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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mommydog's picture
Replies 7
Last reply 4/27/2011 - 1:55pm
Replies by: Anonymous, mrsmarilyn, dawn dion, mommydog, deffk1105

My husband is starting his fifth week of GSK's  Braf/Mek trial.  The only side effects he has had prior to now are a fever and chills occurring 4 hours after his dose and lasting about two hours.  This did not occur every day, and when it did, it was with varying degrees of intensity.

For the last 24 hours, he has had continuing fever and chills.  Sometimes the fever breaks for a short while, but returns.  My husband is afraid to call the doctor about this for fear of being taken off the trial, which otherswise seems to be working.

Has anyone had these symptoms?  Any advice? 

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Melanoma Mom's picture
Replies 5
Last reply 4/27/2011 - 5:16am

I know there has been some discussion on the boards about pegylated Interferon recently. An article that Aim At Melanoma posted today makes me wonder if it would be 1) possible 2) beneficial to switch from the standard Interferon to the pegylated? Our son has four months completed of the standard  kind, finishing treatment in December. The major negative of peg. in my mind would be the long duration - five years - BUT if it were more beneficial at fighting off a recurrence, I believe we would easily accept that length. He has very little side effects from the drug so we would basically switch (if possible) because of any benefits from longer delay of recurrence.

Heading to Dana-Farber later this week for a check-up and wonder what they will say to this question ....

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dawn dion's picture
Replies 6
Last reply 4/26/2011 - 10:49pm

Hello All!

So since I can't find anyone to chat with at 3 am (can't imagine why) I thought I would post instead!   I go for my first set of scans, since starting the GSK BRAF/Mek trial, on Thursday.   I know we all have "Scanxiety" and part of me really feels like everything is going to be "ACES" but then there is the other half that has all this wild crap running around in my head and I am just waiting for the Dr. to sucker punch me again.  To those of you who are "old pros" at this game, does this ever go away?  I know everyone says just live your life, but are you ever really able to make plans past tomorrow?  I catch myself doing so and then I think "oh wait".   Does this monster ever stop pissing you off?  Does every ache and pain ever stop freaking you out?   Do you ever stop questioning everything?   When you get to NED (where I hope beyond hope to be Thursday) or even stable, do you ever get a sense of relief? Or do you just sit and wait?  This makes me CRAZY!!!!!!   Even though this board scares the hell out of me sometimes I love it here because I know I am not alone - it's not like I can go wake up the hubs and say "so here's where I am" and truly expect him to understand.  He will try to understand, he will be compassionate and loving and tell me that he understands but I don't know that anyone else truly gets it.

So that's my latest rant - thanks for reading.  Much luck to all of you!

Hugs and Smiles

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

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Nabokov's picture
Replies 3
Last reply 4/26/2011 - 9:01pm
Replies by: MichaelFL, nicoli, CKasper

Hi, everyone

I am a writer working on an article for oncology practices, to encourage them to have someone at the office who helps patients understand how much their insurance will pay and tell them about assistance programs available if they need them for their out-of-pocket portion.

Some oncology offices already have such a person. I'm interested in hearing about experiences from patients.
Did you have someone at the practice who was knowledgeable about insurance to talk to?
Was information given to you at the beginning about how much your costs would be, or did this come after you got the bill (and, perhaps, were shocked).

If you would like to respond here, that is fine, but also I would like to interview someone with experience (good or bad) and how the oncologists office did or could have helped you understand things.

Please contact me at marian.wiseman@earthlink.net

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Suzan AB's picture
Replies 5
Last reply 4/26/2011 - 2:52pm
Replies by: Anonymous, Suzan AB, LynnLuc, MichaelFL

Hello All!

So my husband and I were going over treatment options the other day and we began to brainstorm (I know scary) and we realized that we have never heard of melanoma or any other cancer involving the heart muscle.  Does anyone know if there has been an investigation to see if this is true?  Hypothsis:  Heart tissue is resistant to cancer.  I realize that tumors grow by the heart, around the heart, etc. because I have a pesky met kissing my heart...its in my left lung ever so close to my ticker!

