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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pfcresearch's picture
Replies 2
Last reply 11/20/2012 - 6:18pm
Replies by: pfcresearch, Anonymous

Good afternoon.

Please forgive the intrusion.

I am inviting people who are currently diagnosed with Stage III Melanoma to participate in a telephone interview to discuss how you feel about some of the treatments you may or may not have tried.

The interview will be conducted via telephone, at your convenience. The interview will last no more than sixty minutes; each participant will be paid an honorarium of $100 as a thank-you for your time and trouble.

I promise that this is not a sales presentation of any sort--strictly medical opinion research.

If you think you might like to participate, please call me at 212.289.0087 (of, if you prefer, please respond by email with a number where I can reach you).

I promise that this is not a sales presentation, of any sort--strictly medical opinion research. You will not be asked to try any treatments or therapies. I have been in the business of medial opinion research for more than 32 years. I can assure you that all participants will be treated with dignity and confidentiality. From our experience, participants are always pleased to join in on these studies.

Thank you, and best regards,

David Leonard
Director
pfc Medical Opinion Research
New York, NY
212.289.0087
pfcresearch@verizon.net

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jukst9's picture
Replies 2
Last reply 11/20/2012 - 6:05pm
Replies by: jukst9, Janner

Hi -

I had a deep shave biopsy node on a mole appx 4mm wide and 2mm in length.  The report has me terrified, as do the doctors, as they feel a dermopath should re-read the slides based on the info provided, so that is scaring me.  Here is the original result:

 

Clarks dysplastic nevuse, compund type, inflamed.

Unusual with features of partial regression.

Margins negative for lesion.

In addition to the area of partial regression, the unusual feature is a reare melanocyte above the dermo-epidermal junction.

Because of these unusual features complete but conservative re-excision is suggested as clinically indicated.

 

Does this mean I have melanoma?  The surg-derm seemed concerned that there was no detailed info in the report and wants to have a dermpath re-read.  Please help!!

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/20/2012 - 5:03pm
Replies by: Anonymous, polo, Janner

Hello My special someone has been diagnosed and has had a small surgery removing some of this melanoma cancer. I would like to know if anyone who has had similar symptoms can tell me how to communicate with my special someone. Im trying to understand how to support and what I can do to be there for.

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EricNJill's picture
Replies 17
Last reply 11/20/2012 - 4:31pm

It's been a VERY long time since I've been here.  Losing Eric was one of the hardest things I've ever been through in my entire life.  It's only by the grace of God that I made it through the first year, but I'm here.  Today I updated the Cancer Resource List on my blog for patients who are going through treatment.  I hope you find this helpful.

http://melanomasucks.blogspot.com/2012/10/resources-for-cancer-patients.html

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Sharon's picture
Replies 7
Last reply 11/20/2012 - 2:59pm
Replies by: Sharon, marysan, NYKaren, Jim M.

My husband was on and off steroids durning his Yeavoy treatments.  There is no sign of Melanoma PTL!  He has been seeing an Endrocrinlogist and is taking Hydrocortisone as he is not making his own steroids.  He has tried reducing the amount slowly for sometime now and he just drags and has a hard time eating which are the results of Adrenal fatigue. He is curently on 20mg had been on 7 for a while but just was not able to function on that. Wondering if others have had the same problem and at this point he may need to take them the rest of his life. If any of you can offer any help ideas or what else we could do I would really appreciate any help you can offer.  Thank you Sharon 

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

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/20/2012 - 2:56pm
Replies by: Janner

Hi, both my sister and I are Melanoma patients. My sister is overweight ( BMI of 30) and at her last check up the doctor told her she is at risk for diabetes if she doesn't lose weight . He suggested diet and exercise after she asked him to give her something to help her lose. She went to a local weight loss clinic and they prescribed Phentermine- it's a psychostimulant drug in the phenethylamine class ( similar to amphetamine) and works by suppressing appetite.  A doctor runs the clinic, but he seems like it's a fly by night type deal.She insists he told her it's safe with her history of Mel- Stage 1 - 6 years ago.

