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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Julie in SoCal's picture
Replies 5
Last reply 12/11/2013 - 8:14am

Dear Friends,

After almost 5 years of NED status, Mel is back.  Both of the biopsied funk have come back positive for mel.

I'm possibly getting ahead of myself, as I haven't had scans yet, but what are the treatment options for Stage 3C resected?  Are there any? 

Anyone have any experience with this?

Thank you Friends,

Julie

 

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dnovak's picture
Replies 3
Last reply 12/10/2013 - 11:37pm
Replies by: Anonymous, BrianP

I see this as awesome news and a sign of whats to come for all types of cancers.  I just wish they would hurry the hell up!!!

http://news.yahoo.com/gene-therapy-scores-big-wins-against-blood-cancers-160100028.html

dave novak, father to Amelia 8 year old IIIb

 

 

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Kim K's picture
Replies 7
Last reply 12/11/2013 - 3:10am
Replies by: Kim K, Anonymous, Charlie S, Janner, POW

Just wondering if this function is working and no one ever goes there anymore, or if it just hasn't been made fully functional yet.

I love the ability to upload your own avatar, and the expanded defaults.  BTW, what is a marquee and the 1000 credits thing?

I really miss all the people who used to chat.  It has gotten easeir and faster to enter the room thankfully.  Same for returning to the main BB after responding to a post.  My computer doesn't lock up for an hour after I hit the submit button.

TY.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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sbrooks90's picture
Replies 13
Last reply 12/11/2013 - 11:26am
Replies by: sbrooks90, Anonymous, mitchwendy, Momrn5, POW, JoshF

Hi Everyone,

Just thought id log in and post an update to let you guys know how everything is going. Last time I posted, I had gone through a CLND of the groin after a positive sentinel node was found. CLND resulted in no further evidence of disease. In my last post, I reached out to the community for advice on adjuvant treatment recommendations. Treatments available to me here in Canada were:

1) Interferon Alpha 2b

2) Clinical Trial - Ipi vs. Interferon (Randomized study)

3) Clinical Trial - Vemurafenib vs. Placebo (Randomized study)

I decided that none of those appealed to me and chose to forgo the standard all together. I did however choose to visit a naturopath and changed my diet as well as add many Vitamins to it. I feel better than ever right now and am living life to the fullest. (took me a good 3 months to recover from the CLND)

Thank you to everyone on this board who provided me with opinions, I took those into consideration when deciding what treatment path to follow/not follow.

One thing I will leave for debate..... Here in Canada, we do not do "preventative scanning". As many of you mention on here, you go for 6 month PET/CT Scans etc. Here in Canada, you get scanned ONLY if you are having symptoms of metastatic disease or have palpable lymph nodes. (alot of this has to do with the fact that we have free health care and cannot afford to do that) I have been thinking maybe for peace of mind.... drive 1hr to Buffalo and pay to have a scan done.

 

Anyway thats my piece, Take care!

 

Samuel

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ncdaniel's picture
Replies 6
Last reply 12/14/2013 - 9:51am

My wife is currently undergoing chemo with three different chemo drugs and I was wondering if anyone has had any success with them  or reduction in tumor size.?  She is getting  Vinblastine (Velban) , Cisplaatin, and TEmozlomide (temodar). She has already gone through many of the treatments, IL-2 , Yervoy ( developed severe colitis after 1 treatment) Gamma knife and WBR. She was rejected for BMS PD-1 trial due to yervoy side effects and at NIH for TIL implant when more tumors were found in small intestine and a new brain spot. She currently has tumors on both lungs adrenal gland, small intestine, Back and one spot on the brain again. Still fighting and going for radiation on one lung tumor and back this week since the lung tumor is restricting her airway. Just wondering if anyone has had this chemo with any help or success. Any words of wisdom for other treatment would be appericated.

Trust in God - Live one day at a time

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lydiareedtaylor's picture
Replies 4
Last reply 12/10/2013 - 11:38pm
Replies by: Anonymous, Charlie S, delora, kpcollins31

hi, hope everyone is feeling well! Need some advice. I began my treatment in June...was just in the hospital.."bad batch", never been sooo scared. Doc has me off treatment for 2weeks.....my labs now are "normal", scans show "Cancer free". my question is, DO I PUT MY BODY BACK INTO THE TREATMENT NIGHTMARE? If i stay off, how long roughly will it take my body to bounce back? Am still very week, still some side effects.  Thanks, for your time & GOOD HEALTH TO US ALL, lydia

lydiareedtaylor

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Anonymous's picture
Replies 4
Last reply 12/10/2013 - 11:39pm
Replies by: Anonymous, Cooper

We have been told that Dr Infante is really good. Love to hear your thoughts

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JoshF's picture
Replies 7
Last reply 12/10/2013 - 11:39pm
Replies by: Anonymous, BrianP, jogo, awillett1991, aldakota22

I saw doc today before my final ipi infusion on Wednesday. Thyroid function is off so I'm going on thyroid meds starting tomorrow. Onc said this would be forever and a common side effect of ipi. She felt this is most likely an immune response. I have no idea....I've felt really good since treatment started. I've had some ongoing fatigue, few dry itchy patches of skin...mostly on ears and cramping day of and day after infusion. Outside of that, I can't complain at all. Anyone else have similar side effect with thyroid? Didn't seem like big deal at all. My thought was...if drug is working and I can get past mel.....then I'm good. 

