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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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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I am looking at my Immune modulator therapy to begin in the next few weeks.  Although the long term data is not as well established with Leukine therapy as it is with Interferon therapy, I am tempted to pursue the Leukine therapy due to the less serious side effects as compared to Interferon.  Has anyone had experience with the Leukine therapy, which consists of 14 days on 14 days off each month for one year?  The dose is a shot per day, self administered.

 

Thanks Wayne

"Hope is the only antidote for fear" Lance Armstrong

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Nebr78's picture
Replies 1
Last reply 4/10/2011 - 5:28pm
Replies by: Janner

I can't get answers from Drs. (5-6)  I had radiation for Melanoma lumps(nearly golf ball size on face and chest)  about 2 months ago.  There was about 18 treatments and Dr. said they were strong.     Now  (April 11) I am so darn weak it is pitifull.  It is really bad early in the morning.. I get so I just can't move anymore.  Have been in house for a weak.  I am short of breath but that could be my heart disease and terrible dry mouth, and that can be from all the medication I take..  MY QUESTION IS:   HAS ANYONE ELSE HAD THIS WEAKNESS BIT AFTER RADIATION?   TWO MONTHS AFTER??  Area affected is mainly from waist down.

 Don't say get another  opinion as I have had about 6.  With my heart disease of 40+ yrs, and being 79 yrs. old I am not going to last too much longer.

I just want to be a little more comfortable with the time I have left.   This weakness bit sort of come on all of a sudden.    By bedtime it is alittle better but I would not want to try to walk 1/2 block.   I am supposed to have two masses in lung 4cm and 2cm and growing.    One more complaint and I will quit.

Occasionly I will cough up yukky phelm like I had a cold and infection in lung but I don't.  Hope there is a expert Dr. online.   (would like to play a few more rounds of golf but can't pick up bag now)

Thanks

 

 

 

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Anonymous's picture
Anonymous
Replies 9
Last reply 4/10/2011 - 9:55pm
Replies by: lhaley, dian in spokane, MichaelFL, Janner, Anonymous, Lisa13

Does anyone know what the nodes in your neck would feel like if they were infected with melanoma?  I had my groin nodes removed a year ago and 3 weeks ago I noticed the lymph nodes on the left side of my adams apple are swollen.  It has gotten slightly more swollen and i have now noticed a lump right next to the lymph nodes.  Does anyone know what it would feel like if the nodes did have melanoma present?  I was just wondering if it would just feel like swollen nodes you might get from a sore throat or if there were any particular characteristics of melanoma in the neck nodes.  One doctor told me that if there were malignat melanoma present there would be a very hard lump and it would not hurt.  I'm probably just being paranoid.  thanks in advance.

 

all the love,

 

Peter

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

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Charlie S's picture
Replies 5
Last reply 4/11/2011 - 9:00pm

The Chat Room, used to be a vibrant aspect of MPIP that afforded great comfort on an immediate basis for many melanoma patients,their caregivers, family and friends over the years (including myself).  For whatever reason, this no longer seems to be the case. Usually when I go to chat the dangling posts are from people who had signed in and had nobody to chat with, so they waited and left.

In an effort to offer a constructive approach to return this now gone vibrancy, as opposed to just complaining, might I suggest that there be a trial run of Hosted Chat Sessions.............not moderated mind you, but hosted......and that it be done by volunteer hosts who are either patients or caregivers.

For instance, patient wise, there is a lot of medical appointment/procedure/report information streaming into their lives and often that occurs on a Tuesday, Wednesday or Thursday that not only wraps up their week of medical interaction, but leads to laying the groundwork for the upcoming approaches and strategies in the coming week.

Long and short, for starters, how about getting some volunteers among the board to be online in the chat room, say, Tuesday, Wednesday and Thursday from say 7-9 p.m. across the time zones of the US, Canada, Australia and the UK?  Other than some e-mails, for scheduling purposes, this would cost the MRF zero monies and I feel certain their is an ample body of willing volunteers and really, it would not take that many people to pull it off.

An open call on the BB from the MRF should proffer a quick group of volunteers I suspect.

These hosted chat times would need to be prominently displayed so people would know they exist.

Since this is no cost , with the only risk of there being MORE people in Chat, seems worth a shot to me.  It certainly would not reduce the chat room traffic.

Cheers,

Charlie S

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Anonymous's picture
Replies 3
Last reply 4/9/2011 - 11:34am
Replies by: ErinMcH, Janner, lhaley

HI- me again (the one who is asking about UNchanging moles and innocent new ones etc.

I am obviously on high alert now... fun!
I just noticed a BRAND new mole on my leg. It looks normal (brown, about 1mm, round) in and of itself, but it is definitely brand spanking new.

I have hundreds of moles and family and personal history of mm in-situ. I will plan to get it removed, but is this the norm?
For moley people, do you get new moles and only "panic" or remove if they continue growing or look otherwise atypical?

So far, 3 newish ones I have removed have all been moderately atypical (two on butt and one on toe)

I am 40 btw....

Thanks-- I am in a panic over this little thing (among others) and need some advice as i don't see derm for a month.

Don't want to rush in for a normal looking spot because I have tons more to show/ possibly remove and I don't want to get crazy.. thanks

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NicOz's picture
Replies 13
Last reply 4/11/2011 - 9:38am

Finally after 3 years of trying to find one it looks like I'll be starting on the 18th. Only have my iPhone access at moment so will be short & sweet (thankfully, I hear you say!) have been running around for a while, not well and organising bits and pieces so haven't been around much. Just wanted to give a heads up to those who may be interested :)

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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Anonymous's picture
Replies 5
Last reply 4/11/2011 - 9:16pm

Hi everyone,

I posted recently about a very light innocent freckle on my toe that came back moderately atypical.

It was a few years "new".. but so innocent. In the meantime, my sister just had a spot removed from her face. It was UNchanged for at least 10+ years, on her face for 20. Her new derm looked at it with a dermatoscope and it had an unusual pattern so she recommended removal. It was severely atypical -- more or less mm in-situ.

Both of us have hundreds of moles, had had mm in in-situ, have body photography done, and I've probably had 50+ moles removed.

I am now on edge because hers didn't change at all- so how can we know what needs to come off and what is brewing on our skin? I have so many now i want off w/ our history, my moley skin, with my toe "surprise" one and now her face.

My derm i love, but does not use a dermatoscope that I know of (or not very often)

I know how lucky we are to catch it early, but just wondering how to proceed if now change or being new might not even be a sign!!

Thanks and best wishes to all : )

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beckyt's picture
Replies 3
Last reply 4/8/2011 - 10:17am

Hello! I have been invited back again to our local 5th grade Health Fair to present on skin cancer/melanoma.  I am looking for a video that would be of interest to a 5th grade level.  Only need a 10 minute one or so.

Anyone out there have a suggestion?

Thanks!

Beckyt, wife of melanoma angel Brad (5-12-07)

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