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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Lisa13's picture
Replies 1
Last reply 4/25/2011 - 1:39pm
Replies by: Sherron

I was diagnosed with Stage 3b earlier this year. I'm leaving today to Montreal to go through the screening process for adjuvent ipi vesus placebo arm. I must admit, I'm still on the fence with 1 month HD interferon, but my oncologist feels this is the best option at this time.  There is lots of positive things about ipi for Stage 4, so I'm hoping (if I get the drug) that they'll be a benefit in keeping a reoccurence away for awhile.  Has this option been recommended by anyone else's oncologist over interferon??  

I hope that this trial is a great success so that it gives us stage 3 people more options and hope.

 

Keep the faith,

Lisa

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

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Newmom's picture
Replies 13
Last reply 4/25/2011 - 1:16pm
Replies by: Janner, Newmom, lhaley, Ranisa, Anonymous

I was diagnosed in 7-2005 with Melanoma on the back (0.25MM - Stage 1A, Clark level 2) three months after I gave birth to my daughter.  My 2nd daughter was born in June the following year.  Last night I noticed that a mole on my 2nd daughter’s butt (she had it since she was a baby) has changed in color and immediately took her to my dermatologist this morning to have it biopsied.  The doctor said that 2 new moles have grown on top of the existing mole so the color is different but thinks it is a good idea to have it biopsied.  In event, I am freaking out and lot of unpleasant memories came back … I googled and it appears that pediatric melanoma is rare and extremely unpredictable … sorry but I just need to vent a little … any thoughts?  The doctor said the result will come back in a week … I don’t know how I am going to survive this week …         

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kbc123's picture
Replies 25
Last reply 4/25/2011 - 12:00pm

Hello ~  This is totally new to me and I am looking for answers, support, sanity, sleep, not all in that order.

I am currently in the very beginning stages of my new life-  with Melanoma.  I had a strange mole on my back that was removed last week, got the "unfortunately its Melanoma"  telephone call on Friday.  By Monday, I was seen by a doctor in our local Cancer Institute (CINJ)  who really gave me a better outlook on things, but nonetheless, I am petrified.  I am going for a lymphoscintigraphy and for more surgery to take off more skin/tumor area and I will have a lovely scar on my back ( who really cares about that anyway).   I will take all the scars they can give me, but I want my life back.

Someone on here, please tell me I am going to get through this, because as of last night, my brain can't deal with this. Sleep is minimal, I can't turn it off. 

I will owe you the world if someone could just give me peace of mild. 

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mzeigler's picture
Replies 22
Last reply 4/25/2011 - 10:52am

I just wanted to report that I lost my wife of 31 years to melanoma last Tuesday.  We started this battle 8 years ago, with acral melanoma under her

right thumb.  After several surgeries, the entire thumb was removed and we had clear scans for 4 and a half years.  Then a small lung met appeared.

That was removed early in 2010.  We had clear scans for about 9 months and then they appeared in her liver, hip bone and lungs again.

We did il-2 at Johns Hopkins is September and October of 2010, which was very difficult.  Scans showed it did not help.  We started compassionate

ipi in December through February, but the bone mets were so painful, we had a partial hip replacement.  While in rehab, the brain mets appeared

and her liver became extremely swollen.  We came home the middle of March and spent the last few weeks together.  I lost the person I was

closest to my entire life.  We shared so many hopes and fears  and life experiences, I can hardly imagine going on without her.  We have 2 sons

which she advised me to be strong for.  At some point I hope the agony will let up, but I don't know.  Her last words spoken were wispered to me

that she loved me.

 

Mike Zeigler

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Replies by: Nicky, nicoli

I had radiation treatment in 2001 and again in 2005 for melanoma.  Both times during radiation treatment, I developed neutropenia which means that the bone marrow does not produce enough white blood cells (neutrophils) which can leave you open to infections and viruses etc and then my blood tests returned to normal after treatment

I have recently been feeling unwell and the doctor suspects I may have cyclic neutropenia which is quite rare and in "laymans terms" neutropenia happens quite often.  No-one else in my family have this, and I wonder if it could have been triggered by the radiation treatment, viruses, bacterial infections.  I have problems with my teeth and gums for the past five years, they always feel sore and I feel tired quite often, like my body is always fighting something.  I also have lymphoedema but that is under control.

I was wondering if anyone else has been diagnosed with cyclic neutropenia this long after cancer treatment, whether they have problems with their gums and are more susceptible to infections.

