Off-Topic Forum

The MPIP Off-Topic Forum is a community bulletin board that provides the melanoma community with a safe space to share experiences and to give and find support from others who can relate to having or caring for someone with a melanoma diagnosis. Please note: if you have an urgent question about melanoma to ask the community, visit the main MPIP Forum.

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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I mean if he was still in office we would be busy bombing Syria, Somalia, North Korea and Iran. The Defense industry would be booming, unemployment would be down and Dick Cheny might crack a smile for the first time in 20 years. We are wasting all these bullets shooting each other here at home. Wouldn't it be more fun to use them against the Axis of Evil? No I don't mean the Republican Congress, even though its tempting to include them as members of the Axis. :)  

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jag's picture
Replies 10
Last reply 2/22/2013 - 7:56am

Carole K suckered me into participating in the "all new and improved chat feature" that has has been set up w/this website.  The only problem is that some people came in and dominated the whole room and ignore the patients (reason when I first signed in under a pseudonym I found it to be completely useless).  Just a thought, rather than being a whiner, could the computer people set up "after hours" for chat with no moderator where anything goes? then earlier new patients could get the information and support they need, later on, old timers retirees, housewives and the like could chat and catch up if they so desire.  To confess I realized that I was dominating after a few minutes of catching up with people I hadn't contacted in a while and newbies who didn't feel comfortable weren't responding,  since this website is set up for support of patients, shouldn't that be a priority?

Not trying to start a fight here, will not respond if you are trying to wind this into a big debate.  Just trying to help.

Insert Generic Inspirational Motto Here

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Bonnie Lea's picture
Replies 10
Last reply 3/2/2013 - 11:00pm

Dear Fellow classmates:


Thankyou Jag for writing me.  I was unaware that the MPIP OTBB was up and running.  Last time I peeked in it was deader than a stricken tree.  However, I have been not so up lately.  Too much still going on, although I have managed to drop one of the oncologists from my herd of doctors.  Breast one, has decided if I could find a doctor who would perform yearly manual exams on my nonexcistent chest, I need not go see her....I did..... whahoo. 

I had hoped also to finish with the kidney cancer guy, as it has been over a year since my kidney surgery....but alas apparently the last two ultra sounds of the abdomen in particular the part of kidney that escaped surgery...shows changes, so one more ultra sound and blood, and urine, and chest xray will be done in August.  to see what is happening.  That appt was a let down.  Hubs and I thought yeahhhh another doc bites the floor (cant say dust cos he is a nice YOUNG guy)

I have not seen my melanoma guy in ages, and feel very very pissed (sorry John)  about that.  Since my dear dermatologist retired, the guy who took over when seeing me says  so whats you have to show me now?  Never has done a whole skin check, onlly what Bob and I point out.  So  am waiting patiently to find out from Princess Margaret crew what to do?  Two past concerns over skin issues have been a neurofibroma what ever that is.  The PMH have always cancelled my clinic appts (which are 6 months)  as doctor so and so will be unav ailaable.  I should complain to our Melanoma of Canada thingy but he is on that board!! hahah. 

I had to have another biopsy on my eye as there is tons of black goop growing inside.  It came back negative.  for what???  and then what is it???  So not only have I bloated out and look ridiculous (shape wise) but my droopy red flopping eyelid disgusts me.

This is not a pleasant chat.

I had another shunt put in in June, and promptly fell flat on my face, splitting my lip, blackening my eye, maybe displacing my jaw.  So now I walk soooo carefully I am almost like a 90 year old.    BUT we are going camping.  From that fall, I also broke two ribs last year, and even though I did not go seek medical aid, it was hell in Grundy.  I mean how fast can one jump out of bed, when startled by snuffling sounds outside?  this year will be great.  Bob had a major problem lasst spring....some of you know about it, but since he had the defibulator/pacemaker installed (eyes heavenward)  he has been ok.  But def a changed man.  Cannot do half of what he used to do.  with this snow of the other day, our neighbour did our driveway the first time, Bob came home from work, did the next round, tried to get the truck in the drivway, but got stuck in a 3 foot drift.  He and I shovelled the truck out

now that HURT hahah but call of duty and all.


Um DD is still married.....  John soon Jed will be walking about free proofing is just the beginning.  How are your dear King Charles?  Bill, glad to see you are still chasing the ladies, and Yoop thankyou! and everyone else.


