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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lhaley's picture
Replies 23
Last reply 2/22/2012 - 9:09pm

Went today to get my stitches out from the crainectomy along with the pathology and suggestions.

Found out that the pathology said that the tumor was already 70% gone before the surgery!!!!  The issue was all edema.  While originally it was to be more radiation ect they have decided that the tumor bed is gone.  They have started weaning the steroids tonight and am now at 3mgs. Will take about 3 weeks with hopefully no issues.

My body is destroyed and will take quite a while to get back strength. I have both an occupational therapist and a physical therapist. I know it will take time but how excited I am with their news!   My next appointment with the nuerosurgeon in 3 weeks, as of today he felt that I had no nuerological damage.  Last Pet was Jan 3rd and at that time was NED. 

The next few weeks I will be working so hard to get my strength back.

I think we flew home from Charlotte instead of the car driving.  Dance with us tonight.


Originally stage 1A in 1979

Stage IV 2006 - 7 recurrances

Brain Met - Oct 2011 been dealing with steroids since then

Now Feb 15th  NED!!!!

There is hope

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bdhf's picture
Replies 11
Last reply 2/22/2012 - 9:03pm

Would love some advice!!!  After having the 3 cm tumor removed from my brain in December, whole brain radiation just completed due to a new 4mm brain tumor, my docs are pushing for resection of a lung nodule that was found in December when all this started and hasn't grown at all.  I have had 2 bronchoscopies that say that there are no abnormal cells but the nodule is so deep in the lung the docs say they can't be 100% they got to it during the procedures.  I really do not want a resection.  The nodule didn't show on the PET scans, just CTs.  I feel in my heart of hearts (for whatever that is worth) that it is not another tumor, especially since it has grown at all in 2 months.  

What would you do?  



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alabama girl's picture
Replies 8
Last reply 2/22/2012 - 8:24pm

I was diagnosed with stage 3 melanoma in Nov after my wle and snb surgery. It was in 2 lymph nodes and was 9mm deep on my side. They wanted me to have radiation on my side since it was so deep, but none on the lymph nodes. They want me have a CT scan and labwork every 3 months but now the radiologist wants me to have an ultrasound  on my lymph nodes also every 3 months. What i have read does not mention ultrasound at all? Isn't the ct scan enough? She says it may catch something the CT misses. Has anyone else had ultrasounds? Why do some people with stage 3 have chemo and some not? Just confused and hoping someone has some answers.


alabama girl

. Don't tell God how Big your storm is, Tell the storm how BIg your GOD is!

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yoopergirl's picture
Replies 11
Last reply 2/22/2012 - 8:06pm

I had my 3rd infusion of ipi on Monday, my labs were all good so they proceed with the treatment even though I had the chills and achy feeling, the nurse gave me tylenol and that seemed to help. Yesterday was a bad day along with the chills I developed diarrhea and still have it today so now is the time to call the doctor, I know he said to take immodeum and I do have it on hand but still want to talk to the doctor about checking for colitis, is there a blood test or cat scan, what do they do? I am so glad that I happened across this site it has brought so much information for me since my doctor is not familiar with Yervoy.   Will let you know what he says to do, can't call for another hour since Wisconsin is an hour behind us.    yoopergirl

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cwu's picture
Replies 10
Last reply 2/22/2012 - 7:50pm

Hi again,

Dad's oncologist mentioned during his last visit that radiation may help with stopping the growth of the tumor and bleeding.  But it can only be done at only a few spots since his tumors are so numerous on his leg.  Has anyone used radiation and what does it involve? Is it painful, what is recovery like, does it help control the tumor and for how long? Should we save this as a last resort for tumors that are out of control?

Thanks again.


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Laurie from maine's picture
Replies 2
Last reply 2/22/2012 - 1:48pm
Replies by: himynameiskevin, jmmm


I am going for my second ippi infusion this week.   I had been optimistic and still am, but I have had three tumors now appear on my hips they are not surface ones but deeper and feel like the size of a grape.  I wonder have others had tumors appear while on ippi and then disappear, or is this a bad sign that it is not working for me?