Out loud, typed out in back-in white...I have lung mets...phew...a few weeks ago I underwent a Flex bronch. VATS wedge resection to my lower right lobe.  The two other nodes were too deep in my lung and my doctor wanted a quick recovery time, so next month I will be asking to be treated with IL-2 and a dash of GSK Braf.  Call me silly, but I believe this might be the treatment for me...

Thank you to all of you old-timers and newcomers who continue to keep this place open for folks like me who appear and then disappear, like Houdini!

My best to all with many Blessings,

Suzan AB

Presently...One Day At A Time.

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wgalinat's picture
Replies 5
Last reply 4/26/2011 - 12:39pm

All scans were clean and for the first time since the intense radiation damage from the trial, my

kidney "numbers" actually improved.  Yippie !   Now 10 years out from the primary, and 5 years

out the NIH clinical trial.  Keep up the hope !  It works !  Not a hero, but a survivor !   Warren G

"don't ever give up" "don't ever give up" ( the Jimmy V Fund for cancer research)

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MsKage's picture
Replies 11
Last reply 4/26/2011 - 6:02am

Hello -

SNB in April, one positive node.  Underneath the scar from that node, I had recurrent cysts which were repeatedly drained and surgically removed twice. Now there is a new, hard (bone hard) lump in the same place.

I had an ultrasound yesterday and the report says "highly suggestive of malignancy", nothing else. I am having a PET scan tomorrow.

I saw my surgeon today and he suggested that I wait and see what the PET shows.  Obviously, he will remove it if it is clearly suspicious on the PET scan. However, he suggested that if my PET is clean that I just "keep an eye on it".  He said he would be willing to do a needle biopsy if I really want it, but he's pretty sure it's just scar tissue from the multiple surgeries.

What do you guys think? Is he right about it likely being scar tissue?  Would you take that chance?  Should I demand to have it removed if my PET is clear?  Maybe I should wait to post until I know for sure what the PET shows, but I'm really anxious about this and I am worried that my surgeon is not taking this as seriously as he maybe should (he's not a specialist).  Then again, it's easy to get paranoid about these things....

 

Thank you in advance for any advice, and thank you for being here to help... this site is an amazing resource.

 

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dlraysin's picture
Replies 3
Last reply 4/25/2011 - 9:47pm

My brother was diagnosed in 2/11 with a spindle cell melanoma.  He had a lump on his chest that his family doctor said was a cycst for the last 5 years. He finally complained enough that the doctor removed the "cyct" in the office.  The biopsy came back positive for melanoma that was 17mm thick and was attached into the fatty tissue.  Of all things, I am a chemo nurse for an oncologist.  This happens to be one of the cancers that I have no experience with.  I went with my brother to see a surgical oncologist.  He said the the site would need be excised much larger with addittional biopsies and also to have sentinile node mapping done and biopsy the node.  This was expected.  After all of the reading I also expected that the nodes would be positive due to very large size.  I got the impression that the doctor also expected this.  Due to poor insurance coverage, he did not get a pet scan, but did get a ct scan.  Nothing was seen.  The additional surgery found the lymph node negative, there was a small part of the tumor left behind that was removed along with a 5 in circumfrance around the site.  The doctors are al puzzled, biopsies have been triple checked, because the tumor was 17 mm, but are not finding mets or positive lymph nodes (yet). We were told outright that he was at an extremely high risk for recurrance and mets because it is spindle cell and 17mm.  We were previously told by the surgeon that interferon would be standard of care, but would only lower the risk about 1%.  After being released from the surgeon, he was sent to a general oncologist who recommended interferon for a year.  My brother (age 40 with a 12 year old son) doesn't want treatment because he feels that it won't make a difference (was told only reduces risk 1%) and if it is going to return he doesnt want to spend a year being sick when he can spend it living.  As family, we are scared and frustrated.  I understand his feelings and will support his choices, but am also looking for addittional information that may provide better info.  I am trying to get him to get other opinions.  Does anyone have any experience in this (type and stage, size of tumor, kind of treatment, or refusal of treatment).  I would appreciate any and all comments.  I feel that I am a great nurse to my patients, but stink at it when it is family.

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Here's an article about Peg... Interferon.  It does sound much more encouraging.

http://www.aimatmelanoma.org/aim-for-answers/physican-blog/1822.html

 

Mary

Stage 3

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

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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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