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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yoopergirl's picture
Replies 2
Last reply 3/6/2012 - 7:36am
Replies by: Linny, ElaineLinn

I am so disappointed when I saw the oncoligist today he said no more Yervoy because of my hospital stay and he felt the side effects were severe enough that I could not take the last treatment. I asked him does he think the 3 treatments would be enough, he didnt

 have an answer for me. He just took out the Yervoy pamplet and read from it, he said he will see me in 3 weeks and at time will do a chest xray. I made up my mind I am calling the Melanoma center at UW Madison and see if I can get in to see a specialist there. He tapering me off the prendisone for 5 weeks time and I hope soon I can get my eyesight back to normal, last drops go in on Thursday.  yoopergirl

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scots's picture
Replies 1
Last reply 3/6/2012 - 7:10am
Replies by: MeNDave

I'm currently a year 1/2 NED. Completed is year of interferon and several sessions of radiation. I see my dermatologist every 3 months. Oncologist every 6 months starting this month. Last scan was in December and it was clear. How often should scans be done? Any opinions or advice would be appreciated.


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Anonymous's picture
Replies 6
Last reply 3/5/2012 - 10:48pm
Replies by: Janner, IMAlawMan

Hello everyone,

I had a mole removed and the following pathology report came back:

1) The specimen is a punch biopsy of skin present as as multiple H&E sections on one side. The pathological process is that of a proliferation of melanocytes confined to the epidermis. A single nevomelanocytic nest is also present within the superficial dermis, best appreciated upon the examination with special stains. Lesional cells are arranged in plump nests with foci of pagetoid extension noted. May of the nests are enlarged and demonstrate bridging between adjacent rete ridges. Atypical cells also extend down follicular epithelium to ally. Within the dermis are infiltrative lymphocytes and histiocytes with focal fibrosis.

2) The histologic feature on H&E staining are quite concernIng, with markedly atypical cells a focus of pagetoid extension and prominent architectural disorder. However the overall immunohistochemical staining characteristics are reassuring. Because this lesion extends to the lateral surgical margins and because of its uncertain biological behavior, re-excision to ensure its complete removal and to allow for further histologic evaluation is strongly recommended.

Doctor wants to take more out and says that if it was melanoma, they would have said melanoma.

Any help you guys could provide would be greatly appreciated.

Thank You in advance.

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Lori1976's picture
Replies 1
Last reply 3/5/2012 - 10:45pm
Replies by: Janner

I had a Stage 1 MM resected in 2/2000 and most recently a biospy shows MM insitu.  What are the current recommendations on surgical margins? I will be having additional surgery at the end of the month to make sure they got it all but just wondering what to expect.  I'm sure things have changed in the last twelve years.

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Jan in OC's picture
Replies 22
Last reply 3/5/2012 - 6:38pm

Hi everyone, 

I am struggling to find the words to tell you that Dirk's battle with this horrible cancer is now over.  He passed away in the early morning hours yesterday, 3/3/12.  He was a wonderful husband and father. He was such a good man.  He maintained his sense of humor through every treatment, but at the end, he was just so tired. I  know he is mountain biking up in heaven, but those of us he left behind are very sad.  We have had 25 wonderful years together and I will miss him!

Thank you all for your advice and support during this journey.

Jan and Stephanie, loving wife and daughter

laughter is the best medicine

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94z28joe's picture
Replies 15
Last reply 3/5/2012 - 6:05pm

My doctor just called me and told me he had my results. He said that he took 26 lymph nodes and saliva gland. He said that everything came back negative. Wow! Such a sigh of relief I can a least breath a little bit easier for now. I know I will have to constantly be vigil and be aware of what's going on with my body, but it's such I great feeling getting the all clear after your life's been completely turned upside down by finding out you have stage 3b melanoma. Thanks everyone ont this board for your support and stories they are such a huge help!

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gtown's picture
Replies 8
Last reply 3/5/2012 - 4:33pm
Replies by: gtown, Janner, DonW

went down to Penn for checkup today. No tests or anything (had clear lung X-rays 2 months ago). The doctor who was filling in for my doctor mentioned that the lack of inflamation found around the excision site was not a great sign, she said it showed the body's immune system when fighting cancer would show inflamation. She said this after being pressed by me (I ask ALOT of questions). Has anyone else ever heard of this before? I guess like many of you, I get anxiety ridden when I go for tests, checkups etc. I have  real up and down days leading up to tests etc. Some days I think I'm doomed and other days I feel positive. I'm thinking about seeing a shrink just because alot of people don't want to hear about it. So anyhow has anyone heard of the inflamation and secondly has anyone gone to counseling over this?   

