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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DMU's picture
Replies 5
Last reply 10/14/2014 - 3:14pm
Replies by: Squash, Girl52, washoegal, DMU, Janner

Met with my surgeon and he's very straight forward. He told me if I had waited any longer to see him and the melanoma was deeper, he would be telling me to gather my Family and get my things in order for I may not be here. 

Well, I'm glad to report that's not the case at this time. He set my surgery up for 2 days from now. Sent me to get liver blood work, chest  X-ray,, and a mammogram. Marked on my back where the surgery will be. Said he doesn't foresee any problems.

thanks for your help.  I'll keep you posted with updates.

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Anonymous's picture
Anonymous
Replies 6
Last reply 10/14/2014 - 7:54am
Replies by: Anonymous, Carole K, Janner, JerryfromFauq

This is a little after the fact now, but should I be concerend that my melanoma was dx with a shave biopsy?   .86MM Thick.     I have been reading that this is not the best method when melanoma is suspected.   

DX as of now  Nevoid melanoma .86mm thick, Clarks level III, Mitioc rate of 3  No ulceration, Non Brisk

Both radical and vertical growth present 

Predominat Cytology:  Epitheloid

Thanks

g

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FDA Approves Drug for Chemo-Associated Nausea, Vomiting

Mon, 10/13/2014

http://www.dddmag.com/news/2014/10/fda-approves-drug-chemo-associated-nausea-vomiting?et_cid=4205391&et_rid=657184103&location=top

elsinn Group and Eisai Inc. announced that the Food and Drug Administration (FDA) approved Akynzeo for the prevention of acute and delayed nausea and vomiting associated with initial and repeat courses of cancer chemotherapy, including, but not limited to, highly emetogenic chemotherapy. Akynzeo is the first approved fixed combination oral agent that targets two critical signaling pathways associated with CINV by combining netupitant, an NK1 receptor antagonist, and palonosetron, a 5-HT3 receptor antagonist, in a single capsule for the prevention of CINV.

 
"Patients receiving chemotherapy face a significant burden due to CINV. Akynzeo may help alleviate part of that burden of chemotherapy by better managing nausea and vomiting up to five days following chemotherapy," said Paul Hesketh, M.D., Akynzeo pivotal study lead author and chair, Lahey Health Cancer Institute and director of Thoracic Oncology, Lahey Hospital & Medical Center. "The results from the pivotal trials show that Akynzeo provides superior prevention against nausea and vomiting compared with oral palonosetron.
As a result, physicians may be able to help patients manage CINV with a treatment that works both at the time of chemotherapy administration, and up to five days following treatment."
 
The approval of Akynzeo was based on the submission of Phase 2 and Phase 3 trials with Akynzeo in patients undergoing treatment with moderately and highly emetogenic chemotherapy regimens for a variety of tumor types. The most common adverse reactions reported with Akynzeo were headache, asthenia, fatigue, dyspepsia, constipation and erythema.
 
CINV is one of the most common side effects of chemotherapy. Its management has been refined over the past several decades, but despite the existence of effective treatments and clear antiemetic guidelines, many patients still suffer from CINV, particularly during the delayed phase after chemotherapy. Studies show that patients often receive antiemetic drug regimens that are inconsistent with CINV treatment guidelines, which call for multiple-pathway targeted antiemetic prophylaxis. Akynzeo provides cancer care teams with two antiemetics in a single oral fixed combination capsule. A combination of an NK1 receptor antagonist, a 5-HT3 receptor antagonist and dexamethasone meets guideline recommendations for optimal antiemetic therapy following highly emetogenic chemotherapy.
 
"Helsinn is delighted with the FDA approval of Akynzeo and we look forward to a successful launch in the United States. We are proud of our long-standing partnership with Eisai and Akynzeo is the newest development in our combined efforts," said Riccardo Braglia, Helsinn's Group chief executive officer. "This approval offers patients access to a new treatment option for CINV prevention that is effective in preventing both nausea and vomiting, particularly in the delayed phase, following emetogenic chemotherapy regimens."
 
