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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lunchlady's picture
Replies 13
Last reply 1/6/2013 - 10:33pm

Can anyone tell me what their experience is regarding the cost of a consultation appointment at MD Anderson?  My husbands insurance will not normally cover any services outside of Kansas.  I worked with his insurance and they granted a "Benefit Exception" for one appointment so he can consult a melanoma specialist at MD Anderson for a second opinion.  I was told by the agent that was attempting to set up the appointment that one consultation appointment cost $40,000!  With his insurance we would have to pay $4,000.  Any info anyone can give me is appreciated.

One day at a time.

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Marilynn Eiken's picture
Replies 9
Last reply 1/6/2013 - 5:51pm

My husband just had his second craniotomy with tumor resection because of a melanoma brain tumor that grew back in the exact same spot as the last one.  We were confident that it was necrosis and not tumor regrowth because all the perfusion studies were cold.  Black even, showing no blood flow to the area.  It was a huge disappointment to find out it was the melanoma again.  He's had an odd course.  He started with a skin lesion 3 years ago and then boom..brain tumor two years later.  No other issues.  We did WBR and gamma knife to spots that were missed.  Things have been going well but in November they found a very small liver lesion.  We were able to ablate the area and thought we were doing well.  December MRI showed more changes to the resected area and our neurosurgeon said lets get it our of there.  This surgery showed melanoma, about the same size as the first, it was visibly black and invading into a small portion of the dura.  Everything was resected but there is a black "film" that was visible following a vessel into the leptomenigeal area of the right frontal lobe.  Our neurosurgeon is wonderful and is heavy in the research department, especially immunotherapy, at Mayo in Rochester.  He is suggesting to our med onc to start Yervoy.  Tye is very frightened.  My favor is wondering if any of you survivors out there would email him.  He is not the type to reach out, that's my part in this marriage.  But I think he would benefit greatly from connecting with someone who is or has experienced this monster.  His email is tyeeiken@hotmail.com.  Thank you.  Keeping him strong and full of hope is essential.

 

Marilynn

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bikerwife's picture
Replies 6
Last reply 1/6/2013 - 2:32pm

I haven't posted lately but Lynn is in his 7th month on Zelobraf.  He had scans in November it showed some shrinkage and some growth his Dr. said he considers him to be stable. Blood work is good. Some side effects lost lots of hair has some joint pain. Overall he's doing pretty good.  Our main problem is the appetite and weight loss. He lost so much weight after WBR and has never been able to gain it back.  If anyone has any suggestion I sure would be thankful. We are at the point he feels bad about the way he looks. I check on y'all daily and pray for each of you.

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LynnLuc's picture
Replies 4
Last reply 1/6/2013 - 7:10am
Replies by: triciad, POW, NYKaren, DeniseK

 

General Update (From Brandon)

Written 12 minutes ago by Brandon Haley

Mom has asked me to make a post and keep everyone up to date.  She has asked for people to not send emails for a little while.  Currently, she is having some vision problems and is not able to read them and she doesn't want anyone to worry about why she has not responded.  Yesterday was her last day of radiation, and she is quite happy about that!   She also had her first IPI transfusion this week.  Personally, I would like to thank everyone for the continued support that they have given.  It really does make a difference. We will keep everyone posted.

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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Mike N's picture
Replies 4
Last reply 1/5/2013 - 4:09pm
Replies by: JerryfromFauq, Anonymous, Reneezd, gabsound

Just checking in with this supportive community on my 12th year NED anniversary.

Want to give some hope to folks that may have recently been diagnosed. My mm was 0.85mm punch biopsy and 0.95 when removed WLE.

My prayers go out to everyone here that is affected by this beast. And a sincere thank you for all the help and support extended to me by this community.

