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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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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dawn dion's picture
Replies 5
Last reply 2/15/2011 - 1:27pm

Good Morning All,

I am rather new to this board and I was told 2 weeks ago that I am stage IV.  I posted the other day that I tested positive for B-RAF.  Wooo Hooo, I guess.  I have been doing a lot of reading on this and while I know this offers hope to a lot of us and I am glad that I can be on the boat - if you have to be on one,  for someone to say you can be NED for 8 months kind of ticks me off.    I go back to Dr. on Thursday to discuss the "next step".  

Anyway that being said I would like to pose a question to everyone out there.   Have any of you ever thought of  changing your life styles to going RAW?  Here is why I ask - I know three individuals who have no NED from Melenoma, Hodgkins Lymphoma and Breast Cancer all Stage IV, by doing this.   Now I know that the Drs. out there do not believe in this and I have not completely ruled out Modern Medicine, but my feeling on it is that everything I have been told and done so far has been a "lie".    I really feel let down by everyone involved in my "healthcare".    Some if not most of you may not share in my feelings but I just feel the need to take this more into my own hands.   Because frankly I really feel like the control is being taken away from me.  

While I know RAW is not a easy transisition from the everyday American diet - trust me I have been trying it for three days now.  I do know that from just that short period of time my allergies that I battle daily as well as my mental state seem to be much better.   I was just wondering if there is anyone out there who has attempted this?  I plan to do it regardless of what my Drs. think or say, if my point of view what can it hurt.  I have been told that I am stage IV, it can't get much worse than that.  Well maybe it could but I really feel the need to put some control back into my life.

 

 

 

 

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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lhaley's picture
Replies 15
Last reply 2/15/2011 - 1:17pm

Cystoscopy was clear today!!!!  The Doctor was as excited as I was.  It's now been 23 months since the original bladder tumor was found - I do know now that it had been there for many months. Next tumor showed up 4 months later and another surgery.  Just as they decided to do a wide excision my urology oncologist just decided that he knew my quality of life would be impaired with running to the bathroom every 30 min. or so. There was talk about taking the bladder and he decided to take 10 biopsies between and around the 2 tumor sites. All was clear!!!  It's been 18 months that the bladder has been clear. Thank you Dr. Gaston for your insight and care.   He told me he has another patient now with mel in the bladder.

Now I am hoping for next Tuesday's PET/CT to have the same good results!

Linda

Stage IV since 06

lung nodule being watched

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Hi, thanks for many of you answering my email for a systemic treatment for my husband Derek for stgae 4 - what I was really asking but using the wrong word was for an adjuvant treatment (?) - something to do after his lung surgery to prevent another recurrance.  Anyway, I guess I was jumping the gun because although scan results are not in yet, I think we might have just found another local recurrance, this one in his original scar.

 

It really doesn't end, does it.

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jenniperry's picture
Replies 11
Last reply 2/15/2011 - 1:03pm

It's so strange to sit and watch the progression of this disease.  He has continued to decline and is now on oxygen.  He has fluid in his left lung and is starting to have secretions.  Thought we had the nausea and vomiting under control until this morning when it started back only 1 hour after phenergan.  He is on so many medicines for all his symptoms.  He has been up and down the last week.  I never thought he would make it to this week by how he looked last week, but he continues to surprise me.  He was able to get up and spend time with me on my birthday and was up and doing some things on his "list" yesterday.  His eyes are looking glassy and his face is thin. His kidneys are hurting him and his urine is very dark and not much being produced. It's like an emotional roller coaster.  He's up then way down.  I just feel like I don't know how much more I can take.  I'm trying so hard to just cherish every minute he's awake, but find myself constantly looking for clues of how much time he has.  I just don't want to see him suffer and waste away.  Praying for mercy.

Cherish every day you have.

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Carmon in NM's picture
Replies 1
Last reply 2/15/2011 - 9:51am
Replies by: Suzan AB

A friend is driving me to Albuquerque in the wee hours tomorrow for a full body CT and brain MRI to be followed by my 5th chemo infusion. It's going to be a VERY long day with nearly three hours driving each way and five hours for the infusion. We're hoping so much that the good news will continue with no new mets and the one on my adrenal gland continuing to shrink. Fortunately I'll get the scan results tomorrow too so no long wait and wonder.

