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 12
Last reply 7/24/2012 - 4:27pm

Well this morning marks two years since being/knowing I was stage IV. A long journey it's been, and this mornings brain MRI has me feeling a little like I did two years ago. The images show some new tumors, there were a few tiny areas that were left untreated when I started Zelboraf. So maybe those, maybe a couple more? Radiation oncologist is going to get all the details out of the scans to have all the info possible come Wednesday morning, when I see her again, to discuss the options and treatment. I'm guessing more SRS or trying WBR for the first time, I don't know. She said they were small though, none over a cm. And told me not to lose sleep over it. I won't, I'm experencing a sense of calm, not sure what to make of that.

Anyway, I should have PETCT soon, not sure the protocol from here, if they're just going to take me off Zelboraf or if there are any options left. I may be out of the loop, I know most trials won't accept someone with brain mets. Despite the status of my head, I feel close to normal, no noticible strange neurological symptoms. If anyone knows something new I'm unaware of, I'd like to know. I've done IL-2, Adoptive Cell Therapy with young TIL and IL-2, a few rounds of SRS, Yervoy, and Zelboraf. Thanks in advance.

Warmly, -Kevin

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Thinking of her, praying for her, and sending her hugs!

Take Care,

 

Sherron, wife to Jim FOREVER

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Wally's picture
Replies 10
Last reply 7/24/2012 - 10:31am
Replies by: Wally, Lilbrat, Minnesota

I had an in-situ malignant mole removed from my ear in 1006 and this progressed to my RML resulting in a Lobectomy in 4/11. Following this op I experienced continious pain in my chest - rib area. This was ascribed to nerve regeneration so no further action taken. My 4 monthly check-ups were of little consequence with only a Mel blood count taken, which showed low count and an NED dianosis. Of late I have had severe body aches starting at my hips to my legs and also my shoulders and hands. Felt much like arthritis or gout, I suppose. Walking became difficult. My GP brushed this off as old age. My Oncologist was a little more supportive and suggested some X-rays. These have indicate a possible Pleural Effusion.

My question is - are these the typical symptoms of a pleural effusion and what are the chances of this being a malignant effusion?

if the result is possitive (I go for a pet scan on 18/7 to determine the extent of this finding) what is the process. The Oncologist did not discuss any of this with me, sauying lets wait and see what ther outcome is first. I find this difficult as I need to prepare myself for variable possbilities.

Can anyone out there please  help me with answers as it is a long wait to 18/7. Best regards to all and may you all experience speedy recoveries. Wally from RSA.

The sun shines at the dawn of each new day even though it may not always be visible.

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LilithFaith's picture
Replies 29
Last reply 7/24/2012 - 7:47am

My mother, Tracy Lee, stage 4 melanoma lost to a long hard fought battle of her cancer today at 12:12. Without everybody's prayers the medication she was on, BRAF starting in August, she would not have made it to Christmas. I am her daughter and she is also survived by her husband Neil and my siblings Bailey, 21, chandler, 19, myself, 16, Kalla, 14, and her granddaughter Stella. Thanks to the people across the country praying for her and active people on this board who gave her hope through her battle. She is in a much more peacful place.

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

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LynnLuc's picture
Replies 11
Last reply 7/24/2012 - 1:59am
 Asking prayer for Linda Protas Haley ..she posted this at 747 AM---"we come home from the beach. I've lost some of me speach and type spelling! He husband is tacking his speaking and taking his shower.Then he are going to the hipital to hours from here. I hate this diseash! Harent told family so not post post ofram fb. ugh.................. hope you get hopre this. This only is just a jf hours! jeen pranayers"
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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bikerwife's picture
Replies 4
Last reply 7/23/2012 - 10:26pm

I feel like shouting and screaming all at the same time. Lynn has been on z for 4 weeks know all the little tumors on outside body have either disappeared are scabbed over. While the side effects have been few. Some mild joint pain and some killer sunburn. We learned hard way on that. Things were going pretty good until our brain scans all 5 they treated are gone. The sad news is they are 2 small ones the size of pin heads maybe they were there before and to little to see or maybe they are new can't really tell. Dr says we can wait awhile before deciding what to do or go ahead and gamma knife them. Lynn choose to go ahead and gamma knife the little pest.

The dr new I was upset and said mrs price we got them last time we will get them this time. Guess z and yervoy didn't work in the brain area. I wanna be strong but its getting tough. My lynn has the good attitude and says we will do what we gotta do cause I'm not giving up or giving in.

Many prays and love to each of you as. You fight.

