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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I hope this will help others. My dad was diagnosed with melanoma 6 years ago. Stage 4 3 years ago. Multiple surgeries...biggest was the lung 3 years ago. it was removed...very painful for my dad but he's a fighter.  It hit the nervous system 8 months ago, PET scan showed it along the spinal column and in the fluid around his brain. Sorry for the lack of specifiics...I am not a doctor.  the dcotors gave him 2 months. From what I know Zelboraf isn't supposed to cross hte blood brain barrier, but he tried it anyway. He had radiation around the head followed by taking the Zelboraf. Next scan showed the cancer had practically disapeared. Doctors were amazed. Side effect were bad, he had every one on the package insert. Just as he was about to stop the Zelboraf becuase the side effect were too much it quit working...symptoms were back. Confusion, headace, backace, etc. He's now on steroids to relieve the swelling in the brain and under hospice care. It's a great drug, bought time...maybe enough for him to see my son born. Worth the side effects? I don't know, only the person who has to do it can decide. I'll try to answer questions anyone has if you post or email me mcarter12345@hotmail.com.

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Sharona19's picture
Replies 9
Last reply 6/17/2012 - 4:47am

Hello, my name is Sharon and was diagnosed with invasive nodular melanoma 5/7/12 and am currently recovering from a WLE with a full thickness skin graft on my left ankle and SLNB from 6/5/12. My margins are clear and the three nodes taken show clear as well. The primary tumor was 1.79mm. I see the general surgeon Tuesday for a wound check and to go over my pathology report. What can I expect as far as the next step in treatment? The surgeon mentioned that I might be placed in a clinical trial. My biggest question is where and how do I find information on nodular melanoma and it's treatments and outcomes. I've been Googling like a crazy person but I can't seem to find any thorough information. It all seems vague and contradictory. I just found this site and I haven't learned how to navigate it yet. Any help would be appreciated as well as any hints to make this WLE recovery any better - it's very painful and I'm not good at sitting.

I thank you in advance for any help I get and I send peace to those who know the answers I need.

Sharon

Everything works out in the end, so if it isn't worked out then it's not the end.

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A national research collaboration of senior researchers, including a researcher from Moffitt Cancer Center, has found that 20 to 25 percent of "heavily pre-treated" patients with a variety of cancers who enrolled in a clinical trial had "objective and durable" responses to a treatment with BMS-936558, an antibody that specifically blocks programmed cell death 1 (PD-1). PD-1 is a key immune "checkpoint" receptor expressed by activated immune cells (T-cells) and is involved in the suppression of immunity.

The clinical trial, designed to assess the anti-tumor activity and safety of the treatment, was conducted with the help of 296 patients with a variety of cancers, including non-small cell lung cancer, melanoma and renal cell cancer, among others. Study results were published in a recent article in The New England Journal of Medicine.

According to study co-author Scott J. Antonia, M.D., Ph.D., chair of the Thoracic Oncology Program and co-chair of the Immunology Program at Moffitt, tumors can develop multiple resistance mechanisms to evade natural destruction by the body's immune system. Tumors may do this by exploiting a variety of biochemical pathways that lead to "immune checkpoints" where immune responses that might get through the checkpoints and otherwise help destroy tumor cells are, instead, terminated.

"There have been recent intensive efforts to develop immunotherapeutic approaches to treat cancer, including efforts to develop immune-checkpoint-pathway inhibitors," Antonia said. "A particular challenge in cancer immunotherapy has been to find the mechanism-based biomarkers that could be used to identify patients whose tumors are candidates for immune treatment."

For evidence that this approach is working, the study authors pointed to the recent success of the drug ipilimumab, an immune checkpoint pathway inhibitor that has been effective for many patients with advanced melanoma.

Their study results, Antonia said, suggested that tumors expressing the PD-1 ligand - PD-L1 (a ligand is binding molecule) - is an important candidate molecular marker. For example, in patients with PD-L1-positive tumors, the response to BMS-936558 was 36 percent, as opposed to no response in patients with PD-L1-negative tumors.

Among the 296 patient volunteers in whom responses could be evaluated, complete or partial responses resulted for those with non-small cell lung cancer, melanoma or renal cell cancer. The researchers concluded that the anti-PD-1 antibody was safe, effective and the responses were "durable."

http://www.medicalnewstoday.com/releases/246587.php      Article Date: 15 Jun 2012 - 1:00 PDT

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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Snickers60's picture
Replies 8
Last reply 6/18/2012 - 8:05pm

He was diagnosed March 13, 2012 with mets from a 1999 ear lobe mole, and started ZEL on April 23, 2012

We returned home today from MDANSERSON bouncing off the walls with joy ! 

