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
Anonymous
Replies 6
Last reply 8/27/2014 - 11:27am
Replies by: Anonymous, arthurjedi007, G-Samsa, RJoeyB

This is a qestion for anyone that can help and I will provide all of the information that I have. Here goes. I work with a lady that was diagnosed with stage 4 OM about 6 years ago. This is where I don't have all the info as to what happened at this point but fast forward about 5 years of checkup and clean scans to the last year where she has had a mestastasis to the liver, She has taken IPI that she did not tolerate very well ( made her very sick with colitis) She has also had a few ablations to the liver that did well but the tumors would come back. Last week her doctor sent her home with a bottle of pain pills and told her that was all he could do for her. She now has active tumors in both lobes of the liver. She sees doctors at The West Clinic in Memphis,TN. I'm not sure if the doctor is a melanoma specialist or not but my real question is this. Does anyone know of any stage 4 melanoma studies going on now that she could possibly get into. This could be her last hope!

Thanks for any input & again what i have stated her is really all the info that i have about her case.

 

 

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Anonymous's picture
Replies 4
Last reply 8/27/2014 - 1:37pm
Replies by: ChemistLN, Janner, Anonymous

I was just denied a 20 year term life insurance policy because of an early stage 1 melanoma from a couple years ago.  If the survival rates are really as positive as what I thought, why would an underwriter decline coverage if the expected survival is 90%+ ?

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arthurjedi007's picture
Replies 8
Last reply 8/27/2014 - 8:32pm

Just an update if anyone is interested.

I believe I'm really lucky with this brain stuff so far. Basically the one skull tumor that is growing is pressing on the outer layer of the brain and displacing the brain but nothing is in the brain. The other 2 tumors are actually a little smaller than they were in February with one of them still pressing on the outer layer of the brain but it doesn't displace it. I assume that's the PD1 working some but dunno. So why didn't they radiate last February when the mri said I had a tumor pressing on my brain? I dunno. That was my local onc doc then and now I have my mayo doc. That was also the time I was almost paralyzed so I didn't really look at the mri i guess.

Anyway my local radiation doc is actually more concerned with the spine. Apparently there is some more spinal cord stuff happening like last February although I'm not really experiencing much symptoms yet. My mayo doc did confirm after reading the mri reports that the spine needs radiated too. So the plan is PD1 on Sept 3. Radiate t12 and l2 in spine at 30 gray in 5 fractions Sept 8 to 17th. That is the same plan that shrank the t10 in March and now the PD1 is continuing to shrink it.

For the skull though he basically said he hasn't decided the best way of doing it. He hasn't got it in his head yet he said. He also said he will be talking to his colleague about it. He also didn't want me on the table that long and not being able to stay still for 30 plus minutes. So he's going to decide how to do it and do it after the spine. So the plan is PD1 on Sept 24. Radiate skull in some fashion starting around Sept 26.

Like Joe said about the dosage needing to be higher per zap for melanoma he did say it would be higher than 3000 (ie: 3 gray I think) probably something like 4100. I guess that is a little over 4 gray. But he was not sure about a minimum of 6 gray to the skull. But he hasn't decided anything with the skull yet. He was talking more about focusing the beams directly and things instead of the standard area blast. So I think he's on the right track. I also think if he can shrink it even a litle maybe the PD1 will take over.

I hope I get the radiation/pd1 combo miracle that some people get. We shall see.

 

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Hey all,

 

  I'm a 33 year old male living in Albany, NY.  I have been newly diagnosed with a malignant melanoma on my left calf, at the site of a large mole I've had for many years.  It seemed bigger than I remembered it a few months back and after scheduling a biopsy with a dermatologist, I've been referred to a plastic surgeon who's scheduled for a wide excision in their office in just over a week or so.  I'm having a hard time deciding about a Sentinel Node Biopsy at the time of excision.  

