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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nickmac56's picture
Replies 7
Last reply 6/9/2011 - 8:45am

My wife just had two tumors removed today, one on her stomach and one on her back. That's a total of 6 skin tumors removed (plus two brain tumors). She has two more skin tumors they are holding off on removing (or resecting if you want to get all technical) as potential harvest for a clinical trial using adapative cell therapy, if she can make it that long. She still has three lung tumors. She has added two 4 inch scars and they cut out hunks the size of half a deck of cards. She is amazing, stoic and strong. and tonight resting comfortably with ice packs and taking ibuprofen  - while 3 twentysomething young men and one 54 year old man jump and scream at the Stanley Cup playoffs. 

I've been bombarded with emails over the last two days from well meaning friends and aquaintences asking me if I had seen the announcements about the new melanoma drugs. Of course, if they had read my blog they would have known I knew about it and that she had tried and failed one and the other one she doesn't have the positive mutation. So I copy and past my polite reply. 

All that to say, that the front line of the melanoma battle is often surgery, or tumor management as I call it. As many surgeries as one needs to to get to a time and place where a drug can work. So I salute my wife and all the other people out there battling melanoma with this old fashioned, often unappreciated treatment.

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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boot2aboot's picture
Replies 1
Last reply 6/9/2011 - 6:29am
Replies by: shellebrownies

since i had a reoccurance in the same spot 5 weeks out...i asked that the tumor be genetically tested so more effective treatment could be given...understanding what they test for and matching targeted therapy options were confusing to me...i stumbled upon this paper and, of course it's written by a drug rep, but still informative...

http://www.asco.org/ascov2/Home/Education%20&%20Training/Educational%20Book/PDF%20Files/2011/zds00111000367.PDF

don't back up, don't back down

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ShariC's picture
Replies 17
Last reply 6/8/2011 - 6:06pm

Sorry I've been out.  Remember I had the distended stomach....its Mel.  All over.  "too numerous to count".  Doctor Gonzoles at UCCC said he needed to get the tumor growth under control before Yervoy so he had me do a round of DTIC and Vinplastine and Cistabline.  Did that over the weekend.  Its been a real strange trip.  Honestly at more peace than I thought I would be.  I'm preparing for the worse, my doc is trying everything he can to extend.  He said he's seen worse?!  I don't see how. 

Sorry for such a post...but, I wanted to let you know.  I'll try to update occassionally...hopefully the chemo beats it back a bit and I can get some comfort.  But, it manifested quickly...very quickly...my body just couldn't handle the tumor load its probably had for months..and it just reached a threshold.  Strange.  Strange indeed.  - Love you all - Shari

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/8/2011 - 11:53am
Replies by: Anonymous, Carol Taylor

Hi Carol,

 

I visit MPIP daily and read your posts. I so appreciate your prayers. You give everyone comfort.  I rarely post but I feel compelled to ask for your prayers.

I am having surgery on Thursday & very scared. This is my 3rd surgery in 3 years. I pray that God will guide my surgeons hand & there will be no complications, as well as, obtaining clear margins.

Carol, any prayer you can say for me will be sincerely appreciated.

Thank you for praying for all of us.

Tiffany

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Hi All,

Interesting reading in TIME magazine.  Dr Oz on cover talking about his scare with colon cancer and how he was a "lousy patient" - not following instructions pre-test, cancel/resched follow up tests, anxiety over results, telling family and friends...Although it was not mel, still touched on what we go through and put a sense of "normalcy" to us as patients with our fears.

Also in this issue was a brief commentary on one man's journey through "Scanxiety".  Pretty cool how he describes his experience.

 It is available online.  www.time.com

Have a great day!

Laurie

Do not fear tomorrow, God is already there.

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jean c's picture
Replies 3
Last reply 6/8/2011 - 9:42am

Has anyone been diagnosed with the above, and what did it look like?  My next to little toe is completely light purple under the nail and has been that way for several months.  It hasn't been bumped or anything.  Comments??

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Lisa13's picture
Replies 12
Last reply 6/8/2011 - 7:45am

Yesterday I had the follow-up scan to a previous one I had on April 28th.  I'll be finding out what's going on with the nodules on my lungs as well as any other areas in my body. My CT scan was nervewracking considering just before they pumped me full of iodine, they told me they're taking a good look at my liver!  At that moment, I could feel the anxiety flowing through my veins as quickly as the iodine. Thanks buddy for putting that image in my head!