I'm concerned for her and don't want her to take it as I'm afraid it will bring back her Melanoma. I know people with Melanoma take anti depressants that have similar amphetamine properties ( like Wellbutrin) but does anyone have any experience with this drug or know if it's unsafe for Melanoma patients? Thanks for any info provided.

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Anonymous's picture
Anonymous
Replies 0

Hi, both my sister and I are Melanoma patients. My sister is overweight ( BMI of 30) and at her last check up the doctor told her she is at risk for diabetes if she doesn't lose weight . He suggested diet and exercise after she asked him to give her something to help her lose. She went to a local weight loss clinic and they prescribed Phentermine- it's a psychostimulant drug in the phenethylamine class ( similar to amphetamine) and works by suppressing appetite.  A doctor runs the clinic, but he seems like it's a fly by night type deal.She insists he told her it's safe with her history of Mel- Stage 1 - 6 years ago.

I'm concerned for her and don't want her to take it as I'm afraid it will bring back her Melanoma. I know people with Melanoma take anti depressants that have similar amphetamine properties ( like Wellbutrin) but does anyone have any experience with this drug or know if it's unsafe for Melanoma patients? Thanks for any info provided.

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Jls377's picture
Replies 3
Last reply 11/19/2012 - 11:26pm
Replies by: Jls377, Mandi0280, Valentine

I am looking for any bit of guidance and am so grateful for any responses. My cousin was diagnosed with stage 3C Nodular Melanoma a month ago. He went to his primary to have an infected mole on his neck looked at as was misdiagnosed for about a month and a half before the primary burned off the area and had it biopsied. A lot of time was wasted. He had surgery on his neck to remove the tumor and verify that lymphnodes in the area had been impacted. He then had a second neck surgery to remove a second tumor that appeared after the first surgery. The surgeon said that he wanted to hold off on doing a neck dissection because he may need to go back in with several more surgeries to removed new tumors as they sprout up. They are suggesting a series of radiation for several months. Overall the doctors have been less that optimistic and seem to be taking the attitude that it is so aggressive that they need to treat as it evolves. This includes radiation and then regular ultrasounds/pet scans to catch any new tumors and then they would do additional surgeries. I am really looking to hear feedback on any successful treatments people have experienced. Also what ones to steer clear of. There is also a thermotheapy that has come up as an option. The doctors have told him that he is too far along in the staging to do many of the cancer trials or chemo. Any feedback would be so helpful! Positive stories would be uplifting!. I am open to hearing about any and all treatment options including more holistic approaches. Thank you for taking the time to hear our story.

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tgro97's picture
Replies 5
Last reply 11/19/2012 - 11:06am

Hello all,

 

I am new to this board and hoping to contribute in the future.  At this point I am hoping for some feedback as we are still learning about this disease.

My brother is 37 and a previous occular melanoma patient.  4 years clear after his treatment..  That was 2 years ago.  Last week he was diagnosed with stage 4 liver melanoma.  We are in NYC and he was diagnosed at a city hospital by a very compitant oncologist.  The Oncologist is recommending a high dose (10mg) 6 dose treatment regimem of Yervoy -- IPI.   We are talking to Sloan and unfortunately it is taking a while to get an appointment.  We have heard throught the grapevine that they also recommend this level of dosing.  Without a second opinion, we turned to another Oncologist at a top NY teaching hospital.  This person comes highly recommended and they recommend a totally different course of therapy.  Yervoy at 3mg for 4 doses, take a scan, see the results and then wait an additional 8 to 12 weeks without additional therapy and run a scan again.

 

Stage 4 is very scary.  I don't need to tell that to anyone on this board.  I need help understanding the best course of therapy from the patient perspective.  Has anyone tried this high of a dose?  if so, was it tolerated?  Was 3mg effective at slowing the growth.  If it wasn't, what was the next step.  Any insights would be greatly appreciated.

