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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Cindy VT's picture
Replies 1
Last reply 9/30/2013 - 11:36am
Replies by: sharon0803

I am stage IIIB, NED since 2010.  First ocurrence in 1984, second occurence in 2005.  Still here, still waiting for it to come back.  I know bad attitude.  I'm just tired.  Stroke in 2012, heart attack in 2012 and 2013. 

My cousin died at 58 from Melanoma, well maybe pericarditis, not sure.  Haven't spoken with that side of the family for a long time.  Then a cousin decides to contact us and tells us how her sister died of melanoma.  She had the disease for 30 years.  I'm 29  years, and I'm 56.   She did smoke, and she started to get a different kind of cough, not the normal smokers hack.  So she went to the doctor and found mets in her lung.  According to my cousin, she went into the hosptial and never came out.  She said her heart filled with fluid as well as her lungs.  She was also overweight, not the normal skinny wasting away cancer victim.

My father had multiple myeloma and he was 6'4" and weighed about 130 pounds when he died.  Dad did not die of the disease he died of a heart attack.  The doctor said he would have probably lasted another 6 months.  Yeah of pain.  Thank God for the heart attack. 

I have pericarditis, its getting worse.  I was on a med called colchicine its a very tough med to be on. So I decided it was not worth the pain to be on this med.  I am overweight, and not from eating.  So I guess I'm thinking I'm on the road to pass on but when?  I am just stunned by my family member's story of how my cousin died of this disease.  I thought I was doing pretty good.  I'm not really worried about dying, I hate the suffering and the pain. 

I needed to vent.  Sorry.

 

Cindy VT

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Anonymous's picture
Replies 1
Last reply 9/30/2013 - 11:15am
Replies by: Sherron

Miles Against Melanoma North TexasLewsiville, Texas · Non-Profit Organization · 364 like this

 

Sign up and Register for the walk it takes a village to raise awareness and raise funds to  raise awareness,-hope and new treatment available.

 

Melanoma Fighter you can find all info on facebook or active.

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Anonymous's picture
Anonymous
Replies 5
Last reply 9/30/2013 - 10:49am
Replies by: Cindy VT, Anonymous, bkinman, POW, pd1gal

Sorry to post this as "anonymous", but I have family members who are active readers of this site, and I don't want them to panic.  Also, I don't quite want to admit to myself that I could have brain mets.   So...in the last few weeks, I have had the weirdest feeling that my vision is a little off, that I have to remind myself what I am doing, especially when driving, that I am feeling pretty sad, and that I am breathless and dizzy sometimes, even though I continue with my fairly strenuous exercise routine for a 62 year old.  I have been stage IV for almost 24 months with only surgery as treatment.  I imagine/hope this is just depression, ( I have suffered from that before), but the vision thing is different , and so is the feeling that I am forgetting how to drive.  I realize that the symptoms of brain mets differ depending on what part of the brain is affected, but I would love to hear how brain mets manifested themselves to any of you.  I  do have chest, abdomen and pelvis scans scheduled for a month from today, but I could add the brain.  Don't really want to know, but perhaps that is childish!?  Please help by sharing your experiences.

Love and light to all.

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Janner's picture
Replies 11
Last reply 9/29/2013 - 6:32pm

Dian's husband doesn't post here so I'm posting this news for him instead.

Dian has been on this site since 2003 as a stage III warrior, a NED warrior and stage IV.  She hasn't been as active here recently, but she spent many hours (and years) answering questions and manning the chat room looking to help other warriors.  She was selfless with her time and knowledge and she will be sorely missed.  I am thankful I could call her my friend.

Rest in peace.

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Miles against Melanoma walk November 2nd in Lewisville Texas join in with spreadin awarness and hope..

