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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barns1's picture
Replies 3
Last reply 3/28/2011 - 1:51pm
Replies by: barns1, Janner, Carmon in NM

Hi, I have had two melanomas, one in 2005 ulcerated and one in 2009 non-ulcerated. I also have been diagnosed with chronic lymphocytic leukemia. What are the chances the melanoma will show somewhere else in the body because of the ulceration? I have never found any stats, thought maybe someone else has. Thank you.

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Simmy from Oz -Melbourne's picture
Replies 1
Last reply 3/28/2011 - 11:35am
Replies by: Anonymous

Hey everyone,

Ive been taking plx4032 for bout 9 weeks now, with amazing results in regards to shrinking all my tumours.  Only problem is Ive got the most severe, acne- like, extremely sore facial rash :-(    Its been like this for  5 weeks now and only seems to be getting worse.  Its in my ears, on my head, up my nose, down my throat, its crazy stuff!! The rash is all over my body but not as sore or severe as my face.   My whole body is so itchy tho, its driving me nuts! 

Has anyone else experienced this? & how have u treated it?  My oncologist gave me some tabs to treat acne and infection, and some cortsone type cream.  Hes given me a week, and if theres no improvement in my skin, he is going to drop my dosage of PLX, which Im  a bit scared to do when Im getting such a good response.  He does not seem too concerned about dropping my dose & thinks that 6 tabs a day instead of 8 will be sufficient for my body weight (53kg)

What do all you experts out there think & has anyone had this RASH problem...Will it ever GO AWAY??  

Thanks all for your wonderful kind hearted replies,

keep smiling everyone  :-)          Simmy from Oz     xo  

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Nebr78's picture
Replies 6
Last reply 3/28/2011 - 11:33am

I have had a very good friend of mine says that he knows of two people that went somewhere in Mexico and got cured of Melanoma.  Of course you never know if you are cured.        It cost a lot of money $25,000.      This friend is not barking up a tree.   He is from Iowa and I am from Nebr.  We were in service together in Korea (1951.       Does anyone know if any of our Cancer research people have looked into this.   I would think they would and give an evaluation.     There is a fox in the chicken house somewhere.    Ipilimumab was supposed to be approved in Dec. 2010 and then in March 2011, and so far hasn't.    Is there any good reason for this.  I have 2 lumps in lung (4 cent. and 2 cent) and what I have been getting does no good.   Is reasearch really being done?????????????????

 

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We are looking to speak with patients diagnosed with specific types of melanoma including basil cell carcinoma to participate in a confidential paid phone/online study.

 

If they meet the study criteria and participate

They will be paid $175 for a one-hour teleconference

The discussion will be scheduled at their convenience anytime between April 7th to April 15, 2011.

 

This study is being conducted to help improve treatment and education for people living with specific types of melanoma.

 

To see if you qualify click this link  https://www.surveymonkey.com/s/JGVKBJZ

 

For additional information please contact:

Jane Walker at 888-392-5000

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The last several trials in this URL are for c-kit melanomas.

http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/melanoma/cli...

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

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Charlie S's picture
Replies 31
Last reply 3/27/2011 - 9:48pm

Every time I have talked, called or seen  Amy B, it has always been "Amy B, how you be sweet Pea ?"" because she has always been the daughter I never had

.She always gave me either a sterling smile, upbeat optimistic look forward or shared a secret darkness that goes unsaid

No, Amy is not dead; but after speaking with Dennis on the phone miinutes ago, Amy has done every thing she can and will do what is best for her and her family.

 The possible trials are all out the window.....................(editorial)..after, I might add that they gave her hope, but full well knew her medical history in advance,  and after weeks , turned her down because of her medical history (wtf is UP with that?)

I told Dennis, and I meant it, that he has balls of steel to keep it all together right now.

He has made arrangements with Hospice so that Amy can be, as she is now, at home and as comfortable as possible.

