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 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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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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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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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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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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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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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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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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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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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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Anonymous's picture
Anonymous
Replies 1
Last reply 12/7/2013 - 10:36pm
Replies by: Julie in SoCal

Julie,

I have been thinking about you resuilts of your biopsy and wishing only good news.

Please keep us updated and we are allpraying for you.

Esther

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ecc26's picture
Replies 8
Last reply 12/9/2013 - 8:18pm

Hi, everyone. 

I don't post or reply terribly often but I do follow this board daily and contribute where I feel I can help. I was a stage 3B in Jan 2011, that progressed to stage 4 in Nov 2012. I spent all of last winter getting IL2, which worked on the tumors I had then but shortly after my final course (less than a month) new tumors started sprouting in a very aggressive manor, including several in my brain. After being rejected from a PD-1 trial in June (due to the discovery of the brain mets) I spent the summer recieving WBR and Ipi (too many mets for gamma knife/srs). I had a mixed response in my body, but my brain mets were reduced to only 2 and were much smaller. Since I didn't have good control of all my tumors we decided to again try for a PD-1 trial in early November. We spent nearly the entire month of November arguing with the insurance company about whether or not they would cover the trial and finally got approval just before Thanksgiving and signed the consent literally the day the trial closed. This past week I went up for my pre-screening tests and was pulled out part way through because my specialist "forgot" that I was BRAF positive and hadn't tried the BRAF inhibitors yet, making me ineligible for the trial.

I was furious that he couldn't have figured this out earlier in the month so we could have been looking for a different trail, but as it turns out my MRI from the same day showed 4 new brain mets so I would have been disqualified anyway. I am now ineligible for any trails because of the new mets and my search for trials in NY, MA, and PA did not reveal any others I would have qualified for anyway, but I can't help but wonder if things hadn't been so screwed up in November if I might have been able to get into another trial somewhere (my MRI from the end of Oct was stable/shrinking). Oh well, nothing I can do about it now, doesn't mean I'm not frustrated.

So now I'm on debrafenib/trametinib (BRAF/MEK) that I just started last night. I'm nervous about being on these drugs, not so much because of side effects (although there's some dooseys in there) but more anxious about how well they'll work and for how long. I feel like I'm just waiting for the rug to be pulled out from under me again and then what am I going to do? I also hate that my poor husband is basically watching me get worse and worse despite all the treatments we try. At the moment I feel otherwise pretty good except for some intermittant back pain from the tumors around my kidneys. I lost my voice yesterday afternoon and I"m trying really hard not to read too much into that. 

I guess I'm just hopoing for some words of ecouragement and success stories. It gets harder and harder every time a therapy fails and this one makes me especially nervouse since there really isn't anything left for me right now. Any advice would be appreciated.

Thanks,

Eva

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/7/2013 - 9:22am
Replies by: Anonymous

Don't know for sure if this applies to melanoma, but can't see why it wouldn't.

 

Cancer Persister Cells

Similar to the obstacle in treatment of patients that develop resistance to antimicrobials, acquisition of resistance to anticancer drugs is a major problem in cancer therapy. Most treatments, even ones that work, fail over time because tumor cells become resistant. Different mechanisms of resistance have been described for cancer cells such as modification of drug target and active extrusion of drugs by efflux pumps and, therefore, it was largely assumed that random gene changes confer resistance to drugs [19]. However, this does not explain an increasingly observed phenomenon in cancer chemotherapy; “retreatment response” [20], [21]. In this model, it is proposed that once a small number of cells that survive exposure to drugs that killed the majority of the cells are given a “drug holiday,” they eventually regain their sensitivity to the drug [22]. These observations indicate that acquired resistance to cancer drugs may not necessarily result from stable genetic mutations but may also involve a reversible “drug-tolerant” state [22], [23].

from this article:

http://tiny.cc/meep7w

(Mostly about anti-microbials, but the above paragraph on cancer seemed very intriguing)

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MattF's picture
Replies 1
Last reply 12/6/2013 - 8:37pm
Replies by: POW

Started Tafinlar today 6 Dec.

Will start Mek in 7 days in an effort to ease into it.

it took about two weeks but insurance finnaly figered it all out.

I'll keep you up to date.

Matt

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Scuba Doc's picture
Replies 8
Last reply 3/24/2014 - 4:20pm
Replies by: POW, Scuba Doc, BrianP

Anyone have any experience with the Novartis drug --LEE011 for CDK4/6 and any severe side effects.I am possibly starting a clinical trial next week----thanks in advance ----LindaG

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