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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jaredmiller16's picture
Replies 8
Last reply 11/11/2011 - 3:11am

 

 

Like many of you know, my mom died of melanoma. You would have thought with her diagnosis, I would have been better about staying out of the tanning beds (went there to hit on girl, soon to be wife, about twenty times)  and sun, but I was young, in college, and just flat out stupid. Now, I look at my kids and think, "gosh, I could die as a result of something stupid." The guilt is killing me.  Which is strage because I am leaving for a pretty brutal mission to Afghan soon. I know the risks associated with my job, but this kills me more. For whatever reason. Maybe its because of my mom. She had a lot of guilt too.

 

Am I the only one who feels this way? '

 

I talked to my doctor about it and she said a lot of smokers feel the same way after being diagnosed with lung cancer. Only difference is that skin cancer is one of the few that we can diagnois early (because its on the skin). But, again with my mom going from stage 1 to stage 4, it scares me and I think more. However, I apprecaite this board and their uplifiting views regarding my fear. My wife saw an instant change in my attitude one I signed on. I just am wondering if its normal to feel guilt like this.

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"Primary dermal melanoma is a distinct subtype of melanoma characterized by improved
patient survival and unique IHC findings ... compared with both cutaneous MM and PNM
(primary nodular melanoma), which it may simulate histologically."

The following article also mentions that:
"Since our initial report of PDM in 2004, we have continued to prospectively identify,
treat, and follow the largest cohort of patients with presumed PDM. Improved ability to
diagnosis PDM via IHC markers will help to avoid potential misdiagnosis as stage IV
cutaneous metastasis and result in optimal patient management and counseling regarding
prognosis."

See full article (free) at:
http://archderm.ama-assn.org/cgi/content/full/144/1/49?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=Primary+Dermal+Melanoma&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT

Best wishes

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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Replies by: mombase, Anonymous, FormerCaregiver, JerryfromFauq

An abstract of one of the presentations at

8th International Congress of The Society for Melanoma Research
November 9–11, 2011

The Pennsylvania State University College of Medicine, Hershey, PA,

PLX4032, clinically known as vemurafenib, is a V600EBRAF selective
inhibitor. It is effective in patients containing V600EBRAF protein,
leading to an ~80% partial or complete anti-tumor response rate
during the first 2 month treatment cycle. An average regression
period of 2–18 and 6.2 months progression-free survival is observed
but all patients eventually relapse developing drug resistant invasive
disease. Recurrence can be caused by secondary BRAF mutations,
alternate pathways of MAPK reactivation, or activation of compensating
alternative survival pathways. The mechanisms promoting
disease recurrence to BRAF targeting agents are an extremely
important area of research for the clinical management of melanoma,
which remains to be completely unraveled and the epigenetic
contribution to this process in unknown. Once the mechanisms are
completely elucidated, this information would be useful for designing
better approaches to prevent resistance and disease recurrence.

This study demonstrates that an acquired more invasive resistant phenotype
can occur following treatment with BRAF inhibitors by increasing
methyl transferases activity to promote epigenetic silencing of genes
regulating this process.

Vemurafenib treatment led to promoter
methylation and silencing of the invasion suppressor CD82 in
melanoma cells. Lack of CD82 in turn increased the invasive potential
of the cells, promoting migration through vessel and capillary walls,
thereby aiding development of metastases. Invasive metastatic
disease mediated by silencing of CD82 could be reversed using
5-aza-2¢-deoxycytidine (5AzaC), clinically known as decitabine, which
then decreased the invasive phenotype mediated by these agents.
These observations suggest that combining BRAF targeting with DNA
demethylating agents might be one clinically effective approach to
overcome the development of resistant invasive melanoma following
treatment with agents such as vemurafenib.

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Karolina's picture
Replies 3
Last reply 11/10/2011 - 2:10pm
Replies by: Karolina, Anonymous, Janner

Hi,

Does anyone can give me some more info about  amelanotic melanoma? 

 

k.

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ChristineL's picture
Replies 15
Last reply 11/9/2011 - 4:49pm

Anyone have experience with peg interferon?  For me at stage IIIB it's one of two options since I don't qualify for any trials (it's either that or regular interferon).  I'm extremely hesitant to do Interferon for a lot of reasons, and supposedly peg interferon has fewer side effects, although it's a 5 year regimen (instead of the 1 year).  I'd love to hear thoughts on this!