Yesterday,  Dr. B showed us the PET and every single one of his tumors were GONE !

He said he ALMOST NEVER saw Liver mets go, but Wayne's were, which put him in the 4% of folks who responded this well on ZEL.

2 liver

4 lung

1  L-5

1  Distal Leg bone

ALLLLLLLLLLLLLLLLL GONE !!!!!!!!    

I hope this will encourage someone !    I pray it last.   He will continue on full dosage of ZEL for now and they will do all the SCANS

again in 8 weeks.   We are so encouraged - we're JUST PLUM OUT OF OUR MINDS !   LOL LOL

MAY YOU BE ENCOURAGED !!!!!!!!!!!!  :-))))))))))

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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vonnie4100's picture
Replies 1
Last reply 6/15/2012 - 5:54pm
Replies by: lhaley

I am constantly reading other posts to find out the results from others with this depth and the treatments that have been used successfully. Does anyone have anything to share on this topic?

"Dream as if you'll live forever, live as if you'll die tomorrow."

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My first recurrence was a neck lymph node 3/12, surgically removed.  A PET scan showed activity in a chest node very close to the esophagus.  After presentation to a Tumor Board the consensus was the risks far outweighed the benefits of surgery.  I was being seen by my local oncologist as well as at the U of AZ at the Cancer Center w/Dr. Evan Hersh.  A brain MRI showed a 3mm area in the cerebellum (either age related or tumor).  Decision to wait and repeat in 2 months.  Next step chemo.  THEN a wonderful new treatment method was discovered in an article in a  local hospital newsletter.  I was considered a good candidate and received 5 one hour treatments with this new technology.  Now I understand it's been around for a while, but for whatever reasons I hadn't heard about it.  I figure it's up to me to get the word out.  The treatment facility is Phoenix Cyberknife and Radiation Oncology Center, Scottsdale, AZ.  Dr. John Kresl is my doctor and the head of the clinic. He and his staff are the best.  All kinds of cancers and sites can be treated.  They have state-of-the-art equipment featuring CYBERKNIFE VSI, TRUEBEAM STX, VARISOURCE  IX HDR AND GE WIDE BORE 16-SLICE CT.  This is the only treatment center in AZ.  I am so thankful to have found Dr. Kresl.  The dosage is high and the area treated is just the tumor area so the tumor is destroyed. The robotic arm can approach the tumor from all angles.  You lay on a table and the arm moves around your body.  First I had a planning CT then the doctor, a physicist and a dosimeter decide on the treatment plan and schedule.  I could go on and on, but you get the idea.  If I can help in any way please email me at omeake@cox.net.   

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LynnLuc's picture
Replies 1
Last reply 6/15/2012 - 3:36pm
Replies by: hope4cure1

Just had my scans etc on Wednesday..stage 4 NED...in week 89 of 128 vaccine/Anti PD 1.  ~Lynn

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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hbecker's picture
Replies 8
Last reply 8/21/2012 - 8:16pm
Replies by: kbrenner, hbecker, Anonymous, AlanM, rlowe, scots

Does anyone have experience with a skin graft on top of the (mostly bald) head? That's where the WLE will be done, and it could be as big as three inches in diameter. Just wondering what to expect ... 

Thanks!

blogging at www.hazelbecker.com

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Anonymous's picture
Anonymous
Replies 0

