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.

Expand/ Collapse Topic
 
Replies By
View Topic
Janner's picture
Replies 17
Last reply 4/18/2011 - 5:53pm

In April 1992, I was diagnosed with a .58mm lesion.  (Stage IB under today's staging system).  Pre-internet days and no books on melanoma at my library.  It was incredibly difficult to find anything in print, and what was written was incredibly negative.  Mostly geared toward higher stages and low survival rates.  The internet and sites like this have become an incredible tool if you don't let them freak you out.  19 years later (and with 2 more primaries in 2000 and 2001), I'm still stage IB.

This place can be scary for the newly diagnosed - especially those who are early stage.  Most stage 0 or 1's move on and don't stay to post here as their anxiety wanes.  So I'm posting as one of those long time stage I people who is still stage I after MANY years.  Heck, it's hard to remember my life without melanoma.

Best wishes to all,

Janner

 

1992 - ..58mm, Clark Level II, 1 mitosis

2000 - in situ

2001 - .88mm, Clark Level III, 1 mitosis

Tested positive for melanoma genetic defect, CDKN2A

http://www.MelanomaResources.info

Login or register to post replies.

Hi there.

I am starting on the MDX-1106 trial next week. I just wondered if anyone on the boards is part of this trial? I'm hearing really good things about it and it sounds like the side effects are pretty small. I think doctors have a tendency to play down the side effects sometimes. So, I was wondering what other people have experienced with this drug.

Thanks!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

Login or register to post replies.

premedy's picture
Replies 2
Last reply 4/14/2011 - 10:23pm
Replies by: MichaelFL

Just had a cat scan done with the following results

 A new .4cm nodule in the left lower lobe is noted.  New focal patchy and ground glass opacities in the right lung are noted.

 

Spleen - Mild splenomegaly is increased measuring 14.2 cm in craniocaudal dimension, previously 12.7cm.

Abdominal lymph nodes are increased in size and number.  Subcentimeter mesenteric lymph nodes are also increased in size and number

 

Has anyone seen anything like this with the lungs.  I've never heard the term patchy ground glass opacities but it doesn't sound good.  Has anyone dealt with enlarged abdominal nodes?

 

thanks in advance.

"without the bitter the sweet ain't so sweet"

Login or register to post replies.

chatrbox424's picture
Replies 4
Last reply 4/14/2011 - 7:06pm

In August of 2010 I found out I had melanoma and was a month pregnant one day apart so needless to say its been a CRAZY 9 months as it is for anyone facing this diagnosis!!  My thoughts and prayers first off to everyone on here fighting this ugly disease!!!  I've loved reading all the positive attitudes and stories though, its very uplifting!!!! :)  

To get to my questions......my first dermatologist whom I've since left due to feelings of discomfort on my part.....called and told me my results over the phone while I was on vacation.  Upon returning from vacation I immediately had an appointment in which he told me that he got everything with the punch biopsy but felt it necessary to take a wide excision (1cm all the way around).  He also told me the melanoma was .5mm (I'm assuming he meant depth but not sure) and was a Stage1 with a great prognosis and extremely low chances of recurrence....all great news considering the diagnosis at hand.  He only wanted to see me every six months and wasn't very thorough with the full body check and privacy was an issue in his office (at least for me).  So I sought out a clinic that seemed to better suit my needs/wants that said he did the right thing with the wide excision that they would have handled it the same way so that was comforting.  However they will see me every three months along with yearly liver function tests, lung x-rays and eye exams!!  

Upon them receiving my records from the first dermatologist I asked for more specifics on my diagnosis such as mitosis, ulceration, etc. as I know these things have an effect on prognosis.....so she showed me the report in black and white and it plainly said the melanoma was in situ, unulcerated, and 0 mitosis....which I know are all wonderful news....but I'm just confused by whats written in black and white and what my first dermatologist told me....why the difference in diagnosis????  Just made me wonder...not sure if its anything to be concerned about or not so any input would be appreciated.

Thanks A

Login or register to post replies.

Anonymous's picture
Replies 9
Last reply 4/16/2011 - 8:15am

Hello.  

I would like feedback from people experienced with Melanoma staging based on the AJCC staging charts, and what each persons Doctors have told them. I am Specifically interested in stage IIIC but please feel free to add anything, no matter what your stage.

 

Acording to the "staging charts" a person who is a stage IIIC has what is considered advanced melanoma, and with a few variables, the five year  "prognosis" varies from 15 to 29 percent chance of survival.

Is this accurate?

If you have stage III melanoma, and the risk of recurrance is high in the first 5 years, are your chances of survival greater if you get past the 5 year mark?

Is there any way to know where the melanoma will recurr (as in what part of the body)?

Are you in remission if your cancer has been removed?

When are you cured from Melanoma?

