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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lucy3's picture
Replies 9
Last reply 1/3/2014 - 11:12pm
Replies by: kylez, Anonymous, BrianP, JerryfromFauq, lucy3, sbrooks90, POW

hello friends.   this is my first post, though i have been lurking for the past 3 months or so.  july 12,2012 i had a melanoma, 3.05   without an irritated site.  removed along with an alledged negative snb.  one small area of which had an area that the pathologist would not declare negative, nor would he declare it positive.     i thought i was in good shape.  had a good year.   august 2013, noted groin  node in lymph area of past surgical site.  (left ankle)   had node removed and clean out of lymph nodes.   wore drain 4 weeks, then had 23 days or radiation to site.   was waiting for randomization to trial   of 2 arms  ipi and l arm interferon.      just learned that i was placed in the interferon group.        i am a robust 75 who looks 65 and is healty other than a little arthritis and hypertension.and don't want to waste one of my possible last years being miserable          i did learn through probling my onc, (very nice, but not mel specialist) that i am braf negative, and NRAS positive.  (i know this is not good news)   i have just completed negative pet and ct scan or head. ( i cannot have mri or head due to implant in ear)    i am asking for advice re next step.   i would like to see a mel specialist at a large cancer center.   vanderbilt is much more convenient, sloan kettering could be managed.   and what is "watch and wait" really like.   is that good enough for me.    any bit of info provided would be appreciated and evaluated.   i have learned so much from this site and felt such kindess and knowledge frin every post.     thanks to you all.     

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lll.ll.lll.ll.lll's picture
Replies 7
Last reply 1/4/2014 - 12:01am

I'm so glad I have found this.. I've been a little lost with all this and seems that nobody really wants to talk about it so I'm hoping I can find some input here.

I started noticing something was wrong back in late Aug early September.. I was tired all the time. I'm physically active and workout five to six days a week and was doing a very physical job at the time but I was really the only one struggling dieting it physically with being so tired.

It was during that time I started to notice a swimy feeling in my head and I was getting confused and angry at almost nothing. I honestly thought I was getting early dementia or had cte.

Two months later I was still tired and having the same issues with my brain.. I would describe it as taking pain killers on an empty stomach and the sick feelings that come with. But I kept brushing it off till one morning I woke with a severe burning feeling on a spot on my back. When I went to look in the mirror it was a dark spot I had had for years and apon touching it it began to ooze dark thick blood.

Being uninsured two days later I found a dermatologist that would perform the biopsy. I told the nurse and the Dr what I had been going through. The Dr only visually looked at my back and said there were a few spots he was concerned about but the one I came in for definitely needed to be biopsied.

A week later the results came back that it was in fact melanoma and it needed to be removed and he recommend I get health insurance to get it taken care of.

Well my insurance wont kick in till the first of the year and other things keep popping up.. I still have the swimy brain only worse now.. I stumble now sometimes when I walk.. I've noticed lymph nodes in my pelvis get larger over the past month or so and now I'm getting pains in the area.. I get a stabbing pain in my diaphragm from time to time and I find it hard to catch my breath..

I've been to the er twice now cause it gets so bad..

My white count is "elevated" and they say it can be from just an infection.. my brain scan had some admoralities but nothing "acute" and my chest xray looked "alright"

I know er and Dr talk all to well and they dance around things.. I guess I'm hoping maybe someone has had similar symptoms

Adam McCurry

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/4/2014 - 7:48am
Replies by: Anonymous, jack6020, Tina D

My mother was improving after taking 2 types of chemo meds for her MEK gene. She also had successful whole brain radiation for her brain met. After WBR, she had little mobility in her legs but was regaining strength and was able to get around with a walker. This has been on going since this summer. Last week, she could no longer move her legs. We took her to the hospital. They did the scans and found a large tumor on her thoracic spine. This was why she couldn't walk. Seems so obvious now. Why wouldn't they have ever checked her spine in the first place? These are supposed to be the best doctors at the university of Penn!! Her tumors have also grown back, larger than before (spleen, adrenal glands, brain, spine, lymph nodes, soft tissue around her lungs, bowels, etc.). It sounds like her Dr. Is giving up. Told us that there is an approved med but it's been less successful than her MEK meds that stopped working and she's ineligible for anti-pd1. Try to keep her comfortable. 

