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.

Expand/ Collapse Topic
 
Replies By
View Topic
jag's picture
Replies 17
Last reply 7/1/2012 - 3:35pm

Well, 9 years and 2 days ago, I was diagnosed with melanoma on my birthday(or rebirthday-depending on how you see it). Life had plenty of rollercoasters since then-1 lung wedge biopsy, 6 rounds of biochemotherapy, 4 rounds of interleukin 2, complete removal of my left lung. 6 brain surgeries, 2 SRS procedures, 1 patch radiation, and finally out of the hospital for almost 2 years. In the mean time, I have seen all of the major national parks, gotten engaged- then married, started my own veterinary housecall service, and just this year we had our first son and named him after my oncologist-Jedd.
Life has turned around and improved immensly for me, yet I read here nearly everyday. I take my antiseizure meds everyday-but I'm slowly tapering.
Next year I am considering running the NY marathon, not just for me, but for all of the other patients who haven't made it, for all of the people trying to beat it, and to thank God for the gift of life.
God Bless you all and much hope for NED in the future.

Insert Generic Inspirational Motto Here

Login or register to post replies.

bikerwife's picture
Replies 8
Last reply 6/22/2012 - 6:45pm

Lynn had his 12 week scans after yervoy they showed some shrank and went away but one in chest cavity grew a little tumors on kidney stayed the same our dr said we could wait 2 months and scan again but he felt waiting to see if they grow. Isn't a good idea so he would prefer that lynn start zelobraf. So Monday he will start. I'm very scared read so many things on here about side effects.

I told the dr I had read that it only works for 7 to 8 months he said all patients are different and he had a patient that had been on it for 2 years. He also said it was the miracle drug.

Dr. Shirai just got back from a conference in chicago and that there is somr trails going on that look very promising and he would be starting them at musc.

I guess all we can do is live day to day make the best of it and hope for the miracles God has promised us. I pray for this board daily may God bless each of you.

Thanks for listening everybody I'm one scared worried wife. I love my Lynn so much. I wish I could just reach out and talk to some of y'all goes you truly know what I'm feeling any help and advice would be appreciated.

God Bless

What God leads u to he will. Lead you through

Login or register to post replies.

Iowa98's picture
Replies 9
Last reply 7/9/2012 - 10:14pm

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

Login or register to post replies.

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

Login or register to post replies.

hope4cure1's picture
Replies 16
Last reply 11/15/2012 - 4:39pm

We got scan results today.  My husband is now 11 months NED.  September, 2010 he had 2 lung mets removed surgically.  February 2011 he had 4 liver mets and 2 lymph nodes in his chest. He started a combo of Carboplatin, Abraxane, Avastin.  Since last September, he has just been on Avastin for maintenance. I hesitate to post this because I know that chemo doesn't have the greatest response, but I do want to give hope to anyone who feels that they are being thrown chemo in desperation. Each case is unique, which may explain the varying responses to treatment.

When I first came to this forum, I scoured the board for whispers of hope from people who were seeing success.  I hung on every NED. I think many of us do that.  Long time survivors here impart hope.The sage advice of so many caring people are gifts of knowledge. The strength, support, compassion and courage that so many of you have shown here touches many deeply.  Each loss hurts, each good report lifts.  How a group of virtual strangers can mean so much baffles me.  You do, and I thank you a million times over.

Hope  

Become what you admire.

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

Richard_K's picture
Replies 24
Last reply 9/4/2012 - 9:14am

 

Hi everyone,

I had scans this past Monday and yesterday met with my doctor for the results – NO CHANGE from previous scans.  It’s now been 28 months since I started on Zelboraf and 19 months since the PET scan stopped lighting up.

I get a through physical exam including blood work and EKGs (three of them).  My doctor and her staff consider me a “boring” patient.  It’s great to be boring!

I got another six week supply of pills with next scheduled scans for July 30th.

Dick

Login or register to post replies.

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?

Login or register to post replies.

Randy437's picture
Replies 11
Last reply 6/22/2012 - 11:07am

I have had single mets removed from both lungs, brain, and small intestine.  I've been NED for 2 1/2 years.  Is anyone aware of trials for NED patients?  I do not have the BRAF mutation.  Thank you.

Login or register to post replies.

Laurie from maine's picture
Replies 9
Last reply 6/24/2012 - 1:22pm
Replies by: Gene_S, NYKaren, Laurie from maine, LynnLuc, AllyNTAus, Anonymous

hi,

Last week I was going thru the testing necessary to get into PD-1 trial in Boston.  Unfortunately they found a small brain tumor that knocked me out, very hard to hear as I was so excited for the opportunity to be in that trial. 

So after getting brain zapped I now wait 4 weeks and get another body scan and brain mri to see if I can qualify for another Pd-1 trial if there are any around at that point, and that will take me.

My doctor wants to just watch and wait.  (i was partial responder to BRAF and Ippi)  Currently I have a large tumor on my collar bone that keeps slowly growing now size of baseball, but other soft tumors not growing and can breath well, and have energy so really not sure what is going on.   Doctor hopes that next scans will show that ippi is late kicking in and we can maybe down the road to a reinduction of ippi.  IL-2 is not a good bet for me with brain involvement.  So he is talking possibility of chemo if things start to grow again (tumors lung, liver, adrenal gland, soft tumors etc)   When on BRAF I had 3 agressive tumors appear in intestines requiring surgery and doctor is afraid if that agressive cancer reappears things will go bad fast, but currently stomach remaining quiet.  Scary to be sitting and just waiting for next months scans and even then not really having an option that seems optmistic for me. 

I am wondering while I sit and wait if anyone has any thoughts or options that I should pursue? 

 

* Yale had an open spot on their trial that was combinbing ippi and mdx-1106 the spot that was open  was for prior ippi people who had had finished their last ippi infusion within 4-12 weeks.  I am hopeful someone on here can take advantage of that trial is a great trial, I missed out on that one too because of brain radiation pushing me past my ippi time frame.  They were great people to talk to at Yale.

take care

laurie from maine

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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?

Login or register to post replies.

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.

Login or register to post replies.

Pages