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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Anonymous's picture
Replies 17
Last reply 6/22/2012 - 4:13am
Replies by: LynnLuc, Charlie S, Anonymous, Janner, Gene_S, washoegal

Are my odds of another higher than for my siblings since I've already had one?  We have same skin type, same type of moles.  We have skin that tans, doesn't burn easily.  We do freckle and have multiple freckles but not that many moles.  I am a little confused as to how increased my odds are and how carefully I should be watching for a new one after my in situ diagnosis?

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Hello,

New to the board and looking for some guidance.  My father was diagnosed with Stage IV Melanoma in January of this year.  He has been on 4 treatments of Paxil/Carboplatin, but recently his scans showed that the treatment was no longer working.  We are trying to get him into a PD-1 trial, but live in Iowa so the travel to the coasts to participate is difficult.  If we are unable to get inot a PD-1 Trial, we would like to consider Yervoy, but want to understand the risks.  His doctor also recommended Tamazolide, which I'm not thrilled about as it is not very effective.  Any stories/recommendations?  Wish there was a crystal ball.....

Thanks,

Jessica

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JennR's picture
Replies 3
Last reply 6/21/2012 - 5:14pm
Replies by: Janner, Anonymous

I had a suspicious mole removed at the derm's office a couple of weeks ago and got the results today.  The doctor called me personally and said that it was concerning, but he didn't feel it was cancerous and because of my family history of melanoma, he wanted to see me every four months.  I asked for a copy of my report and now I'm reading conflicting things online.  It sounds like some doctors recommend going in and getting better margins.  Here is what my report says:

PATHOLOGIC DIAGNOSIS:

Lentiginous Melanocytic Nevus, Compound Type, Irritated (Compound Melanocytic Nevus with Architectural Disorder)

 

MICROSCOPIC DESCRIPTION:

This is a compound nevus.  There is pigmented parakeratosis present.  There is architectural "disorder" characterized by a lentiginous proliferation of melanocytes between irrecgular nests of cells along the dermal-epidermal junction, highlighted by MART-1/MelanA immunohistochemical staining.  There is underying fibroplasia of the papillary dermis.  The intradermal component is bland appearance and matures with depth.  Original and deeper sections were reviewed.  (Compound Clark's Nevus or Compound Dysplastic Nevus)

 

Can anyone help me decipher what this really means?  Do I need to get a second opinion or just follow his recommendation of being seen every four months?

Thanks in advance for your help!

Jennifer

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I had a suspicious mole removed at the derm's office a couple of weeks ago and got the results today.  The doctor called me personally and said that it was concerning, but he didn't feel it was cancerous and because of my family history of melanoma, he wanted to see me every four months.  I asked for a copy of my report and now I'm reading conflicting things online.  It sounds like some doctors recommend going in and getting better margins.  Here is what my report says:

PATHOLOGIC DIAGNOSIS:

Lentiginous Melanocytic Nevus, Compound Type, Irritated (Compound Melanocytic Nevus with Architectural Disorder)

 

MICROSCOPIC DESCRIPTION:

This is a compound nevus.  There is pigmented parakeratosis present.  There is architectural "disorder" characterized by a lentiginous proliferation of melanocytes between irrecgular nests of cells along the dermal-epidermal junction, highlighted by MART-1/MelanA immunohistochemical staining.  There is underying fibroplasia of the papillary dermis.  The intradermal component is bland appearance and matures with depth.  Original and deeper sections were reviewed.  (Compound Clark's Nevus or Compound Dysplastic Nevus)

 

Can anyone help me decipher what this really means?  Do I need to get a second opinion or just follow his recommendation of being seen every four months?

Thanks in advance for your help!

Jennifer

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ringo412's picture
Replies 2
Last reply 6/20/2012 - 4:00pm
Replies by: MikeWI, Anonymous

hi , i am a spouse of a stage 3b melanoma patient, he has been on treatment with interferon for 4 months, he has lost 33 lbs (weight is 157), is this amount of weight loss normal, he is getting too thin, the doctors have took him off the interferon shots for a week, he goes next week to see his oncologist, im just concerned that this weight loss will get even worse, has anyone been thru this with the weight ? im very concerned, i know he needs to take this, he has 8 months left, what do they do in a situation of weight loss?