Thanks a ton,

ChristineL

Fight like hell

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Lisa13's picture
Replies 3
Last reply 11/9/2011 - 3:07pm
Replies by: Lisa13, momof2kids

First of all, I wish you the best of luck with your scans coming up.  There may be incredible news that your tumours are shrinking.

I wanted to ask you about your brain met. Did you have the one remain in your brain because it was bleeding and when it stopped, two areas were gamma knifed?  The reason I ask is because I decided against WBR right now. The radiologist suggested I wait 3 weeks, have another MRI to see if the blood is gone and then gamma kife both. He doesn't think they will grow much bigger in the next 3 weeks as they've been there for awhile and likely bled a week or 2 ago. They can't even see a tumour at all because of the blood, but they expect it's small like the other one.  What were your Dr's thinking if your bleeding didn't stop??

It sucks that ipi worked so well on me, but I grew 2 small brain tumours sometime between the end of July and now.  I'm still hoping that the army of lymphocytes can still crawl into my brain and stop anything further from growing for a long time.

I feel good things for you :)

Lisa

Stage 4 - 50% reduction in lung mets - most even disappeared - 2 may be inflammed

2 new brain mets since ipi, but nowhere else

Many impossible things have been accomplished for those who refuse to quit

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dearfoam's picture
Replies 5
Last reply 11/9/2011 - 12:24pm
Replies by: dearfoam, deardad

Took dad for his CT scan (chest/ abs/ pelvis) this monring and got the results before lunch. I did not ask for a paper copy today; just plain forgot.

Doc says unfortunately the chest tumors showed about 10% growth and the oters in the abdomen and pelvis showed even more. The spleen in particular is up to 3.3cm from 1.9cm in late August (last CT scan). The spleen met was discovered in late April so it has only grown - in fact the best we ever heard about any of the chest/abs/pelvis mets was "mild" and "stable" over the summer. The others include one on colon, one on left adrenal gland, others scattered about here and there.

So for the good news: Since dad has been on Temodar since early May of this year, the doctor said it is time to move on to Zelboraf as his BRAF results had FINALLY come back conclusive, and positive for the mutation. The test was for one of his moles removedin October. However we still do not know if there is going to be a response because it appears he has had more than one primary melanoma, and they might be different from one another. There are a lot of variables! Testing his brain, lung and spleen mets was deemed too risky, by the way, so we are banking on the BRAF gene form this mole matching the other mets.

Of course the next MRI isn't until December, so will have to wait on that, and by then hopefully we will see some shrinkage upstairs. 

And frankly, this was a long-wait-but-way-too-quick-consult today. I even brought a typed list of questions and a letter to the doctor's office before the CT scan (3 hours before we saw Dr.) so he could go over some more sensitive issues with dad, man to man, but it appeared that he had not read it or just plain ignored my request. I saw it in his hands, but it looked to tidy to have been read. I am telling myself there were more pertinent issues distracting him today.

I am still having trouble having to remind dad he is not mentally or physically in shape to do some things he woudl like to do, such as hop on a plane across the country or go back to working out of town living in a hotel without any help. I know it sounds bad to have to discourage him, but he is just too oblivious to his wellbeing/safety and symptoms and the level of care he needs and receives. I really needed the doctor to help, but maybe he will at the next follow up in three weeks? If not I might try to schedule with the Supportive Care clinic, but hearing things from the more authorative Oncologist is probably most likely to be effective or sink in.

We applied for assitance with the Zelboraf, and either way should be getting it by the end of the week. I hope he will be approved - all these drugs are so expensive. I am also curious how severe the side effects will be as he had very few side effects from Temodar - just some fatigue and diarrhea. He will be goign to stay with my sister for a week and a half starting next Tuesday, and I hope we have side effects figured out before that!

