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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Annalive's picture
Replies 1
Last reply 8/30/2014 - 11:09pm
Replies by: RJoeyB

Hello,

I am scheduled to do 3 fractions of Tomo Therapy totaling 15 Gy. for post surgical  residual tumor near L4-L5 left facet joint.  I guess the simple question is ,What type of radiation is delivered?  This may be a lame question but I can't find it onlie.  Is it a radioactive isotope?  A radio frequency?  I just want to understand. Doc not easy to access between visits.  This is my first time being treated with radiation.  Thanks, Ann

 

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Anonymous's picture
Replies 3
Last reply 9/1/2014 - 4:13pm
Replies by: Becky, Anonymous, Janner

I just noticed a dark brown "freckle" on the gum above my front tooth. I don't know how long it has been there, because it can only be seen if I lift my upper lip to expose the gum.  I only noticed it yesterday when I was checking to see if I had food in my teeth. It does not hurt. It does not blanch. The skin does not appear to be broken or damaged. I was diagnosed 8 years ago with SSM, Stage 1, Clark level 2, posterior upper arm. I doubt the two are related, but is it possible to have, at some point, SSM and oral melanoma? Also, can my dermatologist biopsy this? I wanted to post a pic of it, but I don't know how? I would appreciate any input you can give since this happens to be a holiday weekend. Thank you in advance. 

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/2/2014 - 8:00am
Replies by: Anonymous, arthurjedi007

My mother has been diagnoes with melanoma recently. Can anyone advice on diet and lifestyle that can help in fighting this beast?

Stay blessed!

God bless you

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delora's picture
Replies 4
Last reply 8/31/2014 - 12:08pm
Replies by: BrianP, Brendan, Nal64

Hi All,

I am currently Stage IV in a clinical trial with Ippy and a clinical trial drug.  I love my Dr.  She is the absolute best.  However, the nurse in charge of my clinial trial is a disaster.  She has made some major mistakes, put in for incorrect blood tests, delayed my treatment on two occasions, sent me to the wrong Dr for my week off treatment bloodwork, and a few other things.

For my last two appointments, she has stayed in the room.  My "feeling" is that she is worried I will tell the Dr.  She apologizes over and over every time the Dr leaves the room.  At first is was no big deal, I just figured we all make mistakes, but too many apologies makes me feel really uncomfortable.  I am unsure of what to do.  I want the focus to be on treatment, not on complaints.  However, I am really uncomfortable with her and, honestly, I am very stressed when she stays in the room.

 

I just don't want to say something that could potentially upset my Dr or her.  I think the trial only lasts six more weeks.  Part of me just thinks I should ride it out.  

I know this isn't the typical stuff we talk about on here.  I just don't know what to do.  I don't usually have experiences like this.

Any thoughts or similar experiences?  From my understanding, she is the only person who works with folks in the clinical trials.  

Delora

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JerryfromFauq's picture
Replies 1
Last reply 8/30/2014 - 11:28am
Replies by: Resilient4Life

What is pharmacogenomics?
Pharmacogenomics is the study of how genes affect a person’s response to drugs. This relatively new field combines pharmacology (the science of drugs) and genomics (the study of genes and their functions) to develop effective, safe medications and doses that will be tailored to a person’s genetic makeup.
Many drugs that are currently available are “one size fits all,” but they don’t work the same way for everyone. It can be difficult to predict who will benefit from a medication, who will not respond at all, and who will experience negative side effects (called adverse drug reactions). Adverse drug reactions are a significant cause of hospitalizations and deaths in the United States. With the knowledge gained from the Human Genome Project, researchers are learning how inherited differences in genes affect the body’s response to medications. These genetic differences will be used to predict whether a medication will be effective for a particular person and to help prevent adverse drug reactions.
The field of pharmacogenomics is still in its infancy. Its use is currently quite limited, but new approaches are under study in clinical trials. In the future, pharmacogenomics will allow the development of tailored drugs to treat a wide range of health problems, including cardiovascular disease, Alzheimer disease, cancer, HIV/AIDS, and asthma.
http://ghr.nlm.nih.gov/handbook/genomicresearch/pharmacogenomics

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

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Mostly for Gsamsa and Brian P, as well as any of you who are interested: After we had talked about pneumonitis.... I was reading, then posting, an article that actually included some data about its occurrence with anti-PD1 therapy!  The article is a little older but does address some of the latest combo therapy.  And...because it is a compilation of data from a year ago....it breaks down the beginning results, with commentary re side effects, and some pretty cool, straight forward explanations of how it all works.

For what it's worth:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/08/combination-therapies-for-melanoma.html

Wishing you all my best!  Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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cavsnut's picture
Replies 7
Last reply 9/3/2014 - 11:16pm

I got my results back from my SLNB today and one of the lymph nodes out of the four taken out was positive.. believe it was .9mm..So with that said opinions on getting the superficial nodes removed or going with ultrasound monitoring of the nodes until anything else shows up? I'm really leaning on not having anymore nodes removed at this time as I work standing for 10/12 hours a day. I know the side effects of having more lymph nodes removed from the groin is extemely high and with it showing up in only one of the four removed believe I'll play the 80% odds of it not being in anymore...thoughts?