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Cindy33's picture
Replies 9
Last reply 6/20/2012 - 12:41pm
Replies by: Janner, Cindy33, ALM, Fen, Gene_S

Hello All,

Thank everyone for posting. I am finding comfort here and realizing I am not alone. I have had 2 primary melanomas and one severely atypical. One SNB, 3 WLE and am scheduled for one more WLE this week. None of my moles looked suspicious to the docs and they have been shocked when they come back melanoma/atypical. I currently am waiting to get stitches removed from MIS and will also have WLE on the same day. Waiting for results on several other biopsies, and have identified one suspicious changing mole and three new ones!  I am sick of being cut on and stitched up but grateful for the chance to catch these moles early.  I have had so many biospies I have lost count.

I am interested in mole mapping, but don't know much about it. I know OHSU does it, but do not believe insurance covers it. I see that I can order a software mole mapping program. Has anyone used that?  I am worried about what this means for my children and grandchildren. I am on a roller coaster of fear and panic. I am stage 1, but thinking that at some point, sheer numbers of problem moles might change that. 

Anyone with tips regarding mole mapping? Also, how do I know my dermatologist is acutally a melanoma specialist? I am in the Pacific Northwest, about 1 hour from Portland. I am considering going to Fred Hutchinson Cancer Center in Seattle or Angels. Overkill? (pun intended) I like my derm and PA, just want to make sure I am doing what I need to do to take care of myself. 

Thank you and God bless you all. 

Cindy

Ring the bells that still can ring.

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Kellie-T's picture
Replies 2
Last reply 6/20/2012 - 9:45am
Replies by: Tina D, ALM

Just an update. Zelboraf is working! First 8 weeks mass shrunk half it's size. 2nd 8 weeks mass is back to normal size lymph node! Started at max dose but reduce to six per day after the first week due to side effects. The side effects are very tolerable. Making life adjustments due to the sun sensitivity and have become an expert with an eyebrow pencil. All and all, living life and grateful for it!

Life is not by accident. Make every minute count.

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yoopergirl's picture
Replies 5
Last reply 6/20/2012 - 8:31am

I can not wait until the beginning of July to see my oncologist for this nagging cough and shortness of breath so I made an appointment with my GP he has all my records from Madison. Hope he can help me with this coughing and to top things off I am having terrible panic attacks. We leave on Friday for WIsconsin for our son's wedding and that is a 6 hour ride, hubby said he will put the seat down in our van so I can lay down since that is the most comfortable I feel, this just sucks I have so much to do to get ready and all I am doing is resting. JUst needed to vent some!

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robbier's picture
Replies 1
Last reply 6/20/2012 - 1:26am
Replies by: ALM

Today I had my check-up with my Oncologist, a nd everything is great and still in remission.  won't have to have test again until october of 2012.  As of this month I am 9 months in remission without any type drug.  Very thankful that I did not have to go through that kind of regument.  I keep thnking God for keeping me and uphold me.  Thanks to all of you who are going thorugh this , be stong.   It takes courage and faith to stay stong, especially when one has been told you have cancer, stage lll.     Nope its in remission, and will stay in remission.  Had cancer past tense.  Everyone have a great day

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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Gene_S's picture
Replies 1
Last reply 6/19/2012 - 11:09pm
Replies by: Lucassi

Oncologists Audition Yervoy and Zelboraf for First-line Roles, With New Combos in Near Sight
The Pink Sheet Daily. 2012 Jun 18, E Hayes

A year ago, the arrival of two breakthrough therapies for metastatic melanoma stole the show at the American Society of Clinical Oncology annual meeting. This year, debate continued on how Bristol-Myers Squibb Co.’s immunotherapy Yervoy and Roche’s targeted Zelboraf should be used in practice: what is the best first-line option, and, especially with more agents coming, what is the potential for sequential and combination use?