Tony

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Anonymous's picture
Anonymous
Replies 7
Last reply 11/19/2012 - 4:40am

My mother was diagnosed with metastic melanoma this past summer with 3 lesions on her liver and possible lung spots. She had her fourth and final yervoy treatment last week and at that time the doctor said the tumor in her liver had continued to grow. It has definitely grown during treatment. Instead of waiting 3 weeks after final yervoy treatment for scans we've moved scans up a week, in a few days. I'm looking for ideas, thoughts about what is next if yervoy hasn't worked. Surgery is not an option. Wondering if radiation would shrink tumor in liver. Any help is most welcome!

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DeniseK's picture
Replies 6
Last reply 11/19/2012 - 2:57am
Replies by: DeniseK, POW, Phil S

Hello All,
I'm meeting with my onc tomorrow to discuss treatment options. I have to wait a week or two for BRAF testing to come back but they want me to start something right away. I've been trying to do research on what my best options are but its been difficult since my laptop was stolen last week. Anyway I have 9 lung met and 4 sub qs. I know zelboraf souls be best if I'm BRAF positive but what would you suggest until then? What has worked for you? I know everyone is different but any input would be appreciated. Can you also include side effects you had?

Thanks for your help :)

Denise

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

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islandbreeze's picture
Replies 7
Last reply 11/18/2012 - 10:27pm

Hello I wanted to thank all that replied and brought relief to this distressed mother...I am in Nassau Bahamas and Ive been referred to a surgeon/onc next friday 16th nov. He will most likely want to biopsy my armpits and groin. I am just concerned with side effects or lasting effects from these incisions. I am anxious and can feel panic within me and although Im on anti anxiety & anti depressants my mind and nerves are beginning to freak me out.so im talking it out with you all and hope to get some experienced patients stories replies.

Ive no one with me but I am staying at a cancer care center where other patients are in treatment...watching them I admire thier courage,right now I dont feel strong and I dont know if I can rise up and fight being depressed and scared. I want to live for my children..and I miss them so much my mom is taking care of them while im here.

Besides MM Ihave other physical problems that need to be addressed..and really want a cat scan so they can see whats all going on and get treatment for it..

Im exhausted and fatigued all the time and it takes so much effort to move about.When evening comes I have had enough of the day even if I havent done much..just walking from my room to the tv area where i get online takes it toll.

Anyway, 

I pray for strength for the patients on this site as well as my own.

Time is a versatile performer. It flies, marches on, heals all wounds, runs out, longer then rope and will tell.

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awillett1991's picture
Replies 4
Last reply 11/17/2012 - 7:20pm
Replies by: Tina D, awillett1991, POW

Long story short - 7 weeks went ago off Zelboraf while still responding, and had only tiny tumor in my heart, and brain and rest of body was all clear. Since then diagnosed w 2 brain mets, 4mm new and 6mm that had been supposedly destroyed by Zel, but same tumor regret. Had SRS last week for those.

Finished 3rd Round Ipi Monday, then put back on Zel, Wednesday due to regrowth of cardiac met.

Any advice on what to expect side effect wise w these 2 at the same time? Had loads of Zel side effects the first time around incl grade 4 rash.

Thanks.

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JerryfromFauq's picture
Replies 11
Last reply 11/17/2012 - 12:02pm

Putting New Melanoma Drugs to Work in Community Practice
Elsevier Global Medical News. 2011 Jul 18, JS MacNeil

Euphoria - there is no better word to describe the mood in the melanoma sessions at ASCO. For the first time ever, oncologists have two new drugs that can prolong the lives of patients with advanced melanoma. They also have a host of questions as to how to bring ipilimumab and vemurafenib into community practice. We asked four experts during the meeting for their thoughts on what comes next:

• Dr. Paul Chapman of Memorial Sloan-Kettering Cancer Center in New York; lead author of the BRIM-3 study of vemurafenib vs. dacarbazine in newly diagnosed patients.

• Dr. Jedd Wolchok of Memorial Sloan-Kettering Cancer Center; lead author of the phase III trial showing the efficacy of ipilimumab plus dacarbazine vs. placebo plus dacarbazine in newly diagnosed patients.

• Dr. Vernon K. Sondak, chair of cutaneous oncology and director of surgical education, H. Lee Moffitt Cancer Center & Research Institute in Tampa.

