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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Happy_girl's picture
Replies 2
Last reply 8/4/2014 - 1:09am
Replies by: Socks, brittanyx

I had been posting anonymously- but after encouragement from several people, I created a profile.  I am so thankful for those who has posted and shared their thought and opinions.  I feel like I am all consumed by my diagnosis right now and constantly afraid.... Afraid that I'll miss my baby girl grow up....leave my best friend.

* I believe next I will have a clnd.  My sln was originally said to be clear- but then 4 months later said to have a microscopic cell.  I'm so uncertain about what is coming next.

thanks for your thoughts!

~ also.... Thoughts on interferon???

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tcell's picture
Replies 9
Last reply 8/4/2014 - 5:44am

So I had another appt with my onc yesterday and we scheduled the first Ipi infusion for Aug 13.

the idea is to have about a 2 week washout for Mekinist which I stopped taking today. The I will stop Taf 5 days before the infusion and continue 3 days after each infusion again. So in reality it is a parallel treatment as 5 days is no real washout.

Due to my high tumor burden in chest / lungs, abdomen, liver and bones this may become a bumpy right  and if Ipi does not kick in within a reasonable timespan I run the risk of not making it. My LDH is 800 now.

next staging is only going to be after all 4 infusions as according to my onc it would not change anything. He did not want to make any statement on when to declare Ipi a failure and apply for the  Anti-PD1 EAP but stated that nobody could tell if I would be in the condition at the time to still be eligible.

all in all this looks like the start of a tough 3 months in a dark valley with the only hope that I will be able to celebrate my 36th on Nov 4.

if anybody has a better idea than what I have been planning now or any hints for my Ipi experience I would be grateful!

thanks to you all,

Chris

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gaby's picture
Replies 15
Last reply 8/4/2014 - 7:08am

HI

My husband is stage 3A since July 2012. He is with interferon pegylado treatment since October 2012. Since his diagnosis that we have no holiday. My husband is terrified of being under the sun, so is very difficult to go out somewhere. I do not know how to solve this issue. My husband used sunscreen but the sunscreen does not give the peace. He is now 40 years old.

Appreciate any advice

Regards

Gaby

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arthurjedi007's picture
Replies 3
Last reply 8/4/2014 - 10:20am
Replies by: Maureen038, tcell

Just thought I would mention Siteman in Saint Louis via Dr Linette has Merck's EAP PD1 pembroluminab if anyone needs it.

We decided to keep going to Mayo for now though. Especially the next visit for the August 13th scan. This will be my first scan with it. So far they never have kept me on a medicine after it's first scan. I really hope they keep me on it. My Mayo doc says not to worry so I try not too. I do know 2 and maybe 3 Mayo docs will be looking at the scan and deciding. I leave it up to God and plan to have Dr. Rosenberg's number in my phone.

 

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cc's picture
Replies 2
Last reply 8/4/2014 - 4:14pm
Replies by: cc, Janner

Good morning, 

   My dermatologist called on Friday morning stating that a  mole that I had removed last week from my lower leg was found to be positive for a "very early" melanoma.  Of course, I wasn't prepared for that and don't think I asked the right questions.  I did ask him how he knew that it was very early, and he said that that was what the pathology report stated.  He then told me to come cack in on Thursday of this week to his office to have it removed.  i have been calling the office to try to get the data from the report, but have not  heard back.  From reading around on this site, I think that he must mean that it is in situ.  My question is, do I try to schedule an appointment with a melonoma specialist, even if it is a "very early" melanoma?  I am not far from the University of Pennsylvania, and would go there, but I am not sure if  I need a specialist for an early melanoma.

 

Thanks!

  CC

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Anonymous's picture
Anonymous
Replies 11
Last reply 8/4/2014 - 4:42pm
Replies by: Anonymous, sweetaugust, JerryfromFauq, kylez, RJoeyB

I just learned that my wild type melanoma tumor has the NRAS mutation.  I have had one recurrence since initial diagnosis that was surgically removed.  I am stage III after the last tumor removal.  

What are some of the potential treatments for this tumor mutation?

Thanks.

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Gene_S's picture
Replies 13
Last reply 8/4/2014 - 7:13pm
TY BOLLINGER GIVES YOU A GREAT LITTLE E-BOOK ON SUGAR

Just this week I got a copy of Ty Bollinger's latest attempt to help you with information.  He calls it "Sugar -- The White Death."  Most of you know that Ty is a fellow author on natural cancer healing.  His book is called "Cancer -- Step Outside the Box!"  You'll find this great four-page article from Ty about sugar here:

http://TheTruthAboutCancer.com/download-sugar-white-death/

If you want to know all the variety of sugars and the health problems they cause, please read this short e-book. 

 

 

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Happy_girl's picture
Replies 4
Last reply 8/5/2014 - 12:01am
Replies by: FayFighter, SABKLYN, Anonymous

Does anyone have an opinion about dr coit at memorial Sloan Kettering?

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robbylee's picture
Replies 8
Last reply 8/5/2014 - 12:29am
Replies by: robbylee, dnovak, Phil S, Anonymous, curious12

Our 15 Month old son was just diagnosed with Pediatric melanoma. Is there any information that outlines the possible causes of mlanoma in children this young?