Please keep Amy, Dennis and all of their family in your thoughts as they traverse the hills, mountains and valleys while they all reach and cling  for one more sunrise and sunset....................no matter how difficult it may be.

annnnnnnnnnnnnnnnnnnnnnd, AMY B..............how you be be sweet Pea??????

smoch

Charlie S

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Jerry from Cape Cod's picture
Replies 12
Last reply 3/27/2011 - 9:46pm

No freakin' evidence of Melanoma. NED or whatever it's all good.

The lower left lobectomy was a complete success.  The pathology is better than we had ever hoped for.  As we suspected the only need for the lobectomy was the damge caused to the airway by the tumor location.  There was evidence of necrosis and within a few months the tumor would have been gone, but their was also pneumonias collecting in the lower lobe and a swollen lymph node was putting pressure on the upper lobe.

After surgery my blood oxygen maintained at or near 100%. 

I'm at home a bit tired but Oh so Happy. 

Bonnie Lea... it's time to DANCE.

Jerry from Cape Cod

Stage IV - Ipi "Brain" Trial week 111.  That's 2 years, 7 weeks.

It's about kickin' Melanoma's butt! "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." in memory of NicOz

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Anonymous's picture
Replies 3
Last reply 3/27/2011 - 9:16pm
Replies by: Jim M., Lisa13

I am reading that Yervoy is approved for 'late stage melanoma.'  Does anyone know if this includes any stage 3c patients?  Could it be perscribed (maybe not paid for by insurance) to stage 3 patients? 

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Anonymous's picture
Anonymous
Replies 6
Last reply 3/27/2011 - 8:41pm

I had some soft tissue removed from my left groin on 2/23/11 because I had discovered a lump. It came back melanoma. No sight has been found. I had a pet scan, ct scans of my abdomen, pelvis, brain and chest done 2 weeks ago. No cancer showed up anywhere. My doctor wants to do a  superficial dissection of my lymph nodes. Just wondering if anyone of these cicumstances and a normal practice?

I Love Jesus

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EricNJill's picture
Replies 5
Last reply 3/27/2011 - 8:29pm
Replies by: Anonymous, premedy, Lori C, EricNJill, jim Breitfeller

Eric has been on the GSK BRAF/MEK Combo Trial.  The changes in his leg have been outstanding!  His tumors are shrinking rapidly.  One external tumor on his leg went from being 4 1/4 inches to less than 2 inches and his leg is actually normal size for the internal tumors shrinking.

What is confusing for me is that he has new enlarged tumors around his heart and new non-calcified nodules in his lungs.  Why would the treatment work in his leg and not the heart and lungs?  His Oncologist said that if he hadn't obviously had response in his leg they probably would have stopped the treatment.

Thanks for any help.  JillNEric in OH

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I have spent a significant amount of time reading as much as I can from everyone regarding the BRAF Mek trial.  Everyone has been so positive and their words have truly helped.  My mother in law has stage IV melanoma.  She has multiple tumors under the skin in her torso, legs, and two on her head.  Her scans also show a tumor in her right hip.  Her scan have indicated that the cancer has not spread to any vital organs.  She is tired and has a lot of right leg pain.  Tomorrow is a big day.  She will begin the BRAF Mek trial at the Beth Israel Hospital in Boston.  We are hoping for the best.  I am her primary care giver and I have told her about this website but she is not ready to read it.  I just wanted to say thank you to all those who are sharing their experience.  It has helped me stay knowledgeable about what to expect. 

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Anonymous's picture
Replies 4
Last reply 3/27/2011 - 2:40pm
Replies by: Anonymous, CKasper, lhaley, EmilyandMike

Hi All,

For what it is worth, I contacted my Blue Shield of CA (spoke to Manager over Benefits) regarding coverage to pay for IPI. I was told that the fact FDA approved IPI there was no guarantee the Blue Shield would pay for the drug. Patients would have to get a pre-service authoriztion which entails reviewing patients history  then Blue Shield would make a decision whether or not to pay for the drug. 