Anyway...looking forward to last treatment...scan....Xmas break and then get ready to check in for IL-2 right after New Year which I understand is no treat. I'll do what I can to beat the beast down!!!! Praying for success and well wishes for all melanoma warriors out there.

 

Josh

Let's work for better treatments....for a cure!!!!

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delora's picture
Replies 11
Last reply 12/19/2013 - 11:17pm
Replies by: delora, swissie, Anonymous, buffcody, awillett1991, JoshF

I had the PET scans last Thursday along with a brain MRI.  The nurse called on Friday and said the PET Scan was clean, but they did not have any results for the brain MRI.  I was happy to hear the news but am still concerned about the Brain MRI.  I know I probably shouldn't, but I started researching on the likelyhood that melanoma could spread to the brain from the leg first.  Has anyone had this happen or heard of this happening?

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Anonymous's picture
Replies 1
Last reply 12/10/2013 - 11:36pm
Replies by: Anonymous

Nature | Q&A

Hopes raised for simplification of cancer research

Incoming director of major US research centre predicts identification of key genes to target with cancer drugs.

09 December 2013
 

Joan Massagué directs the Sloan–Kettering Cancer Institute.

Memorial Sloan-Kettering Cancer Center

Cancer biologist Joan Massagué was appointed as head of the research arm of the Memorial Sloan–Kettering Cancer Center in New York last month. Nature asked him what areas of cancer research excite him, and how the field can pick the most promising drug targets from the overwhelming array of gene mutations that have been linked to cancer.

Where are we in basic cancer research?

I don't relate any more to labels of basic and clinical sciences; it's all becoming one. Ten years from now, we will be looking back at this decade as the one in which those two circles, like the circles in the MasterCard logo, became even more priceless by becoming one.

In what areas is the most rapid progress being made?

Metastasis is a big one. Epigenetics is very important because we now realize that although oncogenic mutations initiate tumours, epigenetic alterations are most of the stuff of getting tumours to progress metastatically and clinically.

A third one is to exploit the genetic profile of patients who have an unusually good response to a drug that most other patients failed to respond to. Why did that patient respond? How could we exploit that knowledge to make the drug effective in a larger segment of patients or for a longer period of time?

It has been difficult to find new drug targets through projects such as the US National Cancer Institute's Cancer Genome Atlas because the mutational landscape of tumours is so complex. Won’t epigenetics just complicate the problem?

The heterogeneity is daunting, but what lies at the end of the discovery road is the identification of the gene products that cancer cells use to form metastases, to resist therapy, to stay latent while awaiting their chance for regrowth. There will not be thousands; there will be a few dozen, no more.

Nature just published a paper1 showing that different drug-screening projects get different results. Do you think there needs to be more standardization in drug discovery?

We are at the beginning: there is confusion, and we have to learn to be better at a new science. It happens with every segment of human activity. When you're exploring the unknown, you may not take the best route.

I can’t let you go without asking: what do you think of the current state of research funding?

It is ironic that at a time of explosive capabilities, when there are very important deliverables on the table — delivered — now is the time when the funding is tougher and tougher every year.

The public needs to be made aware that what it wants costs money. For scientists, it is more important than ever to explain what they do in plain English or whatever language their public speaks, because after all it is the public that makes this possible. Scientists who do have the skill to communicate well must do it. Not just for funding — there is a moral obligation.

Nature
doi:10.1038/nature.2013.14318
References
  1. Haibe-Kains, B. et al. Nature http://dx.doi.org/10.1038/nature12831 (2013).

    Show context

 

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FAQs December 09, 2013
 
Frequently Asked Questions in Oncology: Melanoma
 

 

Members of the PracticeUpdate Oncology Advisory Board answer the most frequently asked questions by oncologists.

Question: How wide a margin should be obtained in the definitive surgical procedure?

Answer: If the depth of the melanoma is ≤ 1 mm, a 1-cm margin is sufficient; but, if the depth of the lesion is > 1 mm, a 2-cm margin should be considered and definitely obtained for lesions deeper than 2 mm.

Question: When should a sentinel node procedure be performed?

Answer: In patients with “adverse features”: lesions 0.75 mm or deeper (this is a relatively new recommendation, changed from 1.0 mm); those with positive deep margins; and those with lymphovascular invasion.

