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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JakeinNY's picture
Replies 13
Last reply 7/14/2014 - 9:02am

This study was published last year. Although none of the patients were melanoma patients, it doesn't seem to be a stretch that it may help mm patients.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157418/?tool=pubmed

I personally am already on a carb and sugar restricted diet and although this is such a small study, it is promising and is something worthwhile mentioning.

Do the best you can.

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MixtaJones's picture
Replies 6
Last reply 7/14/2014 - 3:02pm
Replies by: awanning, LuckyMan51, Colleen66, Anonymous, RJoeyB

So I have my 4th infussion of Yervoy tomorrow and am excited but nervous at the same time. I am wondering what is going to happen next? I know I have to wait about a month to get another PET/CT to check how things are going. I have not had one since before surgery so I don't even really know what tumors were left from what the surgeon could not get.

What experience does everyone have after they finished ipi? I would like to believe that after 4 rounds of treatment the cancer is gone and I can start calling myself NED but that sounds pretty unrealistic. Do they do boasts of ipi or more rounds if it is not gone or even if it is gone? If it has spread do they concider the ipi a failure? What constitutes failing a treatment?

Philippians 4:13 "I can do all things through Christ who strenghtens me"

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RJoeyB's picture
Replies 11
Last reply 7/14/2014 - 4:03pm
Posting this as a conversation-starter and also trying to educate myself so if the time comes, I'm not scrambling to ask these questions.  My profile has my background, but long story short, I was diagnosed four years ago (yesterday, in fact) and found to be Stage IV within two weeks of diagnosis.  Very early on, prior to moving forward with a TIL trial at NCI/NIH in Bethesda, I considered a PLX4032 trial at the University of Pennsylvania (PLX4032 became vemurafenib/Zelboraf and as most of us around here know, was approved in the summer of 2011 by the FDA), but was told even by the top person at Penn that if I was eligible for the TIL trial, that was my best option at the time.  (To confirm, I am BRAF-positive).  We've been through a lot since then, with partial responses to some combination of the TIL, IL-2, and ipilimumab, along with many surgeries and courses of radiation.  
 
All throughout, I've continually educated myself about what else is out there, so consider myself pretty informed about immunotherapy, checkpoint inhibitors, targeted therapies, and the roles of more "traditional" surgical and radiation options.  However, as the targeted therapies have evolved quickly, with both Roche's vemurafenib/Zelboraf and GSK's dabrafenib/Tafinlar approved as BRAF inhibitor monotherapies, GSK's trametinib/Mekinist approved as an MEK inhibitor monotherapy, and of course dabrafenib and trametinib approved as a combination therapy, I've found that the guidelines for how these options are being selected are vague, which leads to a number of questions:
 
1) Vemurafenib vs. dabrafenib?  Has one shown superiority to the other?  Are doctors prescribing them equally and/or what criteria are they using to select one or the other?
 
2) Monotherapy vs. combination therapy?  Given the approval of the combination therapy, are there still reasons to start with a single agent (either of the BRAF-inhibtors or the MEK-inhibitor)?  If so, what are they?  Perhaps the approval of the GSK combination is driving additional market share to dabrafenib?  (I know Roche and Exelixis have their own MEK inhibitor, cobimetinib, in trials)
 
Again, for now, we have kept the BRAF/MEK targeted therapies in our proverbial back pocket and will cross the bridge if and when we reach it, but it seems that the playing field has become very muddy as to the best use of these options.  It's probable that there still aren't any real answers, yet; that those of us here are the ones ultimately providing answers through participation in trials and use of these new therapies, but if anyone has any insight from their own experiences, I think we could all benefit from hearing.
 
Thanks,
Joe
 

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BrianP's picture
Replies 6
Last reply 7/15/2014 - 12:44am
Replies by: RJoeyB, BrianP, CHD, Maureen038, Anonymous

Just found out my uncle was diagnosed with muscal melanoma.  I'm not as familiar with muscal melanoma as I am with your everyday run of the mill melanoma.  Few questions I have if anyone can comment on:

Is there anywhere and anyone in particular that specializes in or is know as "the place" for muscal melanoma?  I've heard Dr. Hodi and Farber is pretty experienced with muscal melanoma.  He's currently located in Virginia so probably limited to the east coast.

Current thinking doesn't put a high value on chemo and radiation (other than in combination with immunotherapy) for most melanoma but is that not so with muscal melanoma? 