Well, the review of patient's history is a reasonable process to determine coverage on IPI. But then I was told that IPI is so new, that the decision to pay for IPI was very low because the drug was so NEW & the drug is considered experimental/investigatory at this stage...not enough patients took the drug on the clinical trials

For those now on the drug under compassionate use,your chances are better to get payment for IPI because you are in the middle of treatment. For those, hoping to start IPI, it will be an up hill battle with Blue Shield.

I asked if IPI covered under Medicare would that make a difference that Blue Shield would pay for IPI. The manager told me "NO". For those not  covered under Medicare, our chances of getting IPI paid for by insurance could be problematic.

I read another post on MPIP that said, maybe we were better off having IPI under compassionate use because now it is up to insurance companier whether or not to pay for IPI. I think that is a worse situation than trying to get IPI under compassionate use. Now our fate is up to the insurance companies. Life is not easy.

Thanks for taking the time toreadmy post

Douglas

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Rocklove's picture
Replies 5
Last reply 3/27/2011 - 12:31pm

Hi All,

I posted earlier in March I failed IPI and Dr. Weber reccommened I start a round of carboplatinum/taxol and get to MD Anderson. I did the round of carboplatinum 3 weeks ago and have an appt with Dr. Falchook on Tues morning. I hope he has something for me that works.

If anyone is going to be at MD Anderson the next week or two it would be a pleasure to meet up with you. They gave me the blanket two weeks for testing etc. But everyone I have talked to said it does not take that long.

I'll try to keep you posted on what Dr. Falchook reccommends.

Thanks for all the prayers and positive thoughts.

Rocky (Stage IV Liver Mets)

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Hi,

I responded to a survey MRF posted and was selected to be interviewed by a New York Times reporter about my experience with Ipilimumab, and he actually wanted to know about my journey with melanoma (5 years) and other treatments. I dont know how much, if any, of my "story" he will arite up in the New York Times, but just to interview was exciting! The reporter called me at home last night. He said he will send me a copy of the article when he is finished.

I know I dont have much experience with Ipi, just having started it December 1, 2010, but I have had really good success with it. I am hoping it keep on working for me and I start my next round mid-May. 

Just wanted to let people here know.

Vermont_Donna, stage 3a

currently stable (NED) after 4 infusions of Ipi

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liz in Aust's picture
Replies 23
Last reply 3/27/2011 - 9:36am

Hi I am 36 and live in country Australia.

I was diagnosed in 2006 when my baby was 8 weeks old.

Had surgery in May 2006 to remove 3 large tumors from my adbo, along with 3 section of my small and large intestine.( the diesese was in the myestenty of my bowel) had more surgery in 2007 to remove 1 small tumor from beneath my kidney and i had then been clear for 3 years just having blood tests and CT scan every 3 - 6 months.

I had a recent positive scan in June after feeling a bit "off" and now have 2 main tumors in my abdo and many small nodes, they tried to surgically remove these but when they operated thought there was too much diesese to be able to completely remove it all, so did not want to put me though a huge operation and recovery. So they only removed one small easy to get to tumor.

They tested the tumor for the Braf mutation and found it to be negative which was very disappointing.

I have just started DTIC (or dacarbazine) and have finished the first cycle. they will rescan me with a ct after 3 cycles to see how it is going. Currently my belly is quite swollen and tender but generally feel ok.

If the DTIC  does not work they plan to give me Ippiliumabab in Melbourne.

I see a local oncologist in my home town of Albury and Prof Cebon ( Mel specialist in Melbourne). Being a country patient it makes it hard to get info on treatment options etc.

I am feeling quite desperate and wanted some advice on other options people have tried that I could also look at, that maybe I have not considered or been offered, and appreciated any info.

Thanks Liz 

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