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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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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Colleen66's picture
Replies 7
Last reply 12/23/2012 - 7:53am

Today was my 2nd Day infusion of interferon.  Aches and pains more severe today.  Headaches seem to be under control.   Riggers started in pretty bad today with the highest pain point.  Took two ativan. Aside from me rotating tylonenol and ibuprofen.  Piled on four planets and after a couple hours rest fever broke. Pain is down and riggers are gone..

So thankful I'm getting thru this.  I hope all getting treatments are tolerating the effects the best they can.

Keep fighting.

 

Colleen 

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krem's picture
Replies 3
Last reply 12/21/2012 - 1:25am
Replies by: krem, _Paul_, Janner

I had surgery on my outer quad/thigh to remove a melanoma in situ about 6 months ago. I'm finally starting to regain feeling on the surface of my skin surrounding the incision site, but now I have a new problem: more widespread numbness.

Whenever I have something (like a laptop) resting on my lap, it's painful all down my leg. Also if I sleep on my side, either one oddly enough, the same pain occurs. I'd call it numbness because that's what I'd assume the pressure would be creating... but I guess it's more of a pain. It is almost like the feeling that happens right before a pins and needles sensation.

The real question here is this: Will this go away? Is it cause for concern? I know it's not uncommon for nerves to be cut in this type of surgery, but I don't know much about nerve regeneration symptoms. 

Thanks,

Emily

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sjl's picture
Replies 2
Last reply 12/20/2012 - 11:21pm
Replies by: sjl, Anonymous

I realize that not many are on my husband's treatment plan but I thought I'd ask anyway in case someone reads this and can help.  My husband is on carbo/taxol chemo for Stage 3c mucosal and has been doing extremely well.  At his last appointment they could no longer feel any tumors at all and prior scans had shown continual shrinkage.   Until the next scan we have no way of knowing if they are gone or not but we are trying to stay positive.  He was to get a treatment today but his platelets are too low so they are going to try again next week.  Now I'm worried that by delaying the treatment a week that the big M will have a chance to take hold again.  In August a large tumor and several smaller ones popped up on his neck literally overnight and grew much larger everyday until he began treatment two weeks later.  After the first treatment there was a 75% reduction in tumor load and they've been shrinking ever since.  He gets treated every three weeks.  This would have been a scan day but at the last treatment when they could no longer feel anything they decided to wait another 3 weeks for the scan, making it 6 weeks between scans.  He has had 6 treatments and is to get 4 more.  Thoughts, anyone?

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lou2's picture
Replies 2
Last reply 12/19/2012 - 9:53pm
Replies by: lou2, POW

Letter to the Editor

Journal of Investigative Dermatology (2013) 133, 274–276; doi:10.1038/jid.2012.268; published online 16 August 2012

Topical 5-Fluorouracil Elicits Regressions of BRAF Inhibitor–Induced Cutaneous Squamous Cell Carcinoma

Amaya Viros1,2, Robert Hayward1, Matthew Martin1, Sharona Yashar3, Clarissa C Yu4, Berta Sanchez-Laorden1, Alfonso Zambon5, Dan Niculescu-Duvaz5, Caroline Springer5, Roger S Lo4 and Richard Marais1,6

  1. 1Signal Transduction Team, The Institute of Cancer Research, London, UK
  2. 2Seccio Dermatologia, Departament de Medicina, Hospital Universitari Vall d'Hebron, Barcelona, Spain
  3. 3Department of Pathology and Laboratory Medicine, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, California, USA
  4. 4Division of Dermatology, Department of Medicine, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, California, USA
  5. 5Gene and Oncogene Targeting Team, CR-UK Cancer Therapeutics Unit, The Institute of Cancer Research, Sutton, Surrey, UK
  6. 6Molecular Oncology Laboratory, The Paterson Institute for Cancer Research, Manchester, UK

Correspondence: Richard Marais, E-mail: rmarais@picr.man.ac.uk

Abbreviations:

CuSCCs, cutaneous squamous cell carcinomas; DMBA, 7,12-dimethylbenz-(a)anthracene; KA, keratoacanthomas; MAPK, mitogen-activated protein kinase; TPA, 12-O-tetradecanoyl-phorbol-13-acetate; 5-FU, 5-fluorouracil

 

[Sorry, no abstract, but the title says it all.]

