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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lhaley's picture
Replies 15
Last reply 2/20/2011 - 6:59am

I never thought I would be happy to hear those words, aren't we all looking for clear scans! But I'm thrilled.  One nodule in lung is still 7 mm and the other is 4.5 mm.  No change from last scan (for smaller nodule it's been at least 2 scans).  In the past I've had PET/CT's, this time they did the PET and also a diagnostic ct of the chest, abdomen and pelvic area.  He feels they have more of a baseline now to go on.  Mel specialist says that while last scan he was worried he's not thinking the same thing now since all else is clear and this hasn't changed. No light up at all from it on the PET! Next scan in 3 months!

Meanwhile he was very concerned when he learned that my breast has been pink.  Called in the surgeon that had done my surgery several months ago.  They couldn't feel anything but he talked about always being on the look out for breast cancer. WHAT!!  So, they have ordered a mammagram for the right breast and told me that I have to somehow get through the bilateral mri.  While they don't think there is a problem I can't ignore this.  But for the night I'm going to just sit here smuggly knowing that it's Linda 5, melanoma 0!!

They also checked the liver numbers again, don't have those results yet.   Long day. Left at 7am and walked in the door at 8pm.

Linda

Who knows if I'm NED or not but been stage IV since 06 and doing great!!

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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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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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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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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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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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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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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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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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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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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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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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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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Hi all,

Just wondering if anyone has experienced pain in/around tumour sites as th tumours are shrinking?

My husband is on Mek/PI3k trial that we know has worked ( over 15% shrinkage so far). He recently had to stop taking the drugs so a side effect could clear up and when he started back on the drugs about a week into treatment he started to get aches and pain in the areas the cancer has invaded.

This happened when he first started the drugs months ago and then gradually tapered off as everything shrunk or stopped growing.

Part of us thinks it's all good, the part of us is of course scared.... but i thought i'd reach out and see if anyone else had similar experiences?

 

thanks,

Em

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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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