What can I do? I can't just sit here while she's dying. I know there's another route. She's a good responder to radiation and chemo. I don't understand. 

If anyone has any suggestions, please help me. 

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/4/2014 - 10:37am
Replies by: Anonymous

Hi Josh,

How are you doing?? I have a friend seeing Dr. Daniels, and I thought about you.

I hope that you are doing well. How about an update!

Stay Well My Friend,

Gregg

(Anyone heard from Josh, please post his update...Thanks)

 

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/4/2014 - 7:49pm
Replies by: JerryfromFauq, mitchwendy, Anonymous, kpcollins31, Janner

Hi there

 

A friend of mine has been diagnosed with Stage 4 liver cancer.

The terms Braf postive and negative have been mentioned, and they have now been told they are Braf negative.

 

What does this mean?
Is it better to be negative rather than postive?

I dont want to bombard them with questions directly..hope you can shed some light.

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Braid's picture
Replies 8
Last reply 1/6/2014 - 9:20am
Replies by: MeNDave, Braid, Anonymous, arthurjedi007, jmmm

Hello, my wife had a large melanoma tumor removed from her upper thigh in September, 2013. After much debate we decided to go nivolumab lumab with high dose interferon treatment. She had a full body CT scan immediately prior to going on interferon and it was deemed clear mid December. On December 29th, I came home and found her passed out on the floor. Turns out she had a large blood clot in her brain from another melanoma tumor that ruptured. They successfully removed the tumor and she is currently in rehab to regain speech as well as the ability to walk again. This has been absolutely devastating. I'm confused how she would be cleared just 2 weeks prior of an undetected tumor that ruptured only 2 weeks later. Does anyone know if a melanoma brain tumor can go undetected in a CT scan and grow in only 2 weeks time?

Any input would be greatly appreciated. I'm currently searching options for putting her on Yeroy or one of the latest trials, nivolumab or lambrolizumab.

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MaryD's picture
Replies 2
Last reply 1/6/2014 - 9:41am
Replies by: MeNDave, Anonymous

For those of you who are "old timers" on the board you may remember  Nancy D.   Nancy's melanoma recurred earlier this year after 8 years of NED and sadly, she passed away yesterday.

While I only had the chance to know Nancy for a few years, she just exuded joy to anyone who met her and her wry wit and sense of humor remained until the end.    She was determined to live what time she had left living life to the fullest - and she did just that this past year.

Her dignity, faith, and grace touched many lives and I feel priviledged to have known her.

Rest in peace sweet Nancy and I'm sure you're having the best Thanksgiving ever in heaven!

Mary

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G-Samsa's picture
Replies 2
Last reply 1/6/2014 - 12:22pm
Replies by: lucy3, jahendry12

I noticed in today's Wall Street Journal that the immunological center at Memorial Sloan Kettering was the recipient of a 90 million dollar grant from shipping magnate Daniel Ludwig.   Dr Wolchok is quoted as saying the magnitude of the grant will be "transformative"-- and that it will support trials of new immunological agents.  It's not quite the cavalry to the rescue--too slow for that --but terrific news, regardless.

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bj63's picture
Replies 3
Last reply 1/6/2014 - 12:30pm
Replies by: POW, jahendry12, ecc26

I just tried to post a reply in another thread and was blocked by the spam filter?  What gives?

Sometimes no news is the best news!

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DNA sequencer raises doctors' hopes for personalized medicine

The device could accelerate the use of genetic information in everyday medical care, physicians hope, improving diagnoses and treatments.

By Melissa Healy

January 3, 2014, 11:02 p.m.

Among the many stents, surgical clamps, pumps and other medical devices that have recently come before the Food and Drug Administration for clearance, none has excited the widespread hopes of physicians and researchers like a machine called the Illumina MiSeqDx.

This compact DNA sequencer has the potential to change the way doctors care for patients by making personalized medicine a reality, experts say.

"It's about time," said Michael Snyder, director of the Stanford Center for Genomics and Personalized Medicine.

