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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JoanR's picture
Replies 4
Last reply 2/17/2011 - 8:56am
Replies by: Sharyn, Anonymous, Janner

If you are reading this Sharyn, please know we are all thinking about you and hoping your surgery went well.   If Jim is reading this, perhaps you can let us know about Sharyn's condition, and also the address of the hospital where Sharyn is if in fact she will have a long stay..Cheers Joan

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My husband is stage 4 recurrent melanoma.  We tried IL2 but he has additional sites since.  He is BRAF negative and currently has mets on skin and pancreas.  Our doctor recommended surgery but now says they couldn't get to the pancreas nodules easily and isn't confident surgery could remove everything.  We did the Ipi clinical trial before the recurrence, but our doctor now suggests going on Ipi compassionate.  Does anyone have other suggestions?  Scans coming up this week and next and we are supposed to start the Ipi next Wednesday.

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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WalterA's picture
Replies 4
Last reply 2/17/2011 - 12:15am
Replies by: LynnLuc, Rocklove, lhaley, King

The news from my CT scan and oncologist today were not good. Two and a half years after it spread to my lungs, it now has shown up in my liver. I'll go back on Wednesday for another scan, a full-body PET. The oncologist wants to find out if the lesion on my liver is the only one, or if there are others. So we don't know what the treatment protocol will be. If there's just the one lesion, we might try radiofrequency ablation. If there is more than one, we'll have to try something else.

"Thus I am!" -- Guido in "The Ring and The Book "One day is worth two tomorrows." -- Benjamin Franklin "If it ain't baseball, who cares?" -- Me

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WalterA's picture
Replies 3
Last reply 2/16/2011 - 11:11pm

On Friday morning I'm going to have radiofrequency ablation to attack the lesion that was picked up on my scans Monday. The PET scan today (Wednesday) didn't pick up anything else, so my surgeon/oncologist and the doctor who actually will do the procedure are confident that we're on the right track.

Yep, Linda, this is Walter who was from Charleston but now is in Lexington. I'm still going to Charleston for my treatment.

"Thus I am!" -- Guido in "The Ring and The Book "One day is worth two tomorrows." -- Benjamin Franklin "If it ain't baseball, who cares?" -- Me

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Carmon in NM's picture
Replies 5
Last reply 2/16/2011 - 8:45pm

I just got through seeing my onc after having a full body CT scan and brain MRI this morning and that pesky tumor on my adrenal gland has shrunk some more! It started out at 2.3 cm and now after four infusions it is down to 0.72 cm! No new mets in my brain or anywhere else! There is a spot on my lung and a couple of anomalies in my brain that they have been watching but nothing that has changed or shows any activity.

I asked if they could tell me how the others are doing on this drug trial and the protocol nurse said that everyone has responded just as well and that they are very excited about it. I'm sitting and waiting to go in for my 5 hour drug infusion so I don't have my notes with me but I'll post the number of this drug trial here tonight or tomorrow in case anyone wants to look into it. It's a combination of carboplatin, carbotaxil and temodar.

We be doing a happy dance here in New Mexico! Carmon

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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himynameiskevin's picture
Replies 4
Last reply 2/16/2011 - 7:29pm

It's been a month since I last posted an update and I've got a few hours until my scans, so I figured I'd say hello from the library here at the NIH. Not much has changed since my last post, I've been working a lot, going on bike rides a few times a week, and I actually went skydiving for the first time a couple weeks ago. It was pretty fun. And that's about it. As far as the medical stuff goes, I'm back here for my 2nd monthly-scans; CT scans in a couple hours and an MRI tonight. I'll talk to the doctors tomorrow and see what the have to say. Hopefully the scans show something that results in good news. If so, I'll be sure post it here. Well, I hope you're all doing good and staying postive. I'll talk to you soon.

-Kevin

 

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Just a reminder that UNC-Chapel Hill School of Medicine is hosting a Melanoma Patient Day next Wednesday, Feb. 23, 2011.  The event will go from 12:30-4:30pm and will be held in the William and Ida Friday Center for Continuing Education.  Use the following link to see the agenda, brochure, or to register:

http://www.melanoma.org/get-involved/unc-chapel-hill-melanoma-patient-day 

Contact Shelby Moneer at smoneer@melanoma.org or call (800) 673-1290 for additional information or to register. 

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vivian's picture
Replies 3
Last reply 2/16/2011 - 2:52pm
Replies by: skysar, lhaley, Suzan AB

Hey Linda,

I am thinking of you today as you have your scans and praying everything is perfect!

Hugs,

Vivian

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Emrina's picture
Replies 2
Last reply 2/16/2011 - 9:56am
Replies by: Emrina, lhaley

Hallo to everybody from South Africa.  My husband has been diagnosed with stage IV Metastatic Melanoma.  Melanoma has spread to his lymph nodes and both lungs.  We were given 3 options.  No treatment, DTIC or the Clinical Trail.  Went for a 2nd opinion, prognosis the same.  He is currently taking part in the OncoVex GM-SCF trail and has received 2 injections.  Still 22 more to go.  This clinical trail Phase III ended 31 January 2011.  Is there anybody out there that has taken part in this trail or in currently still taking part.  Would love to hear from you! 

