  No other issues.  We did WBR and gamma knife to spots that were missed.  Things have been going well but in November they found a very small liver lesion.  We were able to ablate the area and thought we were doing well.  December MRI showed more changes to the resected area and our neurosurgeon said lets get it our of there.  This surgery showed melanoma, about the same size as the first, it was visibly black and invading into a small portion of the dura.  Everything was resected but there is a black "film" that was visible following a vessel into the leptomenigeal area of the right frontal lobe.  Our neurosurgeon is wonderful and is heavy in the research department, especially immunotherapy, at Mayo in Rochester.  He is suggesting to our med onc to start Yervoy.  Tye is very frightened.  My favor is wondering if any of you survivors out there would email him.  He is not the type to reach out, that's my part in this marriage.  But I think he would benefit greatly from connecting with someone who is or has experienced this monster.  His email is tyeeiken@hotmail.com.  Thank you.  Keeping him strong and full of hope is essential.

 

Marilynn

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Owl's picture
Replies 3
Last reply 12/22/2012 - 10:00am
Replies by: POW, Anonymous, sharmon

Dear all,

I posted a couple of weeks ago and got really good input from you, thanks again!

My husband only had a partial response on Ipi (mets in lung, testicle and subqs disappeared, mets in neck area, parotis and 3 lymph nodes in abdomen left and progressing). We had a lot of discussions with the doctors since then. In the last weeks we experencied that doctors are only humans, make mistake, don't look at the whole picture etc. Luckily we moved home and have changed treatment center, which is now Kiel, Germany. The doctors there have been very helpful and were willing to discuss any options possible. The result is that they don't trust in a reinduction of Ipi, surgery would have no real benefits as the risks are to high for facial nerves and surgents are sure that tumors will come back. Finally my husband decided to start Zelboraf as it was recommended by the doctors. So he did last Wednesday. They did another CT staging Friday as the other one was 4 weeks old. CT shows only one met in abdomen (same size as 4 weeks ago) but two others (that were mentioned for the first time in CT of November) of at least 10mm had disappeared. Neck and parotis mets are also the same. This sounds very confusing to us because we do not believe that Z lets two mets disappear in between 2 days and all others have not changed. Unfortunately CT wasn't done at the same place as in November, so there was no comparison done. Well, nonetheless we hope the Z works well and we will ask doctors to make the comparison in January in order to understand what is going on.

Most of you know how hard these kind of discussions are and we just hope some calm days next week with our little daughter. She just turned one last Wednesday.

Wish you a peaceful christmas time!

Jenny

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becky15's picture
Replies 2
Last reply 12/22/2012 - 9:01am
Replies by: becky15, Anonymous

I am from the UK and was diagnosed with stage 1a 10 months ago.

I travel a lot to hot places and it is very difficult to find high level (over 50) SPF clothing in the UK, particularly in winter.  I will be in Sydney in mid-January at the start of a trip and wondered if anyone was from there and could advise a shop(s) that would stock such clothing.

I realise I could probably buy SPF clothing from the US or Australia via the internet but I would much prefer to try on before purchasing.

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DeniseK's picture
Replies 17
Last reply 1/21/2013 - 5:46am