"The approval of Akynzeo represents an important development in the prevention of acute and delayed nausea and vomiting for patients," said Yuji Matsue, chairman and chief executive officer, Eisai Inc. "We are proud to achieve this milestone with Akynzeo as we work to further our human health care mission to provide patients going through what we know can be emotionally- and physically-demanding cancer treatment with an additional option for CINV prevention."

 

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

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Bulldogs81's picture
Replies 6
Last reply 10/13/2014 - 8:11pm

On 9/16 I had a mole on my forearm. On 9/24 my derm called and said it was melanoma in situ. She said that she sent it to the university of Chicago for a second opinion, who agreed it was in situ. She scheduled me for an appt for a wle the following Monday 9/29. I went, and the surgeon seemed to have taken a big chunk of my arm out. The scar is about 3 inches long and looks like skin is drooping inward.

 

Anyhow, a nurse from the surgeons office called today with the results. She said that the results came back today from wle and that it looks like they are going to have to a second excision. I was at the grocery store and caught off guard, because I was not expecting bad news and was so shocked that I did not ask a lot of questions. They wanted me to come in this week for second surgery, which is not possible for me so I go next monday. 

I called my derm so she could explain it to me and am waiting for a call back. I am so confused. Does this type of thing normally happen? Or does it mean the original diagnosis of in situ was incorrect? 

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ENaggle29's picture
Replies 15
Last reply 10/13/2014 - 3:33pm

First off, researching something when you get diagnosed is not the way to handle things, but unfortunately, it is what I am having to do.  This is going to be my first post, and probably my most frightening, not because I found out I have Melanoma, but because I know NOTHING about what I am about to embark on.  Sure, I've heard all about it, been scared about it, but always had this "never will it happen to me" idea stuck in my head.  But, here I am, writing about it because it is true.  Regardless on how I want to think.

My derm is having me go to the oncologist for treatment and finding the stage.  I have been having moles removed most of my life.  This last time I went, I only had one removed from my right, middle back, and was going to have more removed later during a surgery (it was scheduled for Tuesday of next week).  That has since been cancelled and they are wanting the oncologist to take care of further removal along with plastics.  

This is all forgein to me.  I have read through a lot of posts, but most of the new diagnosis seem to have a few answers.  Me..I have none.  The diagnosis came from left field.  I am not even sure of what questions I should ask.  Shoudl I call and try to get my appointment moved up to stop the madness going on in my head?  What do all of these words mean?  What will my treatment be like?  

What kind of assistance can any of you help with?  Where should I start?

Thank you all for listening to my rant and help!  I appreciate it!

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Squash's picture
Replies 0

I am just wondering whether other melanoma patients get or regularly have tests on their CD counts ratio aka flow cytometry

If so are most patients counts usually abnormal or out of whack?

And finally if people arent getting tested why not?

No doctor in Australia has ever even given me or suggested a blood test or count of any kind.

In fact when I mentioned it to a melanoma specialist from the Melanoma Institute in Sydney he said he didnt believe they meant much.

Surely a flow cytometry gives valuable advice on how well the immune system is function.

All my blood work is great except for this one which i got done myself overseas.

So in my mind it would make sense to try and stimulate the immune function so the CD4 ratio is back to normal and NK cells are also normal?

 

 

 

 

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Girl52's picture
Replies 4
Last reply 10/13/2014 - 10:18am
Replies by: Janner, Linny, Girl52

If a path report says "metastatic melanoma" and they haven't found the primary -- and assumption is that primary is/was also in skin -- does this mean that the cancer spread from skin site one-to-lymph- system- to skin site two? Or can melanoma metastisize from one skin site to another with no lymph or blood involvement? And if so, does this make the metastasis any less threatening or easier to treat? Or is it not metastasis if no blood or lymph node involvement? Hope this makes sense.

