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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My husband has been on Zelboraf for almost 3 months when his oncologist told him to take a break from Zelboraf because his blood work results are showing his liver is being compromised (bilirubine, alkaline numbers, etc. are high).  We don't know at this point if this is due to the chemo or cancer.  Since being off Zelboraf, about  7 days now there has been some improvement in liver #'s, but they haven't lowered enough to go back on to Zelboraf according to oncologist.  My husband has a ct scan this Wednesday to see what is going on.  His original cancer pain since starting Zelboraf has gone away so we're hopeful it is working.  If there is liver damage I wonder if he'll be able to go back on the treatment or pursue another treatment (we've been looking into Yervoy and clinical trials).

Has anyone out there had a similar path? 

Thanks for any helpful responses.

Remaining hopeful. 

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Richard_K's picture
Replies 6
Last reply 5/10/2012 - 1:44pm

Got results from Monday's scans.  Everything is stable with no change in what is probably dead or scar tissue.  Another set of scans in six weeks.


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Sharon's picture
Replies 3
Last reply 5/10/2012 - 12:36pm

My Husbands scans show that the turmor is GONE! We thank the Lord for answered prayers.  What he is dealing with now is not being able to make his own steriod after being on steriods on and off during treatment.  He is taking 15MG Hydrocortisone hoping his own steriods will kick in.  He is getting along ok just not the strength and energy he would like to have. We now see an Endocrinologist who is helping him deal with not making steroid. 

We are so thankful to many of you who post to this sight it has helped us along the way to understand Melanoma and the many treatments. We pray you too will have complete healing!  Sharon

God, Family, Friends and Dogs ~ it's all that really matters!

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My husband went to the dermatologist yesterday, he had 3 more spots she sent to be checked out. Praying they all come back negative!

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Replies by: natasha

Vitamin D Levels May Be Vital For Patients Who Suffer From Some Forms Of Leukemia

Easy Health Options Staff | Nov 05, 2010 | Comments 173

There are more than 259,000 people living in the U.S. who have leukemia or are in remission, according to the Centers for Disease Control and Prevention. Now, researchers have discovered a link between chronic lymphocytic leukemia and vitamin D.

The most recent study adds to previous evidence that vitamin D deficiency is a risk factor for the progression of several cancers, including colorectal, melanoma, lung and breast cancer. Low levels of this vitamin may lead to poorer outcomes.

For the new research, scientists from the Mayo Clinic discovered that cancer also progressed much faster in chronic lymphocytic leukemia patients who had insufficient vitamin D levels. These individuals were nearly twice as likely to die compared to patients who had adequate amounts of the nutrient.

The investigators also found that when vitamin D levels were increased, it led patients to a longer survival time.

Lead researcher Tait Shanafelt said that "between one-fourth and one-half of patients seen in routine clinical practice have vitamin D levels below the optimal range." He added that that there may be up to 1 billion people worldwide who have insufficient amounts of vitamin D.

Individuals with leukemia increase their vitamin D levels by consuming more tuna, salmon, eggs or mushrooms.



The best way to increase your vitamin D-3 is to spend 15 minutes a day in the sun between 10am and 2pm.

Everyone reading this posting should get their vitamin D-3 levels checked.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Lauri England's picture
Replies 5
Last reply 5/10/2012 - 2:38am
Replies by: deardad, aldakota22, natasha

I was scheduled for scans last Friday, but I ended up having it done on Thursday at the ER.  I had a headache that started the Sunday before and had it all week.  Not a normal headache, but like a migrain.  I went to my family DR Wednedsay and she put me on Predisone and said it should help within 24 hours and if not go to the ER.  Well it didn't help so Thursday I went in.  They did an emergency CT scan of my brain and then the rest of my body.   They told me there was nothing that showed up on the scan at all anywhere.  What a relief.  Still not sure why the headachs.  They gave me vicodin for the pain and motrin.  These have been helping of course.  I have not had a headache since last Saturday.  I have an appt with Onc this Friday.  Even though I got the results of the CT already I still wanted to keep the appointment because this is the doctor that will be scheduling my furture scans.  If all stays good I want to go back to work in the next couple months and maybe try to live a normal life once again if possible. 