Hello everyone,
Wow, so I've been through a lot the last couple weeks. I was on a temporary insurance for low income which only lasted 2 months. My doctor tried to get me zelboraf but the state denied coverage so I was looking into clinical trials. I had an MRI of my brain on Monday and was told Tuesday I have a 12mm x12mm met in the right frontal area, I suspected this due to having some pretty bad headaches lately, so this now excludes me from the trial. My doctor wants me to get either gamma knife or external beam radiation followed ny WBR, but not sure what I'm gonna do, I meet with the radiologist next week to discuss options. I applied for social security disability last week and was approved in about 4 days, thankfully this gives me medi cal insurance and I can now get the zelboraf and radiation treatments. I'm on a steroid Dexamethasone 4mg to help reduce swelling in my brain, I'm also on a time release morphine sulfate 20mg capsule to help with pain in my head, chest, back, and leg. I should be starting z next week and radiation the following week. I wanted to ask if you have had brain mets and radiation, should I get wbr after the gamma knife? I noticed some people don't do wbr right away. I'm thinking if I only have the one brain met I should just zap that and wait and see what happens with the z.
Right now I'm so thankful I finally will have insurance to get the help I need. If your stage 4 its pretty fast at disability, I'll get my first check january 1st and the medi cal was immediate. Its not medicaid its state insurance for first 2 years. I know there's been some questions about the process so hopefully this helps someone.
Can't believe Christmas is 3 days away! Merry Christmas everyone!! :)
Courage, Strength, and Hope for us all!
Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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awillett1991's picture
Replies 2
Last reply 12/22/2012 - 5:52pm
Replies by: NYKaren, Owl

I have really struggled with the side effects of Zelboraf, but here are some over the counter remedies I've had some success with.  This is by no means an all-inclusive list, and often times I've had to escalate to calling my oncology nurse and getting a prescription for something as it got worse, but maybe it will help somebody.

Cheers.

http://zelsideeffects.wordpress.com/

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/22/2012 - 8:04pm
Replies by: Swanee, NYKaren

My father has lesions in his liver, omentum, possibly lungs and other areas of his body.  He's been through cyber knife for a brain lesion, cyber and ablation for liver, and his now on yervoy.  After 3 infusions, he is having terrible collitis and has lost a lot of weight.  They are reluctant to take prednisone because of a terrible toe infection (maybe MRSA?), and one doc thinks that meslamine is contradindicated for someone with extensive melanoma in the liver.  Any suggestions?  I don't know how to help and he's so weak and everyone is so eaxhuasted.  Thanks

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NYKaren's picture
Replies 3
Last reply 12/22/2012 - 5:48pm

Hi,

This morning I took my 3rd dose of Zel.

I woke up feeling fabulous--then about 1 hour later while walking to train (I hadn't taken third dose yet) i started to feel a little light-headed.

It seemed to subside on the ride in.

I took my dose w/breakfast at 9:30.  At about 11:00 I started feeling light-headed again...almost as if I'd had 2-3 glasses of wine.  I usually get tingling in one arm because I sleep on it...now it seems that both hands are tingly, which I know is expected on Zel.

I also yesterday started taking that non-water soluable vitamin B...benfotiamine and Bethyl B12.  Probably not smart to start all at once.

Just spoke to Dr. Wolchok's nurse, and she told me to take my blood pressure... If it's ok, not to worry & they'll monitor me.

Has anyone else experienced this??

 

Thanks, Karen

Don't Stop Believing

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bball's picture
Replies 8
Last reply 12/19/2014 - 5:55am

Has anyone tried Gcmaf to increase immune system

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NYKaren's picture
Replies 7
Last reply 12/21/2012 - 12:44pm

Hi everyone,
I had my pre-Zel PET this morning (as soon as it was done I took my first dose).
Results were as expected however I have a nodule on my thyroid (I'm on synthroid, FYI) so Dr. Wolchok said an ultrasound & FNB are advised.
I must admit, I'm a little scared.
Have any of you had one? Does it hurt a lot? Can they put me out? Not kidding--after all the painful stuff I've been through, pretty stoically, the thought of a FNB in my throat scares me. I guess if there's Mel there its a good time to be starting Z.
All sharing of experience welcome.
Thanks,
Karen

Don't Stop Believing

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o2bcheri's picture
Replies 7
Last reply 12/26/2012 - 5:22pm
Replies by: JakeinNY, o2bcheri, Anonymous, Tim--MRF, POW, buffcody

I saw this story posted on the FaceBook page for the National Cancer Research Foundation.. the creators of Cellect... the natural supplement that has been miraculous in treating cancer... 

thought i would share with you guys... This just happened this past weekend... its soooo exciting!!!  