Sis-in-law of person just diagnosed with metastatic non-cutaneous melanoma

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Anonymous's picture
Anonymous
Replies 13
Last reply 10/13/2014 - 7:09am
Replies by: Squash, DZnDef, Manfred, Carole K

Hi Everyone

     I was once a regular on this board and I cannot  tell you the amount of support I got here. I was here for about 8 years religiously and then when I became a Grandma I was and still am very busy... now four grandchildren and number 5 on the way.... all 6 and under.  They are the love of my life

     I apologize ot all of you I haven't been here.  I know how hard I held on to the positive stories from other patients. My story is not any different from any of you.  In fact I have probably had an easeir journey in many ways than most.  The uniqueness is I am 13 yeas 9 months NED after lung and brain mets...NEVER EVER EVER GIVE UP HOPE.

     I was dx n 1995 StageII from an ulcerated mole on my back.. Misdiagnosed originally--- the derm told me I had an INFECTION....  I went back weeks later --- mole was still blleeding..  He kept vascilating back and forth whould I or shodn't I do a SHAVE biopsy.  MY comment was , if in doubt don't do it...  Then again I was very naive at the time.. NOT ANY MORE...  I got a call the following Monday..  saying You have Malignant Melanoma and it has spread.  Here is the surgeons name.  I wasnt it removed no later than Fri.  and you will start chemo the follwiing week.. good nighr have a good evening. Sure youo  _ _ =_ _ _  _ !  After compossig myself I decidd to go to Sloane Kettering,.  Long story short..  Stage II.  My oncologist, thankfullly took the wait and see approach, seeing him more frequently.  the only treatment at the time was INF.. He was not conviced he liked the treatment esp. because of the side effects,  No treatment  just follow ups Sadly my oncologist went into the private sector shortly after I was dx iwith Lung Mets almost five years later.  I flew to JWCI where lungs mets were confirmed .  Both Sloane Kettering and JWCI wanted to remove my rt. lung.  ( I had lessions in both lungs)  OK if I do that what ifffffffffff   the other lung developed more lessions.  ? 

     I am not sure why but I decided against the surgery.  I stared seeing Dr Raymond Chang, an alternative dr. trained at sloane Kettering..  I saw him for about six months and during tht time took herbs he had given me.  

     At his recommendation I started seeing Dr Abraham Chachoua at NYU Langone Medical Center whos is still my oncologis... He ordered complete body scans and when the results came back--- still with the lung issue, he decided to do a brain scan. I tried to reassue him there was matter up there.  Scan came back positive.. MRI confirmed   BRAIN MET.  I knew I was in trouble.  I opeted for gamma Knife-- the tumor Burst and Bled...  GK no longer an option  I had the tumor surgicaly removed the next morning  

     TREATMENT DECISON TIME  GRRRR.  I had alrady been so involved in the Melanoma community and knew my options.  There was nothing other than IL 2 that would give me the best chance..  

     All of that beig said ---Not sure it was FEAR or FAITH...  I had accepted  the inevitable and had my talk with God the night before surgery.  I said  God it its your will for me to come home, please make it quick.  ( I had just been through a horrible divorce for four years, which the stress is wht i believe bought on my  original dx and two recurrences )  I then said  If it isyour will for me to remain on this planet, I will do all I can to help others on their journey.  Not sure if I am still hee for that reason or God decided I would cause too much havoc so he decided to leave  me here..  One thing I have never done my entiere life is asky why somehting  happened to me.  .  i believe things happen as they are supposed to.  All I have done in the difficult times is ask God to give me the strength to get through it.. He has NEVER LET ME DOWN.. I may not have gotten wht I wanted ut I alwasy got what I needed.

      Before I go any further I want everyone to know.. I AM NOT ANTI CONVENTIONAL MEDICINE at all. I  jsut decided to do alternative medicinee because I wanted QUALITY OF LIFE, NOT QUANTITY.....    

     I went on a pretty strict macrobiotic diet, ( my naturopath-- also had me on a vitamin regiment.  I also decided to do Iscador,  more commonly known as Mistetoe therapy combined with two other herbs.  I did thias for almst two years..Within a few monts thee weent' any mrre lung lessions and I have remained NED since then.  In all these years I have never met anyone else who did Iscador until a few months ago.  A young woman in Maryland combined hers with her INF tratments.  She also is NED but suffers side effects from the INF.  Just as a point of information.. ISCADOR  was prescribed by an MD who practices anthroposphy and other alternative medicines combined with conventional.  