Physicians who rely on genetic tests to guide their patients' treatment have had to order scans that reveal only small parts of a patient's genome, as if peeking through a keyhole, Snyder said: "Why would you study just a few genes when you can see the whole thing?"

Back in 2000, when the Human Genome Project completed its first draft of the 3 billion base pairs that make up a person's DNA, the effort took a full decade and cost close to $100 million. The Illumina MiSeqDx can pull off the same feat in about a day for less than $5,000 — and the results will be more accurate, two of the nation's top physicians gushed in the New England Journal of Medicine.

That confluence of "faster, cheaper and better" is likely to accelerate the use of genetic information in everyday medical care, Dr. Francis Collins, director of the National Institutes of Health, and Dr. Margaret Hamburg, commissioner of the FDA, wrote last month. DNA sequencing should guide physicians in choosing the best drug to treat a specific patient for a specific disease while risking the fewest side effects.

The Illumina MiSeqDx platform works by breaking down, rebuilding and recording the entire sequence of a person's DNA in a massively parallel fashion, completing the job in a matter of hours. The company intends to market the machine to diagnostic labs, medical centers and private practices, at a price slightly more than $125,000.

Now that MiSeqDx has been approved, several other whole-genome sequencers are likely to seek the FDA's blessing in the coming months, agency officials say.

Right away, the technology is poised to improve the diagnosis and treatment of cystic fibrosis. Two new assays for the chronic lung condition — both developed by Illumina for use on the MiSeqDx — were approved in November by the FDA. Instead of checking for the six mutations most commonly linked to the disease, the new tests are able to discern a total of 139 genetic variations that give rise to cystic fibrosis. They will also tell doctors whether a patient is among the 4% who has a mutation that's targeted by a specific, costly drug.

Whole-genome sequencing has begun to reshape the way physicians diagnose and treat cancer as well. For a growing number of patients, treatment is guided by a DNA scan that reveals which mutation gave rise to the malignancy, not the organ in which the cancer manifests itself.

Having a fuller, clearer picture of patients' complete genomes will also allow biomedical researchers to expand their understanding of how DNA variants work together to influence disease risk, said Dr. Robert Green, a medical geneticist at Harvard Medical School and Brigham and Women's Hospital in Boston.

In current practice, physicians use genetic tests to look for known mutations that show up in the "exome" — the 1.5% of the genome that dictates the composition and timing of how proteins are produced. When inherited in identifiable patterns, these mutations give rise to conditions like Huntington's disease and certain kinds of hearing loss.

But with machines such as MiSeqDx, researchers will be able to look for subtle variations and disease-causing patterns anywhere in DNA, including the long stretches that until recently were regarded as "junk." What they learn will enable doctors to warn their patients of their genetic vulnerabilities, allowing patients, in turn, to take steps to reduce their risk.

It may take a while for physicians to become proficient in conveying such information, and for patients to grasp its meaning, Green said.

"We know that people get state-of-the-art genetic counseling and still walk out of that office confused," he said.

Scientists promised that the age of personalized medicine had arrived when the Human Genome Project published our DNA blueprint. In the years since, that promise has proved elusive.

It was all very well to imagine that a single genetic scan would alert a patient to disease risks and — should he or she become ill — identify which treatments would work best.

In reality, the painstaking process of sequencing every patient's entire genome was a distant dream. Each expensive scan would take months to complete, making it a poor guide to treatment. Results were unreliable. And large stretches of the genome came out fuzzy, yielding a picture of a person's genetic makeup too uncertain to base medical decisions on.

And then there was the question of what it all meant. Where in the genome's 3 billion base pairs should doctors look for clues to a patient's future illness? Which genetic variations should prompt immediate action and which could be safely ignored? How should all of these genetic risks and their inherent uncertainties be explained to a patient?

Lawmakers and bioethicists began to lay the groundwork for this new world, wrestling with issues such as whether companies could refuse to hire someone or health insurers could deny them coverage on the basis of their DNA. The Genetic Information Nondiscrimination Act made these actions illegal in 2008.