What God leads u to he will. Lead you through

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Ronskidtexx's picture
Replies 2
Last reply 7/23/2012 - 9:41pm

I had surgery March 5th to remove melanoma tumors from neck (dissection) and from soft mass near rib cage. I had 5 radiation treatments to neck area. As of mid July, with recent scans, I am NED. No further treatments are scheduled. Is this normal? Just scans every 3 months? My head and neck surgeon said "see you in 6 months." I am going to MD Anderson here in Houston, so I feel I am in good hands. My oncologist feels Interferon would not benefit me and why put me through the effects. I do feel blessed with the NED status but the fear does not go away. With the neck dissection, 57 lymph nodes were taken out-all clear of melanoma. I have an unknown primary as well. I am walking around like nothing ever happened. The fear factor gets to me, though.

Just wanted to get a little feedback on lack of follow up treatments not being administered or if this is common.

My story of my journey can be found at Aim at Melanoma, Survivors stories, Stage IV. I will friend you in Facebook as well.

God bless,

Ron Whelchel

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Ronskidtexx's picture
Replies 9
Last reply 7/23/2012 - 9:34pm
Replies by: Ronskidtexx, Anonymous, ScagMom, KRob, Linny, awillett1991

I had surgery March 5th to remove melanoma tumors from neck (dissection) and from soft mass near rib cage. I had 5 radiation treatments to neck area. As of mid July, with recent scans, I am NED. No further treatments are scheduled. Is this normal? Just scans every 3 months? My head and neck surgeon said "see you in 6 months." I am going to MD Anderson here in Houston, so I feel I am in good hands. My oncologist feels Interferon would not benefit me and why put me through the effects. I do feel blessed with the NED status but the fear does not go away. With the neck dissection, 57 lymph nodes were taken out-all clear of melanoma. I have an unknown primary as well. I am walking around like nothing ever happened. The fear factor gets to me, though.

Just wanted to get a little feedback on lack of follow up treatments not being administered or if this is common.

My story of my journey can be found at Aim at Melanoma, Survivors stories, Stage IV. I will friend you in Facebook as well.

God bless,

Ron Whelchel

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LynnLuc's picture
Replies 1
Last reply 7/23/2012 - 8:38pm
Replies by: Anonymous

 

Melanoma researchers have been struggling with this question: Which mutations drive this cancer that lead to ultraviolet (UV)-induced genetic damage in tumor cells caused by sunlight exposure?

There have yet to be any mutations conclusively tied to melanoma. The great quantity of these passenger mutations has pulled away from the search for genetic driver mutations that are most important in melanoma development and progression.

Scientists at the Broad Institute of MIT and Harvard, the Dana-Farber Cancer Institute and The University of Texas MD Anderson Cancer Center created a method to mark the drivers while amongst a great amount of passengers. They then found 6 genes with driving mutations in melanoma, three having damage inflicted by UV light which causes recurrent 'hotspot' mutations. The research can be found in the July 20 issue of the journal Cell.

Co-senior author Lynda Chin, M.D., Professor and Chair of MD Anderson's Department of Genomic Medicine, explained:

 

"Those three mutations are the first 'smoking gun' genomic evidence directly linking damage from UV light to melanoma. Until now, that link has been based on epidemiological evidence and experimental data."

"This study also is exciting because many of the recent large-scale genomic studies have not discovered new cancer genes with recurrent hot-spot mutations, a pattern strongly indicative of biological importance," added Chin, who also is scientific director of MD Anderson's Institute for Applied Cancer Science.

According to the researchers, each of the six new melanoma genes they identified are all significantly mutated and provide possible targets for new treatments.

Thousands of Potential Mutations Recognized, Only Need A Few Dozen Significant Ones

There had previously been a great deal of important mutations recognized as melanoma drivers, but they were falsely identified because the majority of these mutations do not seem to be caused by direct damage from UV light, including:

  • BRAF (V600)- present in half of all melanomas
  • NRAS (Q61)

Although those known mutations are valuable, there is still missing information. Compared with other types of solid tumors, Melanoma has higher genetic mutation rates. Most are attributable to passenger mutations resulting from damage by UV light, resulting in a DNA alteration called a cytidine (C) to thymidine (T) transition.