Don't sweat the small stuff. There are bigger fish to fry!

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Replies 4
Last reply 5/9/2012 - 9:39pm
Replies by: Bubbles, Anonymous, rbruce

Anyone on anti-pd1 trial have a problem with their thyroid, high liver panel numbers, eyes or other organs??? Any side effects such a rash, joint pain, etc? Thanks for your comments

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LynnLuc's picture
Replies 3
Last reply 5/9/2012 - 6:15pm

Can the Body’s Immune Response Help Treat Cancer?



In “The T-Cell Army” (p. 24), Jerome Groopman looks at new cancer treatments that use the body’s own immune system to fight the disease. The idea that the body’s immune system could play a crucial role in eradicating cancer originated in the late nineteenth century, but was not embraced by the scientific community. More recently, the “war on cancer” promised that the disease would be beaten within ten years; in 1980, a possible cure for cancer, derived from the immune system, appeared on the cover of Time. But it, too, failed. Jim Allison, the director of the tumor-immunology program at Memorial Sloan-Kettering, began his career by focussing on why the body’s T-cells (the potent type of white blood cell that destroys cells infected with microbes it recognizes as foreign) failed to recognize cancer as being aberrant. In the beginning, “many people thought that the immune system didn’t play any role in cancer,” Allison tells Groopman, but, in 1987, researchers in France discovered a protein called cytotoxic T-lymphocyte antigen-4, or CTLA-4, which protruded from the T-cell’s surface. Contrary to other reseachers at the time, who thought that CTLA-4 increased the activity of the immune system, Allison and his team believed that CTLA-4 actually acted as a brake on the T-cells. “We ought to free the immune system, so it can attack tumor cells,” Allison explains to Groopman. The resultant CTLA-4 antibody is “unlike any other drug you know,” Allison tells Groopman. “You are not treating the cancer—you are treating the immune system. And it was the first drug of any type to show a survival benefit in advanced melanoma patients in a randomized trial.” In March, 2011, the National Cancer Institute announced that it would fund a network of twenty-seven universities and cancer centers across North America to conduct trials of immune therapies, and, recently, patients who had not responded to available cancer therapies have “shown dramatic and unexpected responses to a new series of treatments that unleash the immune system,” Groopman writes. Groopman speaks to two patients diagnosed with metastatic melanoma who are now in remission after receiving experimental immunotherapy treatments—though not without severe side effects. Attacks on the skin, intestines, lungs, liver, thyroid, pituitary gland, kidneys, or pancreas are all possibilities . Still, in trials of the drug, nearly a quarter of patients who had been given a seven-month life expectancy were still alive at three to five years. However, Allison warns, “you’ve got to be careful about using the word ‘cured,’ because some patients have residual tumors. But it doesn’t matter, because their cancers are not growing. And in others tumors just pop up and then go away. So it’s become something of a chronic condition,” rather than a death sentence. “The future is about thoughtful combinations, different antibodies, perhaps with targeted therapies,” Jedd Wolchok, a clinician at Memorial Sloan-Kettering who worked on the early trials, tells Groopman. “There won’t be a single silver bullet for everyone.”

Read more

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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NYKaren's picture
Replies 5
Last reply 5/9/2012 - 5:10pm

Hi everyone,

I haven't been on here for a feels good to post again.

Before my 3rd infusion on April 19, the only side effect I was having was some diarrhea, for which I was given Endocort EC, and I was actually kind of wishing for more (last time I had a bad rash too)...well be careful what you wish for!

A day or two after that, I developed diarrhea, really badly.  The Endocort was no longer controlling it, so Dr. W. put me on  Prednisone..  Of course I wasn't happy about that, but what the heck, we would just get me stable and taper me off.

Then the following week, I was having bad diarrhea again and I was doubled over in pain.  They had me go to the Urgent Care at Sloan (their version of  the ER).  Two doses of Dilaudid helped for about 15 min after each dose, although I had stopped going by then.  Dr. W. came and ordered a CT scan; he said that it looked better than he expected and dx'd mild colitis.  He did say, "Karen, we wanted an immune response, and you definately got one!" Then they pumped me full of more steroids, and blessed relief.  It was like magic.   