I have a tumor in my lung which seem to be getting slightly bigger just judging by my breathing  but now seems slightly better, or I could be just use to it, but at least it doesnt seem worse.


laurie from maine


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Anonymous's picture
Replies 1
Last reply 2/22/2012 - 10:14am
Replies by: Shelby - MRF

Just tried to update my existing profile which I've been able to do successfully for years.  Now however, can't even get that page off the menu - gives the following error message - did something happen during the last round of MPIP updates a couple weeks ago??  Thanks for any assistance in fixing this issue!

Page Not Found

We're sorry!

The page you are looking for may not exist or may be under construction. Go Home to try your path again, or use our Search function to find the correct page.

Thank you! 

Luke 1:37

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Replies by: boot2aboot

"The clinical use of BRAF inhibitors is being hampered by the acquisition of drug resistance. This study demonstrates the potential therapeutic utility of the HSP90 inhibitor (XL888) in 6 different models of vemurafenib resistance. Experimental design: The ability of XL888 to inhibit growth and to induce apoptosis and tumor regression of vemurafenib-resistant melanoma cell lines was demonstrated in vitro and in vivo ."


The heat shock protein-90 inhibitor XL888 overcomes BRAF inhibitor resistance mediated through diverse mechanisms

  1.  * Corresponding Author:
    Keiran S.M. Smalley, Molecular Oncology, The Moffitt Cancer Center, 12902 Magnolia Drive, Tampa, FL, 33612, United States


This may be a way to get a complete response, with the addition of a HSP90 inhibitor.

This Paper is for BRAF positive Melanoma Patients.


Best regards,


Jimmy B

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natasha's picture
Replies 18
Last reply 2/22/2012 - 9:12am

How big is chance for 2mm Breslow unulcerated Clark 2 melanoma to spread to Lymph nodes?...How it was in your situations? I am going to do  SNB and scared to death..:( Thanks again and again for all you support and information yougiven me.

I am keeping you in my prays.

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sj541's picture
Replies 17
Last reply 2/22/2012 - 8:27am

Hi - I am new to this board but wanted to share my story to see if there is anyone who could offer any advice/suggestions.  My sister (45) was diagnosed with Stage 3 in 2009, did interferon for a year and scans were coming back clean until August 2011 where a spot on the lung was seen.  She did very well on the interferon, some hair loss and fatigue but was still able to  live life.  She started Yervoy (ipi) in September and finished her last dose in mid November.  The first 2 treatments she did great but around the 3rd one she had developed a pretty severe cough.   Around Thanksgiving she was battling severe exhaustion.  By mid December she was in the hospital getting an IV for nourishment as she was so exhausted she couldn't eat.  By end of December she was back in hospital with pnemonia.  Her scans continue to show growth.  We were really hoping to get her into a clincial trial at Sloane Kettering in NYC for the anti PD 1 trial drug but she's too weak to qualify at this point.  She is now home under the care of hospice and has difficulty eating due to her cough.  We are trying to get her to eat but it's hard. We are still praying the Yervoy drug can help but at this point I just don't know.  End of Jan will be 20 weeks on the Yervoy which is known to take a while to work.  Is there anything else we can be doing for her at this point to help her get her strenght back to continue to fight this...I refuse to give up and have this horrible disease take my sister.

thank you


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HelperDaughter's picture
Replies 5
Last reply 2/21/2012 - 11:46pm

Just an update.  we took my mom to hospice today.  history: spot removed in 2003, diagnosed at stage iv in June 2011 by a bump under the biopsy site and a bump in her lymph node.  Turns out it was in both lungs, her small intestine, and her brain (in addition to her lymph node and leg).  All under 3 cm.  She had SRS for a < 1 cm lesion in her brain in the fall, then a craniotomy in December for a brain lesion that was bleeding.  She was bleeding internally from the small intestine tumor, needing 2 units blood weekly, and was risking an obstruction, so she went ahead with a bowel resection January 5. 