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arthurjedi007's picture
Replies 9
Last reply 9/5/2014 - 11:28am

I'm trying to decide whether I should have surgery or radiation or maybe both. Any thoughts would be appreciated.

I have 3 tumors in my skull or calvarium as the report says. The largest is growing and pressing on the outer layer of my brain and displacing it. It is 3.65 cm x 2.3 cm x 2.8 cm if I read this report right. There is also a lump on my head there that went down a lot with the PD1 then increased at the time of the MRI and is now slowly going back down some. It is in the posterior parietal bone to the right of the midline.

The 2nd tumor is 3 cm but is less expansile than it was in Feb. It is in the left frontal bone along the high convexity.

The 3rd is somewhat less expansile than it was in Feb but does appear to involve the underlying dura. It is in the high left parietal. Doesn't say its size.

So the Drs were talking radiation for the 1st one but now maybe surgery instead. With pd1 for the other 2.

I also have a couple dozen other tumors but these are the only ones in my head that I know of. They will be doing radiation again to my spine soon except this is further down where they haven't done before (t12 and l2).

If they do surgery I was wondering what that would be like? What would this plate they mentioned be like? How long would it take to recover from the surgery? Would it be done between the 3 week PD1 cycle or would I miss some PD1? What am I not asking that I should be cause I just don't know what to ask?

Thanks for any thoughts on this.

Artie

 

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casagrayson's picture
Replies 2
Last reply 9/1/2014 - 6:58pm
Replies by: jahendry12, Fen

One of my dear friends has been battling Stage IV melanoma since March 2013.  As so many others, he had a melanoma removed years ago and then completely forgot about it.  He went to the ER last March for kidney stones, and the scans picked up tumors in his abdomen.  He tried everything,  starting with biochemo at MDA and finally got on the Anti-PD1 trial.  Unfortunately, the melanoma was just too aggressive.  After three brain surgeries in less than four months, his family chose to move him to hospice ten days ago.  He lost his battle early this morning.

RIP, Trey.  

Strength and Courage,

Susan

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Ashley's picture
Replies 3
Last reply 8/30/2014 - 2:09pm
Replies by: Bubbles, kylez, DonnaK

My dad just started this trial and was curious if anyone out there is on it and if you could tell me your experience so far?  He's on the last cohort with the max tolerated dose.  We're just praying for a miracle.

Thanks!

Ashley

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vlmd1986's picture
Replies 2
Last reply 8/29/2014 - 11:09pm

Hi!

I'm scheduled for a left groin CLND tomorrow, and my doctor said he's going to do a sartorius muscle flap. He said I wouldn't really have any limitations afterward from that, but I forgot to ask specifically about skiing!!

Have any of y'all had this done and then gone skiing afterward? (Not like the next week, but anytime after the surgery, haha.)

Thanks!

V

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Anonymous's picture
Replies 7
Last reply 9/2/2014 - 3:18pm

My husband will start pembrolizumab next week, after having had Yervoy with no results, and disease progression during the Yervoy treatment period.  What I'm looking for is some GOOD news from those folks who have had (blessedly) good results with the pembrolizumab.  Let me hear it!

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Brigitte's picture
Replies 10
Last reply 8/30/2014 - 10:31pm

I had a conseratvie excision on my back. Yesterday I got the stiches out, and was told I didn't have to do any wound care. The area still feels raw and I was wondering if there is anything I can do to help it heal faster? I dont really want to put valsine on it. 

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cavsnut's picture
Replies 3
Last reply 9/3/2014 - 11:11pm
Replies by: cavsnut, Bubbles, SABKLYN

I developed a seroma from what I've researched in one of my groin excisions from surgery last Tuesday where 2 lymph nodes were removed. Is this something I should contact my doctor about, or will it go away eventually? It's about the size of a Ping pong ball btw

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eturner's picture
Replies 6
Last reply 8/28/2014 - 1:28pm
Replies by: eturner, arthurjedi007, kalisama, Anonymous

Hi, I have a question. My husband has stage 4 melanoma in spine, hips and pelvis and a few mets on skull as well and maybe two mets on his right lung. He is taking the Braf combo drug right now (5 months in) Before the braf drug he was in a huge amount of pain in hips and back area..... After starting the braf drug no pain (mets still in bones and lung but growth is at a standstill). About three weeeks ago he stared having pain in hip down left leg into calf and ankle, he has also started taking the morphine he was given before staring the braf drug ( during the past 5 months he has needed no pain medication). Even on the morphine when he goes to bed he can't get comfortable and cant get to sleep. On Friday he had a  CT scan of hips and spine area.... It found no growth in bones..... WHAT COULD BE THE PAIN?? This Dr at UVA said they will now do an MRI on Friday!! What will the MRI be looking for?? Any advice or help would really be appreciated!! 

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