Last month, the Presidential Committee for the Study of Bioethical Issues urged doctors to come up with guidelines for dealing with the incidental findings that are bound to come up when a patient's genome receives such thorough scrutiny. Physicians ordering such tests — and the patients receiving their results — should decide in advance how much of that incidental information they want to know, the panel recommended.

In approving the MiSeqDx, the FDA declared that it would regulate the complex and fast-evolving industry of genomic sequencing services. The agency has already flexed its muscles by ordering 23andMe — a high-profile Silicon Valley company that encourages consumers to examine their own DNA by sending in vials of saliva — to stop marketing its $99 tests to the public until it had demonstrated to the FDA that its findings were accurate and reliable.

Elizabeth Mansfield, who directs the personalized-medicine office in the FDA's Center for Devices and Radiological Health, acknowledged the skepticism about the agency's ability to regulate this emerging industry. But standards have been developed and conveyed to companies, she said.

"We certainly hope to see more" devices like MiSeqDx in the coming year, Mansfield said. "Bring it on."

melissa.healy@latimes.com

http://www.latimes.com/science/la-sci-personalized-medicine-20140104,0,436970.story#ixzz2pZsOAMZF

 

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High-Dose Interferon With Maintenance Treatment in High-Risk Melanoma

 

J. Clin. Oncol 2013 Dec 16;[EPub Ahead of Print], MJ Payne, K Argyropoulou, P Lorigan, JJ McAleer, D Farrugia, N Davidson, C Kelly, D Chao, E Marshall, C Han, S Wellman, MR Middleton

Research · January 02, 2014
 
 
 

TAKE-HOME MESSAGE

  • In this phase II study, 194 patients with stage IIB, IIC, IIIB, or IIIC melanoma were randomly assigned to receive adjuvant high-dose intravenous interferon alfa-2b for 4 weeks +/− maintenance low-dose subcutaneous interferon alpha-2b for 48 weeks. Improved outcomes seen with maintenance therapy in terms of relapse-free survival were not significant (2-year RFS, 54% vs 50%; P = .569). Improvement of overall survival was of borderline significance (median OS, not reached vs 41 months; P = .05).
  • Results did not support the initiation of a phase III trial. More data are needed to determine the optimal duration of adjuvant interferon alpha-2b therapy.

- Richard Bambury, MD

 

ABSTRACT

 

PURPOSE

High-dose interferon alfa-2b (HDI) has emerged as a potentially effective adjuvant therapy in patients with resected melanoma at high risk of recurrence. Evidence suggests it may be the early, very-high-dose part of the regimen that is critical. This pilot study sought to provide an early indication of whether the same effects can be achieved with the intravenous component of HDI alone and inform the feasibility and design of a phase III trial.

 
PATIENTS AND METHODS

Patients with stage 2B, 2C, 3B, and 3C melanoma were randomly assigned to receive interferon alfa-2b (IFN-α-2b) 20 MIU/m(2) intravenously (IV) daily 5 days per week for 4 weeks (arm A) versus the same regimen followed by IFN-α-2b 10 MIU/m(2) administered subcutaneously three times per week for 48 weeks (arm B) and observed for relapse-free survival (RFS) and overall survival.

 

RESULTS

Between 2003 and 2009, 194 patients were enrolled (arm A, 96; arm B, 98). After median follow-up of 39.5 months, RFS was 22.7 months (95% CI, 14.1 to 38.1 months) in arm A versus 33.3 months (95% CI, 18.2 to not reached) in arm B (P = .28). The proportions of patients free of relapse at 2 years were 50% and 54.1% (P = .569; hazard ratio, 0.89), respectively. Overall survival favored arm B (median, 41.5 months v not reached; P = .05).

 

CONCLUSION

Clinical outcomes were better in patients who had the longer regimen. Our results do not support either the use of a month of IV HDI alone in place of the year-long regimen or the initiation of a larger trial on this question.

