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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himynameiskevin's picture
Replies 13
Last reply 8/2/2012 - 7:22pm

Well the good news is, I saw my radiation oncologist and she informed me that there is nothing new showing in my brain besides the ones that were treated and the three that are going to be, I had another mask fitted while I was in and will be having one (hopefully last) session of SRS on Monday morning to finish these things off. She told me that there is still swelling around some of the lesions, and that this is natural for the first few weeks after radiation, so unfortunately it's recommended that I stay on the steroid and anti-seizure meds for the time being, but taper off as soon as possible down the line.

I also saw my regular oncologist and he has officially put in the order for me to start Zelboraf, unfortunately with the time it takes to process the order, get authorization and handle other medical variables I don't understand but know are necessary, I won't be able to start it until 3/20. Three  weeks. :/ Oh this waiting is always the hardest part... But a plan is in order and maybe as the SRS does its thing, some preemptive thoughts of a possible hopeful outcome in the future will trigger genuine optimism and make this time pass quickly. A day at a time. That's my goal.. a day, a week, a month at a time... and then maybe one day I'll be 90 with quite a story to tell.

Thank you all for the ongoing encouragement and support.
-Kevin
 

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himynameiskevin's picture
Replies 15
Last reply 8/2/2012 - 12:00am

I've been suggested to stop Zelboraf for awhile as I have had more progression in my head.

After stabilizing my head via SRS or WBR,  think the idea is that I'll do IL-2 again or give Temador a shot, while getting back on Zelboraf.

I think I've decided my dose this morning will be my last for now and I'm just wondering, to those out there who were on it, but aren't anymore, are there any side effects from withdrawal you've experienced or I should know about?

 

Thank you for any information.

-Kevin 

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Replies by: kelty, sjl, Anonymous, Janner

I am a woman in my 60s and was diagnosed about 6 years ago with a Clark's level 11 melanoma on my forearm (Breslow .25mm - no more info.) that my husband insisted I have checked. Had WLE and was told to come back yearly. I really never gave it another thought, and certainly never expected to have another one. A few weeks ago, I was diagnosed with one melanoma in situ on my lower leg, and a severely atypical mole on my upper arm. I had WLE on each. My current dermatologist said I will need to be vigilant with self-exam, because the mole that turned out to be melanoma in situ did not look at all suspicious to her. She biopsied it because I asked her to. She is very supportive of my finding a good melanoma clinic and also seeing her at 3 month intervals. Most convenient would be Pittsburgh (Hillman?), Philadelphia, Baltimore, or Washington, but I would also consider Chicago or Minneapolis. I am looking for a center in which monitoring for new primaries via total body photography is a focus. It has been hard to find information about this because centers are emphasizing their expertise in detecting and treating metasasized melanomas. I would of course value their expertise in these areas as well, because I hope to have a long-term relationship with the center I choose, and realize I may be in a position to need those services in the future. For now, though, my focus is on catching any new ones at an early stage, and I have no confidence in my ability to do this on my own. I am hoping that one of you may know something about centers in these cities, and give me a place to start at least. I've been impressed with the level of expertise and plain old wisdon on this board. Thanks for your help!

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Liz C's picture
Replies 3
Last reply 8/1/2012 - 12:22pm
Replies by: Liz C, aldakota22, Anonymous

Nine years after my last melanoma surgery, I was just diagnosed with a new primary.  Stay vigilant, folks!

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Jennholbert's picture
Replies 2
Last reply 8/1/2012 - 8:19am
Replies by: AngelaM, natasha

I was diagnosed tonight at 7:30 by my sweet dr who wanted to give me the info as soon as she received it. I had a mole on my right calf for a good 4 years. Last Friday (7/27) I had the mole removed along with good margins. The wound has been left open ...oh how nasty it looks! :)

I was surprised how fast the results came back, considering the lab only got the biopsy yesterday morning. I was told that it is an early stage melanoma with shallow growth. Dr mentioned how deep it was, but my head was swimming. So that's good.
One slide showed that I had a regression so I'm being sent to an Oncologist for my follow up procedure and possible look at my lymph nodes.

