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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Janet Lee's picture
Replies 6
Last reply 2/19/2013 - 10:21am

Hello all.

Aftger countless hour and countless tears, insurance still refuses to pay for Zelboraf for my husband, soley because he is BRAF V600R instead of BRAF V600E. I now have to let this go, at least for a little while, to concentrate on fighting his disease and not the insurance company. I would however love to know how many of you out there are NOT BRAF V600E and still got the Zelboraf? Are other insurance companies paying?

Back to Dana Farber tomorrow (Friday 2/15) to start Yervoy/IPI. Side effeccts are scary. Prayers that Don responds to Ipi are more than welcome!

What else should we be thinking about in terms of treatments? We have put our trust in Dr. Ibrahim at Dana Farber, but I need to know about alternatives to ask her about.

Thank you all for your knowledge, help, support, and love.

Janet

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Kim K's picture
Replies 4
Last reply 2/14/2013 - 9:20pm
Replies by: Bobman, cld, Janner

I am logged in, was working yesterday, and today all I get is a blank pop up with user as couple and I can't click on any buttons to fix it.....  I logged out then relogged in, made sure my pop up blocker was disabled.  HOW VERY FRUSTRATING!!!

Waving at Carole K & Libby......  Wish I could join you.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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bikerwife's picture
Replies 2
Last reply 2/17/2013 - 9:54pm
Replies by: Anonymous, jag

Does anyone know anything about either of these?

Temador and z?

abarxene breast cancer drug that seems to help with mel in body and brain?

What God leads u to he will. Lead you through

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dolphin5's picture
Replies 1
Last reply 2/14/2013 - 6:56pm
Replies by: kylez

As I said on my prior post the decision was made to go with interferion, interlukin and three others with Dr Gailani at Kaiser riverside.  Two additional test were ordered prior to being admitted next week for her first stay/treatment.   Pulminary and stress test for the heart.  I know we asked why these two test but neither my wife or I can remember and I did take notes.  And finally as a care giver what can I expect or should I be prepared for when we return home?  I know someone has an answer.  Once again we want to thank for all of you help. 

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HI Ef veryone,

I read below about all the difficulties getting into chat.  I am sorry I can't help. I am computer challenged.  Let me see if I can get in touch with the gentleman who did the website. 

I can't tell you how much I have learned in the past two nights from all of you who conisder yourselves newbies.  So much has changed witih Melanoma and boy do I need to educate myself on all the new treatments. 

Last nighti it was a pleassure to meet Kyle, John F, Margo, Becky Doro, alcijado  and so many more.  Please come and join us.  JUst so you know you can just go t into chat at any time.  Post you will be there. 

Chat and the board were my saving grace going through LUng and Brain Met.  I met incredible peopel filled with love and understanding , not to mention Knowledge.  Thre were times I would leave chat crying, not because I was blue or hurt . I was crying for all of the blessings this BEAST brought me. 

Each and everyone of us have different stories and oh how we can learn from each other,

PLEASE WHEN YOU COME INTO CHAT , everyone will probably say hello . IF I am there I will ask everyone to stop for a few minutes to give you a chance to ask questions.  Often times the subject is NOT Melanoma, and at times it is almost social media where people go to laugh.  Please do not be offended. Many of us have met and have known each othere  for many many years,  It is a wonderful ommunity of support

Yes, there will be some old timers there as well.  At one time I organized get togethers in Asheville Orlando, Michigan and others organized them in Dallas and a few other places.  My goal is to try to do this again.  Charlie S wants a get together out where I live on Long Island.  That would be nice but hotels are too expensive.  We shall see. I am suggesting California and Janner also suggested Las Vegas, which would be the least expensive place for everyone to get to. 

Please come join us and know WE ARE ALL IN THIS TOGETHER.  Hang Tough and as Young Trooper  Drew would always say.. IF GOD BRINGS YOU TO IT, HE WILL SEE YOU TO IT. 

Hope to see you tonight

LOVE AND LIGHT

Carole K

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Snickers60's picture
Replies 1
Last reply 2/14/2013 - 3:06pm
Replies by: Janner

Wayne and I know NO ONE in our area with Melanoma !   I was in Beauty Shop last week and meet "2 WOMEN" whose husbands are stage 4.  I almost fell out.   

One was BRAF positive and has a year NED under his belt.   The other was sent home 3 weeks ago after YERVOY to get his affairs in order.    She said he feels great and is not in pain or SICKLY.   

I told her to get those scans, records, etc. together and have her DOC get him to MDA IMMEDIATELY.     The Doc had told him there was NOTHING else for him.   I SAID:   there's always something else.   

Was I wrong ?    I mean there are still trials on ANTI- PDI and always something to TRY right ?     He has nine spots.....it started with a melanoma on his head.     He is 75 years old.  

I FELT SOOOO SORRY for her.   There sat me and the other lady with husbands NED for a year and Wayne at 7 months now.    This stuff is SOOO IFFY ! SO STRANGE, but I did not want to leave her with NO HOPE !    Told her these Docs around here will let him die and even if there's nothing else to do at all, she will have the peace that they did EVERYTHING humanely possible to get help.  

What a sad and at the same time - ENCOURAGING encounter.     Sad with one, encouraging with the other.   SOOO sad for the one woman who is preparing for her hubby to die.  

HATE MELANOMA - JUST HATE IT !!!!!!!!!