• Dr. Alexander M.M. Eggermont, general director of the Institut de Cancérologie Gustave Roussy in Villejuif, France.

Question: Should ipilimumab and vemurafenib be used together?

Everyone we asked said no, not outside of a clinical trial at least for now. No one knows whether the combination is safe or effective.

Dr. Chapman: We are about to start a phase III trial combining these to see if it is safe and making sure that vemurafenib does not inhibit the effect of ipilimumab. We all hope that this will result in sustained complete responses. That is what we all are looking for.

Dr. Wolchok: The natural next step that many of us are considering is how to integrate these two forms of therapy together. Vemurafenib directly targets the tumor by inhibiting BRAF kinase; ipilimumab really treats the patient by starting an immune reaction that hopefully will control the disease. These are very different approaches to cancer therapy. They are in no way mutually exclusive, and I believe them to be quite complementary.

I think it is important that the combination be explored in a clinical trial because I could make a list of reasons why these two drugs would work together; I could also create a list of reasons why they might not work well together and may even be antagonists. So, I think before oncologists begin to combine potentially approved medications outside of clinical trials, we [need to] have some idea that this is a safe and effective way to go. Until then, I think monotherapy is the best path forward outside of a clinical trial.

Dr. Sondak: If you combine ipilimumab with something else, sometimes the side effects aren't what you expect. Don't just take a patient and give them both and see what happens. That's not safe. You have to do this in a controlled way a research study as quickly as possible because it is the obvious next question.

Dr. Eggermont: I think at this point they should wait at least for the safety data on the combination.

Question: So which agent would you use first in a patient who has a BRAF mutation?

Again, there was unanimity - with respect to the patient who is very, very sick.

Dr. Chapman: I think that is a question is that is still open. Where I am on this question right now is that for a patient who is relatively well, who has a fairly good performance status, I would think about using ipilimumab first because that person may have time to respond to ipilimumab since it does take 3-6 months to have the full effect. On the other hand, a person who has a poor performance status and is sick and does not have time to respond to ipilimumab I would treat that person up-front with vemurafenib.

Dr. Sondak: I think there is going to be uniform agreement throughout the melanoma community that if you have a BRAF-mutant patient with widespread disease, symptomatic disease, high tumor burden that person is going to go immediately on to vemurafenib because nothing else is going to get a rapid response, a rapid resolution of symptoms.

The question is going to be [what to do] for 80% of patients who are BRAF mutant but have much less acute symptomatic disease. Maybe they have some lung metastases, some subcutaneous nodules, [and] they can't have it all removed surgically but they are still not in dire straits. And I think at our institution we are going to be very motivated to continue to use the immunologic therapies - the IL-2 for some patients, and ipilimumab for many patients because of the possibility that they will get a big benefit at the other end, not an immediate benefit but a long-term benefit. And then if that doesn't work, I think vemurafenib.

Dr. Eggermont: BRAF-positive patients especially the ones that have rapidly progressive disease or bulky disease that have little time - they will all be treated up front with the BRAF inhibitor. The BRAF-positive patients that have very small disease that is not rapidly progressing could actually also be managed by ipilimumab on first line and only on progression be managed by the BRAF inhibitor because ipilimumab needs more time to work with patients, to kick into activity and into an antitumor effect. ... All BRAF-negative patients would see ipilimumab in first line. That is for sure.

Question: The ipilimumab trial paired ipilimumab with dacarbazine. Is DTIC still an option?

Dr. Wolchok: Looking at the result as someone who has been taking care of patients with melanoma using ipilimumab for several years, I think it is still unknown whether dacarbazine should be added. My own opinion would be to oncologists in the community that if they are going to give ipilimumab at 3 mg/kg to stick with the monotherapy label because we really don't have data comparing ipilimumab with dacarbazine alone at that dose. And so I think we stick with what we know produces an overall survival benefit.

There are reasons to imagine the addition of dacarbazine could make results better by killing some cancer cells and releasing some antigenic debris that would serve as a target for the immune system. Chemotherapy can also be thought of as changing the tumor microenvironment, which might be advantageous, but chemotherapy could also be immunosuppressive. So we could really make a case either way that dacarbazine added to or detracted from or left things just the same.