I'm trying to resolve some differences in opinions among path reports (first 2 reports said no mitosis, radial growth phase. . next 2 reports said 1 dermal mitotic figure and listed it as <1/mm2 and listed vertical growth phase/tumorigenic), I tried yet again, this time at MD Anderson.  This time 0.34mm, Clark II, radial growth phase present, vertical growth phase present, mitotic figures/mm1 fewer than 1, regression present - focal, TILs non-brisk, then comment says "dermal mitotic figures are not identified."  So, first, I'm not clear on why they list mitotic figure as <1 but then say mitotic figures are not identified.  The other reports only listed <1 because they did identify a mitotic figure (otherwise would be 0).  Something else it says which I don't know what it means is "Anti-PHH3 fails to reveal dermal mitotic figures."  What I'm also confused about is that the other reports that did list VGP as present did so because they identified dermal mitotic figure.  Here, it says dermal mitotic figures are not identified, but yet they still list VGP as present.  I thought the only 2 reasons for listing VGP were either dermal mitosis or dermal nests larger than epidermal nests?  The comment says, "Sections demonstrate an atypical compound melanocytic prolilferation with both nested and single melanocytes along the dermal-epidermal junction with pagetoid upward migration and cytologic atypia. There is focal effacement of rete ridge with underlying dermal fibrosis, inflammatory infiltrate and pigmented macrophages consistent with focal regression. Within the dermis are nests of hyperchromatic, atypical melanocytes which appear histologically similiar to those at the dermal-epidermal junction. These nests are confied to the papillary dermis. Dermal mitotic figures are not identified. There is a small focus of banal appearing less hyperchromatic melanocytes just beneat the associated fibrosis that might represent an associated intradermal nevus."             The other reports also mentioned partial focal regression, but I thought if regression was not a significant part/extensive, then it's ok.  Should I be more concerned about this regression, that it may have actually been deeper than 0.34mm and then regressed?  Or is partial focal regression not considered extensive?  I'm not clear what inflammatory infiltrate and pigmented macrophages mean?  Thanks for any help/clarification out there.

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deardad's picture
Replies 5
Last reply 6/15/2012 - 6:41pm
Replies by: deardad, Linny, LynnLuc

This sounds really crazy but has anyone heard of ones purchasing braf inhibitors online? Im think my dad is eligible for any trials and therefore is basically left to die. I know that if they had given him the MEK maybe there would be chance or more time. I found a company that sells Dabrafenib PLX-4032 1000mg $2,900.00 and a MEK inhibitor for a similar price. Is this extreme and I'm getting deluded or has anyone thought about this possibility?

Thanks

Nahmi from Melbourne

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yoopergirl's picture
Replies 10
Last reply 6/18/2012 - 4:55pm

At my last doctors visit on June 4th he said I have more mets in both of my lungs and some fluid also. This week I have been coughing something awful so I called him and was told it is from the lungs and to suck on cough drops and use syrup. Right after I get up in the morning the coughing is non stop and then I hurt so bad. I am having a biopsy on my tumors on June 27th and see the doctor a week later, then will start the clinical trial, my question here is has anyone had this problem and what did you do for it or is there nothing I can do. This cancer sure sucks, am hoping for a cure soon.

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Rdmstm's picture
Replies 4
Last reply 6/15/2012 - 9:59pm
Replies by: Rdmstm, Janner

Ten days ago I went to my dermatologist for my yearly body scan. She removed a new freckle/mole, but didn't think it would be a problem. To my absolute shock, my DR informed me that I have melanoma. Below is the Path report from this original excision. I'm meeting with surgeons next week to discuss surgical options for a second excision,  and am extremely terrified they may tell me something very bad. I've been consuming myself with the internet, and other Path reports sound more detailed. Are these path reports of the second excisions?? On the below report I'm concerned that there is no depth measurement and the Microscopic description sounds frightening. Can anyone give me insight of the below terminology???  

Diagnosis: melanoma in-situ, early lesion
note: the lesion extends to lateral margins)

Clinical Data History:
shave w/ margins, 0.2 x 0.3 new 2 tone macule, R/O A typical nevus

Gross Description:
a shave biopsy of skin measuring 9 x 5 x 1 mm. 

Microscopic Description
Melanocytes, some of which have hyperchromatic nuclei, are arranged as solitary units and in nests with the epidermis.  There is poor circumscription and in foci melanocytes arranged as solitary units predominate over nests.

Still trying to awaken from this nightmare....

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Kimberly Duncan Watts's picture
Replies 4
Last reply 6/15/2012 - 10:45pm

Thanks ever so much for the prayers! Scan results were "unremarkable"! How I've learned to love the word! So for the second time since March, I am NED!!!!! Praying for these three little letters for ALL OF US!!!! Everyone have a beautiful day

I can do all things through Christ who strengthens me.

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Anonymous's picture
Anonymous
Replies 0

Hi Everyone,

I have learned so much from reading the post over the last 6 months.  I was wondering if anyone has experienced resistance to Zeboraf and how it was determined?  Also, other potential treatment options once resistance develops.

 

Thank you,

A

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/15/2012 - 1:18am
Replies by: deardad

Hi Everyone,

I have learned so much from reading the post over the last 6 months.  I was wondering if anyone has experienced resistance to Zeboraf and how it was determined?  Also, other potential treatment options once resistance develops.

 

Thank you,

A

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