Journal of Clinical Oncology
Phase II Pilot Study of Intravenous High-Dose Interferon With or Without Maintenance Treatment in Melanoma at High Risk of Recurrence
J. Clin. Oncol 2013 Dec 16;[EPub Ahead of Print], MJ Payne, K Argyropoulou, P Lorigan, JJ McAleer, D Farrugia, N Davidson, C Kelly, D Chao, E Marshall, C Han, S Wellman, MR Middleton

 

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Single vs Multiple Fractions of Repeat Radiation for Painful Bone Metastases

 

Lancet Oncol 2013 Dec 23;[EPub Ahead of Print], E Chow, YM van der Linden, D Roos, WF Hartsell, P Hoskin, JSY Wu, MD Brundage, A Nabid, CJA Tissing-Tan, B Oei, S Babington, WF Demas, CF Wilson, RM Meyer, BE Chen, RKS Wong

Research · January 02, 2014
 
 

TAKE-HOME MESSAGE

  • In an attempt to determine the benefit of repeat palliative radiotherapy to previously radiated painful bone metastasis, investigators randomized patients to 8 Gy in a single fraction or 20 Gy in multiple fractions and evaluated pain response at 2 months. Although the results are confounded by a high rate of not assessable patients in both arms, single-fraction radiation therapy appeared to be non-inferior and less toxic to multiple fractions.
  • While this trial appears to support a less intensive palliative radiation treatment, improved trial adherence in future explorations will help in firmly defining future treatment protocols.

- Chris Tully, MD

 

Commentary by
Lee S. Schwartzberg MD, FACP

Painful bone metastases remain one of the most feared and difficult consequences of advanced cancer. Radiation therapy provides relief of pain, and evidence has accumulated that a single fraction of 8 Gy can yield similar results to multiple smaller fractions over 1 to 2 weeks designed to deliver 20 Gy. Less is known about the benefit of single fraction vs multiple fractions when re-radiating lesions that either failed to respond to the first radiation or became painful again. Chow and colleagues performed a multicenter trial over several years designed to answer that question. They found that, in general, a single 8 Gy fraction yielded a noninferior result in terms of the primary endpoint of pain reduction compared with multiple fractions. However, the study was hampered by a high dropout rate and large number of patients who did not complete the pain assessment at the appropriate time. These complications were not unexpected as the trial dealt with a very advanced population. It was, therefore, gratifying to see that quality of life improved for the majority of patients in both arms after re-irradiation.

These results support the use of a convenient, single day/dose of 8 Gy when a bony lesion requires re-irradiation for pain control. Such an approach could be useful for palliation even in patients not receiving active cancer therapy and those on hospice care, given the significant improvement in pain, symptoms, and quality of life seen in many patients.

ABSTRACT

Background

Although repeat radiation treatment has been shown to palliate pain in patients with bone metastases from multiple primary origin sites, data for the best possible dose fractionation schedules are lacking. We aimed to assess two dose fractionation schedules in patients with painful bone metastases needing repeat radiation therapy.

Methods

We did a multicentre, non-blinded, randomised, controlled trial in nine countries worldwide. We enrolled patients 18 years or older who had radiologically confirmed, painful (ie, pain measured as ≥2 points using the Brief Pain Inventory) bone metastases, had received previous radiation therapy, and were taking a stable dose and schedule of pain-relieving drugs (if prescribed). Patients were randomly assigned (1:1) to receive either 8 Gy in a single fraction or 20 Gy in multiple fractions by a central computer-generated allocation sequence using dynamic minimisation to conceal assignment, stratified by previous radiation fraction schedule, response to initial radiation, and treatment centre. Patients, caregivers, and investigators were not masked to treatment allocation. The primary endpoint was overall pain response at 2 months, which was defined as the sum of complete and partial pain responses to treatment, assessed using both Brief Pain Inventory scores and changes in analgesic consumption. Analysis was done by intention to treat.

