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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Anonymous's picture
Anonymous
Replies 6
Last reply 6/17/2012 - 11:00am
Replies by: Pattyka, Anonymous, jimjoeb, Carver

Hi everyone, (sorry this is long & thanks for taking the time to read my post)

I am new to MPIP and need your help. I follow the posts but this is the first time I am posting. You are all wonderful & I hope you have some advice for me. I am stage 3C. I have had 3 sugeries (2009, 2010, 2011) to remove 3 recurrences all in the same place in my thigh.

My most recent surgery was 2 weeks ago today. My tumors/ subqs recurrences seem to continue to grow in the same area in my thigh. My surgeon indicated that he would have to take out the new tumor all the way down to the facia of my muscle & then also cut out the old scar area & beneath to get clear margins.

He told me that my new scar would only be 1 inch longer than my old because he was going to use the old scar area. He said that he would have no problem stitching up the area on my thigh that I would have more than enough skin to pull together. I am 62 & my skin is saggy skin so my skin would be able to be stretched. At the pre-op appointment he said this was an easy surgey for him.

When I woke from surgery, my thigh was bleeding through the gauze over my incision. This was the first time that any of my incision on my thigh ever bleed. Also, My surgeon made the incision approximately 6 inches longer beyond the old scar because he told me that he could not close because my skin came together funny & my skin looked like rabbit ears at the ends of the incision so he kept cutting my skin until the ends came together better.

Plus I am bruised from the top of my thigh to below my knee (both sides of my leg). The top of my leg is swollen all the way down to my knee. I have numbness from my thigh to my knee. I knew that he would be cutting nerves so I understand why I am numb. Maybe I am being paranoid but I suspect that he is not telling me what really happened because of the extensive bruising. The surgeon told me that I am bruised so much because of cutting close to veins.

Now that you got the picture, yesterday the surgeon confirmed that I also have a large hematoma at the top & along side of my incision & a large seroma further done the incision. The surgeon recommended that both the hematoma & seroma will eventually dissolve after a few months & I need to be patient. He rather not use a needle to drain/resolve the hematoma & seroma because it would risk infection.

Needless to say, I am very upset. I am very active & run daily. Now I can barely walk. It is painful & the hematoma & seroma do not seem to be going down. My surgeon told me to comeback to see him in 1 month and to continue my normal daily activities, but not walking too much and watch for signs of infection. Does 1 month seem like a long time to wait to see the doctor again.

Thanks again you for taking time to read my long story. I would appreciate any advice, and/or your experience with hematoma & seroma. Any recommendations what can be done to resolve hematomas & seromas. Can ice or heat help reduce the swelling? Any other comments and feedback about my situation are sincerely appreciated.

God Bless you all

Suzy

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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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Lucassi's picture
Replies 7
Last reply 6/16/2012 - 2:14pm

Mike had a CT scan on 2/21/12 that showed a 12 mm pulmonary nodule in the upper left lobe.  The CT report states that it is highly suspicious for metastatic disease.  The oncologist has ordered a PET scan for next week.  Although there is a chance that it is not cancer, I am very concerned that the melanoma has spread.  Has anyone else had pulmonary nodules that ended up not being metastatic disease? 

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Bob B.'s picture
Replies 45
Last reply 6/15/2012 - 11:42pm

Based on a self-diagnosed melanoma (Stage 1b due to Clark IV, Breslow 0.63-.8 (2 reports), mitotic rate zero, regression etc- innocuous) I had excised in 2010 with no recurrence, I have the impression there is widespread:

   (1)  Overuse of medical tools to treat early Stage melanoma.   Biopsies, Scans, SLNB's, blood tests, etc.

   (2)  Reliance on 1960's Clark to stage melanomas.

   (3)  Underuse of Mitotic Rate to stage melanomas.   Lack of standardization of histology parameters.

   (4)  Exaggeration of the effects on melanoma of UV exposure, understating of UV necessity to fix Vitamin D-  protection against melanoma.

For eight months (since July, 2011)  I have been tracking a second tumor 20 cm from the first (above), self-diagnosed again as melanoma.   About to have it excised WITHOUT a biopsy, pathology to be done afterwards using two independent laboratories.

Any comments on the uses and disuses of medical science to treat early Stage melanomas?

 

 

 

  

The Only Good Legend is a Dead Legend.

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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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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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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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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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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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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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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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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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Nicky's picture
Replies 10
Last reply 6/15/2012 - 1:32am

I was reading a research article about a group of women workers who worked in the same building.  Many of them were diagnosed with breast cancer and the only similarity  they had were that they all had the mouse mammary virus.

It is also interesting that the new vaccination against a particular type of Human Papillimova Virus strain (HPV is a common virus which quite a number of the general population have) will prevent Cervical Cancer.

It may be a LONGSHOT but you also wonder if Melanoma could also be triggered/caused by a common virus and could be lying dormant with some of the culprits being the most common viruses for example like HPV or the cold sore virus.

I always thought it was odd that half my school sports team from 20 years ago ended up getting melanoma and my coach died of it later in life but it didn't occur until 20 years after.  I know a few of us had mononucleorosis (glandular fever) which was quite contagious at the time.  

As a survey, (anonymous if you wish), every remember catching a particular  virus, past or present?

 

 

 

 

 

 

 

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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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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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