What can a stage III person do to prevent Melanoma from returning?

If the "prognosis" for stage III melanoma is so severe, what is the average amount of time until recurrance?

 

Thank you to anyone who helps with these questions.

I realize some of them may seem dumb, but I am trying to understand where someone stands based on the statistics.

Login or register to post replies.

dian in spokane's picture
Replies 8
Last reply 4/16/2011 - 10:19am

I loved Charlie's suggestion for hosted chats, and although no one at the MRF has not answered that post yet, I think we can start it ourselves if some of the long time members just post chat times.

With that in mind, I will be in the chat room today (april14th)at  4:30 Pacific Daylight time, and again tomorrow morning at 8:30 am Pacific. Since someone mentioned that the evening chats are too late for them, I thought I'd try some morning ones.

Anyone can join in chat, but one IS required to register and log in. Don't let this stop you, it's a very simple procedure. Just go up to the top of the page on the right, and click on the Log In button. You need to choose a name to use (which can be a nickname or your choice, it need not be your real name) and an email address. Registering and logging in aids you in reading the bulletin board as well. If you are logged in, the board will show you which 'threads' have new replies which you have not read. You are always given the choice of posting anonymously, so even if you register and have an official 'name', you do not have to use it for your posts. But you do need it to get into the chat room

When I first found this site, one of the first things I did was go to the chatroom. I can't tell you how much comfort it gave me to talk to others who actually understood my fears, and could answer questions for me about Interferon. I spent many evenings there while on interferon, with Charlie and Barth and the ladies making me laugh so hard. I was so sad back then about the return of my melanoma that I was surprised I could laugh about such silly things, but it did me so much good to feel 'normal'

I hope we can do that for some of you.

Dian in spokane

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 4/23/2011 - 6:01pm
Replies by: boot2aboot, Anonymous

anyone ever get multiple white spots( tiny and raised). I have them on my legs more recently. don't know if it has anything to do with my mel which was on my face.could be aging process (i am 66). . or reaction to vitamins. going to see dermatologist next week

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 7
Last reply 4/14/2011 - 7:22pm
Replies by: Anonymous, Janner, MichaelFL

Hi everyone

Sorry to bother with these seemingly petty issues (is there somewhere else I should be posting?)

I have posted lately about a few things: my toe light tan freckle that was moderately atypical, my sister's UNchanged mole that was severely atypical and the fact that I have hundreds of moles, many weird looking, many normal looking. I've had everything from benign- to mm in-situ. Sister also had in-situ. We have atypical mole syndrome.

So I have two issues: I am scared out of my mind that something on me is melanoma whether it has changed or not. Whether it is innocent looking or not. Clearly there are no rules with this. I have 5 moles (biggest might be 5mm, others smaller) on my neck. They haven't changed but look slightly atypical. Well, somehow i googled something and read that "Head and Neck Melanomas have Poorer Prognosis" -- twice as bad, Would it be crazy to get 5 moles off my neck for peace of mind? Has anyone heard of this or had melanoma on their neck or scalp? OR do any of you have moles on your neck? Is this a normal spot?

This leads me to my next problem: how do you handle this anxiety? I have been great about it for years (been dealing with this for 20++ years) but as you can see I am in the midst of a panic about it. I dont see the derm for 3 weeks and I can barely keep track of what I want off!
(the little dark one that always bothers me, the bigger slightly atypical ones on my neck? the slightly changed on neck, changed one since pregnancy, but not in the last two years) It goes on and on! She won't remove them all I'm sure, but where do I draw the line? The whole "Change" thing has been thrown out the window with my sister's severely atypical...

Other times I think why am I leaving anything questionable when it would be melanoma. Why not get 10 off and be done? (until my next scare!)

 

Any advice on how to balance anxiety and being vigilant w/out going overboard?

OR is is smarter to just get the 10 scariest ones off in the next few months and have peace of mind

Thanks!!!!

 

Login or register to post replies.

adgesoph's picture
Replies 3
Last reply 4/14/2011 - 10:25am
Replies by: amberhulin, deffk1105, Cate

My dad went to get scanned after only being on the braf trial for brain mets at Vanderbilt and all of his tumors grew- he has some in his lungs, brain, neck and pelvis.  I'm just so surprised that he didn't respond at all.  He was feeling so much better a week after he started.  How can that be?  

So now they've admitted him to the hospital because his brain mets have grown substantially and caused him to have weakness on the left side of his body (this all happened within the last 2 days and thank God he had just arrived at Vandy because the doctors said he could've died at any minute with all the pressure from the tumors in his brain.  He is getting steroids now for the brain mets and they are deciding on gamma knife or wbr-starting tomorrow.  Obviously he's out of the trial.   Just sucks.  We were so excited when he finally got in it and it didn't even work.  