Findings

Between Jan 7, 2004, and May 24, 2012, we randomly assigned 425 patients to each treatment group. 19 (4%) patients in the 8 Gy group and 12 (3%) in the 20 Gy group were found to be ineligible after randomisation, and 140 (33%) and 132 (31%) patients, respectively, were not assessable at 2 months and were counted as missing data in the intention-to-treat analysis. In the intention-to-treat population, 118 (28%) patients allocated to 8 Gy treatment and 135 (32%) allocated to 20 Gy treatment had an overall pain response to treatment (p=0·21; response difference of 4·00% [upper limit of the 95% CI 9·2, less than the prespecified non-inferiority margin of 10%]). In the per-protocol population, 116 (45%) of 258 patients and 134 (51%) of 263 patients, respectively, had an overall pain response to treatment (p=0·17; response difference 6·00% [upper limit of the 95% CI 13·2, greater than the prespecified non-inferiority margin of 10%]). The most frequently reported acute radiation-related toxicities at 14 days were lack of appetite (201 [56%] of 358 assessable patients who received 8 Gy vs 229 [66%] of 349 assessable patients who received 20 Gy; p=0·011) and diarrhoea (81 [23%] of 357 vs 108 [31%] of 349; p=0·018). Pathological fractures occurred in 30 (7%) of 425 patients assigned to 8 Gy and 20 (5%) of 425 assigned to 20 Gy (odds ratio [OR] 1·54, 95% CI 0·85–2·75; p=0·15), and spinal cord or cauda equina compressions were reported in seven (2%) of 425 versus two (<1%) of 425, respectively (OR 3·54, 95% CI 0·73–17·15; p=0·094).

Interpretation

In patients with painful bone metastases requiring repeat radiation therapy, treatment with 8 Gy in a single fraction seems to be non-inferior and less toxic than 20 Gy in multiple fractions; however, as findings were not robust in a per-protocol analysis, trade-offs between efficacy and toxicity might exist.

The Lancet Oncology
Single Versus Multiple Fractions of Repeat Radiation for Painful Bone Metastases: A Randomised, Controlled, Non-Inferiority Trial
Lancet Oncol 2013 Dec 23;[EPub Ahead of Print], E Chow, YM van der Linden, D Roos, WF Hartsell, P Hoskin, JSY Wu, MD Brundage, A Nabid, CJA Tissing-Tan, B Oei, S Babington, WF Demas, CF Wilson, RM Meyer, BE Chen, RKS Wong

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/6/2014 - 3:37pm
Replies by: Janner, Anonymous

I have seen survival statistics based upon stage at initial diagnosis or based upon moving to a new stage, but have not seen survival statistics based upon going NED for a period of time.  In other words, if a stage 3c individual goes 1 year NED are her survival statistics improved vs what the statistics indicate at initial diagnosis?   I would assume the longer a person stays NED the better the chances of long term survival, but I have not seen those statistics.  I know everyone is different and one should not obsess over statistics, but I would like to see what they are if they exist.  I would appreciate it of someone could direct me to the right place.  Thank you.

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UrsulaZ's picture
Replies 6
Last reply 1/6/2014 - 5:24pm

Hello --

I have stage IV melanoma with several abdominal mets, and am travelling to Memorial-Sloan-Kettering in NY to be part of this trial:

CA209-004, A Phase Ib, Open-Label, Multicenter Dose-Escalation Study of MDX-1106 (Nivolumab; BMS-936558) in Combination with Ipilimumab (BMS-734016) in Subjects with Unresectable Stage III or Stage IV Malignant Melanoma

I've received my first four doses (the ipi & nivo in combination), and am now going to get the nivolumab alone every two weeks. 

I recently had my first scans, and there were no new mets, and an overall reduction in the existing lesions of 62%. (the largest was about 7 x 5 cm, and that's shrunk by half). 

They will scan again in mid-December.

I'm on Prednisone now for some Ipi-induced colitis, but that's OK. 

Cautiously relieved and hopeful that others can also benefit from the new research in the area. 

-Ursula

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BrianP's picture
Replies 9
Last reply 1/6/2014 - 9:39pm

I traveled down to Moffitt this past week to enter a MAGE vaccine trial for Stage IV NED patients.  Unfortunately due to some delays with pathology request the scans I had several weeks ago which indicated no disease are now not recent enough for the trial so I had to get rescanned.  The new scans showed evidence of disease so I had to come up with a new game plan.  I'm now looking to travel back down to Moffitt this upcoming week to enter the BMS Nivo/IPI combo trial.  There's been a lot of press on this new combo but surprisingly I haven't heard of many people on this forum enrolled in the trial.  Would love to hear from someone on the trial if they could share their experinences so far.  Thanks!

Brian

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