Conventional thinking is that Yervoy (ipilimumab) may be the best first-line treatment for metastatic melanoma when disease is less advanced, while Roche’s targeted Zelboraf (vemurafenib) is an obvious choice for BRAF-mutation positive patients with a high tumor burden and risk of dying fast. But the debate is far from over and there is a critical need for more information to make informed treatment decisions, experts say.

The approvals of the CTLA-4 inhibitor Yervoyin May 2011 and BRAF inhibitor Zelboraf in August of that year marked a revolution in the treatment of melanoma after a decade of stagnation in the field. About half of metastatic melanoma patients test positive for the BRAF V600E mutation and are candidates for Zelboraf based on results from Roche’s cobas 4800 V600 Mutation test, approved by FDA in tandem with the drug. Yervoy response is not dependent on BRAF mutation and thus is an option for that subgroup as well.

Since both drugs are cleared across lines of metastatic melanoma therapy, a battle ensued for dominance in first-line treatment and has stirred debate in the field. Trials of Zelboraf demonstrated a strong early anti-tumor response, though it is often followed by development of treatment resistance. Ipilimumab, in contrast, is slow to take effect and only about one in four patients respond, but responses can be highly durable.

Options for sequencing strategies for new melanoma drugs were featured during an ASCO session on June 2. Speakers did not issue firm prescriptions, but did suggest that a year out, popular thinking is that positive mutation status doesn’t mean that a BRAF inhibitor is the best first choice. Yervoy might turn out to be a better option for patients in earlier stages of disease, when immunotherapy has a better chance for success, while Zelboraf seems a shoo-in for patients with a high risk for dying quickly and/or who need palliative treatment for symptoms due to a high tumor burden, they said.

Head-to-head data would help answer the questions about how and when to sequence Zelboraf vs. Yervoy in BRAF-positive patients. The Eastern Cooperative Oncology Group is planning the E1612 study to test ipilimumab followed by vemurafenib against vemurafenib followed by ipilimumab, noted Michael Atkins, deputy director of the Georgetown-Lombardi Comprehensive Cancer Center.

“We absolutely, positively need data, more definitive randomized data, such as could be provided … by the cooperative group trial that has been proposed and hopefully will ensue,” said Keith Flaherty, director of developmental therapeutics at Massachusetts General Hospital, and another session presenter.

Clinicians hope to launch the study in early 2013, but the study hasn’t been approved by all parties yet.

Melanoma: Current Lay Of The Land

Adoption of diagnostic testing provides an indication of how quickly the field has adapted to the introduction of new treatments. According to Roche Molecular Diagnostics, tests have been ordered for some 80% of eligible patients with late-stage melanoma. For the first quarter of 2012, Roche reported sales of CHF 32 million ($33.7 million) for Zelboraf and noted that it had a 79% share of first-line treatment and a 70% share of the second-line market.

Meanwhile, Yervoy sales reached $154 million in the first quarter of 2012, up slightly from $144 million in the fourth quarter of 2011. Product sales in the first 12 months of launch reached $514 million.

Ipilimumab also is now approved in the EU, albeit for a more limited indication. Bristol has launched in some countries and is planning to gain access and reimbursement in almost all countries in the region by the end of 2012, execs said in a Jan. 26 earnings call. Bristol also has an aggressive development program for Yervoy, with trials under way in prostate and lung cancer.

In keeping with Roche’s report about testing, a survey of oncologists done at the end of March/early April by BioTrends Research Group, a Decision Resources subsidiary, found high adoption of BRAF mutation testing, particularly in patients with Stage IV disease. The survey polled about 100 oncologists that treat at least 10 melanoma patients per month in a variety of settings, including community and academic hospitals.

Even though they are newest to market, Yervoy and Zelboraf have the highest awareness levels among oncologists, according to the survey. Absent prompting of product names, 90% of those surveyed were aware of Yervoy and 76% knew about Zelboraf.

BioTrends is analyzing the melanoma market with three rounds of surveys. The first was done at the end of September/early October 2011, the second one was done at the end of March/early April 2012, and the third will be performed in October 2012.