I heard that muscal melanoma isn't as responsive to Ipi as other melanoma (something like only 7%).  Does anyone know if this is true.  Has it been anymore responsive to anti-PD1?

 

Thanks for any advice or information anyone can provide.

Brian

 

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arthurjedi007's picture
Replies 1
Last reply 7/15/2014 - 12:51am
Replies by: lbkimball

I just learned this from my doc at Mayo.  Apparently all of us with this disease are at high risk for blood clots. To help during the 8+ hour drive he said to stop every 2 hours or so and walk for a minute. Apparently that's all it takes. He also said like on an airplane or even in the car to keep moving your feet.

I don't have blood clots but figured I should share this info to help us keep from having them.

 

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lbkimball's picture
Replies 5
Last reply 7/15/2014 - 6:23am

 

Hi there,

 

This is my first post, although I've had stage IV melanoma for over a year. I have 30+ brain mets (mostly tiny lesions, but a couple of good sized tumors) and am starting PD-1 on Thursday. I was on Tafinlar and Mekinist for about 8 months, then that stopped working. I had gamma knife treatment in February, and my doctor put me back on a double dose of Tafinlar. Since then (Feb) my brain tumors have been shrinking but the other tumors in my body continue to grow and more are appearing. I tried one infusion of Yervoy but got very sick, so we decided I was a "failure", which allowed me to access PD-1.

My question is, has anyone here had PD-1 treatment with brain mets? If so, what kind of results did you see? I will be stopping Tafinlar, and assume I'll receive more gamma knife treatments if my brain mets start to progress again. 

Finally, I'm being treated at UCSF by Dr. Daud. 

Thanks for any wisdom you might have for me!

laura

sjkimballs.blogspot.com (my cancer blog)

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cmosley's picture
Replies 3
Last reply 7/15/2014 - 11:07am
Replies by: Gene_S, Socks, MixtaJones

Hi Everyone, 

So glad I stumbled across this resource. 

A few weeks ago I discovered a mole on my head was bleeding on my scalp. After having it removed I found out that it is melanoma. The plastic surgeon said that it was .8mm, no ulceration, and had a mitotic rate of 2/mm2. He's asked me to come back so he can remove a little bit more as a precaution. I'll also be connecting with a general surgeon to discuss further diagnostics; I assume this will involve removing a lymph node.

Does anyone have any recommendations on what to do next? Based on your experiences, what questions should I be asking?

I'm feeling lost here so any insight would be helpful. 

Thanks, 

 

Christian

 

ps - sorry everything is bold - can't seem to turn it off. 

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Anonymous's picture
Anonymous
Replies 0

Hi! This is the first time I have posted here but my nerves are getting to the best of me and I wanted to check in with the group to see if they had any expertise on this subject...

Quick background I was diagnosed with Stage 1 melanoma on the back 4 years ago and have had check ups every 6months since then. 

I have a clear mole on the top of my forehead that gets lots of sun and have had concerns about it for a while but the dr's always brushed it off. I too didn't think much of it, but most recently the mole has become painful to touch or when i brush over it..not sever pain but definitely tender. I made an appointment next week and really want them to remove it. 

Just wondering if anyone else has had a clear mole that was tender that ended up being melanoma or better yet benign...trying to figure out how concerned I should be. 

Thanks :)

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awanning's picture
Replies 10
Last reply 7/15/2014 - 9:33pm
Replies by: kylez, Anonymous, facebookpva, hbecker, awanning, arthurjedi007

Oof. Stage IV. diagnosed a week ago. in my bones, liver, breasts, lymph node(s), neck. 31 years old. I was told I need to start on a BRAF and MEK inhibitor ASAP to "get it under control" before looking at any other treatment options. I'm not seeing those treatments on this forum much and it's making me a bit nervous.  

I can't quite figure out how to find a really good melanoma specialist. There is only one option in my entire state (Colorado), and he has received pretty low ratings from patients for a variety of reasons. Therefore, it is looking like I will need to relocate to find kickass treatment places. But how do you find them? Google tells me MD Anderson, Dana-Farber, NIH. More?

Does anyone have experience at any of these places? I don't have insurance that will travel with me, so I'll need to figure out a financial solution, as well, but my primary focus is the bestest treatment options in the entire world. I'll pay it off for the rest of my life if I have to. Any experiences from folks that have been to any of those cancer centers or have strong recommendations for any others I haven't heard of, would be oh so mightily appreciated. I feel like I am fumbling around in the dark with Google as my only flickering flashlight. I'm so glad I found this forum. 