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Erinmay22's picture
Replies 7
Last reply 12/24/2012 - 1:38pm
Replies by: Erinmay22, Tina D, vivian, POW

 

Got my scan results. As my doctor said 'basically everything looks ok'. Except that a lymph node they were unable to remove during surgery has grown. Ipi can take awhile to kick in, right?   
 
Next steps - being referred to the immunotherapy team at Sloan to try and get started on the anti-pd1 trial in January. Will share more details about that trial once I get more info!  
 
The last 2 trials I tried to get in to didn't work out (meaning I didn't get in).  I was too far past the date with the Ipi trial in Jan 2011 since they had to biopsy lung nodules.  Then after lung nodules confirmed melanoma in Mar '11 I tried to get in to the braf trial.  When they scanned again in Apr everything was gone and I couldn't get in to the trial...  and then within 6 months both were fda approved!  Let's see if a 3rd time of trying to get in a trial is the charm?  One can dream, right?  :)  Now if I could only get my anxiety under control!  lol!
 
Happy Holidays Everyone!
Erin
www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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POW's picture
Replies 1
Last reply 12/19/2012 - 11:13am
Replies by: POW

My brother has run into a financial SNAFU between the VA, Medicare, Medicaid, and Moffitt. (Talk about David and Goliath!)  I posted about it on the Caregiver forum under the title Help! "Financial 'Catch 22'". I'd appreciate it if you would take a look and see if you can offer any suggestions. 

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awillett1991's picture
Replies 3
Last reply 12/21/2012 - 12:50pm
Replies by: Anonymous, POW, NYKaren

According to my Dr, some of the Ipi+zelboraf trials are shutting down because of liver toxicity issues. The liver just can't handle both drugs at once. This is where I am now. I finished Ipi #4, 2 weeks ago but after round 3 had to restart Zel because my heart met was growing like crazy. Have already had to stop Zel twice because of crippling side effects even though I was doing really well on it before Ipi.

At one point my ALP was almost 700, AST, ALT, and bilirubin were all high, but as of yesterday, ALP is down to 352, bili is normal, and the rest isnt too bad. I'm restarting Zel later in the week - I have to take it, but I'm a little gun shy. We are trying to get me to one week on/ one week off the drug. It's a scary place to be.

Amy

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mel123's picture
Replies 34
Last reply 12/26/2012 - 11:08am

I'm curious about how many of us have a family history of melanoma; I personally feel like any cancer is part genetics, part environment, but I thought an informal poll of the melanoma community might be telling. I have a family history, but also have gotten sunburned several times and used tanning beds,  and I'm sure that there are people who only had one of those factors, or maybe neither. 

"For God has not given us a spirit of fear, but of power and of love and of a sound mind" 2 Timothy 1:7 melwithmelanoma.blogspot.com

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dleonard's picture
Replies 7
Last reply 12/19/2013 - 12:55am

Has anyone discussed Sylatron with their doctor?  Is anyone taking it, now?

I would very much like to chat with people about this med. 

I can be reached on my personal email, at davidleonard2@Verizon.net, or on my cell phone, at 212.289.0087.

Thanks!

david

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_Paul_'s picture
Replies 12
Last reply 12/18/2012 - 7:28pm

I just found out this morning that I have been accepted into the GVAX trial at Johns Hopkins!

I originally tried in Sept. but the MRI found a tiny enhancement on my skull under where the primary was. I don't have the results of the second MRI that was taken just a few days ago, but apparently they are confident enough that it isn't a skull met that I can be in the trial.

