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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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

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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

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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!!!!

 

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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.

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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

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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

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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.

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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

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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

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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"

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Hope Returning's picture
Replies 3
Last reply 4/12/2011 - 3:20pm
Replies by: MichaelFL, ShariC, jag

What can help increase Platelets? Can GCSF increase low platelets? If not, what can? They are extremely low now

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shellebrownies's picture
Replies 11
Last reply 4/14/2011 - 8:36am

Hello all,

My husband's issues with melanoma started in about May 09. He is fair skinned with many irregular freckles. We noticed a new freckle on his right shoulder and that it appeared one corner of it was starting to get slightly darker than the rest. As a precaution, he went right away to his PCP. His PCP said not to fool around and sent him right to a surgeon. Surgeon thought it was nothing but did the biopsy anyway: the darkening corner was in situ melanoma. Early June 09, he had the lesion and surrounding area removed. Biopsy of the removed material showed no other signs of abnormality or melanoma. After the surgery and test results, the surgeon said he should be all set, but that he should see a dermatologist every 6 months to keep an eye out for anything new. It was not recommended he see an oncologist because of how early they caught the melanoma and because there was none found in the biopsy. Hubby has gone to see the dermatologist as recommended and followed up with him on a regular basis. To date, no new lesions had been found, nor any issues with original site. My husband has been basically healthy ever since.

 

About a month and a half ago, my husband thought he had pulled a muscle in his right shoulder lifting some heavy equipment. A week later, he had a sore, tender slightly swollen spot under his arm. Another trip to the PCP, who thought it possibly a hematoma. He was sent to an orthopedist to see if he might need PT. The orthopedic Dr. was unsure if the swollen area was a hematoma or not, so he sent hubby for an ultrasound. From that, we learned that whatever was going on was happening in his lymph nodes. In the meantime, the area continued to swell and cause discomfort. It was NOT hard; it was soft and squishy. Pain and swelling continued, so hubby went back to PCP again on Mar 28th. He sent him to a surgeon for a possible biopsy. The surgeon was the one who thought it was likely cancer, even though the lump was soft and tender instead of hard and painless. Just in case it was some kind of infection, we had his PCP test for infections (including cat scratch) and give him some antibiotics. On the 30th, he had a CT scan for his whole torso. It came back basically clean (a little fatty liver, that's it) except for the masses seen under the right armpit. Meanwhile, cat scratch test came back negative. He had a biopsy done on April 1st. They were to remove the enlarged lymph node and take a sample right there to determine if it was cancer and would remove more if they found it was. The lymph node that had swollen was necrotic (likely why it was painful) and roughly the size of a racquetball and found to be consistent with metastatic melanoma. They removed several other matted lymph nodes as well. We have not gotten the results of the full panel back yet, but the preliminary report said that 11/18 of the nodes tested positive for melanoma. The next day, he had an MRI of his brain and liver with clean results.

His doctors were shocked. His dermatologist made a personal phone call to him when he heard we were requesting records for an oncologist. He showed no signs of any problems when the doc had seen him just a couple months ago...

This past Thursday, he had a PET scan. We have an appointment with a local oncologist tomorrow, where I expect we'll get a staging and the results of this test. My husband and I are feeling pretty overwhelmed and shell-shocked over the news and have hardly had time to wrap our heads around it. Our PCP's office recommended we get a 2nd opinion at Dana Farber (as we are relatively local to them), so we have an appointment with Dr. Ibrahim at DF's Melanoma Center on Friday. I had considered getting an opinion at Mass General's Melanoma center as well because their office is more easily located (for us) in Boston as well as having a satellite office not far from where I work.

Can anyone share, well, anything about anything with us? What kind of questions should we be asking these doctors? What would be good to know? What should we expect for his 1st oncology visits? How soon should we expect his treatment regimen to start? Will he need to take a leave of absence? Has anyone had any experience with Dana Farber or Mass General's Melanoma centers?

I sincerely appreciate any and all feedback anyone can give us newbies.

Thanks!

Michelle

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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mimi0201's picture
Replies 2
Last reply 4/11/2011 - 9:11pm

Does anyone know if it's actually available?  Today is BMS supposed release date.

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ipi in DC's picture
Replies 8
Last reply 4/12/2011 - 10:47pm

Hey guys,

Havent posted in a while but have kept up on things here. Today I met with the doctor at MD to go over scans from yesterday and today, very mixed results. Lungs stable (largest nodule 7mm out of a half dozen) brain and all other organs clear. One node (exterior iliac) has grown from 1.2 to 2.1 since last scans 8 weeks ago. Dr has looked at all the scans since last august and feels it is melanoma growth, so off the trial. He believes it is some resistant cells that the ipi could not take care of. As far as lungs they can not be sure if the cells are dead or alive that are showing in the scans but assume they may still be alive and have some resistant.

We talked about a new drug they are trying in a stage 1 phase, but he is suggesting bio chemo IL-2,interferon,Vinblastin,Cistplastin, no dicarbazine due to I am on Temador now but will stop taking it for now anyways. The new drug has no history so he wants to use bio since my issues are lung and lymph.

I know how nasty bio is but I want to hit it hard since its is basically localized for now.  

Please fell free to put in your input good or bad, any help for the thought process helps, for sure anyone who has done this bio chemo and how you responded, how long you were taking it, where, and how are you know as far as side effects and any tips.

By the way I was going to take cycle 11 today, so I have been on the trial about 8 months (can't complain no major growth and just a major rash and itching to deal with for side effects) I truly feel blessed to basically just be looking at a node (obviosly it way bigger than that)

For those thinking of Ipi, i would do it all over again.

 

Thanks,

David

Fully rely on GOD & try not to ruin today by worrying about tomorrow

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kim2712's picture
Replies 7
Last reply 4/13/2011 - 9:56am

My was dx in 2004 with stage 3c melanoma. It was on his ear, ulcerated, hi mitosis rate, and one positive node. Had complete neck dissection, then 1 year of interferon. All has been fine until March 7th. His right lung collapsed 100%. Inserted a flexible chest tube to drain fluid and try to get lung inflated again. After a week of that and no success they decided to have a thoracic surgeon go in and take a look and talc the lung. When he got in there he found hundreds of tumors in the lung, pleural, cavity and chest wall. This was on March 14th. While in there he inserted the large drain tube and took out the flex one..After a week they let him go home with oxygen. He was home for about 2 weeks, started coughing up blood, trouble breathing so we rushed him into ER. After X-rays and a CT we found out that within 10 days the cancer had grown in the lung, and spread into the liver, diaphragm, ribs, and the space between the ribs and liver. 5 days after that another scan showed increases in liver tumor and 2 other ones. They started 3 days of interferon and today was supposed to start the chemo part of that protocol. Three diff drugs. He has had significant increase in fluid drainage from lung and now abdomen is swelling quite a bit as well as legs and feet. They did another CT that we haven't heard about yet but they are hurrying to get chemo started tonight, that tells me something is wrong. I am so scared, his cancer is spreading so damn fast.

We are at the Cleveland Clinic, good hospital.

Anyone have similar stories that ended successfully?

Mom to Erik

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