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.

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LynnLuc's picture
Replies 1
Last reply 4/22/2012 - 8:54pm
Replies by: bikerwife

 

Melanoma fought on two fronts
PUBLISHED: 12 APR 2012 00:05:33 | UPDATED: 12 APR 2012 11:30:51
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JILL MARGO

The aftermath of surgery for melanoma.Photo: Dean Osland

Sometimes, when hope is low, cancer treatment can turn up an unexpectedly good result. This happened recently in New York at the renowned Memorial Sloan-Kettering Cancer Centre.

It involved a woman of 41 with advanced melanoma who had three children and had run out of curative options.

In 2004 she had been treated for a melanoma on her back, but the cancer had already escaped and seven years later, despite further treatment, had spread into her lymph nodes, her spleen and into an area close to her spine.

Although she received the newly approved melanoma drug, ipilumumab, her condition worsened. She was in pain and her outlook was grim.

To relieve the pain of the lesion pressing on her spine, doctors gave her local radiation only to this area.

What followed was unexpected. Not only did the spinal lesion shrink back dramatically, but so did the lesions in the rest of her body that had not been targeted by the radiation.

The radiation had triggered something that made the tumours in her back and lymph shrink and those in her spleen, that had appeared as distinct dark patches on the scan, vanish completely.

It is now 15 months since that occurred and she continues to do well. CT scans two weeks ago found the only site of disease was on her back, which remained stable in size.

Her unique case, published in The New England Journal of Medicine last month, described the event as a rare phenomenon.

It occurs when local radiation delivered to a single tumour in a person with advanced disease results in tumour disappearance outside the irradiated area.

It has been described in cancer before including in melanoma, lymphoma and kidney cancer.

While no one is sure how it eliminates cancer, researchers from MSKCC suggest this case may have resulted from a combination of the new drug and the radiation. They believe the immune system’s cancer-fighting response may have been turned up a notch with the addition of focused radiation.

Ipilimumab was developed at MSKKC and is the first drug ever to show an improvement in overall survival in advanced melanoma.

It is a form of immunotherapy that exploits the body’s own immune system to attack cancer. Last year it was approved for use in advanced melanoma in the United States and in Australia.

For this case study, changes in the woman’s immune system were constantly measured and changes in tumour-directed antibody levels and immune cell populations were noted at the time of the abscopal effect.

This suggests radiation may help activate the immune system to fight cancer. Trials are now under way in the US to confirm the approach of combining radiation therapy with ipilimumab for the treatment of melanoma and, interestingly, prostate cancer.

Michael Postow, oncologist and the lead author of the case study, says the woman still complains of right-sided rib pain which he believes may be due to nerve damage from the cancerous mass that was in her back.

Despite this, she now has “remarkably durable, stable, low volume disease and is clinically well”.

The Australian Financial Review

JILL MARGO
Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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i was on the beach in australia half the year for 14 years,,,,i never put sun screen on,,,,,,,,,i have olive skin or so my mom told me,,,,,,,had a little thing on my back,,,,finally my dad payed for me to go to dermo,,,,turned out to be a .65 mm melanoma,,,,,i was freaked out and still am,,,,,,,,,,had a shave biopsy,,,,7mm submitted for processing,,,,,they say its a

 diagnosis   ,,,, malignant melanoma with extension to pap dermis clarks level 2,,,,,,,,

,microscopic description         there are atypical malancytes present both singly and in nests along the dermoepidermal junction, the melanocytes have large nuclei with prominent nucieoli and abundant cytoplasn with brown granular pigment occasional mitotic figures are present the lesions is broad and poorly circumscribed laterally the nests do not maintain discretion and merge with both adjacent nests and single cells, the cells with in the nests have lost cohesion , atypical spindled melanocytes are present in the nests with in the papilary dermis aswell, these nests are irregular in size and shape and the melanocytes within them are atypical, a patchy lymphocythic infiltrate is present beneath the lesion

note the neoplasm measure .65mm at its greatest thickness in these sections, the lesion is not ulcerated , a pathcy lymphocytic infiltrate is present beneath the lesion, one mitosis per square mm is identified