So after the brain is taken care of it's either ipi (if he has time to wait for it to work) or another trial.  Thankfully Vandy has several.  He failed interferon, IL-2 and now braf.  

I'm just really upset for him right now.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 4/13/2011 - 11:12pm
Replies by: lhaley, alicia, Fen

Hi,

 

This is the first time that I have posted. I am  stage 3 unresectable.

I am on NO treatment currently & have had not treatment just surgery.

My White blood count currently is 4.3 on the lower side of the range (3.8 -10.8). My lymphocytes count currently is at 486.Range for Absolute lymphocytes(850-3900)

 Four weeks ago,  my white blood count was at 6.2 and Absolute lymphocytes at 639. 

My Absolute lymphocytes (fighter cancer cells) have been steadily going down.

Can anyone tell me what is the significance of this drop. What does low absolute lymphocyctes mean to my cancer & overall heealth??

I know that WBC and Absolute lymphocytes is part of my immune system but is there anything that I can do to improve  the Absolute lymphocytes. Is this a dump question???

Thank you for your response & help.

Kitty

Login or register to post replies.

EricNJill's picture
Replies 14
Last reply 4/21/2011 - 10:17pm

Eric's Oncologist told him he doesn't have 30 days to wait for the washout period to get into another clinical trial because his cancer is spreading fast.  He said that Eric needs to start Yervoy immediately, but Eric's insurance does not cover the cost of the drug.  We were told we could appeal but Eric's Oncologist said they aren't having any luck with getting the insurance companies to cover Yervoy.  He has had other patients running into this problem.  Has anyone here had any luck with assitance?

JillNEric in OH

Login or register to post replies.

archer's picture
Replies 11
Last reply 4/15/2011 - 12:18pm

I want to thank all of you that said, "run, don't walk to a specialist".  We did just that yesterday and what a world of difference compared to our first visit with an oncologist.  We even had someone on here provide her email address because she goes to the same doctor and her statements about this doctor were correct.  We left feeling good about our decision.

Tomorrow morning, my wife is scheduled for her PET scan, meeting with a surgeon and then the specialist.  Talk about making things happen! We are grateful to all of you for this advice as well as all the other advice you have graciously shared.  It has helped us get get a direction with all this mess.  Tomorrow will be 14 days from the diagnosis.  I can say that I actually slept 7 hours last night.  That is the first time in the two week period.  I know you guys will understand what I mean by that but hopefully that is the sign of good things to come.  

Now, our prayers, thoughts etc are directed toward a clear negative scan tomorrow.  That would be a gift.

Again, I can't thank all of you enough for your help.  Last week was disaster, a blur and I was a notch above a zombie (at least when alone) but this week is a tad better thanks to a lot of people such as yourself praying and sharing.  

I will keep in touch.

Login or register to post replies.

o2bcheri's picture
Replies 9
Last reply 4/13/2011 - 7:58am

hi everyone..

 

i am here for my best friend.. who is at this moment clear of melanoma.. had one lesion removed.. was told he was good to go.. and then it turns out

that he found a lump in his groin 2 yrs later..  had the nodes removed.. they found a bit of mel in the one node.. and is now NED for the moment..

 

what is bothering me.. is my co-worker's wife recently had a melanoma taken off her arm.. once again.. they say she is good to go.. she has made no

changes to her lifestyle.. of which i have no idea... but.. i worry that it will show up having spread just like my best friend...

 

does anyone know... how often it returns... or is it just random??? seems pretty ramdom.. but.. very scary...

 

i worry about everyone now..

 

thanks so much..

 

Michele

Login or register to post replies.

Lisa13's picture
Replies 5
Last reply 4/12/2011 - 9:18pm

I'm Stage 3c and about to decide on treatment. I'm currently NED after WLE and lymph node dissection.  I'm considering 1 month of HD Interferon or a clinical trial of ipi versus placebo. I know the clinical trial is a gamble, but there seems to be more success with ipi (if Iget it) than Interferon.  I know alot of people have had success with Interferon staying away for awhile, so I'm really torn.   My oncologist doesn't seem to have any answers for me. Everytime I suggest something, he seems to not be thrilled with the limited success of certain drugs.  Keep in mind he's a melanoma scientist, so he's all about the science and doesn't see Interferon as a good option for me. Apparently in Canada, we don't do Interluken or Biochem anymore, so what choice do I have at this point?   He does like ipi and said I should do the trial, but with Interferon, I know I'm getting something.

I feel I would drop out of the trial if I didn't get an autoimmune response even though I know it's not fair for the trial. I had a deep primary, so I feel I need to do whatever I can to keep this from coming back as long as I can.  What is the cutoff to do Interferon after surgery?

Currently, I'm taking a holistic approach and trying to make my immune system as strong as I can.  It may not help, but building a stronger body can't hurt. 