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boot2aboot's picture
Replies 11
Last reply 3/5/2012 - 4:33pm

If anyone is like me, very low on money and can't afford airfare, and incredibly frustrated with the lack of help american cancer society offers -what a joke- i want to share this information with you:

Southwest has a program that will fly you to your cancer treatments

you do have to be able to walk unassisted , but if you can...Here is the info

Call Amanda  Raneri at:



tell them boots sent you

don't back up, don't back down

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I'm wondering if anyone else has both Melanoma and Crohn's Disease? I was diagnosed stage1 MM in 2000, NED until 2/12 when a biopsy showed MM insitu again on my abdomen.  In 2004 I was diagnosed with Crohn's Disease. It has been quite challenging treating an autoimmune disorder with a cancer history. I need my immune system in terms of keeping MM at bay, but it is that same immune system that is overactive in my intestines causing my body to attack itself.  I am not a good candidate for ant-TNF therapies and the immunomodulators also carry a cancer risk.  I am surely not the only one to be diagnosed with both diseases and I'm really searching for anyone with some advice. My doctors are at a loss, despite being treated in a University setting.

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HelperDaughter's picture
Replies 17
Last reply 3/5/2012 - 7:43am

My mom died on Wednesday, February 22, 2012.  I can't believe it.  I really don't know what else to say.  My mom is gone. 

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carolyn.k's picture
Replies 6
Last reply 3/4/2012 - 10:34pm

My husband was diagnosed with stage 4 in April 2011, with mets in both lungs, liver, spleen and femur.  His original primary was on his back, and excised 11 years prior.  He was NED for 11 years; then an unrelated screening showed stage 4 disease.  He presented with just a little nausea and fatigue.  Since there are no melanoma specialists in Sacramento, we traveled to San Francisco and interviewed doctors at UCSF, NCMC and CPMC, and ended up enrolling in a clinical trial at UCSF with Dr. Daud.  Since Thomas is BRAF/NRAS/CKIT  negative, and was 72 at the time of diagnosis, our options were somewhat limited to either Yervoy or the clinical trial.  We chose the clinical trial, which is axitinib + carboplatin + paclitaxel.  He endured 8 rounds of chemo, and has since been on a continuous, maintenance dose of axitinib since November 22, 2011.  His last 5 PET/CT scans show "stable disease" although we do not consider this a victory, as his quality of life is horrible.  On a nausea scale of 1 - 10, with 1 being very mild and 10 meaning vomiting, his nausea usually hovers around a 2 - 3, but has escalated recently, even though he is considered stable.  For the past few weeks, his nausea maintains at about a "5", and he gets little relief from all the usual anti-emetics.  To date, he has tried:  zofram, Emend, compazine, phenergan, reglan, ativan, benadryl, scopolamine patch, Sancuso patch, medical marijuana, acupuncture, fresh ginger tea, candied ginger, licorice root tea, acupressure wrist bands.  Some of these worked to alleviate the post-chemo nausea, but the only thing that gives him any relief at the moment is a combination of ativan+reglan+benadryl.  However, he keeps building up a tolerance to the drugs and we increase the dose (per Doctor's orders) which gives him a little relief.  Dr. Daud believes that most of the nausea is due to his liver disesase:  approximately 50% of his liver is involved and it is not detoxifying his food properly, resulting in the nausea.  I feed him almost exclusively a very healthy, 95% organic diet, to keep pesticides and additives out of his system.  Direct liver intervention, via chemo embolization, or other treatments isn't an option because of the size of his liver mets; it would require a lot of chemo which could damage the remaining healthy liver tissue.  We are considering switching to a PD1 trial, but as it hasn't opened up yet at UCSF, we are waiting.  Does anyone have any other remedies for persistent nausea that we haven't tried?  Any and all ideas, both conventional and alternative, would be welcomed.

Never give up.

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My dad has stage 4 melanoma. Initial diagnosis was found when finding two tumors in his brain - 2 craniotomies, WBR and gamma knife have been his treatment methods so far. They cannot find his original source and as of now do not see any other signs of melanoma in his brain or the rest of his body. Next set of whole body scans scheduled for end of March.

His Dr. gave him the option of taking Temodar as a "preventative" measure. He could either do a strong dose x number of days straight and then take a break or take a lighter dose daily for 30 days. Radiation was really rough on him and he's just now starting to feel better again (although still has trouble with eating due to the taste of food) Although we'd rather he not sit back and just wait for the cancer to show up again, he's hesitant about taking the Temador because he's worried about the side effects and how they will make him feel. For those of you taking/who have taken Temodar, what have your side effects consisted of and how bad? Also, what type of a dosing schedule were you on? Daily for a month straight or larger dose x number of days straight then break?

