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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cavsnut's picture
Replies 3
Last reply 8/30/2014 - 7:39am

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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delora's picture
Replies 1
Last reply 8/30/2014 - 12:57am
Replies by: Nal64

Hi All,

I am currently Stage IV in a clinical trial with Ippy and a clinical trial drug.  I love my Dr.  She is the absolute best.  However, the nurse in charge of my clinial trial is a disaster.  She has made some major mistakes, put in for incorrect blood tests, delayed my treatment on two occasions, sent me to the wrong Dr for my week off treatment bloodwork, and a few other things.

For my last two appointments, she has stayed in the room.  My "feeling" is that she is worried I will tell the Dr.  She apologizes over and over every time the Dr leaves the room.  At first is was no big deal, I just figured we all make mistakes, but too many apologies makes me feel really uncomfortable.  I am unsure of what to do.  I want the focus to be on treatment, not on complaints.  However, I am really uncomfortable with her and, honestly, I am very stressed when she stays in the room.

 

I just don't want to say something that could potentially upset my Dr or her.  I think the trial only lasts six more weeks.  Part of me just thinks I should ride it out.  

I know this isn't the typical stuff we talk about on here.  I just don't know what to do.  I don't usually have experiences like this.

Any thoughts or similar experiences?  From my understanding, she is the only person who works with folks in the clinical trials.  

Delora

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Anonymous's picture
Replies 5
Last reply 8/30/2014 - 12:09am

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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hass71's picture
Replies 6
Last reply 8/29/2014 - 11:43pm

hello

tomorrow my wife will start her first session on Yervoy IPI treatment (melanoma stage 4), so i need some advices going through this treatment, what shall we expect, how to deal with side effects.

thank you for your support
need your prayers

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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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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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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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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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Brigitte's picture
Replies 8
Last reply 8/29/2014 - 8:22pm

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
Anonymous
Replies 10
Last reply 8/29/2014 - 4:11pm

My mom is starting MK-3475 on Tuesday after no success with Yervoy.

Matted nodes removed mid-February 2014. They had to leave a small piece on her vein so as no to compromise the vein/leg.

Lymphodema of her leg and extreme swelling of her abdomen. Fatigue, sleep deprived, can't get comfy, swollen stomach causing loss of appetite and nausea. Scan Last Friday shows cancer moved to nodes in stomach, hence the fluid in her belly. Brain scan negative.

Starting MK-3475 on Tuesday. I'm not sure what to expect.

Doctor stated that if she waited and gave the Yervoy more time to work that she could find herself bed ridden with organ failure in a couple short weeks. This seems to be her only chance.

I can't seem to find anything definitive on what her chances are with this trial drug. It's now an expanded access protocol, so we do know that she won't get the placebo.

Does anyone know where I can find anything that outlines the effectiveness of MK-3475? I know there is no black-and-white here, but I just need something, anything, at this point.

We are all a mess. Worst nightmare. There is no other way to say it. Watching the most important person in your life go through something like this is beyond heartbreaking. Watching my parents cope with it, together, is beautiful and also so incredibly sad. My mom is such an amazingly strong and profound life force to SO many people. I am still in denial and coping - if you can call it that - poorly. I don't even know where to begin.

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MacMac's picture
Replies 13
Last reply 8/29/2014 - 1:53pm

I went to my dermatologist a few weeks ago mostly because my grandma was concerned about what I thought was pimple gone wrong  on the top of my left shoulder (her sister passed of Melanoma).  Being the good grandaughter I am I had it checked out :)  Imagine my surprise when I received the call at work that it was Desmoplastic Melignant Melanoma.  After that all I heard wast "blah blah blah."  I got a copy of my pathology report.  The thickness is 0.92 mm, Clark's level III, Mitotic index of 1, pathologic stage T1b.  From that point forward I feel as if I have been shuffled from Dr to Dr and being told make this appointment go to that office fill out this paperwork.  Yesterday I actually drove to the wrong office.  I feel like I am only really hearing a 1/4 of what I am being told (thank goodness for my family that accompanies me to these appointments). 

I saw the oncologist last week.  He said that there are cancer cells along all the margins of the shave? biopsy that was done.  He said that since there were cancer cells along the margins and I measured at a 0.92 mm it is highly likely there is still cancer left.  He also said my thickness could have been greater since they didn't get all of it when they scraped of the mole.  He feels it could have been close to or a 1mm fairly easily.  He recommended a wide excision on my shoulder.  From the point of the mole it would be 2cm out and all the way around.  He will also be doing a sentinel lymph node biopsy.

Yesterday I saw the plastic surgeon.  Since the cancer is on top of my shoulder I don't have a lot of skin to maneuver to close the gapping hole I am going to have. So he gave me two options:

(1) They will re-arrange the skin the close the wound but this will cause an S shape scar that will run basically from my collar bone near my neck all the way to the outside of my shoulder on the back.  He said that this will require a night stay in the hospital and will be one procedure.  However, he indicated that because of the location the skin will be very tight and under pressure so it will stretch and pull on the scar causing it to widen.  Sounds like it will be a pretty narly looking thing and pretty large.  On the positive note I have freckles so it may act as camoflauge???

(2) The second option will consist of three seperate surgeries each with a 2-4 day hospital stay.  The first surgery will consist of having a temporary skin graft placed in the wound.  After x amount of time (again I am not hearing every detail) I will go back into surgery and have expanders placed under my skin - one near the base of my neck and one on the outside of the shoulder.  The third surgery they will remove the expanders and they will close the wound.  This will give a scar that runs in the direction of a bra strap and will be much narrower since the skin will not be under so much pressure.

I am very concerned with utlimate range of motion of that arm.  I had shoulder surgery on my other arm last year and will never be 100% so I heavily relay on my left arm.  I am worried if I go the S route that my skin will be so tight that it may hinder my movement.

I don't consider myself a vein person so option 2 seems like a lot to go through just for a pretty scar but I am also not sure if i want to look down and see this horrendous thing on my shoulder that may just be a constant reminder of what I am feeling right now.  Also I worry if I ever need a revision to the S scar that my insurance will then consier it cosmetic. 

I still have to go back to the oncologyst and the plastic surgeon for a pre-op appointment and I also have to see my eye Dr and womanly Dr to check for melanoma elsewhwere.  I just feel so lost.  My uncle passed away from lung cancer last year so I just keep telling myself "at least it isn't lung cancer"  but then I say "but this is still scary" I am not sure what to do or what to think and I guess I just need some advise from people who may be feeling the same.  I just feel like I am not allowed to make a big deal of any of this because the perception out there is "skin cancer is the best cancer so you are lucky"  (or maybe that is just my fear - that people think that)

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Ashley's picture
Replies 2
Last reply 8/29/2014 - 1:22pm
Replies by: 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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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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Annalive's picture
Replies 5
Last reply 8/29/2014 - 10:07am

Hello All,

I recently had a surgery for metastatic tumor near L4-L5 spine.  Because of close proximity to spinal nerve root, doctors ended up doing a partial ressection.  They are now suggesting that I do 3 doses of high dose Stereotactic Radiation to rid body of remaining cells at that site.  Recent PET showed no new sites of disease. There is still some risk of nerve damage.  I have never done radiation and am wondering if anyone has experience with this type of treatment? outcomes? side effects?  Thank You,  Ann 

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casagrayson's picture
Replies 1
Last reply 8/29/2014 - 8:01am
Replies by: 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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