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/5/2014 - 4:11am
Replies by: rick1981, HelenQLD

Hello-

After my father in law noticed a small lump on his side in spring of 2013 his GP doctor told him to watch it. Fast forward to January 2014 and he had the lump removed. It was a melanoma tumor the size of a softball. Scans later reviewed he had lung mets along with additional spots on his spine, bone, liver, splean, and abdomin. They did one round of Ipi before learning he had a BRAF mutation. He was put on the Mek combo and his LDH levels seemed to return to normal in April, may & June after being in the mid 700's. Two weeks ago he had an onc appointment and although his scans showed to be mostly stable he had two soft tissue spots grow on his right side and his LDH level was back to mid 700's. The onc started him on Ipi today, but his blood work showed almost a 900 LDH level. My concern now is he is already in so much pain (on morphine and delada) with it so far progressed I don't know if he will be around to see if the Ipi had worked. We have a great melanoma oncologist at a great facility I'm just concerned it's too late. 

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robbier's picture
Replies 3
Last reply 8/5/2014 - 9:50am
Replies by: robbier, RJoeyB, Ginger8888

smiley  Bringing everyone up to date.  I had biopsy April 14, then Biopsy April 24, sent to MD Anderson May 26th of 2014.  Came home, Biospy June 20th here at home (with home being south alabama).  I live in  a small town that is approxiately 20 to 30 minutes from Gulf Shores, Al.  Had a pet scan July 23, saw my doctor yesterday.  Being sent for a Bone density test.  The findings on Pet scan states: Metastatic disease suspected in the left symphysis pubis and right mid femur.  (2) Activity with the right chest compatibile with recent surgery as well as midline abdominal pelvic incision.  So bone test, then back to see Doctor to discuss clincial trail, wich Yervoy was discussed.  I have that BRAF gene, and that could mean a combo of drugs. 

I have  already told doctor that when I do the medicine, for them to go ahead and put port in, I only have one vein that can be used due to lymph nodes missing from my right one.  I was stuck three times Wednesday befind finding my vein for the pet scan, (veins deep) and small in hand, they blow.  Stuck twice onThursday at Doctors office, then the vein qit giving that blood they wanted. 

I keep my head up, and I still have a strong faith in God and believe in him.  I know that is where my strength comes from in handling this situation.  So any infromation someone might have that can help me make a good deciision on medicine or treatment will be benefitul.  

 

Iam now considered Stage IV MIB for Melanoma, I have had no kind of treatment and been battling since august 2011.

robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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ray39's picture
Replies 2
Last reply 8/5/2014 - 7:52pm
Replies by: DZnDef, Kdw2012

I've had a mole on my stomach forever but recently I pulled some loose skin off it and the middle scabbed over. It is about 4mm and black in the middle with brown edges. My dermatologist looked at it during my last appointment and didn't say anything about it. That was about 6 weeks ago. I've moved my sept appt up to aug 18.  Could he have missed something?  It has me worried. 

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Camila Navarro's picture
Replies 9
Last reply 8/6/2014 - 12:34am

My mom had this stage III melanoma, that reached 1 off the limphs. She already had the surgery to remove it and the limphs.

 

Now the doctor want her to use the interferon, and I've readen a lot about it, and would like to know about people that used it, about the side effects

 

Thank u very much

Mother have a stage III melanoma

 

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ashleyelizabeth's picture
Replies 11
Last reply 8/6/2014 - 12:07pm

Hello all :)

I am a 27 year ok healthy mom of a 2.5 year old boy (my everything!!).  About 3 weeks ago my sister noticed a black mole on my back and said I should get it looked at.  Naturally I am a worrier and slight hypochondriac so I called my doctor right away.  She set me up for an appt. I went in and showed her my mole.  It was miss shaped light and black and raised.  All the characteristics I don't want to have.  He said she was concerned but not worried.  He said some back tomorrow and have it removed so I did.  I right away thought this is it, it'll be cancer and my life is over.  Well my whole family said it's nothing, don't worry, skin cancer isn't going to kill you.  

My doctor called me today after two weeks and said that it was malignant.  My heart stopped, this is so devastating!!! She said the biopsy says that the mole is localized and malignant and that I need to go to a plastic surgeon to have more removed.  

I don't even know what to think, I don't know what this means and I am trying har but all I can't think is my baby will lose his mom!! 

Any advise would be lovely!!

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Patina's picture
Replies 4
Last reply 8/6/2014 - 4:13pm

Hi Everyone,

We got a second round of good news after treatment for my Mom.  She's had really good results with both ipi/Yervoy and gamma knife radiation so far.  Today her doctor reported that she had no new brain mets and that all the CT scans look terrific.  - The 18 tumors on her scalp are pretty much gone. Just a speck left really. When this started I'd estimate that if you had to measure the total volume of the masses on her head and neck that it would be about 1/6 of a cup. Maybe more...   - I could have strangled her when I found out what was going on. She didn't tell me! Stubborn lady!

The long and short of it is that this is another story of someone who's had a great response and things looked really grim a few times.  

Melanoma treatment has come a long way in the last few years and is only getting better. I hope in my lifetime melanoma won't be so hard to fight and that there is a cure soon. - Baring that, longterm treatment and management that give everyone the quality of life they want...

 

HISTORY:

My Mom was diagnosed in November of 2013 (age 77) and after seeing 4 specialists (one of which diagnosed her with brain mets that a radiologist "overlooked") and thinking about the options she opted to go with gamma knife radiation and ipi 4 days later.  

In short she had: 2 infusions, got colitis and thrush, had a few hospitalizations due to colitis, finally got the 3rd infusion, got colitis again and then a new radiologist (3rd) treated 16 new tumors in April...   

---Terrific tretment at USC in Los Angeles with Dr. Wong and Dr. Chang.  And many thanks to Dr. Peter Bosoberg at the Los Angeles Clinic. - He found the undiagnosed brain mets. 

 

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