Question: Will interleukin-2 still have a role in melanoma treatment?

Dr. Sondak: I am still going to use IL-2, and it makes the most sense if you have someone who uses IL-2 most of time, you will want to use that first before you use anything else. Why? Ipilimumab is tough on the patient. We want them in as good shape as possible. ... We know if they get IL-2 first and then get ipilimumab; the results are just as good, if not better. We don't know the opposite way. And we also know that a lot of people on ipilimumab get side effects. They wind up on steroids and other immunosuppressive drugs that would make it very difficult to put them on IL-2.

Vemurafenib is going to change a lot of things. A lot of people are too far gone to have surgery, too far gone to have IL-2. Now we have BRAF mutant melanoma [patients] who will get vemurafenib, and shrink down... If we could keep a close eye and figure out when is right time, we are going to do more surgery and maybe IL-2 in those patients because we are going to restore them to place where IL-2 is going to have more room to work. But it's not going to be 80% of people getting IL-2. It is going to be a very restricted group of people treated by a very specialized group of doctors.

Dr. Eggermont: I think IL-2 will move down in the options list. IL-2 will remain as an option in second or third line, and IL-2 will also be an option in combination with ipilimumab because [Dr.] Steve Rosenberg already did a trial in 36 patients ... and the majority of the complete responders are alive 6 years and longer and are still in complete remission (ASCO 2010, Abstract 8544). The combination of IL-2 and ipilimumab will be relaunched, I am sure.

Question: And interferon - Where will it fit in?

Dr. Sondak: We don't know how long we should treat people, how intensively, and how we should combine the new and the old, and the data that we have just doesn't sort it out. On the other hand, if you look at the whole landscape, it actually makes adjuvant treatment with interferon more important now than it used to be.

It's very clear that interferon treatment does delay recurrences in a substantial fraction of patients. It may not cure many people, but it delays recurrence in quite a few people, and right now today we are so much better off than we were in melanoma 2 years ago and I have no doubt that 2 years from now just with stuff we heard about at this meeting we will be much more clear on how do we use how do we take care of side effects not to mention other new exciting drugs that we hope 2 years from now will start to be available.

In the past we debated, does it even matter that we delay recurrence. The ASCO answer should be, "It absolutely matters to our patients." So interferon and any form of adjuvant therapy is suddenly a bridge. It is a shaky bridge - made with some ropes and a few planks - it isn't very sturdy to walk on, but we're trying to get from here, one place where it was safe to another place where hopefully we are better off and not at the bottom of ravine. It's real exciting - not just the data we already have but for the future and how many patients this will affect positively.

Dr. Eggermont: I think you need to separate the new drugs from the question, what are we going to do in adjuvant? In adjuvant right now, we will still have to wait for about 2.5-3 years for the outcome of the EORTC trial that randomized in double-blind ipilimumab vs. observation in patients with high-risk lymph node positive disease. That answer about ipilimumab in the adjuvant situation will not be there before 2.5 years from now. That means that until then there is only one kid on the block in the adjuvant setting, which is regular interferon, and the currently novel approach of pegylated interferon.

I'm me, not a statistic. Praying to not be one for years yet.

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SidneyGracie's picture
Replies 2
Last reply 11/17/2012 - 10:14am
Replies by: SidneyGracie, lhaley

My husband has finished whole brain radiation for 17 brain lesions and is being treated with zelboraf for approximately 30 liver lesions and 12 lung nodules.  The zelboraf started in early Sept and the radiation began about a week later for 10 days.  His head was very sensitive to the radiation and he got the normal redness, itching, and discoloration.  However, now he has developed a very bumpy surface on his forehead.  Doctors haven't seen that reaction before, but think it is because of the zelboraf making the skin more sensitive to the radiation.  Does anyone have experience with this type of rash or skin problem? We are currently using Eucerin on the surface of the forehead.  By the way, he is responding well to the Zelboraf.  Nodules in lungs almost gone.  Liver lesions have shrunk a lot and liver is back to normal size.  Brain lesions have shrunk significantly and there are no new lesions anywhere.

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