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.

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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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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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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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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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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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liam1209's picture
Replies 12
Last reply 8/28/2014 - 11:48am
Replies by: RJoeyB, hbecker, Mat, liam1209, Ed Williams, Anonymous

After seeing Dr. Steven O'Day at BH cancer center and Dr. Wong at USC here is where we are:

Would love to hear your thoughts on treatment options and/ or clinicla trials you would suggest. BRAF test negative 

In July of 2013 a nevus/nevi was removed from the crown of patient’s head and pathology was negative for melanoma

In February of 2014 patient experienced swollen lymph nodes neck and armpits patient thought due to contact dermatitis and generally “feeling poor” for a few days.

Lymph node on left neck behind and below ear remained swollen.  After consults and CT lymph node surgically removed June 18.  Results on July 21of immunochem analysis were for metastic melanoma (MM)

Aug 4 CT indicates two small nodules (about 1 cm) in lungs

Aug 18 cerebral MRI negative and PET/CT indicates only the two nodules in lungs.  Decision on needle biopsy of lung nodules pending

Patient has definite Stage III and probable Stage IV metastic melanoma with unknown (suspected July 13 pathology report in error) primary origin.

Recommended treatment options:

1.       FDA approved Interleukin-2 or IL-2 (requiring hospitalization) possible severe reactions during treatment but post-treatment side effects.  Understand low (10%) “cure” rate

2.       FDA approved  Ipililimumab  or Yervoy (outpatient with supervision) possible reactions and side effects before and after treatment. Understand moderate (30%) “cure” rate

3.       PD-1 which is expected to be approved in October by the FDA (outpatient with supervision) possible reactions and side effects before and after treatment but fewer than #2.  Understand good (65%) cure rate and works well with MM lung tumors.

4.       Clinical trials

 

Cheers 

Liam

Liam 

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cavsnut's picture
Replies 2
Last reply 8/28/2014 - 9:06am
Replies by: 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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audrey_borgstrom23's picture
Replies 2
Last reply 8/27/2014 - 10:23pm
Replies by: Kristin_22, Janner

A couple questions that I hope someone can answer!

I am a 23 y/o female, diagnosed with melanoma 5 days ago. The initial biopsy was 12 days ago. I was told at the time this "spot" was removed that it didn't look like anything but did a shave biopsy just in case. It was done by a PAC (a young woman only a few years older than myself) who said she would be surprised if it came back as anything.

Exactly a week later (last week Wednesday) I got a call that it came back as melanoma and that I had to go back to get the surrounding area excised. The next day I had the surgery done. They said all should be fine, come back in 6 months for a check up.

On Friday, I had the dermatologists office fax over the pathology report from the initial biopsy. Lots of big words, but a couple things stood out. It said the melanoma was at least 0.4mm deep and at least a clark's level III. I think it read "at least" because there was a sentence that stated that although a majority of the depth had been sampled, there was transection at the base and a deeper more invasive melanoma cannot be excluded.

Now to me, I'm thinking that when this PAC did the biopsy, she didn't think it was melanoma and so she actually shaved off most of the tumor, but not all of it.

I'm wondering if this has increased my chances of the spreading of the cancer. Or if it doesn't really affect that at all. And what are the chances that the melanoma is in fact deeper than 0.4mm? I understand this is a thin melanoma. The results of the excision should be in by tomorrow, but I just wanted some input from anyone with experience with this?

I appreciate your time in reading this, hope to hear some input soon! Thank you all greatly!

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Resilient4Life's picture
Replies 2
Last reply 8/27/2014 - 10:20pm
Replies by: Kristin_22, Janner

 

Just received notice of my surgery date for Stage IA melanoma. It is exactly one month after the biopsy. Reading on the web indicates this is fairly normal, but a wait of 1-3 months would be unwise and excessive.

Should I do anything special for the area while I wait? The dermatologist's office gave me a petroleum based ointment. I have read that petroleum products cause cancer. I'm using a homeopathic salve instead. Does it make any difference how clean I keep the spot? (Hydrogen peroxide 3 times a day followed by ointment) Obviously  some attention is necessary,  but don't want to go overboard.

Thank you for your response.

 

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