  I will preface any clinical info about the melanoma itself with this: I'm a musician who works part-time in the food-service industry who has been uninsured for many years, and without a primary doctor to turn to for advice on this.  

   I feel pretty comfortable with both the dermatologist and the plastic surgeon, but I don't think either of them are melanoma specialists (and I don't say that to demean their capabilities, just that both of them work at practices that are more cosmetic than medically drivien).  

   The clinical test results (which I'll post for reference here) seem to mostly point to a SNB being unnecessary, but the plastic surgeon mentioned a couple of times that that b/c I'm young, it would be something to consider (I've read that for people under 40 with malignant mel., SNB is recommended).  The plastic surgeon (who, of course, I would never expect to give a definitive "yes you should" or "no, you shouldn't" answer to) said that if he were in my position, he would consider having it done as the Breslow thickness is close to the range they would recommend testing for anyway.  In his own words, he's "on the fence" about it.  He also mentioned that complications, possibly long-term, can occur with node removal, such as fluid pooling in areas associated with whatever lymph they remove.

 

  Here are some of the clinical details

   White male, 33 years old, smoker

   Mel. Location: Left Calf

  Type: superficial spreading

  Breslow Thickness: 0.88mm

  Clark level: 3

  Mitotic Rate: 1/mm2

  Vertical growth phase present

  No ulceration, no regression, no microsatellitosis, no angiolymphatic invasion, no neurotropism

  TIL's: non-brisk

  Precursor lesion: present, intradermal nevus

  Pathologic stage: T1b NxMx

  No family history

 

  Can anybody argue for or against a SNB in this context?  I feel reassured that the thickness of the tumor is in the low range, but knowing how long the spot has been on me and NOT knowing exactly how long it has been cancerous has me a little stressed about making the desicion, and wondering if anybody has any wisdom to impart concerning low-stage diagnosis and the desicion to go ahead with or skip the SNB.

   I mention again here that I'm uninsured.  An in-office wide excision of the mole (I don't have the exact number here, but I think the dermatologist said 16mm across at the widest point) will run about $1500 out of pocket at the plastic surgeon, and uninsured hospital bills associated with a SNB will be far more than that I'm sure.  I realize there is no price to put on your health, but I earn just a few hundred dollars over any kind of Medicaid assistance levels, working for a small mom-and-pop shop that hasn't been able to raise my wages in any meaningful way in over 5 years due to their own financial struggles, and while I'd be GREATLY, GREATLY relieved to find a node biopsy returned a negative diagnosis, I'd be hit pretty hard in the purse if I raked up several thousand dollars (I'm guessing at least?) for the sake of the knowing...

  For the most part, the clinical results say SNB wouldn't be needed, but I've become a bit worried that some of the constantly feeling run down and almost sick all the time isn't just a reflection of my lifestyle, but possibly indicitave of something else.  If I understand correctly, you have to decide before they remove the melanoma otherwise they can't pinpoint the lymph associated with it before t, which is a tough desicion to make quickly.

   So a few quick questions and then I'll wrap up with hopes of getting some help from what seems to be a great community of supportive folks:

   Why is SNB reccomended for people under 40 even if the initial biopsy results and clinical info seem to point to not needing it?  Is it because they have better resilience to removal of a node, or is it because lymph node cancer can build for longer periods of time in young people before they start noticing it, hence the idea of catching it early?  I didn't get to ask the plastic surgeon about that b/c I forgot, not b/c he wasn't attentive to my questions.

    How often do people experience permanant or long term complications based on the removal of a lymph-node for the purpose of a SNB?  I've heard that fluid draining can be an issue after removal, and I wonder what kind of long term that in itself needs.  Do you need to regularly drain fluids in a medical environment for areas affected by a lost node, or will being active and on your feet all the time take care of itself naturally?  Does anybody have any stories about this, good or bad?