Question: What types of testing should be performed at the time of diagnosis?

Answer: In asymptomatic patients with stage I and II (node-negative) disease, no laboratory or imaging studies should be ordered. One should consider imaging (chest x-ray; CT or PET) and perhaps laboratory testing in stage III (node-positive) and IIB patients, especially if adjuvant therapy is being planned.

Question: What kind of follow-up is recommended for resected melanoma patients?

Answer: For patients with early-stage (I and IIA) disease, examination of the skin and regional lymph nodes is recommended every 3 to 12 months for at least 5 years and then annually. For higher-stage patients who are at more risk for developing recurrent or metastatic disease, one could consider adding a chest x-ray and/or CT/PET periodically.

Question: Who should receive adjuvant therapy and what kind?

Answer: The only approved adjuvant treatment in the US is high-dose interferon, which has limited efficacy. Patients are encouraged to enter a clinical trial, such as the ECOG E1609 adjuvant trial, offered nationally; this is studying ipilimumab vs interferon.

Question: What treatments are available for metastatic melanoma and how should they be used?

Answer: Options are increasing, and sequencing of the various agents is somewhat controversial. All patients should have their tumor specimen tested for the BRAF mutation, and, if it is present, a BRAF inhibitor should be offered initially or after failing immunotherapy. Ipilimumab or IL-2 is probably the most effective initial treatment. Chemotherapy should be reserved for second- or third-line treatment. Again, patients are encouraged to seek out clinical trials.

 

Copyright © 2013 Elsevier. All rights reserved.

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Anonymous's picture
Anonymous
Replies 0
Interview December 09, 2013
Top Stories of 2013: Melanoma

 

 

 

PracticeUpdate: In your view, which development that occurred in 2013 in melanoma research could have the most significant impact on clinical practice?

Dr. Kirshner: The reporting of the results of additional clinical trials of antibodies against the programmed death 1 (PD-1) receptor and ligand (PD-L1).

The most striking of these studies was presented at ASCO 2013 and promptly published by Wolchok et al in The New England Journal of Medicine in July.1 Metastatic melanoma patients treated with the combination of ipilimumab and nivolumab had a disease control rate of over 65%! The majority of responses were major and are predicted to be durable.

Additional reports of T-cell checkpoint inhibition presented at ASCO add to the growing body of evidence that inhibitors of CTLA-4, PD-1, and PD-L1 are effective treatments for melanoma, with a number of long-term survivors. Patients progressing on ipilimumab can respond to nivolumab or even to retreatment with the same drug and schedule.

PracticeUpdate: What specific changes have you observed or do you foresee as a result of this development?

Dr. Kirshner: I expect FDA approval of nivolumab in the next year and the approval of even more checkpoint inhibitors in the near future.

PracticeUpdate: Would you put this development into historical perspective for the practicing physician?

Dr. Kirshner: Not too long ago, treatment options for metastatic melanoma were very limited. Responses to chemotherapy are poor, in general, and toxicity can be substantial. Immunotherapy (interferon and IL-2) is toxic, for the most part, but occasional durable responses were seen, usually in patients with more limited disease.

T-cell checkpoint inhibitors have a different mode of action than prior treatments (blocking inhibition activates T cells for more effective immune destruction of the metastases). These are the most active treatments for metastatic melanoma to date, and toxicities are manageable.

PracticeUpdate: Would you sum up in a single sentence why you chose this development as the top story of the past year?

Dr. Kirshner: The development of new T-cell checkpoint inhibitors (specifically anti-PD-1 and anti-PD-L1) not only adds to the armamentarium of treatments for advanced melanoma, but there are reasons to believe that these drugs will be active in a wide range of malignancies that would respond to immunotherapy.

Reference

  1. Wolchok JD, Kluger H, Callahan MK, et al. Nivolumab plus ipilimumab in advanced melanoma. N Engl J Med. 2013;369(2):122-133.
 

Copyright © 2013 Elsevier. All rights reserved.

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Anonymous's picture
Replies 4
Last reply 12/10/2013 - 11:34pm
Replies by: Anonymous, NYKaren, Mat

Does anyone know of any other options when the disease continues to progress on this combo?

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Hi all,

We're looking to chat with patients who have been involved with the Tafinlar (dabrafenib) and Mekinist (trametinib) combination trial. Please email lsmith@melanoma.org if you are interested in speaking with us about your experience. Thanks!

Shelby - MRF

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Jasper's picture
Replies 10
Last reply 12/17/2013 - 10:07am

Hi! I had a biopsy 3 weeks ago, came up melanoma 1.2mm 1 (mitotic rate) that's all I really know. I will be having the surgery to remove margins and lymph nodes in 4 weeks. That's 7 weeks from biopy to margin removal. Is that too much time? Does the biopsy encourage spread through blood? I see most people have their surgeries sooner so I am worried.

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