Regards

Emrina

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With reference to the recent discussion? on alternative or what ever....I am asking Jake what he did and where did he go for treatment from when he was diagnosed to when he found us here?  I am trying to see did you do alternative stuff and if so what was it.  As I see you advanced from I think stage one to stage 3 and it is not clear to me other than your stage 3 was a node.  so from when you first were dx'd in I think 2007 till say fall of 2010 what treatment did you go on?

How did you know that your node was one of the evil ones.   I have the odd one that swells up but just waiting for it to shrink and it does, always does give me a panic,  people here are great, in helping me gimp along and I adhere to their advice.  right from when I lost my eyelid, and still all the on going things.  So I wonder if alternative and I still do not know what this is.  would diet alone have saved my eyelid?  would diet alone not made me (only one in my famiy) not lose both breasts to breast cancer (not melanoma related, but I swear my body knows how to do nasty things now)  I never sunbathed, I never went to tanning beds, heck I shunned the sun  yet I still developed a 4mm thick mel on the back of my neck, thank God I am ok.  No SNB was done, as that was not available here at that time. 

 

So what exactly in your words made simple for me, is alternative.  certainly not accupuncture, accupressure, gobbling up green veggies 24/7  I eat healthy yes,I limit my sugar and salt, alcohol in moderation, I have developed osteoporosis, I have NPH and from that I now enjoy having a shunt installed in my brain with a tube running down my neck to my tummy cauysing me to feel and look  HUGE and I imagine CSF dripping into my tummy making me even fatter I bet.

Just a a thought.   The people here who responded severly have been through hell and are attempting to crawl back, something I think you nor I have not even had to think about. 

Shun me if you wish.....right now, I am too darn tired.  Yes I take my supplements, I take my vit.  I take my meds to stop all weirdo things from happening, and I am always aware of melanoma lurking about maybe never to show its ugly face, again, but maybe it will.  I see so many doctors from eye cancer doctors, to eyelid (hence forth known to everyone here as  EARLID) to boobless doctors, to lady parts doctors, to chiropractors, to Massasage therapsists, even to myu dear little pedicure girl.

 

Bonnie Lea

Just Keep on Hanging In

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Well it was brought to my attention that Surgery is truly not an option. The doctor concluded that the nodule to be VAT'ed for biospy is too close to the center of the lung, very close to a major vien, so he ordered us back to UCSF for a needle biopsy. We have already received a call from UCSF to get that scheduled. So if it proves to be melanoma then we will discuss treatment options...I guess! 

I don't know how you old timers continue to march on, but I appreciate that you do and that you stay and post...thank you!

Holy Smokers...So I tried to get surgery, but it is a no go...I guess.  I need advise...

Suzan AB

Stage IV

 

Presently...One Day At A Time.

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NicOz's picture
Replies 19
Last reply 2/16/2011 - 12:34am

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Well, I’ve decided it’s time to clear up what are some obvious misconceptions about me. Obviously it's going to be long as I have to spell it out carefully so as not to be further misunderstood :P

Many have made the assumption that I am anti-alternative therapy. I guess that depends on what one defines as ‘alternative therapy’. It seems to be anything that doesn’t involve convention treatment according to the definition of most. Apparently I have  a very different idea, though I'm sure I'm not the lone ranger... maybe.

Personally, I do not believe that alternative therapy includes supplements. Tumeric. Vit D. Astragalus and the like. In fact, the only thing that can concern me at times with regard to supplements is when people do not check that they are contraindicated for a medication they may be taking. For example- astragalus should not be taken when one is required to use decadron. The reason I KNOW this is because I took the time to look into it... which I would NOT have done, had I not been taking a supplement in which astragalus were included. (And you know me- I wouldn’t be taking astragalus if there wasn’t some evidence it actually DOES have an effect on the immune system, so it is also not the case that anything which could be considered a “natural” remedy is immediately discounted by me)

Meditation, yoga, massage. Nothing alternative there as far as I can see. People all over the world (and without cancer) practice these things because it makes them feel better. Alternative? Hardly. No, I don’t do those things. Not because I think them alternative, but because while some people obviously enjoy them, I don’t. Hair cuts make me feel good, though, and lots of people have those frequently, but I wouldn’t say I’m being alternative because I do.

Macrobiotic diets? Exercise? Drinking WATER. Juicing their own vege’s? People without cancer do that too, because of the health benefits. Once again? NOT alternative. The suggest that it IS, I find incredibly strange. I drink water *gasp* AND juice my own vege’s too- doesn’t make me alternative. It doesn’t make doing those things alternative therapies, though.

Clinics and therapies which claim to treat cancer without any evidence, and many of these have been around for many years so would have been proven one way or the other if the practitioners were interested in providing proof for their therapies- alternative therapy, IMO. Particularly when they are based on cellular knowledge from 50 years ago, and yet are still remaining providing the same tired old claims about the same tired old therapies, and using testimonials with no scientific evidence to support their claims. Some of these have been shown to be worse for the patient (QOL or physically) than doing nothing, so that is why I get somewhat irritated when they are suggested (particularly by people who haven’t undergone the regimen themselves). If I weren’t concerned they may not actually harm some patients, I’d say “knock yourselves out and spend all the money you want”. Trust me on that.