Love you all

Bonnie Lea

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casagrayson's picture
Replies 2
Last reply 3/2/2013 - 10:52pm
Replies by: JerryfromFauq, Janner

My husband is the melanoma patient.  He's had two primaries on his head (one on his scalp, the other on his jawline).  Both were Stage 1.  In the past six months, he has had many precancerous lesions frozen, plus three basal cell cancers (all requiring Mohs surgery and two considered abnormal basal cell) and one squamous cell.  Last week he had three more biopsies.  We've switched dermatologists because we didn't think his previous one was very thorough in body checks, plus he wouldn't answer questions to our satisfaction.   Here's the latest issue.  Last week I pointed out a red irritated spot on my husband's neck.  I told the derm that this spot never goes away and flares up from time to time.  Not long ago it almost got the appearance of a boil, but then went away (leaving just the red mark for the derm to see).  The derm just acted like it was a little irritation and not to worry.  Well, today the "boil" is back.  Does melanoma ever present this way?  I guess I'm specifically worried about a melanoma in transit or some sort of metasticizing, especially since it is on his neck near his lymph glands.  My husband is so tired of being poked, prodded, and being worried about biopsies that I don't think I'm going to be able to convince him to go back to the doctor while the "boil" is present to have him look at it.  (He will say "the doc didn't seem concerned".  But as one who has been through years of struggling to get diagnosed with a rare disease ... Cushing's ... I know that we have to be our own advocates with these doctors.)  

Am I just working myself into a frenzy for no reason?

Strength and Courage,


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POW's picture
Replies 2
Last reply 2/7/2013 - 9:33pm
Replies by: BillMFl, jag

A week or so ago I shared with you that I had finally realized that I was depressed and that depression was seriously affecting my quality of life and my abililty to earn a living. The advice and support that I received from all of you really helped me. I am now pleased to report that the depression is lifting and things are getting better. 

I think the most important change was to not only recognize that I was depressed, but to stop trying to bull my way through it. I think my initial response to the diagnosis of depression was, "Yeah. OK. I'm depressed. So what? Keep going!" That was just making things worse. And then I would get down on myself even more for my continued lack of productivitity. 

What helped was to take the depression seriously and "treat" it. I decided to make getting exercise and having fun become my top priority. Hence, I did a lot of gardening and permitted myself to take a nap after lunch without guilt (a "curative rest" you might say). I did do a few hours of work each day, but as soon as I realized that I was having to put a gun to my head to keep working, I stopped for the day. Again, NO GUILT allowed!

I started telling myself that I am sick much like my brother (the melanoma patient) is sick. Would I expect him to push and push himself to be productive while he is going through his troubles? Of course not. I would cut him some slack, wouldn't I? So I should cut myself some slack, too. 

By doing little pieces at a time, I finally finished one of the projects I was working on. The finished product has been posted to the Internet, the client is happy, and I'm feeling proud of myself. Yes, it took a few weeks longer than I expected it to, but so what? There aren't exactly ravening hordes of people demaning access to this new computer-based training course. The urgency was in my head. 

I'm cutting myself some slack in other ways, too. If I feel like cooking dinner, I do. If I don't feel like cooking we eat leftovers or get takeout. My husband is perfectly fine with that. As a consquence of this more relaxed attitude, I find myself cooking a decent dinner more often than I was. Again, the pressure and expectations were coming from inside myself. I did get myself to pay the most important bills, but the ones that were not urgent went back in the "To Do" file because I thought it would be healthier for me to take a nap at that moment. NO GUILT.

I won't consider myself "cured" of depression until I get back to my normal level of energy and productivity. I don't know how long that will take-- weeks? months? But I am certainly feeling better than I was. I am getting more accomplished than I was (albeit in little bits and pieces). And my garden is certainly looking better than it was! smiley

Thanks again to all of you who helped me with this problem!

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MarieM's picture
Replies 12
Last reply 3/2/2013 - 3:14pm
Replies by: JerryfromFauq, NYKaren, jag, BillMFl, MarieM, Anonymous, POW

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MarieM's picture
Replies 0

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MarieM's picture
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bioguy's picture
Replies 1
Last reply 2/5/2013 - 10:34am
Replies by: kbc123

Hi All.  I'm new to the site.  I'm a 40 y/o white male with fair skin.  I saw my primary care doc for a lesions on my chest.  It's certainly atypical for melanoma presentation, but it has enlarged over the past 18 months, and started to appear dry and bleed in spots.  It appears like a slightly raised, reddish, mole-like.  I didn't pay it much attention at first, but after my primary care suggested a see a dermatologist for a biopsy, I'm really nervous.  I didn't sleep at all last night, so on top of the anxiety, I'm exhausted. 

Any advice from you guys?  I've always thought that by the time the mole/lesion is bleeding that it's quite advanced and there's not much that can be done.  Any help you all can give would be so greatly appreciated. 


Thanks so much. 

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I'm having mine today. Did you have yours recently? Soon? Don't forget!

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BillMFl's picture
Replies 8
Last reply 2/11/2013 - 8:41am
Replies by: Bonnie Lea, Janner, BillMFl, POW

I'm having mine today. Did you have yours recently? Soon? Don't forget!