Best,

Mike N

Minneapolis

It's about today

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Tina D's picture
Replies 10
Last reply 1/5/2013 - 3:21pm

We saw Dr Linette at Barnes-Jewish Hospital/Siteman Cancer center today. Cant exxagerate how impressed we are. I will spare long details, which are prob interesting only to us :-) . Bottom line is: I am starting ipi next week. We are very comfortable with this & I am having Dr Linette oversee the treatments, so we will travel to St Louis for treatment days.It is only a 3 1/2 hr trip! Thank you to those who let me know abt him. We really couldn't be happier with the choice of Drs. And... we left the appt feeling encouraged- something neither of us really expected to feel. SO... we have a plan!

I appreciate the people on this board SO much. What a wealth of encouragement,advice,experience,support and help you all are. 

Tina

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akkcak's picture
Replies 1
Last reply 1/5/2013 - 11:37am
Replies by: Janner

Went for skin check and dr wanted to remove a mole on my chest. It came back mildly dysplastic. Well a couple of weeks go by and i noticed there is a brown dot right in the center. Is this normal? Of course i was at the onc yesterday and forgot to ask.

Thanks!
Amy

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bball's picture
Replies 2
Last reply 1/4/2013 - 11:17pm
Replies by: Anonymous, Linny

any one have experiance with Laetrile vit B-17

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markd's picture
Replies 4
Last reply 1/4/2013 - 7:02pm
Replies by: Fen, Anonymous, scots

hi. i was diagnosed in october 2011 with stage 2 melanoma. had the wide incision(margins clear) and SNB which turned out negative. x- rays and blood work every 3 months for first year, now every 6 months. my question is , when should i get another scan, or do i need one? thank you, mark d

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Guide to Understanding Genetic Conditions   Good report with many items to click on.

http://ghr.nlm.nih.gov/gene=KIT

I'm me, not a statistic. Praying to not be one for years yet.

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Snickers60's picture
Replies 2
Last reply 1/4/2013 - 3:09pm

I have written her twice and heard nothing back.    She was to start IPI on the 18th of Dec. I THINK.     I have not been able to find a update and was

thinking of her.    LET US HEAR FROM YOU TINA D ..........thinking good thoughts of you and wishing you well.   

 

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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jax2007gxp's picture
Replies 14
Last reply 1/4/2013 - 1:38pm
Replies by: Anonymous, alicia, dutchchic, jax2007gxp, mclaus23

Hello all,

Well, my scanxiety (new word I learned today from Charlie S...thanks for giving it a name!!) is over.  The biopsy confirmed malignant melanoma.  I have an appointment with Dr. Jakowski at the Chao Cancer Center at UC Irvine on Wednesday morning.  I'm not wasting any time in fighting back!  The crying is (mostly) over and I'm ready to kick Mel's a$s!!!

Thank you to everyone who has been so supportive and shared positive thoughts.  It is greatly appreciated.  I'm sure I will be looking to you for more advice and shared experiences in coming weeks and months.

Jacki

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Replies by: awillett1991, Swanee

Hello,  I am new to this group and as the girlfriend of a Metastatic Melanoma patient, I have a ton of questions and I don't get to all the doctor appointments at Vanderbuilt Medical Center as I live out of town.  

First question.  Matt chose to do a clinical trial with PX866 and Vemurafenib.  I think we both thought this would "cure" the tumor growth and it has reduced the size of the tumor on his cheek.  But it now sounds like he will be on this until it stops working and then he goes on another medication.  So there isn't a "remission" period?

He has been told the melanoma is "in his blood".  what does this mean?

Has anyone done radiation and Venurafenib?

Thank you,

Renee

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audgator's picture
Replies 4
Last reply 1/3/2013 - 3:13pm
Replies by: Linny, audgator, lou2

Have any of my fellow PD-1 test subjects been on Azithromycin?  Has anyone been told not to take it?  I am asking because I am fighting some type of URI/cold and that is what was prescribed. In the precautions it said to check with your doctor if you are on cancer meds.  Can't do that on News Years Day.  Thanks for any opinions.  Dan

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jenniferdraper's picture
Replies 2
Last reply 1/3/2013 - 1:06pm
Replies by: Swanee, Anonymous

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