Thanks for your input,

DF

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ValinMtl's picture
Replies 15
Last reply 11/9/2011 - 12:08pm

Unfortunately, NCI advised that the TIL is no longer work on the surface area of my skin.  It has improved lesions in my leg but the surface has increased too much and I need to find a new immunology.   I heard that Dartmouth might have an anti-PDI drug would that be worth looking at.  Any suggests would be appreciated.  NCI is an exceptional hospital and would highly recommend going there..I wasn't fortunate, but there are many that are, very caring.

sob  Val

failed inteferon/ipi/TIL

Live Laugh Love Nothing is worth more than this day!

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Staci's picture
Replies 3
Last reply 11/9/2011 - 11:20am
Replies by: jdramsey, SMS

My dad recently discovered his Ocular Melanoma has spread to his liver. He does not know yet to what extent although I have read some of the medical records and it seems widespread throughout the liver. He is being seen next week at James Brown Cancer Center in Louisville, KY. by Dr. Miller. Has anyone seen this doctor or been to James Brown for treatment?

 

Thanks

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Karolina's picture
Replies 4
Last reply 11/9/2011 - 9:29am
Replies by: Karolina, Hereiam, Janner

Hi,

since I have found out that my friend has a nodular melanoma, i started to be more concerned about myself as well. I have quite a lot of moles on my body and I was wondering whether it would be good to remove any of them which are kind of the biggest or the most "different"? Would removing moles prevent potential develop of melanoma?

I saw a melanoma specialist last week and she didn’t suspect anything at the moment. She referred me to the photographer as she thinks that this is a good way of monitoring my moles: to have some pictures of my moles as a base for comparison of any changes. Sounds sensible… However, I was wondering if by removing two moles which I have on my back and which are prominent would be something right to do?

your views are very welcome

k.

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Karolina's picture
Replies 3
Last reply 11/9/2011 - 4:58am
Replies by: Karolina, Anonymous, Janner

I wonder if you can help me. It is almost a week since my friend had SNB. Her wound under arm is swollen. Is it a normal reaction? Is it related to the cancer or to the surgery?

thank you for your help

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Emily C's picture
Replies 4
Last reply 11/9/2011 - 1:05am
Replies by: Emily C, jmmm, SarahS

Hello everyone!  My name is Emily and I'm completing a project in school...and I need your help.  I am creating a website to advocate melanoma awareness, and I would like to add some other personal stories besides mine.  If you would like to be featured on my website, I would love to hear your story and your thoughts on the current crisis of rising melanoma rates in young adults and children.  Thanks!

I go to nature to be soothed and healed, and to have my senses put in order.

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fenny's picture
Replies 2
Last reply 11/9/2011 - 12:44am
Replies by: lhaley, DonW
My sister had a vaginoscope examination today in Beijng Tumor Hospital and the result showed that the splash in her vagina  increases. Her doctor in charge suggested a biopsy and living in great fear of further spread,  my sister wanted to have another surgery to have it removed. Do you guys think it is good and necessary for a stage IV patient with PM? Pleas offer your advice. Thx.   anda  uPpo  pplsaPPl     Pl   
Make Each Second Count!

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Lisa13's picture
Replies 2
Last reply 11/9/2011 - 12:03am
Replies by: momof2kids, dearfoam

Well, rather than waiting 3 weeks to see if the blood will absorb from my brain met, they're offering me gamma knife next Tuesday.  Even though there is blood in the left frontal lobe, they think it's mostly tumour, although I don't know how they could see it when we couldn't see anything looking at the MRI.  One of my brain mets is 6-7mm and the other one is bigger (but they don't know what size it is).  What should I expect with gamma knife?  Recovery,etc?  Are they quite successful in eliminating brain mets overtime?

I just hope and pray that nothing pops up anytime soon. 

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Phil S's picture
Replies 7
Last reply 11/8/2011 - 10:34pm

Phil and I are headed to MD Anderson this week for our first appointment on Thursday, so if anyone is around and wants to grab tea/lunch please let us know. I think JanOC and Robyn44 might be around, if we overlap days and can get together great! First time to Houston, so hope it goes well and we get offered some effective treatment. Leaving our two young children at home, so a little stressful and sad, thank God for family members who Love them. We would love to connect with other warriors in the fight, our recent battle with brain mets has been scary, but currently manageable. I take iPad so will check emails daily, pvjssim@aol.com. Blessings to all, Valerie (Phil's wife)

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