     The one thing I want to lave you with is this

TRUST !!!! YOU !!! will make the DECISION THATA IS RIGHT FOR YOU.. Never ever look back, alwasy look forward with HOPE  AND OPTMISM, BELIEVE IN YOUR HIGHER POWER  and TRUST.  NEVER EVER EVER GIVE UP HOPE.

My thoughts and prayaers are with all of you.

Love and Light

Carole

 

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For those of you curious about an Alternative or possibly integrative approach to cancer, a free 11-part documentary begins airing tomorrow (Monday the 13th) at 9pm EST online.  The link below will take you to a trailer, if you watch the trailer and would like to watch some or all of the episodes, you would provide your email address and then you will be provided access to view the series.  I watched their last series and found it informative.  I also noted they didn't send me many emails (maybe one a month) until they started advertising this new series.  They are hoping you will like the series enough to buy it after the free period ends.  Last time, they left the videos available for viewing a full 24 hours after the initial release.  Not sure if they'll do that this time or if you have to watch "live".  There are several doctors, researchers and survivors interviewed.  Here's the link:

http://www.thetruthaboutcancer.com/fall_quest1.php

Cheers - Maggie

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Resilient4Life's picture
Replies 7
Last reply 10/12/2014 - 9:15am

My surgery went "well" according to the surgeon who spoke to my companion that brought me. In the recovery area I pulled up the gown and gazed down on my left upper arm and was shocked by the sight of the incision. It was bigger and it curved here and there. My diagnosis 2 months ago was 1A.

I have waterproof "glue" instead of stitches in the top layer of skin. I was told the underlying layers contain stitches, and the good news is that I don't have to have anything removed. Presumably the glue wears off, and after a 2 week post op check, I see my surgical oncologist twice more at 6 month intervals to confirm there is no new growth at the surgery site.

I understand the mechanics of the WLE, with the primary lesion being excised with 1 cm of good skin surrounding it, then an oval shaped area is cut, to make the closing of the wound smoother, flatter with no bumps or ridges. Still, I was/am distressed by the length of the scar (3 1/2 inches) and the way it looks carved out.

Possible interpretations are; This is normal, the surgeon found something he didn't expect, melanoma excisions aren't supposed to be pretty, straight or asthetic. No one cares about the excision unless it's on your face, and then a plastic surgeon would be called in.

The surgeon told me during the office consult that the depth of epidermis removed is  down to the muscle. I thought I had completely understood everything before I went in. Maybe it's post op blues or just a revisiting of the initial diagnosis when I realized I have cancer. This makes it "real."

I have the ability to use a secure website to ask questions, however the Nurse Practioner that has answered two prior inquires did not even look at my chart before answering. So that avenue is unreliable.

Thank you for any and all responses.

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bostonglory's picture
Replies 4
Last reply 10/12/2014 - 7:55am

Hi there

I had melanoma on my back when I was 16. They did a PET scan and removed bilateral axillary lymphnodes. I have been getting my blood work and x rays until 5 years out (2011).

I had a lapse in insurance and missed two years of skin checks. Anyways, I went to the doctor earlier this week and two biopsies were done. They are relevantly close to where my melanoma was last time. This is a brand new doctor for me too so I wasnt that comfortable. I am awaiting my results but I am also super nervous. I am currently 4 1/2 months pregnant and am paranoid about finding out I have melanoma again and cannot get treatment etc. I work as a nurse and live a super healthy lifestyle excercise, eat right, etc. 

I do not smoke. I dont drink. I wear sunscreen.

 

What are my chances of having melanoma again?

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Girl52's picture
Replies 17
Last reply 10/11/2014 - 9:01pm

Thanks especially to Janner, who has been so helpful, in such a detailed way. I don't want to keep nagging her as new questions occur to me, so want to pose this to all.

My brother-in-law has been diagnosed, via pathology report, with metastatic melanoma of unknown primary. This Tuesday, he will have WLE of spot near elbow, and SNB. Based on whole picture, Janner thinks his primary might have been a regressed tumor also in the skin.