Tomorrow I am going in to have my wound checked and to talk more. Can anyone give me a list of questions to ask my dr tomorrow and also the Oncologist?

Thank you so much!

Jennifer

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Donna19702's picture
Replies 1
Last reply 7/31/2012 - 1:30pm
Replies by: gabsound

my son Michael was diagnosed with Spitzoid Melanoma Oct 2011, he's 27. He was stage IIIC, which the cancer started out as a mole on his foot then spread to his groin lymph nodes. 4 out 14 that was removed returned as cancer. He was only able to complete 4 months of the interferon due to severe weight lost, anxiety, fatigue along with others. His PET Scan came back excellent and was told that they would see if the Pharmaceutical for Pegylated interferon would approve him. If they denied his request they won't put him on anything. I feel that there has to be another treatment out there for him and they can not just say NO!

 

Could someone please let me know if you have any suggestions that I should bring up to his oncologist.

 

Thanks

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bikerwife's picture
Replies 1
Last reply 7/31/2012 - 7:50am
Replies by: deardad

Had 5 mets removed from brain in feb sucessfully. Lastest scans show 2 more very small ones not sure if new are was there before and 2 little to see. Due to do gamma knife again in aug.

He is taking zelobraf and in four weeks all his visible tumors have completely disappeared. Hoping one inside chest cavity on one on kidney are shrinking also.

I'm worried. About doing gamma knife again but our dr assures us it will be fine and that they can get them.

What God leads u to he will. Lead you through

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Steve2142's picture
Replies 12
Last reply 7/31/2012 - 7:04am

Hello -

A small lesion with a high mitotic rate was removed from my cheek two weeks ago.  The SLNB showed three microscopic deposits in one of two nodes that were removed.  I go see the Doctor on Tuesday to discuss a CLND in the neck to remove 50 more lymph nodes.  This surgery makes me nervous but I feel relatively calm in general as there is nothing I can do about my cancer or prognosis today...except read, learn, and hear what you have to say.  I am in the process of preparing a bunch of questions for the consultation including if this is Stage IIIA or B (due to the mitotic rate).  I have a pet scan Friday - I assume this is to determine if it has spread to the brain/liver/lungs/bone thus making a CLND irrelevant.

Please share your recovery story if you had a similar CLND.  How long before you went back to work and felt relatively normal physically?

I have also been separated for a little under a year and this adds a little relationship complexity to the situation.  Feel free to share on this topic as well.

Thank you!

Steve

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rjcravens's picture
Replies 5
Last reply 7/31/2012 - 6:23am

Question- About a month and a half ago I had this upper resp infection that made its way around out house. Well, the upper resp. part improved but I had this awful cough that would not go away and was terrible at night or anytime I laughed and did any activity. So the week before last, I went to doc. (primary family) He said I prob had some stubborn brochitis and gave me advair, z-pak, and cough syrup. Well the cough is better. However, the entire time I have had this stabbing pain that feels like its between my lung and spineand has a lingering burn. When i cough it hurts terrible, but even when I am just sitting here this stabbing pain comes and goes. I tried aleve and nothing. But when I went to doc they did a chest xray when they dx the bronchitis. Wouldn't it have shown up on chest xray if something to be concerned about?

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Maggie23's picture
Replies 5
Last reply 7/31/2012 - 6:08am
Replies by: LynnLuc, Maggie23, gabsound, Anonymous

My mother has been recently diagnosed with stage 4 Melanoma.  It is in her lungs and lymph nodes.  We have just received the results of the BRAF mutation and she is negative.  We are all confused about this and I am having a difficult time finding information online to tell us if this is a good result or a bad result.  All of these posts have been very helpful to us and I was wondering if any of you knew anything about BRAF mutations?

