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 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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adgesoph's picture
Replies 5
Last reply 4/13/2011 - 6:27pm

 

My dad finally got into the GSK-braf inhibitor brain met trial at Vanderbilt!  He starts the medicine today and will return in a month for scans.  His doctor (Dr. Sosman) said this was his best option (over gamma knife).  He has two small brain mets as well as 2 lung mets, one in his pelvis and a couple in the neck area.  We just really need him to be a responder so he can hopefully take ipi in the coming months if this drug starts to fail.  Thanks for all your help and I'll let you know how it goes.

 

Adrienne

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Rocklove's picture
Replies 14
Last reply 4/13/2011 - 4:09pm

Hi all, I started the Ipilimumab last Friday and within a few days the tumors that are noticable on my right leg have swelled up alot including the leg, the tumors are warm and tender to the touch. 

The tumors in my liver have not bothered me any more than normal.

Is this a side effect that I should not worry about?

I would appreciate any knowledge to cope with this as it has started to keep me awake the last few nights with the pain.

Thanks,

Rocky  (Stage IV Liver Mets)

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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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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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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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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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FormerCaregiver's picture
Replies 4
Last reply 4/12/2011 - 2:28am

If you have recently joined this forum, it would be very helpful if you
could create a brief profile so that we can quickly assess what stage you
(or the person that you are concerned about) is at.

There are some very knowledgeable people in this forum, who are more up to
date than some doctors are. However, in order for you to get the best
possible answers to your questions we really do need a basic profile in
order to help us to help you. It doesn't have to be very long at all, but
should include the following as per your profile page:

Melanoma Stats
Initial Diagnosis date
Stage at Diagnosis
Current Stage (this is important)
Depth of Primary (this is very important)

Treatment Stats
Location:
Doctor:
Treatment Center:
Clinical Trials (this is extremely important)

Thanks,
Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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Tim--MRF's picture
Replies 15
Last reply 4/11/2011 - 9:23pm

I will be seeing some of the people from BMS (makers of Yervoy/ipi) next week and wonder if you have any questions you would like me to address to them.  If so, just post a reply and I will collate them and see what I can find out.  I can then post all the answers here when I get back.

I have already talked to people who have questions about price, questions about dose levels, and questions about availability, etc.  I can't promise to get every possible answer but should be able to get some key clarifications.  I would need these posted by mid-afternoon Monday.

We are working on organizing a webinar on ipi and other developing drugs, hopefully for sometime in May.  We will probably co-host it with the Melanoma International Foundation--Catherine and I are in agreement about what we have in mind and we will likely work out the details in the next few days.

Tim--MRF

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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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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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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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Manubuzzi's picture
Replies 19
Last reply 4/11/2011 - 6:29pm

 

Greetings to all,
 
I wanted to know the general and overall opinion on the steps that my family is taking to fight against my mother's illness.  Her first symptom appeared en January of this year, it was limited mobility and paralysis of her arm and leg.  After some tests, she had an operation (2/24) and a tumor was extracted from her brain. Biopsy Diagnosis: Melanoma.  PET Scan results (3/29):  2 brain tumors, 1 tumor in the liver, and 1 adrenal gland.  Since the operation, my mother has been very weak and unable to walk.  She had lost her ability to speak, but recuperated it quickly.  Now, for the last few days, she is starting to again have difficulties with her speech and it's getting worse.  We aren't sure of the real cause of this new symptom, given that it has been 40 days since the operation and we hadn't seen any type of relapse or problems until recently.  Now, the doctor has tripled the Corticoid dosage to see if it helps improve her speech.  
 
My mother is afraid, and her five children, myself included, are terrified.  Dr. Silva, the best specialist in Argentina, with whom we had a consultation yesterday (4/4) said that our first step is Temodar and radiation.  Then, depending on the results, we could choose between 2 treatments for the immune system (the names of which I do not yet have.)  I am writing today to hear some feedback of personal experiences with Temodar and radiation, the side-effects, the effectiveness, the dosages, etc.  
 
I can't seem to find the words to gove her strength or comfort.  She had been a completely healthy person until 3 months ago.  We were not prepared in the slightest for a situation like this.  We are devastated and desperate.  Any comment, word of wisdom, advice, or help, would be much appreciated.
 
Thank you,
 
Manuel
Son of patient 

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