I never imagined my mother would never come home.  She suffered so many horrible complications following the bowel surgery.  my understanding is that she developed a bowel leak/fistula so they had to put a drain in and she wears a sac that drains out her bile.  They were unable to fix it despite two endoscopic procedures that are apparently cutting edge at SK (they go in endoscopically and put in these high tech clips that close the tissues and dissolve after the hole heals).  totally neat (if it worked).

she received the most excellent, caring, compassionate care at SK.  i cannot recommend it highly enough.

Anyway, we had scans this week that showed that the cancer recurred in the brain at the spot where it had been before, as well as multiple other spots in her brain, and also went to her stomach and adrenal glands, where it had not been previously.  SK docs told us they would do whatever we wanted to do, but we knew it was time.  my mother expressed two weeks ago that she did not want any more brain surgery, and WBT is crap, from what i understand.

 the new brain mets are what's going to kill her.  she's not all there anymore, and this has happened within the past week to week and a half.  the doctor told us that in essence, because the tumors were in the frontal lobes (bilateral) she was essentially experiencing a lobotomy (i was a little surprised he used that word but hey, i guess it gets the point across).  she can answer yes and no questions (are you in pain being the most important one) but is totally iffy on other stuff.  she recognizes us and can tell us she loves us, for which i continue to be grateful. 

i feel a little weird.  i seem to naturally fall into talking to her as though she's a three year old. she doesn't answer anything other than yes or no questions.  she *seems* to like it when i will say a funny rhyming phrase to her, and she will say it back.  for example, we were talking about it snowing today and i said, "oh no, look at the snow" kind of to myself, just to be silly.  I then turned to her and said it and her face all lights up and she repeats, "oh no, look at the snow." 

eh.  cancer sucks.

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cwu's picture
Replies 7
Last reply 2/21/2012 - 11:44pm
Replies by: dearfoam, cwu, o2bcheri, LynnLuc

Hi everyone,

I wanted to give an update on my dad. My dad finished his last dose of Yervoy around Nov 21 and about a week after he was hospitalized for a severe reaction. He had problems moving his hands and feet and was confused and delirious. He was treated with steroids and salt to stabilize his salt level. The doctors think Yervoy caused imflammation of a part of his brain which controlled his salt level and caused his neuro problems. That was in late Nov/early December. He got out of the hospital and thankfully recovered. The bad news is that Yervoy doesnt seem to work for him. It has been about 24 weeks since he started Yervoy and the tumors on his leg  have gotten bigger. We have decided to stop pursuing treatment since there is nothing promising for him and he doesnt want to go to the hospital. His lesions are getting bigger and they have started to bleed. His MM is still contained in his lower leg.

We are trying to get home hospice to help with the tumor dressing but I was hoping if anyone has advice on how to take care of tumors that are growing and oozing blood. Is it normal for the tumors to bleed? Dad lives with my sister and my sisters and brothers take good care of him so any advice on caring for his tumors and/or hospice is appreciated. I am so afraid of what is coming and dont want him to suffer. I hate this damn disease so much.

Thank you everyone for your advice and support.


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yoopergirl's picture
Replies 16
Last reply 2/21/2012 - 8:46pm

I will be having my third infusion tomorrow and the past 2 days I have had the chills so bad, so am thinking is this due to the Yervoy or did I pick up a bug? Last night about 2 am I shook so bad from the chills that I woke up and took some tylenol and then about 4 am was sweeting so bad had to throw the blankets off, now has anyone had this?? I do have the itching I kinda hope this is just a bug. I will have my labs done before I see the doctor so I assume if it is anything that I should worry about it will show up then. Thanks again, this board has given me so many answers and questions that I have written down for the doctor.    yoopergirl

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Gene_S's picture
Replies 2
Last reply 2/21/2012 - 8:31pm
Replies by: Gene_S, Anonymous

Vemurafenib for Melanoma Approved in Europe

Zosia Chustecka  

 Posted: 02/20/2012

February 20, 2012 — The oral targeted agent vemurafenib (Zelboraf, Roche/Plexxikon) has been approved in Europe for use in the treatment of patients with advanced melanoma whose tumors have a BRAF mutation. The approval was widely expected after the product received a positive recommendation in December 2011 from the European Committee for Medical Products for Human Use.