 Thank you for any feedback - I'd really like him to "try" the Temodar but he's really worried about the potential side effects.

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yoopergirl's picture
Replies 8
Last reply 3/4/2012 - 10:46am

After my 3rd infusion I developed diarrhea. chills and a high fever, went to the ER last Thursday and was admitted. Pumped with antibiatics and fluids to get this fever under control it was 103.6 so that is high for an adult. They were in contact with my oncologist while I was there since he was 50 miles from the hospital that I was in. I also developed a prblems with my eyes and am being treated for that with predisone drops along with 2 others. I am now on predison orally also, I really didn't want that but he insisted and I am felling better, already am being tapered down from 40mg 3 times daily to 20 mg 3 times daily and then on Friday will br 10 mg 3 times daily. I was suppose to travel today to see him but we had a bad winter storm so rescheduled for Monday. My last infusion is suppose to be March 12th so on Monday will find out if that is possible. Just letting you know where I have been. Yoopergirl.

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boot2aboot's picture
Replies 12
Last reply 3/4/2012 - 12:22am


For all of us Braf + people we might soon one day be able to treat our mel like a chronic condition:



Vemurafenib resistance is characterized by a diminished apoptosis (programmed cancer cell death) response. According to the researchers, the balance between apoptosis and cell survival is regulated by a family of proteins. The survival of melanoma cells is controlled, in part, by an anti-apoptotic protein (Mcl-1) that is regulated by a particular kind of inhibitor.

Their current findings, tested in six different models of vemurafenib resistance and in both test tube studies and in melanoma patients, demonstrated an induced apoptosis response and tumor regression when the XL888 inhibitor restored the effectiveness of vemurafenib.

The study appeared in a recent issue of Clinical Cancer Research, a publication of the American Association for Cancer Research.

"The impressive clinical response of melanoma patients to vemurafenib has been limited by drug resistance, a considerable challenge for which no management strategies previously existed," said study co-author Keiran S. M. Smalley, Ph.D., of Moffitt's departments of Molecular Oncology and Cutaneous Oncology. "However, we have demonstrated for the first time that the heat shock protein-90 (HSP90) inhibitor XL888 overcomes resistance through a number of mechanisms."

The diversity of resistance mechanism has been expected to complicate the design of future clinical trials to prevent or treat resistance to inhibitors such as vemurafenib.

"That expectation led us to hypothesize that inhibitor resistance might best be managed through broadly targeted strategies that inhibit multiple pathways simultaneously," explained Smalley.

The HSP90 family was known to maintain cancer cells by regulating cancer cells, making it a good target for treatment. According to the authors, the combination of vemurafenib and XL888 overcame vemurafenib resistance by targeting HSP90 through multiple signaling pathways.

There was already evidence that HSP90 inhibitors could overcome multiple drug chemotherapy resistance mechanisms in a number of cancers, including non-small lung cancer and breast cancer. Because XL888 is a novel, orally available inhibitor of HSP90, the researchers hoped that it would arrest the cancer cell cycle in melanoma cell lines.

In their study, the inhibition of HSP90 led to the degradation of the anti-apoptopiuc Mcl-1 protein. The responses to XL888 were characterized as "highly durable with no resistant colonies emerging following four weeks of continuous drug treatment." In other studies not using XL888, resistant colonies "emerged in every case," they reported.

"We have shown for the first time that all of the signaling proteins implicated in vemurafenib resistance are 'clients' of HSP90 and that inhibition of HSP90 can restore sensitivity to vemurafenib," concluded Smalley and his colleagues. "Our study provides the rationale for the dual targeting of HSP90 with XL888 and vemurafenib in treating melanoma patients in order to limit or prevent chemotherapy resistance."

Provided by H. Lee Moffitt Cancer Center & Research Institute

don't back up, don't back down

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laurieformike's picture
Replies 2
Last reply 3/3/2012 - 7:51pm
Replies by: DonW, laurieformike

Update on my husband, he had Cyberknife in mid August, 2 treatments, early September had seazure. He has been on Zelboraf since late October, off and on to a reduced dose, now 2 twice a day. Had WBR for two weeks 10 treatments, in December finished the 23rd. Good Pet scan late January they were all srinking liver, lungs and nodes. Then MRI mid Feburary, not good more mets and the first one treated in August was bigger, making trouble with the right side of body, no arm movement & can't walk alone. The Radation sergon said he could help him by doing Cyberknife again on the one's causing problems. So he is now scheduled for next week, maybe two treatments again. The MRI showed he could also have new ones. I'm so freaked out that he is going to have more issues. Like the first time more swelling or something worse. He's been on anti-seaure since September. Feel so bad for him. I was so elated when the Pet Scan came back good, but I knew something was wrong cause he stopped eatting.

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