BTWAY - Wayne is on his way to MDA NOW !    I was unable to go because of knee surgery, but praying hubby gets good report.   This is kinda just a check back - no big test !!!    

Nancy (Devoted wife of 3 X Warrior Wayne)     

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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François's picture
Replies 4
Last reply 2/15/2013 - 10:11pm

I have been now 7 weeks o Zelboraf, and last tuesday I had a cat scan. My oncologist sent me an email last night telling me that he checked the pictures of scan and noticed that the 2 nodules in my lungs are SMALLER! (defitive report will take few days more to come out). Furthermore It's been  more than 4 months since my last surgery and surgery zone shows no envidence of any tumors in my groin. (I had 2 relaps within less than 6 months undernith the scar). I am on 8 pills a day can deal pretty good with side effects. I thank God every day for having this desease today and not few years ago. We all start seeing the light at the end of the tunnel!!!! 

François

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Anonymous's picture
Replies 3
Last reply 2/19/2013 - 10:30am
Replies by: DonJ, DeniseK, Phil S

Unfortunately 2 1/2 NED for my husband has come to an end, and we are facing this battle again.  A swollen lymph node and routine chest xray revealed more mel with 3 tumors measuring up to 2.9cm ea in one of his lungs.  Next week he will having scans done to get the whole picture, and I know I should probably wait until all that information comes in, but based on what we know so far I am trying to understand what we should expect.

They have tested him for BRAF.  Do they typically do surgery to remove tumors on the lungs regardless of BRAF status or will that depend if there is any other involvment and/or what treatment is available based on his BRAF status?

What kind of recovery time is expected with that surgery?

What are the best treatment options out there right now?

Is there anything else I should know while looking into options?  He did one month of interferon so does that disqualify us from trials?

I know that is a lot of questions.  If I had gone with him to this appointment this week, there wouldn't be so many.  ;)   Thanks in advance to anyone who can offer input.

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Colleen66's picture
Replies 13
Last reply 2/23/2013 - 2:34am
Replies by: JerryfromFauq, Gene_S, Anonymous, Colleen66, POW, Fen

I'm down in Florida for a much needed break.  Yesterday, I was walking my two miles on the beach.  I had on a bottle of sunscreen, red shorts and my Melanoma Warrior tank top.  I passed many many people on the beach, almost all with severe tans.  They would glance at my shirt and than away.  Not one person I saw would look me in the eye!   Just the day before that during my walk there were "good mornings", "beautiful day" etc. and tons of smiles and eye contact.

I was really disturbed by this and I don't understand why was treated the two different ways.  Has anyone had this type of experience before?  I had actually hoped someone would approach me and maybe ask questions or something.  Gosh, what was I thinking.

Colleen 

Live!

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bikerwife's picture
Replies 6
Last reply 2/14/2013 - 11:53am

the good time with z is over for us. no new tumors but ones he hss is growing.  ldh up to 537. no trial till finish with gamma knife. anti pd trails starts in march. so n the mean time its temador or abraxane.

FInd out Monday.

just shocking since HE seems to be doing so good 

What God leads u to he will. Lead you through

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Carole K's picture
Replies 6
Last reply 2/14/2013 - 3:10pm
Replies by: Janner, lou2, Phil S, kylez, NYKaren

HI Everyone,

Just wanted to remind you to come to chat toniht any time after 7 PM> EST.  We werer there last night until a little after midnight.  Come join us, ask questions, have a few laughs.  So many of us found incredible suppoet  in chat during our most diffcult times with the BEAST.  I promise we may even have a few laughs. It might help if you are feeling down.  Know we are here for you.  Hang tough..

Love and Light

Carole..  IT'S A BEAUTIFUL DAY... I OPENED MY EYES TODAY.  ..... Dr. Robert Frost

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qtkitycat's picture
Replies 14
Last reply 2/17/2013 - 3:41am

Hi,

I want to thank everyone for creating a kind enviroment here.  I've posted before, but can't find my previous threads.

My fiance has been diagnosed with Stage IV Melanoma, mets in liver, kidney, spleen, adrenal glands and lungs ( they removed the tumorous testicle).        He has finally been approved onto Medi-cal with 100% coverage, so we would like to get a 2nd, 3rd, etc opinion and are wondering who we should go see.  We live in Bishop, Ca and will have to drive at least 3  hours to get to the closest dr, but we are willing to go further.

We just need a doctor that has a better outlook, rather than the one we are currently seeing...he says David will eventually become resistant to all treatments.  And I say BS to that!!  They've given him 10 months with now treatment and 14 months with treatment.  :(

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dian in spokane's picture
Replies 7
Last reply 2/15/2013 - 1:46am
Replies by: Napa K, Anonymous, dian in spokane

can anyone tell me where they are doing anti pd1 trials? I'm willing to travel some, but I'd prefer something on the western side of the US.

 

thanks,

 

dian in spokane

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dian in spokane's picture
Replies 5
Last reply 2/14/2013 - 5:23pm
Replies by: mbaelaporte, dian in spokane, Anonymous

can anyone tell me where they are doing anti pd1 trials? I'm willing to travel some, but I'd prefer something on the western side of the US.

 

thanks,

 

dian in spokane

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mama1960's picture
Replies 3
Last reply 2/13/2013 - 11:15am
Replies by: _Paul_, Linny, aldakota22

CAT scan clear! Do it again in 3 months! Thanks for all the kind words and positive thoughts.

It is what it is.

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