 

then i got it cut out and this is what came back from pathologist

excisional biopsy measurein 30mm was submitted for processing

MICROSCOPIC DESCRIPTION

there are sections of epidermis, dermis, and subcutaneous tisses present on these slides, there are atypical melancytes presentsingly and in nests in the epidermis adjacent to the prior surgical site which contains granulation tissue fibrosis and chronic inflamation and is covered with scale crust

DIAGNOSIS

skin and subcutaneous tissue with scar and persistance of melanoma

NOTE

residual intraepidermal melanoma is present in these sections however the surgical margins are clear and the neoplasm appears to be completely excised and incidental excised intradermal melanocytic nevus is also present in these sections

any input would be greatly appreciated,,,,,,,,,ive been reading everything i can find,,,,i went to two top oncologists one guy said to do it the other kind of said i didnt need to,,,,and my dermo kind of thinks i dont need to,,,,,but she also did the wide excision,,,,,,and ur kind of not suppose to do that if u wanna get a good read off the drainage points so im confused and not relaxed about the whole thing,,,any input once again appreciated ,,,,,,thanks

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Jeff's Mom's picture
Replies 20
Last reply 4/21/2012 - 10:31pm

Brain MRI is clear (last one was February 3rd)!!!  Jeff will have body scans at the end of this month, and we are hoping to see some shrinkage of those liver and lung tumors.  RELIEF!!!!

Bridgette (Jeff's Mom)

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MeNDave's picture
Replies 11
Last reply 4/20/2012 - 12:36pm

Well, we've had a heck of a week.  Dave and I visited with the trial nurse for the MDX-1105 last Wednesday, and they requested a brain MRI prior to starting.  A lumbar spine MRI indicated a bulging disk which is causing Dave's back pain (done on Tuesday), but also diffuse bone mets to the spine.  On Wednesday we travelled to UPMCs Hillman Cancer Center for the MK-3475 trial, but the only seat left is for post IPI patients.  Back to Roswell Friday, and an upper spine MRI showed additional diffuse mets to the upper spine, and brain MRI today showed 6 small (all less than a centimeter) lesions on the brain.  So next up is gamma knife on Wednesday, and then he will start IPI Tuesday (hopefully).

I sometimes want to ask if they are reading HIS scan results, as after all this transpired today, Dave went back to work - he even amazed the neurosurgeon...

Any advice on gamma knife is much appreciated - he plans on going to work on Thursday.  He amazes me.

All my best to all you,

Maria

Don't ever, EVER, give up!

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goldengirls2011's picture
Replies 5
Last reply 4/20/2012 - 11:43am

Is anyone going to this event this weekend? Since I live in GA, I registered for it. I'm walking in memory of my Aunt Janet, who was a warrior for 15 years.

I hope to meet some of you if you are attending.

I was fortunate to find my melanoma very early (stage 1a).

Although I never post here, I frequently read the boards here - as it's a great way to get better educated on this beast.

Sending lots of postive thoughts & prayers to each & everyone of you!

Work hard, but play harder.

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BarbieGirl's picture
Replies 7
Last reply 4/20/2012 - 12:14am

I spoke with Allen just a bit ago, and found out his wife, Carol, passed away peacefully on April 14th.  A 'celebration' of her life was held today.  Even though Carol didn't have melanoma, I feel this needed to be posted on the main board.  Allen hung around here for many, many years sharing his knowledge, wisdom, encouragement, hope and grief with so many.  His family is there with him, and he said he's doing okay; just glad that Carol is now pain free in Heaven.  Carol and Allen would have celebrated their 40th wedding anniversary this year;  and she spent many of those years by Allen's side, fighting this beast.  She encouraged him to do what he felt he needed to do, and go where he felt he needed to go, to fight his melanoma.  Allen hasn't posted much here since the bulletin board changed, and his computer crashed, so he lost all his contacts.  If you'd like to contact him, his email address is redneck_77 @ att.net (no spaces).

I've met Allen--he even stayed overnight once in my barbie room! =)  I wanted to meet Carol sooo much, especially when I was in Ft. Lauderdale last summer, but things just didn't work out.  I chatted with her on the phone several times over the last few years.  My heart is breaking right now.  Please keep Allen and the family in your hearts, thoughts and prayers.

I love you, Allen, and I'm so sorry.  There are no words, only tears......