 

LOL.  Long term survivor 11 years NED

 

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Two weeks ago I was ready to take my wife to Bethesda and the National Cancer Institute for assessment and future participation in clinical trials. We were scheduled to leave on the 13th and be assessed on the 14th. Although my wife had just had a PET/CT scan (in connection with her follow-up on Ipillimumab/Yervoy - which didn't work for her) they wanted a brain MRI. So she had one done on Friday the 8th. On Monday the 11th our oncologist told us they had found two small brain tumors. Devastating news, as he was pretty sure it knocked us out of clinical trial participation. But we left his office lined up with an appointment with the gamma/cyber knife radiologists and my reassurances to her that I had read lots of folks on this board had successfully undergone brain tumor treatment with radiation. We were also ready to undergo a course of IL-2, her only remaining option. We got home, told our one son, called and told the other, and then fate intervened. She had a stroke; we found out later that night from the brain surgeon one of the tumors burst (it was only 11 millimeters). He characterized melanoma tumors as "bleeders". She survived, but we have been in the hospital the last 12 days, getting home last night. She has the horseshoe scar of honor and the shaved head. She will have to have radiation on the bits of the tumors that didn't come out. But this is a significant setback as it also delays systemic treatment as she has to wait until her brain calms down from the recent surgery and then the radiation. She was also unfortunate enough to suffer a condition called cerebral sodium wasting - about 4 days after the initial surgery the brain loses all capacity to regulate sodium levels and as a net result your brain swells and it's a big problem. Thus the 12 day stay.

Despite the excellent and timely intervention of the brain surgeon, there are lasting effects of the surgery; many are what we hope will be temporary ones or ones her brain can rewire. So not only is she a melanoma patient, but a stroke victim. The worst is loss of peripheral vision on the right side which is permanent. She has balance, memory, and cognitive capability loss, plus aphasia which is rapidly diminishing. Despite all this she retains all her personality and humor. She feels remarkably calm and anxiety free about both her stroke recovery and future melanoma treatment and course of cancer. She jokes it might be because of the brain insult (which it probably is), but who cares as long as it's a positive condition. She starts rehab this week.

From a caregiver perspective it changes the game a lot. She has no capacity for organization or management of her condition. So I am the one giving her all the pills and scheduling and managing both the rehab and cancer treatment processes. Fortunately, I am semi-retired and work out of our home and we have a lot of friends and family for support and several have activated a web based support system that we can tap for anything from meals to sitting with her to driving her if needed (she will never drive again). I cannot imagine how others with less support could cope, it has and will be a daunting challenge.

Our oncologist characterized melanoma when she was first diagnosed as a capricious disease, you just never know how it will play out for each individual. I can know attest to that description.

 

NIck

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

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tennisgirl's picture
Replies 10
Last reply 4/25/2011 - 2:01am

Hi everyone.  I sure enjoy reading all the posts and gleening all this helpful information.   This board gives me encouragement and hope.  I have failed GSK BRAF/MEK and now will try IL-2 starting on Monday.  Who was it on this board that is NED after IL-2 and had a lot of helpful advice on how to get through it, what to take to the hospital, etc...??  I would sure appreciate their email.  I can't seem to find the post.   Thank you for responding!  Keep on keeping on.

 

Marian

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Charlie S's picture
Replies 1
Last reply 4/24/2011 - 10:27pm
Replies by: Charlie S

What is hosted chat?  Nothing more than if you venture in, someone will be there to talk with.

Before the day when social networking was even a phrase, patients, family and caregivers would  come to MPIP and share, on a daily basis, the fears, questions,frustrations, hopes and anxieties of melanoma.

We were then, as we are now, still a bunch of orphans in many regards in the disease department and it is here that we would find community, understanding and comfort.

It should be no different now.

The cyber bar will be open, free and unlimited, as is the conversation.

So be ther Tuesday night.

Charlie S

Stage IV since 1996 and very undead..

 

 

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kevinod50's picture
Replies 5
Last reply 4/24/2011 - 1:51pm

Hi,

I am new to the board and was diagnosed with 3a melanoma last year.  I am currently on month 9 of Interefron.  Last week my quarterly CT scan showed a new nodule in my lung.  It measured 2.3 mm.  Not on previous scans.  Oncologist recommends re-scan in 2-3 months.  He alos said that these things happen "all the time" and he is not particularly worried about mets.  Has anyone else had a similar experience with CT false positives?  Also, want to know how it was handled...thanks!

 

Kevin O'Donnell

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nicoli's picture
Replies 1
Last reply 4/24/2011 - 11:11am
Replies by: Janner

Hello,

Such a simple question that I asked my oncologist and surgeon but I can't seem to get a clear answer.......

When a pathology report says "there is no sign of metastic disease", does this just mean there is no TUMOR or does this mean there are NO CANCER CELLS? 

I first questioned this when I had my neck dissection to remove 23 lymph nodes. One showed "signs of metastic disease" and listed no dimensions of a tumor.  I asked my oncologist at the time what exactly that means and she said that she would have to call the lab to get the answer and she never got around to it. (which is one reason why she is my "first" oncologist!)