At the end of the first quarter – about one year after the Yervoy launch and six months after the introduction of Zelboraf – over 80% of providers had prescribed these therapies to at least some patients, according to the survey.

Both drugs continued to gain first-line market share at the expense of older drugs like temozolomide (Merck & Co. Inc.’s Temodar) and dacarbazine, compared to the previous survey. Yervoy’s first-line take was up 5% to 25% while Zelboraf rose from 12% to 22%Interviews with oncologists suggest the decision to use Zelboraf is based on several factors aside from the BRAF mutation, said Dan Winkelman, oncology therapeutic class director at BioTrends. For example, if patients have brain metastases, oncologists might be more likely to consider Temodar. For those who choose Yervoy first in BRAF-positive patients, “the rationale is that Yervoy is slow but sustainable, while Zelboraf has a good response rate but limited duration,” Winkelman explained in an interview.

Zelboraf’s uptake in Europe is rockier. The drug was turned down in draft guidance from the U.K.'s National Institute for Health and Clinical Excellence, released for consultation on June 15. The appraisal committee accepted that vemurafenib was a "step change" in the treatment of advanced malignant melanoma, but it found the long-term effects on survival were highly uncertain, because patients in the dacarbazine control arm of the pivotal trial were moved onto vemurafenib or ipilimumab when their disease progressed, making comparisons difficult.

NICE said that vemurafenib met less stringent criteria for being cost-effective because it was an "end-of-life" therapy. However, taking into account the uncertainty around its effects on survival, and even with the discount from the patient access scheme offered by Roche, the cost per QALY for vemurafenib would still be considerably more than the usual maximum of £50,000 per QALY gained for end-of-life therapies. Roche in fact estimated that the cost would be £56,000 per QALY gained, the appraisal committee noted. The company has the opportunity to discount the cost further by submitting another patient access scheme. Currently, one week's supply of Zelboraf costs £1,750, and with the average duration of therapy being seven months, the average cost of treatment works out at £52,500.

Sequencing Strategies At ASCO

Based on new research presented at the 2012 ASCO meeting, as well as previously known research, Atkins made his case for using ipilimumab as a first-line therapy prior to vemurafenib in appropriately selected BRAF-mutation positive patients.

Atkins drew attention to the results of a small retrospective poster study done by Beth Israel’s Allison Ackerman and colleagues. The study compared treatment response in 43 clinical trial patients with the BRAF V600E mutation treated with immunotherapy prior to or after vemurafenib between 2009 and 2012. All of the patients received vemurafenib and ipilimumab or interleukin 2, an earlier immunotherapy that works similarly to Yervoy.

All of the patients who initially received immunotherapy and progressed went on to get vemurafenib as a second-line treatment. Response rates were in line with the drug’s known efficacy.

Those who progressed on vemurafenib as first-line or second-line therapy for the most part deteriorated rapidly and were less able to benefit from ipilimumab. Median OS was 4 months. Treatment and survival were insufficient to accurately evaluate response to ipilimumab following vemurafenib, and a randomized trial is needed to make a full comparison in the same patient population. Further research is also needed into the rapid deterioration associated with vemurafenib progression.

During another session on June 4, Atkins noted that in the BRIM3 first-line trial of vemurafenib vs. dacarbazine, the overall survival benefit was demonstrated mostly in patients with the most aggressive, symptomatic disease, and there was lower benefit relative to dacarbazine in terms of overall survival for patients with earlier stage metastatic disease.

Based on the limited non-randomized data and clinical experience, Atkins concluded: “BRAF inhibitor therapy may not be the best initial option for patients with BRAF V600 melanoma.” Current data suggests some patients with BRAF V600E melanoma, particularly those who are asymptomatic and have normal serum LDH (lactate deyhydrogenase, a measure of tissue damage) have a chance at long-term benefit, “without compromising benefit from subsequent BRAF inhibitor therapy,” he said.