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sisterkk's picture
Replies 5
Last reply 7/16/2014 - 12:35am
Replies by: Anonymous, Ginger8888, sisterkk

A strange new mole appeared on my right breast.  My husband thinks it is a blood blister, but I'm not so sure.  It's about the size of a pencil eraser and appeared quickly.  What do you think (Picture attached)? 

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5dives's picture
Replies 6
Last reply 7/16/2014 - 1:22am

Hello everyone,

I'm just reaching out, mainly in case somebody has a tip or bright idea I should be moving forward with in the coming days and weeks. 

I live in Chicago. My primary lesion was .81 mm, mitotic rate 1, Clark's level IV, superficial spreading.  I just had my wle / slnb on Thursday, and I'm recovering well at home.  They took only one node for biopsy after the radioactive dye procedure. 

Results today tell me that the surrounding tissue removed with the wle was clear, but the node they took had a "small amount" of melanoma present.  I will get the more definite percentages after a final stain has been run. I will have those results on Thursday. 

I have a few questions for the group.

1. What is the path of melanoma after the nodes? In other words, if there's "only" cancer in one node and in no other nodes, does that mean it hasn't spread beyond the nodes? Do you have any thoughts on having the full inguinal node dissection or if it's not necessary if the scans are clear (brain, lungs, etc)? I do want to be agressive.

2. My doctor is Joseph Clark at Loyola. I have posted about this before, because Dr. Clark works out of Loyola Medical Center, which is not a Center of Excellence, but I know he personally has a very good reputation for melanoma, and he is heading several clinical trials.  I do have access to Northwestern Memorial (Dr. Mary Martini) and University of Chicago (Dr. Thomas Gajewski), but going through the process of getting a second opinion from either of them would delay my scans, which I am eager to have.  I feel like maybe it's okay to have a great doctor in a lesser hospital, but I'm not sure.  I'm open to suggestions. 

3. My understanding is that there are no "good" treatments for stage 3, and that if I hope to have treatment in order to be agressive, I'll need to seek a trial, and there aren't many for stage 3. Do I have that right? 

Thank you in advance for any thoughts you may have, and feel free to ansI wer only the parts that interest you.  I put a lot of trust in the wisdom of this group.

Best, 

Elaine

http://melanomadame.blogspot.com/

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melfighter's picture
Replies 7
Last reply 7/16/2014 - 1:41am

My husband started Xvega last Monday, he seemed fine the 1st 2 days, but around Wednesday, he started feeling very tired and weak. The last 2 days he has not been able to get out of bed, just very tired and very weak. Prior to Xgeva, he was actually feeling much better and with the radiation to his back & sacrum,  he felt the pain was much more manageable.

I read that tiredness and weakness are side effects of Xvega, has anyone experienced the same thing? Is this temporary? 

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It's still early in the process, but any progress is welcome — H.R. 4250 was moved forward by a House subcommittee vote on Tuesday.  The goal is to get the FDA to streamline and act more quickly in testing and approving new ingredients in sunscreen that are already available in Europe and much of the rest of the world (none new in the U.S. since the 1990's).

http://www.nationaljournal.com/health-care/your-sunscreen-is-really-out-...

More details on the bill here:

https://beta.congress.gov/bill/113th-congress/house-bill/4250

Joe

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vivian's picture
Replies 3
Last reply 7/16/2014 - 6:56am
Replies by: RJoeyB, vivian

Well, after being NED for a year and a half, it appears that I have a new lung nodule in the same lobe (left lower) from which I had one removed in 11/12.  That one was a wedge resection done by VATS.  Currently this nodule is small, only 4.5mm, so I imagine the docs will say wait and see if it grows.  However, the chances seem really good that this is another melanoma met.  I don't see either of my oncologists until next week, so I am just wondering if anyone out there has had more than one resection in the same lobe.  I really like to have as much information as possible before I hear what they have to say - especially as I usually turn into some kind of blithering idiot in the oncology office!  Thanks for any help/experiences you can share. 

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ltalley's picture
Replies 4
Last reply 7/16/2014 - 12:34pm
Replies by: Anonymous, Janner

I would clearly like to know more about the Radial Growth Phase versus the Vertical Growth Phase, and if it is so imporatant why doesn't every pathologists report it in a patients path report? All information on this would be greatly appreciated..

Living Life!smiley

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