Thanks,

Nicki, Stage 3b, diagnosed December, 2009, scalp, surgeries (3), local recurrance October 2010, biochemo, currently radiating my scalp to (hopefully!) prevent recurrances.

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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Replies by: Janner, lhaley, nicoli

Hello all,

I have a question about recurrent mel and secondary primaries.  If mel returns to the area near a WLE, is it always recurrent melanoma or could it be second primary and how can they tell that?  Also, if margins around the WLE were all negative, can mel recur around the scar site.  The reason I am asking is that I had my WLE in late Nov 2010 from 1.5mm mel. with clean margins.  It went to 1 node microscopically so IIIa now.  Had first checkup in mid March and had 2 moles removed but both negative.  The area around my WLE has formed what they call a keloid scar and it itches terribly all the time, I put lotion on it every few hours.  I noticed over the past month that a darkened area is in the scar around where I see lots of veins.  I go back to Mayo in June for scans and another derm visit, but am debating whether I need to go back sooner.  Thanks for any info/insight.  Dave

Live life to the fullest and enjoy each day!

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Simmy from Oz -Melbourne's picture
Replies 9
Last reply 4/24/2011 - 12:29am

Hi there everyone,

Ive been taking RO5185426 for bout 9 weeks now, with amazing results in regards to shrinking all my tumours.  Only problem is Ive got the most severe, acne- like, extremely sore facial rash :-(    Its been like this for  5 weeks now and only seems to be getting worse.  Its in my ears, on my head, up my nose, down my throat, its crazy stuff!! The rash is all over my body but not as sore or severe as my face.   My whole body is so itchy tho, its driving me nuts! 

Has anyone else experienced this? & how have u treated it?  My oncologist gave me some tabs to treat acne and infection, and some cortsone type cream.  Hes given me a week, and if theres no improvement in my skin, he is going to drop my dosage of RO5185426, which Im  a bit scared to do when Im getting such a good response.  He does not seem too concerned about dropping my dose & thinks that 6 tabs a day instead of 8 will be sufficient for my body weight (55kg)

What do all you experts out there think & has anyone had this RASH problem...Will it ever GO AWAY?? 

oh, also while im here, has anyone experienced nerve damage in their legs and feet after having them blow up with fluid and then drained very quickly?  its like i have constant cramps in my calfs and an aching kind of pins and needles in my feet.  i cant walk properly and its extremely painful.  this all happened before i started taking R05185426, so it cannot be a side effect. 

Thanks all for your wonderful kind hearted replies,

keep smiling everyone  :-)          Simmy from Oz     xo  

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mommydog's picture
Replies 1
Last reply 4/23/2011 - 9:35pm
Replies by: Janner

What exactly does "tumor burden" mean? 

thanks

Stupid in Sacramento

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himynameiskevin's picture
Replies 12
Last reply 4/23/2011 - 8:14pm

Well, it's midnight, I just got home from a long day of shuttles, flights and airports. But before I lay down to sleep, an update:

So.., I had another solo trip the NIH in D.C. on Tuesday for my forth round of monthly scans. One day of traveling, one day of bloodwork and scans, and today, the doctors visit followed by the traveling home. And this months results are..

Things are still shrinking. At a snails pace. But still shrinking. There is nothing new and my brain is still clear.
Not a cure, but great news nonetheless. My doctor did mention that it appeared that one might be a little bigger, but because it's so small, and since all the others are shrinking, she thinks it most likely just seems like that because of the way the CT scan image was spliced. I go back in another month and see what they have to say about it and the others.
She said not to worry about it. ...I'm sweating bullets.

Each month I really hope and pray for some... bigger number I guess, of percentage down or tumors disappeared. (as we all do I'm sure)
But it seems each month, the progress has been getting slower and slower, and I'm a little worried about the months to come. :/
We'll see. I guess I'll cross that bridge when I get there. I try to remind myself, that just 6 months ago this stuff was spreading out of control and I would've done just about anything to get it to pause, even if only for a day. And I guess I'm pretty fortunate and should be happy to be where I'm at right now, even if it isn't where I hope to be someday. And I can't rule any possibilities out. From what they've told me, they've seen just all sorts of reactions in different people, different timelines and effectiveness, progress or lack thereof etc...So it's really hard to say what to expect. I also heard a guy in the waiting room mention to another guy that his stuff didn't really budge for 6 months, then something kicked in and all of a sudden his adopted cells just went to town on all the enemies. :) ...Made me hopeful.

We'll see what next month has to say.

Until next time, I hope you all are doing well, and as always thanks for the positive thoughts, wishes, prayers, comments, and happy dances.

-Kevin

 

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