Any advice, experience with trials, etc would be greatly appreciated. 

Thanks,

Lisa

Many impossible things have been accomplished for those who refuse to quit

Login or register to post replies.

LynnLuc's picture
Replies 1
Last reply 4/12/2011 - 7:52pm
Replies by: lhaley

I found this interesting,,,,,"This offer is not valid for patients whose prescriptions are covered by a federal or state government-related healthcare program which pays in whole or in part for prescription drugs such as Medicare, Medicaid, TRICARE or VA Programs or where the entire cost of the prescription is covered by commercial insurance. Patients may not submit a claim for reimbursement under any of these programs".

 

YERVOY Co-Pay Program

Helping Support Access for Eligible, Commercially Insured Patients

Bristol-Myers Squibb is committed to supporting access to YERVOY. The YERVOY Co-Pay Program can assist eligible patients who have commercial (private) insurance with co-pay or co-insurance support for YERVOY.

What does the YERVOY Co-Pay Program offer?

  • Your responsibility: You pay for the first $50 of your co-pay or co-insurance for each infusion of YERVOY
  • The program pays: The YERVOY Co-Pay Program pays the rest of your co-pay costs for YERVOY until you reach the program maximum of $5000 per year. This maximum begins after you pay the first $50 per infusion

To be eligible for the program, you must

  • Be 18 years of age or older
  • Have commercial (private) insurance
  • Have been prescribed YERVOY as per the Food and Drug Administration (FDA) approved indication
  • Be a US resident

Please note

  • You are not eligible if you participate in a federal or state related healthcare program which pays in whole or in part for prescription drugs, such as Medicare, Medicaid, TriCare, or Veterans Administration programs.
  • Commercially insured patients who reside or are treated in some states (eg, Massachusetts) are not eligible due to state law

Other restrictions may apply based on the terms and conditions of the YERVOY Co-Pay Program listed below.

How to enroll

Tell your oncologist or another healthcare team member that you are interested in enrolling in the YERVOY Co-Pay Program. Your oncologist’s office may be able to assist you with the enrollment process.

Can you help me if I don't qualify for the YERVOY Co-Pay Program?

Bristol-Myers Squibb is committed to helping support access to YERVOY.

Your oncologist can work with Destination Access™ counselors to identify other potential programs if you do not qualify for the YERVOY Co-Pay Program. Your oncologist can contact Destination Access™ by phone at 1-800-861-0048, Monday through Friday, from 8:00 am to 8:00 pm ET.

YERVOY Co-Pay Program Terms and Conditions

  • The patient must pay the first $50 of co-pay for each infusion. This Program will cover the remaining out-of-pocket co-pay for YERVOY, up to a maximum of $5000 during the 12 month enrollment period. Any costs exceeding the maximum of $5000 are the responsibility of the patient.
  • This Program will cover the co-pay costs of YERVOY only. It does not cover the cost of the infusion or any other healthcare provider charges or any treatment costs during the hospital stay.
  • The Program may apply to retroactive co-pays for outpatient infusions of YERVOY that occurred within 120 days prior to the date of enrollment, subject to the Program maximum of $5000.
  • This offer is not valid for patients whose prescriptions are covered by a federal or state government-related healthcare program which pays in whole or in part for prescription drugs such as Medicare, Medicaid, TRICARE or VA Programs or where the entire cost of the prescription is covered by commercial insurance. Patients may not submit a claim for reimbursement under any of these programs.
  • If you have commercial insurance, your acceptance of this offer confirms that the offer is consistent with your insurance and that you will report the value of the co-pay assistance you receive as may be required by your insurance provider. Patients must not seek reimbursement from any healthcare reimbursement accounts or flexible spending accounts. Patients who move from commercial to federally-funded insurance will no longer be eligible for the Program.
  • Patients must enroll by December 31, 2011. Once a patient is enrolled in the program, the program will cover all doses (maximum of 4) in accordance with the FDA-approved YERVOY package insert.
  • Explanation of Benefits (EOB) must be submitted within 180 days post-infusion to receive co-pay assistance.
  • Proof required for payment must be a valid Explanation of Benefits (EOB) with YERVOY code-specific information. EOB must be submitted regardless of assigned code.
  • This offer is valid only in the United States and Puerto Rico.
  • This offer is not valid for residents of Massachusetts or for infusions received in Massachusetts.
  • This offer is not an insurance benefit.
  • This offer is void where prohibited by law, taxed, or restricted.
  • This offer may not be combined with any other offer, rebate, coupon, or free trial.
  • This offer is non-transferrable.
  • This is a limited time offer. Bristol-Myers Squibb reserves the right to rescind, revoke, amend, or terminate this offer or the program in its entirety at any time.
Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

Login or register to post replies.

Pages