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Gene_S's picture
Replies 6
Last reply 7/30/2012 - 11:51pm
Replies by: awillett1991, ToddC, Gene_S, Anonymous
I am convinced that my melanoma was caused by "The lack of sunshine" since I worked over 40 years sleeping during the day.
I also believe that this is the reason that melanoma rates are skyrocketing today. People that never get quality sun on their skins are the most likely to get cancer (all types).  Best wishes and get some Sun...   Gene
 
See the article "Sunlight and Melanoma" at
 

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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LynnLuc's picture
Replies 9
Last reply 7/30/2012 - 8:47pm

Stage 4 NED 2 years 4 months!!~ 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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Gene_S's picture
Replies 2
Last reply 7/30/2012 - 7:23pm
Replies by: ToddC, Gene_S
The Healing Power of Our Skin

by Sandra Barger (2007)

Our skin is the largest vital organ of our bodies. It is a living, and functioning organ regulating temperature, protecting from bacteria and germs by the acidic properties, keeping everything in place and working with your kidneys and liver to detoxify. Our skin is the body's first line of defense. It is easily damaged by both external causes - sunlight, pollution- and internal factors such as smoking and diet lacking in vitamins.

 
Our skin has the ability to heal itself and remain healthy with the use of antioxidant vitamins, A, C and E both internally and externally. When you cut yourself your skin is able to repair itself and has the ability to recover from sunburn. Dr. Perricone from the "Wrinkle Cure" suggests that your skin can forgo a face lift with the use of topical antioxidants.
 
In recent years we have seen skin patches for nicotine/heart medication/sea sick/birth control because of the skin's delivery ability. What you put on your skin is absorbed into every organ of your body. According to Dr. Rita Goad if you peel a clove of garlic and but it between your toes within 26 seconds you will taste the garlic.
 
Today there are animal by-products used in skin care products that are toxic to our bodies. Dr. John Lee, MD. states in his book "What Your Doctor May Not Tell You about Menopause" that mineral oil absorption causes PMS symptoms and hormone imbalance. Mineral oil blocks the skin's natural breathing and excretion functions. Mineral oil can offer positive results when used for specific medical conditions such as laser surgery, burns and skin grafting in setting up a temporary protective barrier to aid in skin repair.
 
The Cancer Prevention Coalition Press release June 17, 2002 states: "Most scientists agree that cancer is initially caused by industrial chemicals and or radiation exposures.  Everyone comes in contact with these chemicals in food, water, air (Tobacco smoke), but the biggest risk now appears to be absorption and inhalation of chemicals in hair care products, mouthwash, cosmetics, lotions, skin care products, suntan products...etc"
 
The US government studied 3000 chemicals used in cosmetics and personal care products and found that: 1 in 3 of the ingredients were toxic, 1 of 3 were toxic enough to kill, 1 of 10 caused biological mutation and 1 of 11 caused reproductive problems. The FDA does not regulate the cosmetic industry as long as the manufacturer lists the ingredients on the label.
 
What is used on the skin effects everyone's health requiring consumers to educate themselves and read labels. By using pure, safe and beneficial products on your skin you can protect your self from absorption of toxic chemicals into your body.
 
With the use of botanical oils that resemble our own skin's natural oils the skin is able to absorb ingredients and work with them just like the oils that sit on the surface of your skin."
 

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Replies 4
Last reply 7/30/2012 - 6:37pm
Replies by: rbruce, Candi13, LynnLuc, melmar

Hi Margo,

 

How are you doing on the Merck trial??? Any side effects?

I think that you mentioned your second set of scans would be in July. I hope that you found no cancer & NED.

My brother, was dx 2010-stage 4. He is on this trial in San Antonio. His last scans showed 50% shrinkage on 3 tumors- 2 lung, and liver.

It is nice to share info on these trials.

Anyone else on this Merck trial??/ Please post how you are doing so we can share hope & encouage each other.

Wishing everyone the Best.

Tim's Sister, Annie.

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