 

 

Over the past weekend, we thought Andy was going to die from his lung cancer. He was having trouble breathing, doctors first thought it was pneumonia because he was diagnosed with lung cancer, Lippo Sarcoma, this past Memorial Day. Because Andy refused all treatments and only took Cellect, they told him he would die before the summer was out. Here we are approaching Christmas. He was having a difficult time catching his breath, we honestly thought it was the end for Andy, but he was still grateful because he lived longer than the doctors offered with their treatments. The doctor called in hospice care at the hospital. We were all upset because this was the end. 

Sunday after night, Andy was heaving and heaving, the doctors wanted to up the morphine to cause him to relax and die. While the doctors were trying to set up the equipment, Andy was having trouble breathing, and was choking, a team came in to clear the airway, then they saw something in his throat. Some tools, I do not know what they are, like long thin clamps, they pulled it out.

All of a sudden Andy started to inhale so deeply like he just finished a marathon, trying to catch his breath. But he was smiling and happy, it was not a struggle, after a few minutes, he was able to calm down and breathe more normally. The doctor said that he was breathing normal but that there was a lot of blood but pulse, and blood pressure were closer to normal.

They canceled the morphine and started to help him calm down. The oxygen levels improved and everything was improving a little at a time. The doctor said that it appeared to him that the lung tumor had started to die and detached from the lung area and Andy’s body was trying to get it out. Three hours later, Andy was able to eat a regular meal. 

This is similar to what happened in the past after he had a massage therapy. The doctors at that time thought it was coincidence. There is no way it was coincidence, now they are listening. 

Monday was a PET scan to see how the tumor was in his lung. Andy did not have any stress or pain. During the pet scan, the tech asked Andy many times if he had a tumor in the ling because he could not find it. When the tech went to older test results, he was able to see it. He would not comment at all to Andy. We did not care what the scan said because Andy was feeling great and was only interested in going home. 

As soon as the doctor came in, the tech almost ran to him, they disappeared. 20 minutes later, the doctor came back and told Andy that the PET scan does not show anything. The pathology confirmed that the tumor that came out was cancerous, and because there is no evidence in this new scan, he said it is safe to say that the tumor he coughed out was that same tumor. He said he never heard of anything like that before.

When Andy asked if he was cancer free, the doctor grabbed a chair and sat down and said that he has no idea what happened, but he did say that the cancer that came out was from the lung. When he saw all that blood, his first instinct was that the cancer grew massively and that the blood was a bad thing. Now he believes that the blood was caused because the cancerous tumor was dying and tore away from the walls in the lung, causing some blood and healed afterwards. He said he never saw that before. 

He said that he is being cautious, he wants to wait a few months to see what happens. Andy said that because the doctors told him during the Memorial Day weekend that he would be dead in a few months, he already passed his given time, so, he is patient and will wait.

Andy is still weak in his legs and arms because he was in bed so much. The doctor said that because there is no evidence, he was not sure what to do, so Andy said he wanted to go home. We brought Andy home last night. He woke up this morning and kept taking big deep breaths and now wants to challenge anyone. I think he is happy. He wanted pancakes and bacon with lots of maple syrup. He drank Tetley tea called British blend. He said that is Fred’s favorite. I don’t know if that is true. 

This morning, he declared that he no longer has cancer and will not return to his doctor for any tests. I think when he calms down, he will probably agree to non-evasive tests. I told him that he has to show the world that he is a survivor and that he will need to take those tests to validate it. 

This is a wonderful Christmas. To think that Andy was within minutes of getting a lethal amount of morphine to be put down like a dog. And here his cancer is out of his body. I wonder how many people had coughed up blood or tumor particles, or had pneumonia like symptoms and their doctors thought that it was increased cancer. Now we saw first-hand that it was the cancer breaking down and the body trying to get rid of it.

I hope that this update puts a smile on your face just like our entire family is smiling, it is the best Christmas present we could have ever received. Thank you Laurie and Fred, you saved our family

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