I hate that I'm heading into this one really tired this time but the winter storms and deep snow just really took a lot out of me this last month so what can you do? At least I know I've only got one more infusion after this one, then surgery to remove the adrenal gland and whatever is left of that pesky tumor! So about a week of feeling really awful to get through and then I'll wake up craving a cheeseburger and fries and know I'm starting the bounce back!

Carmon in NM - stage 4 since 6/10 with brain mets and an adrenal met

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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NicOz's picture
Replies 5
Last reply 2/15/2011 - 9:10am

Now I know it's the wee small hours over there (and you'd better be getting some sleep!), but wanted to post quickly to say I'm thinking of you, and hoping with all I'm worth that your first WBR is as stress free and runs as smoothly as is possible for you... and the entire treatment runs along the same vein :) Take it easy, rest up when you can 'cos you're going to need it, and take some good music in case you get stuck 'just hanging aound' (bloody hospitals :P) Thanks for the lotto numbers (kinda...) and may those little b@stards be zapped into an alternate universe.

Take care,

Nic xxx

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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LHogg's picture
Replies 12
Last reply 2/14/2011 - 7:41pm
Replies by: paul, dawn dion, Anonymous, jag, glewis923, NicOz, Bonnie Lea, Kim K

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Ali's picture
Replies 9
Last reply 2/14/2011 - 6:47pm
Replies by: Vermont_Donna, Ali, TAC, molly, lhaley

I spent a lot of time on this website almost 4 years ago, and appreciated everything I learned.  I thought I knew a lot, but right now I don't even know what stage I am concidered, and what my treatment options will be now.

I was a IIIb, 2.5, ulcerated, three positive lymph nodes.  Interferon tolerated for 9 months.  No problems until this week I had them take off a weird wart looking nodule that came from no where and they called back friday saying it was a metastasis from my origanal melanoma.  It was on the opposite side of my knee, maybe 6 inces away.  I only talked to the dermatologist, and not for long, so I have been going crazy all weekend.  I'm sure I will talk to my oncologist this week, but what am I looking at here?

Is this concidered a satellite lesion?  Would they bump my stage up to IIIc because I had positive lymph nodes (although it was micrometastisis there) and a satellite?  What treatments are appropriate, or could they say it won't be treated?  They wouldn't do interferon again would they?  The derm. mentioned radiation, thoughts?

I just had my last scans in September and because it was my 3 year mark they said I didn't need anymore and they did not expect it come back if it hadn't already.  Wow, I just wasn't prepared for this.  Any insight much appreciated. 

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PeterO's picture
Replies 1
Last reply 2/14/2011 - 3:46pm
Replies by: Tim--MRF

It appears ipi may be at the same crossroads as Avastin vis-a-vis the FDA. What's the latest from MRF on where things may end up with ipi?

http://www.cancernetwork.com/multiple-myeloma/content/article/10165/1703375 

www.theogler.blogspot.com

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Anonymous's picture
Anonymous
Replies 5
Last reply 2/14/2011 - 12:09pm

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                                    Each Walker encouraged to raise at least $50.

 

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COMPLETED PLEDGE SHEET, WAIVER, & DONATIONS:  Due the Day of the Event

 

 

TO REGISTER

 

         Visit:            www.AIMatMelanoma.org

         Click-on:    Participate in a Fundraiser

         Click-on:    AIM for a CURE Melanoma Walk LOGO

         Click-on:    Dallas, TX

 

 

 

 

For additional information, please contact

Jean Schlipmann – Jean@AIMatMelanoma.org 

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EddieM's picture
Replies 3
Last reply 2/14/2011 - 9:45am
Replies by: Carmon in NM, TAC, Anonymous

I have a friend with stage 4 melanoma. Her disease isnt my story to tell, so I wont go into detail about that. But apart from just being here for her when she needs to talk what practical things could I be doing? What have you found helpful? She doesn't like to ask for anything. I know she gets tired and at times has some mobility problems. Maybe there are some things I havent thought of which is why Im asking for people with experience.

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