I've had a really bad stomach these past couple of weeks and my acid reflux and hiatal hernia have kicked in big time. Sometimes my hiatal hernia gives me some breathing problems which of course makes me think of this melanoma growing rapidly in my lungs in the past month. I really hope to God that this is a scare or they tell me there is no change and even better, nothing anywhere else. I don't even know if I'm mentally prepared to hear the words (stage 4) yet and they probably wouldn't either until these nodules got big enough to biopsy. I keep trying to remind myself that my blood work 2 weeks ago was normal, so that has to be a good thing.  I also keep reading peoples stories of their scares and lung nodules being nothing or not growing, etc, etc, but then you come on here and there's terrible news which freaks me out even more.

I've had a few break downs today. I look out the window on this beautiful, sunny, hot day reminded of how much I loved these days. But now, I feel I can't even enjoy the summer with my daughter because I'm petrified of being in the sun because it's the reason I'm here. I hate what is happening and I'm so angry that I'm going through this (even though I'm not alone). I want to know my results so badly, but at the same time, I'm terrified.

I will definately need some wine tonite and probably an ativan before my appointment bright and early.

P.S.  I'm so thankful that all these drugs are becoming available and likely a dozen more to follow. 

Lisa

Many impossible things have been accomplished for those who refuse to quit

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shellebrownies's picture
Replies 21
Last reply 6/8/2011 - 6:25am

Don came home from Mass. General on Thursday afternoon after 8 days in the hospital. He finally had his pain managed properly, thank goodness, albeit with a slew of meds to take (whatever works...). We were told that we needed to keep a special eye out for fevers in the coming week while Don's white blood cell counts were low from the Chemo. 

When the nurse was taking out his IV line, we noticed the area was pink and swollen. She gave Don a heating pack for the road and said it should be fine after that.

It wasn't.

The next afternoon, Don was sporting a temp between 101.7 and 102.3. He was home a whole 24 hours. I called Ellen, Dr. Lawrence's nurse, who told us to go to our local ER for evaluation (Dr. L. is in Chicago for the conference). They got him on a broad spectrum antibiotic right away and admitted him (Should I tell you guys about the hissy I threw when I discovered they were going to put my immuno-compromised husband in a shared room? Or the fit I had on his nurse about making sure he got his medicines on time? She took a half hour just to find us after we got to his new private room, 20 more minutes to locate a bag of saline to hang, and another 20 minutes to get him 2 Tylenol for his fever...I am NOT exaggerating...).

We heard from the doctor from their Infectious Disease department today that Don has a Staph infection, quite possibly from the IV site. We find out tomorrow whether it's MRSA or not. 

Yes, really. I kid you not.

Now they will keep him for at least a couple more days (several more days if it's MRSA) and he will probably have to have IV antibiotics daily for a couple weeks after that at home. 

Un-frickin-believable.

Honestly, how sad is it when I tell you that I was relieved to hear it was only a Staph infection? I mean, with our luck, I was just waiting to hear it was the plague or smallpox or some such thing that hardly anyone gets anymore...

 

Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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emilypen's picture
Replies 9
Last reply 6/7/2011 - 10:48pm

Hi all,

So my husband has been on the PLX 4032 (BRAF inhibitor) trial since the end of March and it's already stopped working. We knew there was a good chance of this as he had been on the P13k/MEK trial before this one and the doctors were'nt sure if that would reduce the efficancy of PLX.

So now we're on to next steps..... pretty sure our choices will be Yervoy ( IPI) , IL-2 or Bio chemo. Wondering what you all think and if you had the choice which one would you do?

My husband is Stage IV since May 2010 and has multiple bone mets, 2 or 3 soft tissue tumours and 1 lung nodule ( 7mm). He's also 39 yrs old, and still working part time....

 

Any way , would love to hear your thoughts...

 

thanks,

Emily

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/7/2011 - 10:35pm

Hi Val,

I've been thinking about how you are doing. I am so saddened by Sharyn leaving us. It breaks my heart.

How are you doing on IPI?

Hoping you are doing well. Please give us an update we care about you.

Jan

 

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Steve in Detroit's picture
Replies 3
Last reply 6/7/2011 - 9:01pm

My ex wife has stage IV mel and was recently put on PLX 4032. The joint pain associated with taking the drug after a few days was difficult to tolerate even with lower doses. Has anyone else experienced this side effect?  If so, how did you manage the pain and was it long lasting? Any feedback would be much appreciated. Thank you! 