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Swanee's picture
Replies 1
Last reply 1/31/2013 - 11:46pm
Replies by: Swanee

Today I made the discovery of this BB and from what I gather, it is an informal place to come and say whatever you wish and sharing one's feelings, whatever they may be!   I am going through and reading old posts and trying to get a feel for how everyone was using this BB and the type of topics they would talk about.  Apparently, most users have dropped off and it is not being utilized quite like it use to!  I discovered a post from dian in spokane from last year at this time and she was wishing Charlie a happy birthday.   I love Charlie's posts and his to the point answers, he always makes sense to me and has helped me out of my own confusion many times, since being diagnosed 3 years ago with stage IV.   I see from other posters, he is well loved, respected and is a bit of a icon on mpip!

I think my husband shares the same birthday and I would just like to know if that is I can additionally raise a glass to Charlie too!

Cheers Charlie!


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POW's picture
Replies 18
Last reply 2/1/2013 - 8:14pm
Replies by: jag, yoop, POW, BillMFl, Janner, Nancylee

The human psyche is really weird, isn't it? 

My brother in Florida has been a hospice in-patient for almost 2 weeks now. His neurological symptoms have been eased by dexamethazone and he is not in pain. The hospice is a very good one-- the nurses are kind and attentive and my brother is doing pretty well and receiving a lot of visitors.

I returned from Florida to Atlanta 3 weeks ago (just before he entered hospice) and I have been dead in the water ever since. I have been a freelancer for 10 years and suddenly I find myself unable to do any work. I just can't seem to concentrate and I end up taking naps all the time (as a freelancer, I have never allowed myself to take naps!). I don't feel like grocery shopping or cooking so we've been eating a lot of take-out. I just seem to diddle around all day and/or get unreasonably, obsessively angry if some medical person does not return my phone call by the end of the day. At this point, my clients are starting to get restive about my projects. I resolve every morning to sit myself down and do some work -- at least a couple of hours-- but somehow it doesn't happen. 

So I finally went to a caregiver/grief counselor yesterday and asked, "What the heck is wrong with me?! My brother is getting the best care he can get at this time, there are no medical dragons I need to slay any more. Why can't I get my life back on track?" She said I was depressed. Depressed?! Me?! Who'd a thunk?

I suspect that you will say, "Of course you're depressed. Under the circumstances, who wouldn't be?" But I have been depressed once or twice before in my life and it didn't feel this way. Also, I have known intellectually for several months that my brother would probably not survive this illness. I have accepted that fact intellectually. So I shouldn't be depressed about it, right? Wrong.

After talking with the therapist, I now understand that the emotional half of my brain has absolutely NOT accepted what's going on. I need to cry more. I need to paint more. I need to be gentle with myself and stop criticizing myself for my preceived "laziness". But I also need to take little baby steps to try to get my life back on track. Don't try to shop for a week's groceries, just try to get something for dinner tonight. Don't try to make up for lost time on my work projects, but do one little piece of one project each day. Do something physical each day like going for a walk or working in my garden (mild weather is one of the joys of living in Atlanta). Send my brother a funny greeting card a couple of times a week instead of worrying about him all the time.

So I guess my advice to the rest of you caregivers is to not be tricked by the analytical/intellectual part of your brain. ASSUME you are depressed, even if it doesn't seem that way. And think about what steps you can take to be kind to yourself and to deal with your depression. Allow yourself to cry. Allow yourself to rage. And allow yourself to rediscover some pleasures in life. This is a rough road we are walking-- ignoring or denying that fact will just make things worse. 

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I had Melanoma Stage 0 in 2012 so am now at higher risk for melanoma I am told. I also have very, very fair skin, blue eyes, etc... My father had all types of skin cancers and was treated and cured. I also have breast cancer stage 1 and there is a strong link between the two so i want to be monitored by a good doctor in the NYC area so i can hopefully catch any other melanomas at stage 0.

I am not sure which hospitals are best at monitoring for melanoma high risk patients in the NYC area. I tried getting in to sloan to see a top doc there for monitoring but apparently i do not qualify becuase i only have stage 0. i don't quite understand this because i would think it is important to catch it early, but i don't seem to be able to find doctors who specialize in melanoma who are willing to monitor stage 0 patients. The dermatologist i am seeing does not seem to be the best and does not really specialize in melanoma. In fact, he indicated that the melanoma stage 0 was nothing on several exams until i requested that it be removed and tested.

So far, i have an appointment at molesafe at NYU which i heard is the only one in the nation, but i was wondering if anyone can recommend a doctor/hospital that is considered good for melanoma monitoring high risk patients in the ny area. Thank you. 

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