*Hugz* from my heart to yours,

~Lisa~

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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Angela C's picture
Replies 9
Last reply 4/20/2012 - 12:06am

Hello.

I wanted to post an update for those who may have read my recent posts. I was taken off of the MDX-1106 trial about a month ago as I had more than the 20% tumor growth allowed. A brain MRI at that time also showed a 2-3mm lesion suspicious for a tiny metastasis. I had SRS last Wednesday to treat the spot in the brain. I am scheduled to start Yervoy next week at Loyola with Dr. Clark.

I currently have a tumor in my right adrenal gland. That is the only major thing that we see going on at this time.I have some spots that show up in my lungs, but they have been stable and never biopsied.  So, we are moving on with Yervoy now hoping that it will do the trick and shrink this tumor and kill off any other melanoma cells floating around.

If any of you have started Ipi recently, I'd love to e-mail with you so we can compare notes. =)

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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Aussiegirl's picture
Replies 14
Last reply 4/19/2012 - 11:45pm

My partner and I are in a fairly new relationship. His primary melanoma level 3 was in Feb 2010 with several metastases to the groin, pelvis in 2010 and 2011. Then the devastating news in Nov 2011 (the same week we moved in together) that he had a brain tumor in the left occipital lobe. This was removed in Dec then another one appeared in the same area in March 2012. He's now undergoing radiation; 3 treatments so far which have scared both of us because of how quickly the symptoms (which he'd convinced himself he wouldn't have as he was strong and fit) have surfaced. The usual - nausea fatigue etc. What particularly worries me is his mental health. Our relationship is really suffering. He rotates between wanting me here and doing everything we can as a couple to beat this thing so we can have the future we've fought so hard to have. And then telling me to leave, in favour of doing it completely alone. Won't even let me drive him to radiation or brain ops! I'm at my wits end trying to be supportive...and failing. I love him so much but often feel that perhaps he's right and I should leave. My presence seems to make him angry and use up what little energy he has. Can anyone please help?

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aldakota22's picture
Replies 8
Last reply 4/19/2012 - 6:52pm

Saw Dr. Anna Pavlick at NYU on Monday.Highl respected melanoma specialist & compassionate dr.. Knows I traveled to see her so made sure cat scans & MRI of brain (never had one done) scheduled and approved that afternoon.Last cat scans were done 7-29-2011.Neither her or I could understand why my prior oncologist waited so long.Been on Zelboraf since 9/12/11.My scans show reduction of 50-75%.No other tumors other than orignal site and brain MRI is clear.Always told had a clear head now i can prove it.Just wanted to share positive news with everybody .Read enough negative posts its always good to post positve results.Pray everyone fighting can post good news.All the best to all .  A very happy Al

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deardad's picture
Replies 6
Last reply 4/19/2012 - 6:43pm

Hi everyone, saw dad's oncologist tonight and it was confirmed that a new lesion has appeared in the sub fat after 7 months on Zelboraf. Lesion was excised and disease at this point is stable in liver with slight growth in existing tumors. Hasn't had a MRI yet though.

Next move to get him on the BRAF MEK combo by Roche if MRI is clear and there is a place for him.

Hoping the MEK will have an effect in time for an ANTIPD1 trial in Australia.

What a stressful time, I'm really feeling for everyone going this.

Nahmi from Melbourne

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/19/2012 - 4:52pm
Replies by: Anonymous, Janner, ckratina, LynnLuc

I was recently diagnosed with Melanoma in situ on my neck in March of this year.  Had WLE performed a couple of weeks later and pathology report came back clear.  I now have developed  a swollen lymph node directly  below the Incision.  Should I be concerned or am i just being paranoid? The original biopsy was done with a shave rather than excision even though my derm suspected it was a melanoma.  I understand that melanoma in situ is located in the epidermis and non invasive.  The surgical oncologist told me that he was going to take 1 cm margins because the melanoma was in the margins of the orginal biopsy.  I am going back to the surgical oncologist for a follow up visit in 1 week.

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Following a stage 3 diagnosis, a complete lymph node dissection was performed with the following final diagnosis: "Twenty-one reactive lymph nodes with melanin containing histiocytes. Changes of previous bipsy site with melanin containing histiocytes."