One other thing I am sceptical about, are claims re: “mets” (usually the lung) which have not been biopsied, and the resulting claims that someone’s lifestyle change has “cured them”. I cannot count the amount of times people have posted concerning lung modules, sure that it’s their melanoma progressing, only to find it has been discovered/confirmed to an infection, or scar tissue from a previous infection. So without a histological diagnosis, a ‘lung nodule’ which goes away or remains stable is not necessary something that has been ‘cured’. And that is not my personal opinion. That is a fact.

And lastly, the assumption that people make that it is a lifestyle change or supplement that is the reason they have not progressed. I find that somewhat assumptive, particularly when their lack of progression is well inside the norm for all patients in the same situation, and more particularly when people have undergone surgery and/or used conventional medicine to reach NED status. It confuses me as to how someone has come to the conclusion that THEY are the reason they have not progressed, but it’s far from the first time in my life that I’ve been confused. And I guess what I find frustrating relates to other people who are at a different point in their disease can be made to feel like they are to blame for having a different result, rather than mel being to blame like it deserves to be, and I don’t think people take this into consideration enough.

So please, stop with the mental shortcuts. You’re doing yourselves a disservice by throwing everything that doesn’t involve a medication requiring a prescription under the umbrella of “alternative”, and assuming anyone who takes issue with certain things I have mentioned, as being critical and closed minded.

Hopefully this is clear enough to be understood. I know I’m from Australia and I have brain tumours, but really... there are times when I wonder if I speak a language from an entirely different planet, not merely a different country when I see how easily misunderstood what I say can be completely misinterpreted.

So that is my position on this particular issue. Believe it or don't. Attack it or don't. Take it on board, or don't. Either way, I've said what I wanted to say and that's all that really matter to me. But from now on there is no excuse for make assumptions about my belief system, and that's really all I care about :)

Nic (in a VERY zen state since surgery and planning on remaining that way) Hope everyone else is feeling as good!)

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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JakeinNY's picture
Replies 43
Last reply 2/15/2011 - 10:05pm

We all know that there are thousands (maybe millions) of success stories all over the world. Since this site seems to be the largest for melanoma, why not have a section that patients can browse through to give more hope and inspiration. Am I missing something here? If it doesn't exist yet, then we should all demand that it be created.

Do the best you can.

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filbert's picture
Replies 4
Last reply 2/15/2011 - 3:23pm

I originally posted 2 1/2 years ago when I was diagnosed stage 4 melanoma.  I started with chest pains which of course I thought was heart problems . They found however a 6 cm tumor in right lung.  They went to to do a thorachotomy (sp?) then closed me up/aborted it.  They decided it would be too much to take our part of a lung  etc etc.   Oh btw I log on as filbert-name is actually Phil.  Live in SW Washington-Vancouver.

Our son had just undergone oral cancer, lost half his tongue etc etc but it now doing great.   At that point we kne we needed totally professional care so we switched to Providence Cancer Center in Portland...amazing facility.  I've had 2 rounds of IL2 and another trial which got interrrupted because of a new tumor growth.  I just had my 12 week scan out from Ipi.   Both good and bad I guess.   The original tumor in the lung has grown a smidgeon to 6.9 cm and there are several new little growths in the lung area.   I kinda figured there was something going on because of constant back /some stomach pain.  Oncologist says the tumor is pushing on the nerves on the lung wall.  

Sooooooooooooooo long story short he is reviewing tissue saved from a previous tumor harvest to see if I am BRAF mutant (I always wanted to be a mutant!).   If that's a go I will start Braf in about a month. 

They have never found a primary source and since it's internal I can't compare notes on some of the pics of external tumors I see here.   I'm just praying that I have the BRAF gene  (whatever they call it) .  If not I'm at a loss as to what they could do next for me.

I have followed this board for along time but at times I don't "chime in" ...I don't feel like I have anything to offer.  Some of the medical terminology can be overwhelming.   

I've recently doubled my Norco (10-325) to 4 pills a day and about 1600 ibuprofen.   AT times that takes care of the pain...other times I just 'grit my teeth"!

Just wanted to say thanks for all of your ongoing support.  I admire all of you in how you fight in your own individual way.   My son just bought me a Kindle and I love it.   Since so much time is spent in that stupid recliner it helps keep my mind in shape...

 

Phil/Filbert

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lost's picture
Replies 11
Last reply 2/15/2011 - 3:14pm

I was just recently diagnosed...literally hasn't been but a couple of weeks. They say I have stage iv with tumors on my colon, lung, spine, spinal cord, and on my brain. So far I haven't really been given anything towards my next step, just that it will most likely involve surgery, radiation, and chemo.  I'm so in the dark about this and how to deal with this for myself and my family and kids. Can anyone point me in a direction?

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