   Should I consider a second opinion at this point?  I obviously want this thing to come off ASAP, but I'm wondering if someone with a bit more of specialty (melanoma specialists in Albany seem to be pretty few and far between) could be of better help in making this desicion.  I think that both docs that I've seen are very smart, capable men, and they've been quite patient with my questions, but again, neither are of them are my primary care physicians (I don't have one at this point and have used a medical clinic in downtown Albany for many years) with any knowledge of past health history, etc...

   Any ideas on low-cost, sliding-scale, specialists in the upstate NY area would be more than welcome too!

   Thanks to anybody who may be able to offer any insight on this!

  

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eturner's picture
Replies 6
Last reply 8/28/2014 - 1:28pm
Replies by: eturner, arthurjedi007, kalisama, Anonymous

Hi, I have a question. My husband has stage 4 melanoma in spine, hips and pelvis and a few mets on skull as well and maybe two mets on his right lung. He is taking the Braf combo drug right now (5 months in) Before the braf drug he was in a huge amount of pain in hips and back area..... After starting the braf drug no pain (mets still in bones and lung but growth is at a standstill). About three weeeks ago he stared having pain in hip down left leg into calf and ankle, he has also started taking the morphine he was given before staring the braf drug ( during the past 5 months he has needed no pain medication). Even on the morphine when he goes to bed he can't get comfortable and cant get to sleep. On Friday he had a  CT scan of hips and spine area.... It found no growth in bones..... WHAT COULD BE THE PAIN?? This Dr at UVA said they will now do an MRI on Friday!! What will the MRI be looking for?? Any advice or help would really be appreciated!! 

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cavsnut's picture
Replies 3
Last reply 9/3/2014 - 11:11pm
Replies by: cavsnut, Bubbles, SABKLYN

I developed a seroma from what I've researched in one of my groin excisions from surgery last Tuesday where 2 lymph nodes were removed. Is this something I should contact my doctor about, or will it go away eventually? It's about the size of a Ping pong ball btw

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Brigitte's picture
Replies 10
Last reply 8/30/2014 - 10:31pm

I had a conseratvie excision on my back. Yesterday I got the stiches out, and was told I didn't have to do any wound care. The area still feels raw and I was wondering if there is anything I can do to help it heal faster? I dont really want to put valsine on it. 

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Anonymous's picture
Replies 7
Last reply 9/2/2014 - 3:18pm

My husband will start pembrolizumab next week, after having had Yervoy with no results, and disease progression during the Yervoy treatment period.  What I'm looking for is some GOOD news from those folks who have had (blessedly) good results with the pembrolizumab.  Let me hear it!

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vlmd1986's picture
Replies 2
Last reply 8/29/2014 - 11:09pm

Hi!

I'm scheduled for a left groin CLND tomorrow, and my doctor said he's going to do a sartorius muscle flap. He said I wouldn't really have any limitations afterward from that, but I forgot to ask specifically about skiing!!

Have any of y'all had this done and then gone skiing afterward? (Not like the next week, but anytime after the surgery, haha.)

Thanks!

V

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Ashley's picture
Replies 3
Last reply 8/30/2014 - 2:09pm
Replies by: Bubbles, kylez, DonnaK

My dad just started this trial and was curious if anyone out there is on it and if you could tell me your experience so far?  He's on the last cohort with the max tolerated dose.  We're just praying for a miracle.

Thanks!

Ashley

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casagrayson's picture
Replies 2
Last reply 9/1/2014 - 6:58pm
Replies by: jahendry12, Fen

One of my dear friends has been battling Stage IV melanoma since March 2013.  As so many others, he had a melanoma removed years ago and then completely forgot about it.  He went to the ER last March for kidney stones, and the scans picked up tumors in his abdomen.  He tried everything,  starting with biochemo at MDA and finally got on the Anti-PD1 trial.  Unfortunately, the melanoma was just too aggressive.  After three brain surgeries in less than four months, his family chose to move him to hospice ten days ago.  He lost his battle early this morning.