About 50% of patients with melanoma have this BRAF mutation. A companion diagnostic test, the cobas 4800 BRAF V600 Mutation Test (Roche Molecular Systems), is already commercially available.

Vemurafenib is already available in the United States, where it was approved in August 2011. It is also approved in Brazil, Canada, Israel, New Zealand, and Switzerland. Approval applications are under review in Australia, India, Mexico, and other countries, according to a Plexxikon press release.

Significant Improvement in Survival

The approval was based on a pivotal phase 3 trial (known as BRIM-3) published last year (N Engl J Med. 2011;364:2507-2516), which showed a significant improvement in overall survival.

This trial was conducted in 675 patients with previously untreated unresectable or metastatic melanoma, who had all tested positive for the BRAF mutation. Patients were randomized to receive vemurafenib or standard treatment with dacarbazine.

The trial was halted early because of "compelling efficacy data," according to a Plexxikon statement. Vemurafenib reduced the risk for death by 63% (hazard ratio, 0.37; P < .0001).

A post hoc analysis showed that vemurafenib significantly improved median survival, compared with dacarbazine (13.2 vs 9.6 months). Historically, patients with metastatic melanoma have had a median survival of 6 to 10 months, the company noted.

The safety information about vemurafenib notes that the drug can cause a type of skin cancer — cutaneous squamous cell carcinoma; this adverse event has been previously reported by Medscape Medical News. The labeling for the product urges patients on the drug to check their skin and tell doctors about skin changes, including a new wart, a skin sore, a reddish bump that bleeds or does not heal, or a mole that changes size or color. In addition, patients on the drug should avoid the sun, and cover up when they are outside during the day.

Potential adverse events include severe allergic reactions, severe skin reactions, cardiac events such as QT prolongation (which can be potentially life-threatening), abnormal liver function tests, eye problems, and new melanoma lesions.

Common adverse effects include joint pain, rash, hair loss, tiredness, sunburn or sun sensitivity, nausea, itching, and warts.

© 2012 
Medscape Medical News © WebMD, LLC
Heartwire © WebMD, LLC
WebMD Health News © WebMD, LLC
Reuters Health Information ©
Send comments and news tips to

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

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My Mother is Braf negative as well as C-kit negative. She has mucosal melanoma. She just started a reinduction of Yervoy and has her second treatment tomorrow. We are seeing a melanoma specialist in Miami, FL - Dr. Jose Lutsky. My Mom is going on 3 years with this melanoma. Here is a little about her history.


History:  69 yrs old - Primary vulva melanoma braf negative, c-kit negative and negative for ny-eso-1

Yervoy first round stable for 9 month. Recent recurance and moved to spleen.

10/17/2011 large FDG avid  mass gastric antrum 34x36 mm suv=8.6, FDG localization nodule lateral left mid lung pleural based 12mm suv=8.6, at least 4 left lung nodules only the largest of which is fdg avid

1/16/2012  gastric antrum 46x45mm suv=10.5, lateral apect spleen isodense 31mm suv=6.4 w/multiple persispnin hilar nodes 28mm suv=9.6 and 11mm suv=5.1, active pleural base nodule lateral left lung lingula 25mm suv=17.3, adjacent satellite 10mm suv=3.1, large left upper quadrant mass 44x34mm suv=14.0 brain mri - clear

Being that she is beaf and c-kit negative would she be negative for HLA2 or NARS mutations? She I push to have her tested? I need help with a plan B and C. Other then melanoma she is in good shape. Should we look into TIL for her? Take her to Moffitt or Sloan. Any advise would be greatly appreciated.

Thank you!


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