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Manubuzzi's picture
Replies 17
Last reply 6/7/2011 - 3:26pm

 

Greetings Everyone,
 
I hope that this message finds everyone well, or at least, on an upswing.  I am sincerely wishing you all well.  With respect to my mother, things haven't been going well.  Last week was great.  Before last week, we had had a difficult time, because she couldn't speak very well, she was confused, she couldn't remember much, and worst of all, she was aware of it.  Then, from one day to the next, she was great, and you could see it in her face that she felt so much better, and she just cried because it was a miracle.  
She remembered everything, she spoke perfectly, she had good mobility, etc.  Sadly, it didn't last long.  Saturday 4/30, we had to admit her into the hospital because she began seizing.  She was stabilized pretty quickly, but she regressed back to her "pre-miracle" state.  Due to the anti-convulsion medicine, she is extremely tired these days.  The doctors performed the necessary tests.  There was no bleeding detected in the Tomography,  and the 3 cerebral tumors are still active.  The blood test showed a low count of red and white blood cells and platelets.  She is really really weak.  Starting the day after the seizures, she was really tired and fatigued with trouble speaking and a bit confused.  We thought that it was all because of the new medication she was taking and that she would get better.  But today, it has been exactly a week that she has been taking the new meds, and each day she's more tired than the day before, she doesn't get out of bed, she sleeps practically all day.  We are completely at a loss.  We don't know if this new symptom is a consequence of the brain tumors advancing, the seizures she had, the anti-seizure medicine, or the other tumor in her liver.  Please, I'd like to know if one of you have had similar situations or if you have any help or advice about her new state.  We are so worried and desperate.
 
Thank you,
 
Manu
Son of patient

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Jamietk's picture
Replies 9
Last reply 6/7/2011 - 11:29am
Replies by: Anonymous, bcl, nicoli, marster37, KatyWI

My friend and coworker was diagnosed with breast cancer last year. She also has a history of basal cell carcinoma and is fair skinned, has light hair, and lots of freckles. On Monday (Melanoma Monday). She got an email from Celsius Tannery explaining the benefits of vitamin D in regards to preventing or preventing a recurrence of breast cancer. They were recommending tanning to help prevent breast cancer recurrence. And, get this, during the month of May, any donations made to them are going straight to their breast cancer research to learn more about the correlation with vitamind D. Of course you have to go in person to make a donation. I agree vitamin D is important. My Surgical Onc at MDA has me on it. But I get it from a pill, not a tanning booth. I am disgusted that they are promoting the use of tanning beds to prevent breast cancer. And get this, her dermatologist is doing the same thing. Her derm told her because she has had breast cancer, it would be in her best interest to tan for 10 minutes, 3 times a week, to help prevent recurrence. So let's trade one cancer for another, right? That's the answer isn't it? And although I disagree with the tanning company, why are they promoting this during Melanoma month. Wouldn't it make more sense to do it during October? Sounds to me like they're also trying to down play melanoma month since all donations in May go towards breast cancer/vitamin D research. How sad to prey on someone with one cancer to sell their business and increase their risk of another cancer.

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Hi everyone. Last week I posted that I had been for my routine checkup at a Skin clinic that has been monitoring me for some 6 years.  The GP found two suspicious moles but he said that he would wait and monitor them and see me again in 3 months and if there had been any changes.

I have been Stage IIIB/C? since 2001 wherein I had a superficial spreading melanoma in situ on my right leg.  There was no regression and the tests were done twice.  Nine months later they found melanoma with a moderate mitotic rate in one of my lymph nodes in my right groin with extracapsulary spread.  They say that a thin melanoma shouldn't spread but it is a bit too coincidental given the area.   I  had radiation treatment for four weeks.  5 years later, this skin clinic GP found a Level 4 Desmoplastic melanoma on my left arm which is a rare type and low mitotic rate and tends to recur in the same spot and not often in the lymph nodes.  He referred me onto the PA Hospital in Brisbane which surgically removed a large chunk out of my arm followed by radiation treament.    At a routine visit to the Princess Alexandra Hospital in Brisbane last week I mentioned the two moles that the GP had found.  Anyway the Registrar called in the top boss and he suggested that my GP remove it at the clinic immediately.  My test results came back today and the mole that was removed on my upper back turned out to be a Level 1 superficial spreading melanoma.   I am so grateful that I told the hospital doctors about these moles.

I have a routine appointment with the hospital at the end of the week and the GP is wanting to do further surgery himself to get better margins on the same day.  I know that it is a very thin melanoma but after my experience 11 years ago with a similar melanoma I am extremely anxious and would prefer to have the hospital take over my care and have at least some chest xrays and also  I wish I could have a sentinal node biopsy to check my lymph nodes.  I don't want to have again the wait and see attitude and lose another lymph node basin after suffering lymphoedema in my right leg with the removal of the nodes in my groin and many infections.

I would appreciate any thoughts that anyone may have.  I know this is a thin melanoma but given my history, I am feeling a little concerned about my care.

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