RIP, Trey.  

Strength and Courage,

Susan

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arthurjedi007's picture
Replies 9
Last reply 9/5/2014 - 11:28am

I'm trying to decide whether I should have surgery or radiation or maybe both. Any thoughts would be appreciated.

I have 3 tumors in my skull or calvarium as the report says. The largest is growing and pressing on the outer layer of my brain and displacing it. It is 3.65 cm x 2.3 cm x 2.8 cm if I read this report right. There is also a lump on my head there that went down a lot with the PD1 then increased at the time of the MRI and is now slowly going back down some. It is in the posterior parietal bone to the right of the midline.

The 2nd tumor is 3 cm but is less expansile than it was in Feb. It is in the left frontal bone along the high convexity.

The 3rd is somewhat less expansile than it was in Feb but does appear to involve the underlying dura. It is in the high left parietal. Doesn't say its size.

So the Drs were talking radiation for the 1st one but now maybe surgery instead. With pd1 for the other 2.

I also have a couple dozen other tumors but these are the only ones in my head that I know of. They will be doing radiation again to my spine soon except this is further down where they haven't done before (t12 and l2).

If they do surgery I was wondering what that would be like? What would this plate they mentioned be like? How long would it take to recover from the surgery? Would it be done between the 3 week PD1 cycle or would I miss some PD1? What am I not asking that I should be cause I just don't know what to ask?

Thanks for any thoughts on this.

Artie

 

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cavsnut's picture
Replies 7
Last reply 9/3/2014 - 11:16pm

I got my results back from my SLNB today and one of the lymph nodes out of the four taken out was positive.. believe it was .9mm..So with that said opinions on getting the superficial nodes removed or going with ultrasound monitoring of the nodes until anything else shows up? I'm really leaning on not having anymore nodes removed at this time as I work standing for 10/12 hours a day. I know the side effects of having more lymph nodes removed from the groin is extemely high and with it showing up in only one of the four removed believe I'll play the 80% odds of it not being in anymore...thoughts?

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Mostly for Gsamsa and Brian P, as well as any of you who are interested: After we had talked about pneumonitis.... I was reading, then posting, an article that actually included some data about its occurrence with anti-PD1 therapy!  The article is a little older but does address some of the latest combo therapy.  And...because it is a compilation of data from a year ago....it breaks down the beginning results, with commentary re side effects, and some pretty cool, straight forward explanations of how it all works.

For what it's worth:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/08/combination-therapies-for-melanoma.html

Wishing you all my best!  Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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JerryfromFauq's picture
Replies 1
Last reply 8/30/2014 - 11:28am
Replies by: Resilient4Life

What is pharmacogenomics?
Pharmacogenomics is the study of how genes affect a person’s response to drugs. This relatively new field combines pharmacology (the science of drugs) and genomics (the study of genes and their functions) to develop effective, safe medications and doses that will be tailored to a person’s genetic makeup.
Many drugs that are currently available are “one size fits all,” but they don’t work the same way for everyone. It can be difficult to predict who will benefit from a medication, who will not respond at all, and who will experience negative side effects (called adverse drug reactions). Adverse drug reactions are a significant cause of hospitalizations and deaths in the United States. With the knowledge gained from the Human Genome Project, researchers are learning how inherited differences in genes affect the body’s response to medications. These genetic differences will be used to predict whether a medication will be effective for a particular person and to help prevent adverse drug reactions.
The field of pharmacogenomics is still in its infancy. Its use is currently quite limited, but new approaches are under study in clinical trials. In the future, pharmacogenomics will allow the development of tailored drugs to treat a wide range of health problems, including cardiovascular disease, Alzheimer disease, cancer, HIV/AIDS, and asthma.
http://ghr.nlm.nih.gov/handbook/genomicresearch/pharmacogenomics

I'm me, not a statistic. Praying to not be one for years yet.

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