Neither the path report nor doctors has referred to staging (though it must be at least stage III, with any metastasis, correct?).  Slides have been sent to second lab for confirmation of diagnosis. I'm hoping second path report will be much more detailed, with info re: staging, gene involvement, ulceration, etc. Aren't they, usually, in a standard format? 

In researching treatments and clinical trials, criteria for getting a drug or for study participation are sometimes very specific, e.g., "for unresectable stage III patients."

If you have MUP, are you by definition -- and for various purposes -- in the "unresectable" category, along with patients who have identifiable tumors in a location too dangerous to touch, etc.? Have been reading an older thread here titled, "What is Unresectable Stage III Melanoma," and have learned a lot about procurement (or not) of treatment based on these definitions.

Is it usual to have a path report specify a diagnosis of "metastatic melanoma," with no explicit reference to staging?      

Sis-in-law of person just diagnosed with metastatic non-cutaneous melanoma

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liam1209's picture
Replies 5
Last reply 10/11/2014 - 7:52pm

my father has metastatic melanoma stage IV (mets in his lungs) and we are deciding wether we start on ipi (hoping it works) followed by anti PD-1 or go the clinical trial route.  Right now he has not done any treatments, and I am concerned once he starts Ipi, he will be limited on his options for clinical trials.  What are some of the best clinical trials out there right now in your opinion that could benefit my fahter? 

 

thank you so much! 

Liam 

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JustMeInCA's picture
Replies 10
Last reply 10/11/2014 - 7:21pm

My father, who will be 83 in a couple months, is Stage IV with several tumors in the area near his knee, which was the site of his primary tumor. He also has a few small mets in the lungs and possibly (probably) one on the hip bone. He's had two Ipi infusions, the last a week ago and so far without side effects, and will start Keytruda in two weeks.

While he has what he calls "some discomfort" in his knee off and on throughout the day, he is mainly suffering pain at night, which keeps him from falling asleep. (Once he's asleep, though, he sleeps well throughout the night.) For the past few weeks, we tried Aleve, which did nothing, and then a prescription of Norco (5/325), which also did nothing. Last week, his doctor upped the Norco to 7.5/325 and said that he should take it every four hours to prevent, rather than try to stop, the pain.

Dad is not one to take painkillers. He had a sextuple bypass about three years ago and refused any painkillers once he left the hospital. He was resistant to even taking Aleve when the melanoma tumors began to hurt, so I know his leg is really bothering him, given that he's been willing to even try all these pain pills. 

Now, however, since  the higher dose of Norco is not helping with the nighttime pain, he has been prescribed Oxycodone for daytime and Oxycontin before bed. We haven't filled the prescriptions yet, and I'm really wondering if this is the right route to take. Dad doesn't want a stronger painkiller, and we've both noticed that since  he's been on the 24-hour pain regimen, he just kind of zones out in his recliner, where before he was out in the yard and making his little trips to the dollar store. He says he feels dizzy off and on now, and he's definitely a bit cranky.

I'm concerned that the new pills will just make things worse. I've been the one pushing him to take painkillers because I hate to know he's hurting, but now I feel bad because they've really stolen his joys in life. I also worry about the Oxy's because of his age. I feel like maybe I should just let him handle things the way he wants to, even if that means not taking any pain meds. He's more than willing now to take a painkiller before bed, but the way it sounds, this Oxy stuff has to be taken around the clock or not at all. And the nurse also told me that pain taxes the immune system and leads to poorer outcomes.

Any advice or input would be much appreciated. 

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Replies by: Carole K

I have two small deep dark moles one arm and  foot. Although very small but it's very strange: no spread, periodically grow up with tough shell then drop, again and again for 3 years. After seeing some material, I'm so afraid that they are or would become nodular melanoma, which grow without spread.

I will stay in San Francisco this winter, so want to see a dermatologist in UCSF (referenced by posts in this forum). However, some posts say that NM is so easy to be missed, so could anyone be so kind to recommend to me an experienced doctor in UCSF? Thanks a lot!

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