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Linny's picture
Replies 1
Last reply 9/29/2013 - 4:42pm
Replies by: Roxy1453

Past President of ECCO, Professor Alexander Eggermont, Directeur Général of the Institut Gustave Roussy Comprehensive Cancer Center (France), who specialises in the treatment of melanoma, commented: "This pooled analysis clearly demonstrates that ipilimumab can lead to long-lasting tumour control in metastatic melanoma patients. With a response rate of only 10-15%, one can achieve more than 3-10 years survival in 17-25% of patients who have received only a few doses of ipilimumab. Thus, patients apparently can keep residual tumours under control for a long time when the immune system is properly 'reset', and the concept of 'clinical cures' becomes a reality. These survival results could even double or triple with anti-PD1/PDL1 monoclonal antibodies, and metastatic melanoma could become a curable disease for perhaps more than 50% of patients over the coming 5-10 years."

http://esciencenews.com/articles/2013/09/27/longest.follow.melanoma.patients.treated.with.ipilimumab.shows.some.survive.10.years

Considering where we were with Melanoma even as recently as 2010, this is pretty astounding.

I just with there was a way to "fast forward" Anti-PD1/PDL1 and get it on the market.

Stage III, Unknown Primary; 1 positive node in left axilla

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Rocco's picture
Replies 1
Last reply 9/29/2013 - 4:09pm
Replies by: MaryD

I experienced side effects of the eye while on Ipi trial (10MG/KG compassionate use) way back in 2009, and just this year was diagnosed with thryoid issue, Graves Disease and very early Glaucoma.  Wondering if anyone who had the same strength dose of Ipi while on trial have experienced eye issues since stopping?

- Just Curious

-Rocco

Luke 1:37

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DonnaK's picture
Replies 9
Last reply 9/29/2013 - 2:07am
Replies by: NYKaren, DeniseK, GAngel, Mat, POW

I'm hoping to get some advice about a few issues that have been bothering me lately.  As you may have read in previous posts, my husband has a rapidly progressing melanoma w/ the main problem being innumerable brain mets.  He responded excellently to zelboraf but had a liver toxicity; while waiting for his liver to recover, his brain mets grew and forced him to have WBRT. He also had a single dose of Ipi but lost the ability to walk so we switched to Dabrafinib, since it seemed like he didn't have enough time to wait for Ipi to work.  He is doing okay on dabrafinib, though the improvement doesn't seem to be as impressive as it was with Zelboraf.  So here are my questions:

1.  John seems to do much better when he is also on decadron, due to brain swelling from the WBRT(?).  However, it is written all over the dabrafinib insert that decadron (dexamethasome) and dabranib interact with eachother.  Johns doc at SK is not the least bit concerned with the interaction. I don't know that there are really alternatives to the decadron, but I just want to make sure it's really okay to take both.  Does anyone have any insight from their own experience or doctors opinions?

2.  I've started to question the oncologist for next steps.  Given John's extensive disease, I'm nervous that this is our last chance to have real success.  I would like to consider combining dabrifinib with either ipi or the MEK inhibitor, but  hte doctor is dead set against both.  I understand her hesitation with ipi, but am confused by her reluctance to try dabraf+Mekinist.  She has said that the only other patients at SK on the combo have had severe toxicities.  Is that consistent with what everyoen else is saying? My understanding was that the combo actually lessened toxicities...

Thanks in advance! I'm trying to not overthink everything (as I'm known to do), but want to make sure that John is getting the best possible care. I felt that traveling to Sloan Kettering gave us the best shot, but now I'm having second thoughts... 

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DeniseK's picture
Replies 15
Last reply 9/28/2013 - 11:28pm

I am so touched that my family here is worried about me and is wondering how I am.  It makes me feel really good knowing you all care :)  (((HUGS TO YOU ALL)))))

So here's my update:

I went to see my local oncologist not feeling very well, I had been losing weight rapidly, a lot of sleeping, I could barely talk, eat, or swallow due to a met growing near my larnyx, I was prepared for the worst.

 I told him I'm not giving up so we are NOT here to discuss hospice we're here to discuss what's next,  He has another patient that he's been working with with Dr. Minor my specialist so he recommends MEK inhibitor.  I was scheduled for radiation on my throat and my arm.  Today I called to cancel those appointments because the MEK has reduced my tumors!!!!  The one on my arm is almost gone.  I have my voice back and can eat and swallow just fine.  Yesterday I ate so much my stomache hurt!!  :)  I have only been on MEK for a little over a week and it;s amazing!  I am still taking 1/2 dose Z but changing that to Dabrafenib soon, Maybe.  We're scheduling an MRI to see what;s going on upstairs so maybe I can get into a trial still.  