Who knows if the trial will help me. What I do know is that it feels damn good to be doing something about it, plus regardless of the outcome these trials help expand our knowledge and get us closer to a cure. Even if something doesn't work its helpful since we know not to pursue that avanue further.

My heart goes out to all the people on this site and you are all in my prayers.

- Paul.

To exist is beyond fantastic.

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JakeinNY's picture
Replies 16
Last reply 4/8/2016 - 1:52pm

Do yourself a favor and look into the ketogenic diet. This is not some crazy thing that has no history. It has been studied and undergone some small trials and is currently going thru many more trials. Check out the following links:

 

http://www.nutritionjrnl.com/article/S0899-9007%2812%2900186-4/fulltext

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157418/?tool=pubmed

http://www.nutritionandmetabolism.com/content/4/1/5

http://www.ncbi.nlm.nih.gov/pubmed/7790697?dopt=Abstract&holding=f1000,f...

http://melanomamaverick.com/finally-able-to-cry-emotional-from-ketogenic...

 

The first four links come from reputable sources.

The last link is related to melanoma and you can see my post in it but of course I don't know if it's legit, as it is just someone's blog.

You can talk to your oncologist about all of this.

Best  wishes for a long life.

Jake

Do the best you can.

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susanr's picture
Replies 13
Last reply 12/22/2012 - 7:21am

You all may not know me.  I was not one of the "regular " posts.  I was not one of the "known patients or caregivers" on this forum.  I lost my brother Peter on 12/6/2012 to this horrible beast Melanoma.  I did not think I could re-visit this forum but needed to say good bye formally and wish you all well and hope to beat this very aggressive cancer melanoma.  He was only 45.  He had a wife, 4 small children, parents, and siblings.  He fought 3 hard years.  Nothing seemed to work.  We hit one brick wall after another. My brother never once said " why me", he never cried or complained.  Its sad to say that I am in the medical field and still could not save him.  I was a new mom at the time this beast was brewing in him.  He thought he had a splinter on his foot that was not healing.  I did not pursue anything for him thinking its just a splinter.  By the time it clicked in me...it was to late now that I look back.  I feel that I did not fight hard enough for him and hope he forgives me.  I was involved by being a new mom.  Normally I would be the biggest  "Pain" to my family for going to the doctor.  You all probably agree with me that nobody never expects this to happen.  I still feel like this is a nightmare but when I wake up...its not. I can say that my career in the medical field is over... I am tired of non-sense that the medical field brings and watching people suffer and you can't control it.

I feel so bad for any parent that has to bury a child.  It destroys me that my parents had to go through this.  I also feel for the poor parents of those children in Conn. that have to endure this nightmare.  My brother loved children so I know he is teaching them to fish right now....hoping he ain't smoking a cigar in front of them.....LOL !!!

During the last week of my fight for my brother one person on this forum was such a great help....and that was Mr. Charlie himself.  Charlie, I hope you read this and understand how much I appreciate your help.  I have this feeling that you know when somebody on this forum really needs an extra shoulder to lean on.  I kind of knew what the outcome was going to be but did not give for him.  The night before he passed, he told us that he was finished with doctors and hospitals.  I can at least move on knowing that we did all that we could under his wishes.  Charlie.....Thank you.  You are great!!!!!

To all the rest on this forum, Please be there for everyone.  I read some of the posts and there are some of us that really need that support form all of you on this forum battling this cruel, nasty, cancer.  Someone can post a topic and have over a hundred views but not one comment......even if you don't know the topic....just write that you are sending a thought or a prayer and that can help.  There are many of you that I have been following and have cried over some that have passed on.....My brother was not a member on this forum but I was and please support all who have died from this disease and who are still battling this beast.  He is now with all the angels.

Best wishes and keep fighting !!!!!!!!!!!  Lets find a cure !!!!!!!!! 

Susan

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