Weighing The Risk Of Waiting

Depending on a patient’s short-term survival prospects, which can be difficult to predict, there may not be time to wait for Yervoy to work, Mass General’s Flaherty said during the June 2 session on sequencing. The first assessment of Yervoy treatment takes place after three months, but some patients progress rapidly and may die within six months.

In contrast, Zelboraf has demonstrated “early and profound activity,” so in patients who are symptomatic and have a high tumor burden, sequencing decisions are much more clear-cut, he said: “We have relatively few choices other than to offer what we think is the best palliative treatment.”

After treatment with Zelboraf, however, “early experience suggests, unfortunately, many cannot be transitioned” to ipilimumab he said.

If a combination of Yervoy/Zelboraf emerges as a safe alternative, “this would make the whole concern about sequential therapy go away,” and those perceived to be at risk of short-term survival could receive both therapies, Flaherty said. A Phase I/II trial testing this combination is enrolling patients.

The discussion at ASCO suggests that it might be in the BRAF-mutation positive patient’s interest to reserve treatment with BRAF inhibitors for later, Vernon Sondak, chair of cutaneous oncology at the Moffitt Cancer Center, commented in an interview. It makes sense to use ipilimumab early when a patient’s immune system is intact and overall condition is better.

“If they have a chance of being cured or at least having long, long term success, why not give them that chance?” he said.

The introduction of new drugs in the arsenal would further complicate decision-making. At the ASCO meeting, GlaxoSmithKline PLC released data for its MEK inhibitor tremetinib and BRAF inhibitor dabrafenib and is expected to file for approval of both as monotherapies later in 2012 (see sidebar). Combining MEK with BRAF could improve the BRAF resistance profile and eliminate some of BRAF associated toxicity. Phase III combination trials are under way, following the release of an early-stage combination trial at the ASCO meeting.

“We haven’t got all the answers, and clinical trials and ongoing research at specialized centers [are] still going to be important. … We have some great new drugs that are working better than anything we ever had but we still have a lot of questions about how to do even better,” Sondak said.

============================ original source below =======================

http://www.oncologystat.com/news/Oncologists_Audition_Yervoy_and_Zelboraf_for_First_line_Roles_With_New_Combos_in_Near_Sight.html

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

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Last night we had the post-ASCO teleconference, which was hosted by Dr. Lynn Schuchter (University of Pennsylvania) and Dr. Georgina Long (University of Sydney, Australia).  The recording of the call is now on our website if you are interested in listening to the update of all of the melanoma research that was presented at ASCO at the beginning of the month.  Here is the link:

http://www.melanoma.org/get-involved/post-asco-teleconference 

Shelby - MRF

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acortes's picture
Replies 3
Last reply 6/19/2012 - 4:36pm
Replies by: acortes, Swanee, washoegal

My sister's cancer came back and unfortunately it came back hard. It spread to spine and brain. She is getting brain and spine radiation and yestrday was her first Yervoy treatment. I would like to know about other's experience so that we can accomodate her as much as possible. Doctors are not being very positve. They are giving her weeks to live, but we are keep hope!

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markd's picture
Replies 13
Last reply 6/19/2012 - 1:14pm
catmandu's picture
Replies 4
Last reply 6/19/2012 - 11:20am
Replies by: catmandu, Gene_S, Janner, Anonymous

help!  i have been diagnosed with recurring melanoma in my groin area.  it has been removed.  i am going to md anderson in houston soon after they call me with an appointment.  my doctor told me it would cost me 90,000.00.  i have insurance but it only pays 70%.  maybe there is a clinical trial.  i just want to give up.  i am 62 and not on medicare yet.  what can i do?

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Jewel's picture
Replies 3
Last reply 6/19/2012 - 10:41am

Hello Everyone,

 

My husband was diagnosed in Nov 2010, Since then he had a Recurrance on his calf in June 2011 and a full LND where he had 3/19 nodes

positive for Melanoma. He has had no treatment as of yet. We have been blessed with clean scans since then. In the event it comes back I

was wondering if we should do Yervoy first followed by Zelborof or the other way around. Just looking for some other opinions.

 

Thank God for this board.

 

Jewel

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