Chin, along with Levi A. Garraway M.D., Ph.D., associate professor at Dana-Farber Cancer Institute and Harvard Medical School, and senior associate member at the Broad Institute, used 121 melanoma samples paired with normal DNA and sequenced the exons (active portions of DNA that are involved in protein synthesis). The experts found 86,813 coding mutations. The consequential mutation rate was larger than in any other tumor type reported.

http://www.medicalnewstoday.com/articles/248105.php?sv=d
 

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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Hi Everyone,

This week Community Health Resource Center is hosting a Melanoma Survivor Panel in San Francisco on Thursday July 26th from 4 pm - 5:30 pm. Panelists from stage I, stage II and stage IV melanoma plus an RN educator will be sharing stories and experiences. The panel will be facilitated by Social Worker, Kristy Buck who also facilitates our melanoma support group every third Thursday from 2 - 3:30 pm. Refreshments will be provided, and registration is free. Donations of any amount are accepted and appreciated. To register, call 415-923-3155 or email cpmcchrc@sutterhealth.org.

We offer educational events, support groups, health screening, and counseling to community members to support and maintain wellness and prevent disease. Information about all of our wellness events can be found at www.chrcsf.org .

We hope you can join us!

All the best,

-Melissa

 

Community Health Resource Center... the next step to better health

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chalknpens's picture
Replies 22
Last reply 7/23/2012 - 4:46pm

I saw my orthopedist today ... told him of the open wound on my arm, going for closing stitches this afternoon, as third biopsy came back with clear margins. He asked me who my oncologist was. I said I didn't have one. He said I might want to get one.

When did you get an oncologist?

I am not perfect, but I am enough.

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RobinS's picture
Replies 2
Last reply 7/23/2012 - 10:21am
Replies by: LynnLuc, Linny

Hello,

My mother has stage 3C melanoma and is looking for a vaccine clinical trial.  She is currently cancer free after removing her all lymph nodes and margins from that region.  Is anyone aware of a clinical trial using vaccines for a person who currently has no tumors?  

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saddaughter's picture
Replies 5
Last reply 7/23/2012 - 8:57am

Although I've never posted before I have been following this site since my dads melanoma recurrence last year. I wanted to say thankyou cause even though I never logged in I found an abundance of information on this site that not only helped my dad make decisions about trials but helped me understand what was going on. After dad was first diagnosed in 2003, had surgery to remove mole on chest and lymph nodes and participated in interfuron trial at RPA sydney. Went for his regular checkups and life went on. I was not aware what a nasty cancer this is and that it could come back suddenly and destroy you. After 8yrs clear came back in his brain last july. Had mets removed and WBR. Put up fight of his life but sadly list his battle on mothers day, 10 months later. Thanks so so much to everyone who posts on this forum so that those of us with no idea can be informed of the journey ahead of us. The information you provide is valuable to those who need to know the truth. Dad was diagnosed at 70 and didn't make 71 but said don't worry ive had a full life and beautiful children and grandchildren,unlike many on this forum. He was the last one in his trial to pass. He knew then how lucky he had been.

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Gene_S's picture
Replies 8
Last reply 7/23/2012 - 8:55am

I have debated posting this news, but my wife has convinced me that it may offer hope to others on this forum! My latest scans now put me in the NED (no evidence of disease) group.  It was a tough battle and I am very grateful and hoping that other here will keep fighting this monster of a disease. I am very thankful to my God above me as well as to my family (especially my wife Judy) for this very happy day. Best wishes,  Gene

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

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himynameiskevin's picture
Replies 15
Last reply 7/23/2012 - 8:51am

Hi everyone. I'm just checking in with a quick update. As the subject of this post says, I've been on Zelboraf for 4 months and 13 days now. And I think I'm feeling alright. Besides the extreme photosensitivity, I seldom have joint and muscle pain/weakness anymore. Theres been some gastrointestinal irritation,  and definitely have a bit of skin irritation - a few spots of irritation, like roughness or a goose bump type feeling. Nothing major though. I've had a slight headache (random pains that come and go quickly) and a little sinus congestion for the past two days. But I did take a short trip to my hometown, Tucson, which was 100degrees one day and thunderstorms and hail the next, and a a hotel with A/C, back to San Diego on warm day with no A/C here. I'm hoping this headache was just because of all the changes in climate.

I'd be lying if I said I wasn't scared though.

My last PET/CT was late April and my last Brain MRI was May 1st. Both of which looked good and showed that Zelboraf was working. For the most part everything feels ok, physically and neurologically, as far as I can tell. I've been off the steroid for three months now and just need my head to be clear or on the mend to maybe qualify for any trials, if there's any more out there I'd be fit for. I have PET/CT in the coming weeks and a brain MRI on Monday, coincidentally, exactly 2 years from the day my dermatologist had to break the news to me and this new life started. I'm hoping to update you all with a good report. We'll see how it goes. Thanks for hearing me out. I'll talk to you soon.

Warmly, -Kevin

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