The surgeon who read the report told us that this was terrific news, and that there was no evidence of melanoma in these 21 lymph nodes or other tissue, but he said that we should discuss the pathology further with a medical oncologist. We have an appointment next week, and before announcing the good news to everyone, I want to try to understand why the lymph nodes were reactive if they weree cancer-free, and why the histiocytes were mentioned.

If anyone has any insight into this pathology, we would greatly appreciate it. Our next step is to enroll in the ipi/interferon clinical trial, no matter what these results show. Thank you so much.

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/19/2012 - 7:38am
Replies by: Wally, Anonymous, SStamps, rbruce, Swanee, boot2aboot

Hi,

 

I am a stage 4 and have active disease on my legs & lungs.

 

I have had "one" sore rib (about 1/3 of the rib) for about 3 weeks. Of course, my mind thinks it is mel. I do not remember straining or hurting my rib cage.

 

I sincerely would appreciate any  feedback from  those with mets on the rib.  What are the symptoms?

 

Thank you for taking the time to reply tomy post.

 

Mary

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Snickers60's picture
Replies 6
Last reply 4/18/2012 - 11:21pm

It's been a LONGGGG time sine my hubby and I have been here.   He has been free of melanoma since Oct. 1999 when he had a melanoma removed from his right ear lobe !   They cut the lobe off - did sentinel node biopsy, which was clean and we went to M. D. Anderson for 8 years.   We were released to our Doc here upon our own request and he has done an excellent job of caring for him.

On Feb. 29th, Wayne (the patient) had his physical - excellent helath - great blood work - cholesterol a little high.  Doc suggested he might want to do Calcium scan because most of his family dropped dead from heart attacks.   On a whim, he did.   The Doc called......told him he had a good bit of plaque, but the problem was no longer that.  There was a Shadow on his left lung and he thought they should see about it pronto.   Long story short - had the needle biopsy and it was MELANOMA !  Headed for M. D. ANDERSON as soon as we could get there after test had been sent yada yada.   Did PET SCAN - BRAIN MRI - Blood.    7 METS !    2 in left lung - 1 in abdomen - 1 on right leg - 1 in spine at L-5 - 1 in liver - and I lost my mind on the 7th one.  I'm pretty crazy right now.  

I don't have to tell you what we're going through.   We will go back to M. D. on Monday to see Doc one more time, and start ZELBRAF !   The Brain MRI was clean so because of that they decided not to do Bio-chem which was the original plan.    We're happy about that........I THINK !

I am his wife - NANCY !    Hi NANCY !    HEY YA'LL !   And we are trying to breathe !!!!!!!   Scared............but trying to TRUST GOD and not walk in FEAR ! 

I (Nancy) especially need to talk.   I'm coming undone, because guess what, I've already been shut in and shut down sick with Fibro and you name it for the last 30 years, and how can we possibly go through this with no one well.  We have a fantastic marriage........the kind folks dream about.   The NOTEBOOK Kind.......so close.........too close and not much family.   Only son is in Charlotte about 12 hours away struggling to live after losing his job in the recession.  

I feel like I am drowning....................he has taken care of me all these years.   Sometimes I'm too weak to even carry my purse and he does that too.  Have only gotten myself to Walmart one exit down about 5 times in the last year.   Was off the operating table only 2 weeks when we learned this.  Have liver disease (but not cancer) had a nasty gallbladder removed and all that on top of a dozen other things like the Fibro and CFS and several bad injuries from a wreck and 2 falls.   HOW WILL WE DO THIS.............

WHAT WAS GOD THINKING......................

I welcome any an all input and apologize for the long post right out of the shute !!!   

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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imissmommy2003's picture
Replies 1
Last reply 4/18/2012 - 11:12pm
Replies by: KRob

Hello my name is Mariah Larsen; I am 17 years old and I lost my mother to melanoma in June of 2003. I am currently a Junior at Rogers High School in Spokane Washington and am working on my culmanating project. My project is on melanoma. I want to do a docudrama on the effects of melanoma. I would really love it if a parent has lost a teenager to melanoma, that is willing to be interviewed for a good cause, to email me, or reply to this post. If you are willing to do this, please put the subject as Help with senior project. Thank you for your time

Live Life to the fullest, and live with no regrets because at one moment, because at one moment it is what you wanted. Music is life. Love your mommy no matter what.

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