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 2
Last reply 10/15/2014 - 3:14pm
Replies by: JerryfromFauq

IF ANYONE IS AROUDN AND YOU WOULD LIKE TO COME TO CHAT A FEW OF US WILL BE THERE COME VISTI US.  WOULD LOVE TO MEET YOU.  LOOK FORWRD TO SEEING YOU.  

LOVE AND LIGHT

CAROLE K

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Patina's picture
Replies 2
Last reply 10/15/2014 - 7:29am
Replies by: bilben_r, Ginger8888

Hi,

Are there any Yervoy responders who have gotten shingles?  If so, what happened after shingles? i.e. Did you stop responding to Yervoy, respond less or was this just a side effect?

My Mom had a shingles breakout (she has had them before) and there are not a lot of Yervoy patients who have had them.  Wondering if her immune system is under duress and Yervoy may not be working as well as it has, or what...  

Thanks!

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BrianP's picture
Replies 4
Last reply 10/15/2014 - 4:21am
cbs805's picture
Replies 4
Last reply 10/15/2014 - 4:04am

Does anyone know what can be done about this? My husband has been required each time to sign an ABN (Advance Beneficiary Notice that the scans likely won't be covered by Medicare) for his PET/CT scans. Medicare has always paid until this last one. I know there is a limit to how many they will cover so apparently that limit has been met and we now have to pay. Is there a way of appealing this denial and getting it paid by Medicare? Why does Medicare limit the number of PET/CTs a patient can have? What scans do they recommend instead of the 6 month PET CT? Thank you

CBS805

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Shollands's picture
Replies 8
Last reply 10/15/2014 - 2:46am

Hi Everyone

I have my first mole removal coming up and am very nervous!

 

i have been a regular sun bed user with fair skin that burns easily.

Has a new mole appear on my chest but wasn't worried as heard that it is common to develop new moles up till your 30's.

However, in the space of the last few weeks it has evolved, changed colour, got darker and is getting more raised by the day, nothing like any of my other moles.

am very scared at what the outcome may be. 

Any advice you can give would be really appreciated.

Thank you all

 

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KerriM's picture
Replies 1
Last reply 10/14/2014 - 7:13pm
Replies by: Janner

After posting my story and reading others stories can anyone tell me why some patients have a lymph node biopsy at state IIa/b and some don't. I just had a WLE twice to remove it all....now I am nervous that maybe I should have had something else checked. When I was first diagnosed I went to a general surgeon for removal of the mole as I had two negative biopsies so when it came back I was surprised. I now see a surgeon who specialized in Melanoma (Just had three WLE last week). Now I am nervous after reading that maybe I should have had more testing?

 

Also - Does anyone else feel like they don't want to mention any small changes to their derm at their 6 month check ups because they have turned into a pin cushion? I can't believe I even feel this way and don't want to tell him about changes...am I nuts?

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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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