In the hospital he said he didn't know if I could get the 4th infusion, but since then I've been weaning off the pred., down to 40 mg/day with the intention of being off in a couple of weeks.  G-d willing, I'm scheduled for my 4th infusion on May 24th.  Even if I couldn't get it by then, it can be stretched out more, even more, apparently than the 16 weeks that is in the protocol.   I don't know how anyone willingly takes steroids.  I have big chills, neuropathy in my feet and horrible GERD.  My gastro prescribed Omeprazole, which did nothing, but Nexium is working well.  I think my case is somewhat complicated by the fact that I had a gastric by-pass about 6 years ago.  I find myself unable to eat most foods, and for the first time in my life, dairy is a big trigger (even lo fat cottege cheese, etc.)  I'm only able to eat poached eggs w/white toast, chicken in soup, and turkey slices.  I've lost weight and any steroid-induced energy is gone (although who knows how I'd feel without them...maybe much more fatigue.) 

The good news is that the mets have stopped spreading.  I go to the onc derm every 2 weeks and he freezes what's left on my scalp/face/neck and in my ear.  (sorry this is still bold, I can't get it off.)  Then I apply Aldera to everywhere he's frozen.  The most stubborn spot is in the ear canal, because he can't spray directly in but has to put gauze in and spray that. Aggressively!  I take Oxycodone 1/2 hour before he starts and I still almost fall off the table.  But I couldn't care less about the pain.  Even the ear is getting better with this system.  Also, we left one spot untreated so that if it gets larger, it would be the measurable disease required for Anti PD-1 trials.  Yesterday when I went, I felt that it had flattened a bit, he wasn't sure, so he photographed it against a ruler.  (should have done it last time, but nobody's perfect.)  Also, I have white hairs growing in my tweezed eyebrow and chin hair, which Dr. W. said is a great sign.  So, I am cautiously optimistic.

I think that's about it...sorry this is so long, but there's so much unknown about Yervoy, I wanted to provide as much info as possible.

Take care my friends,


Don't Stop Believing

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Just a quick note to let everyone know that we now have a small Caregiver Support Guide available online and also as a hard copy.  I would like to take this time to thank all of the MPIP community members who volunteered their thoughts and feelings as we wrote this piece.  Your thoughts and feedback were extremely helpful!

Shelby - MRF

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Hope Returning's picture
Replies 1
Last reply 5/9/2012 - 9:35am
Replies by: palmspringswalt

Does anyone know how Dr. O'Day is doing? Why he disappeared and is he now back to himself or different? He was an asset to the life of many  melanoma patients

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natasha's picture
Replies 1
Last reply 5/9/2012 - 8:33am
Replies by: lhaley

Did someone have the same?

I had my WLE more about 2 monhts ago and everything healed escellent!!

For last week I had light pain  in the scar area.Probably it can be down to my period?

really don't know and afraid of reccuriance :(

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Snickers60's picture
Replies 6
Last reply 5/9/2012 - 8:15am

Anyone have this side effect ?    Poor thing is burning me up here in the deep south.   Wears winter warm ups - robe - blanket over head.

Is his blood thin you think ?    Sorry to be such a pest but we are so new at ZEL !

Thanks for your help.

Nancy  (wife of Warrior Wayne)

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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justlittleoleme's picture
Replies 3
Last reply 5/9/2012 - 7:30am

Liver function is getting better.  He has now developed hemolysis in addition to diabetes.  The darned steroid is kicking his butt.  They have now pulled Temodar off the table.

So frustrating.  The steroid has caused loss of strength so it makes it very difficult for him to do the stairs.  Imagine, a 41 year old man who was recently training for his black belt and he can now barely do a flight of stairs.  He has lost all of his toning and conditioning. 

We know his time is limited so we are trying to make the most of every day we have been given.

We don't know how strong we are until being strong is the only choice we have.

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