I know I've been given this short window of 6 months to a year with MEK but by then Anti PD 1 may be approved.  I am assuming it is the MEK that is shrinking the tumors and not Ipi but that could also be kicking in.  Who knows? All I know is I'm feeling good and feel like I've been given a miracle.  My daughters wedding is in March 2014 and I feel like I will be there crying my eyes out!  :)  

I didn't even think of MEK being an option. 

Thank you all so much for caring.  

All my best to you all.

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Michelem's picture
Replies 4
Last reply 9/28/2013 - 9:17pm
Replies by: Michelem, Fen, BrianP

Hello - I'm the spouse of a newly diagnosed melanoma patient and am so glad to have found a reliable source of sharing information. I am frightened!
My husband has had a non-healing sore on his foot which is diagnosed as melanoma. Sonogram revealed three spots in groin lymph nodes which are also malignant. He will have surgery to address these issues in three weeks. We are awaiting results of his PET scan, and he will have an MRI next week.so we don't yet know what stage or what further treatments. He is a very youthful 72.
I look forward to learning from others here, and having a place to ask questions of those who have been through or are going through this experience. Thank you!

MicheleM

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sbrooks90's picture
Replies 3
Last reply 9/28/2013 - 8:56am
Replies by: hbecker, POW, JoshF

Hello Everyone,

The last time I posted on this board, I had decided to undergo a CLND after a positive SNL was found. Today I can report that the results of the CLND has resulted in no further involvement! I cant begin to express how happy I was to find that out. I am now waiting to meet with a medical oncologist to determine the best treatment option for me (likely IFN-A) but have yet to come to the conclusion on what to choose. Big shout out to all active members on this board who have helped me through my journey so far... amazing people you all are.

Samuel

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Aussielyn's picture
Replies 2
Last reply 9/28/2013 - 2:59am
Replies by: Johnfdc7, JoshF

Hi from Australia ! This is my first post .
I am Stage 4 after having mole on ankle removed 29 years ago. 22months ago I had full pelvic inguinal node dissection after a swollen lymph node showed metastatic melanoma. Only one node was affected & no radiation required. I was lucky & had no lymphedema. End of good luck!

While on hols in June this year I noticed pea size lump in soft tissue anterior left deltoid - biopsy showed malignant metastatic melanoma - PET Scan showed high grade tumour in right deltoid muscle, & mets in left groin, behind right knee, outside abdomen anterior to left para spinal muscles as well as lesion deep in right adductor muscles. I tested Braf positive & am now on compassionate access to GSK combo. This is my 7 th week - plain sailing till week 6 when fevers, headaches, mouth ulcers , severe feet & leg pain & severe dehydration all hit at once. I was taken off drugs (300mg Dabrafenib & 2 mgsTrametenib) for a week. Am now on 200mgs Dabrafenib but same dosage of Trametinib.

I would love to hear from anyone else who is knows about this treatment - what side effects ? What success? What your journey has been like? Today is the second day since resuming meds & already legs have started to ache ! Just hoping they don't get as bad as last week.
Do hope you all are feeling well & positive today.
Cheers Lyn

Heal with every inhalation and let go of cancer with every exhalation.

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blissful_creations's picture
Replies 1
Last reply 9/27/2013 - 11:46pm
Replies by: JoshF

Hi all! I have the exciting news to share that after being diagnosed with 3b and  5 10 mg ippi treatments part of a cancelled study arm for toxicity I am still NED. I have had my scans this morning showing I am free of disease. Lord knows I have had a lot of scanxiety.

I am really lacking in faith and trust sometimes in the Lord because sometimes I am really scared. I am 27, intially diagnosed at 25, with two kids, 3 and 5. I did not think I would be able to see another birthday with them but here I am. I guess if the Lord intends for me to go, I will be going but I will fight the good fight before I will be departing from this life.

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