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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ashlee12's picture
Replies 1
Last reply 3/24/2015 - 1:45am
Replies by: Janner

So I have this mole o have been watching since about December... It is small but kinda a weird shape... Well I have started taking pictures of it back in January so I have about three pictures of it ... Tonight I showed my friend who is going to be a nurse and I also showed her the pictures ....she told me that it is weird and I should have it looked at because it has changed slightly .... Well now I'm kinda freaked out I mean I am gonna call tomorrow but like now I'm having racing thoughts about cancer again and like even tho it's small what if it is a staged cancer this timw like a stage 2 or something idk I'm just scared 

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Leslie'sHusband's picture
Replies 3
Last reply 3/23/2015 - 9:28pm
Replies by: JoshF, Jubes, yazziemac

It's been a while since I've even been on this forum, let alone post, so I thought I'd post an update.  For those who may not remember, my wife Leslie was diagnosed with melanoma (ended up being 3b) on her left thigh, with the sentinal lymph node testing positive in Feb of '14.  After three surgeries, the last being a complete lymph node dissection of the left groin area done at Duke Cancer Center in April '14, she's doing well.  None of the additional nodes removed tested positive.  She had CT scans done in September '14, and last week, at Duke.  Both were clear, with no evidence of melanoma.  There is a lesion on her liver that caused a little concern back in September, but it was determined to be benign after a closer MRI of the area.  The docs said it is likely caused by hormones in birth control pills and is very common, nothing to be concerned about.  That lesion was unchanged in last weeks scan.  We will be heading to Duke every 6 months for further scans for at least the next four years.  I'm guessing that this means 1 year NED.

Dave

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GAngel's picture
Replies 24
Last reply 3/23/2015 - 12:52pm

Hello all, I am fairly new to the site.  I have gained valuable information from all of you so thank you for taking the time to share your stories with others. My husband, Rudy, has been on Zelboraf since mid March 2013, after being diagnosed with Stage 4, with mets in his liver, the previous month.  His tumors have shrunk dramatically, so we are very happy with the results. The only problem he had was the with the severity of the side effects, which were so debilitating that they reduced his dosage to 3 pills x a day and an every other week schedule. His last visit to the oncologist a few days ago revealed that he was still responding positively. Despite the great results we opted for the new treatment because  his oncologist advised that the side effects are less severe, and the results better, so this is our hope.  I was wondering if any of you are on the combo and if so how are you doing?

Thanks for reading and I will keep you posted on my husbands progress! I am praying for all of you who are fighting this dreaded beast, you are true warriors, may the Lord be your strength through it all! God Bless you and yours.

Sincerely,

Gina (wife to Rudy)

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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Nell's picture
Replies 6
Last reply 3/23/2015 - 12:32pm
Replies by: Issy, arthurjedi007, Nell, Mat, rosa1

Looks very probable that I will be put on this combination soon. I am stage IV...braf+

Growths in my lungs and liver are stable since Yervoy infusions last July, but there is a node/growth in the chest wall that is increasing in size.....most likely melanoma, as this was the original site. I go back for more scans in May, and if there is a significant increase, I will start trafinlar + mekinist.  Can anyone tell me about your experience with these drugs?  The literature they gave me at the office was kind of scary.....Also, there is no mention of how long patients usually stay on these drugs.   Is there a scheduled plan?     Thanks. I love this forum!        Nell

One voice can make a song; one life can change the world.

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yazziemac's picture
Replies 7
Last reply 3/23/2015 - 10:48am

Hi all

I've posted several times previously--my husband is Stage 4, multiple mets, currently on Yervoy.  I am struggling severely with not knowing the future.  I don't expect anyone here to tell me what the future holds, because no one knows!  But, if I could have any help in how to  manage this "land of limbo", I would really appreciate it.  I try to live one day at a time, but I'm finding it very hard.  Does Pete (my husband) have only months to live? 2 years?  5 years?  No one knows...But I have to make decisions about my career (I recently decided to take a leave from my job), and I feel the need to wrap my head around what my life is going to be like going forward.  But, it seems that I can't do that because it's a big grey area (that's how Canadians spell grey, haha).  Are these treatments "buying time" and that's the best we can hope for?  Is there a chance this cancer could be cured?  What are we really and honestly dealing with??  These are the questions that I go to sleep with and wake up with--no answers to be found.  Thanks for any insight on this!

Yasmin

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csellers23's picture
Replies 14
Last reply 3/23/2015 - 8:35am

So 6 weeks ago my husband's scans came in. And after taf/Mel combo. Yearvoy whole brain radiation and srs the results where horrible!!!! To many brain Mets to count, cancer growing everywhere! The put him on keytruda. When we went back 3 weeks later his LDH levels went from 800 to 300. They had planned on sending us home on hospices. But the gave us the 2nd round of keytruda. Today we went back and the doc said keytruda is working in his brain. I ask him how he knows and he said because he's alive. If it wasn't working in his brain he would have died 2 weeks ago! He also said keytruda does not work one or two months like some drugs can but that now we are looking at YEARS! We went in the matter of 6 weeks from you have 3 weeks to live to years. This keytruda was our last hope. And thank God it's working!!!! People ask a lot if keytruda can cross the blood brain barrier, yes it can!!!! The doc ended out appointment saying you are no longer dying!!!! Best words ever. NEVER GIVE UP HOPE!!!!! The doc is even amazed Thank God!!!

Crystale

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ecc26's picture
Replies 10
Last reply 3/23/2015 - 8:32am

Hello everyone. 

I have not been around for a while as work has really occupied every waking second (when I'm not in the doctor's office). Mat contacted me to see how I was doing and suggested I post an update though. 

For those who don't know me, I was diagnosed in 2011 as a stage IIIb, who progressed to stage IV in 2012. I've been through the full year of interferon, a full course of IL-2, a full course of Ipi (combined with Leukine), whole brain radiation, 2 rounds of SRS, and the BRAF/MEK combo- all of which failed miserably. Last June I was accepted into the Merk PD-1 (now Keytruda) expanded access program. Things went well until September when they found a mass that had "grown" rapidly in just a couple of months. One craniotomy later the results were that it was all dead tumor, and Keytruda had gotten FDA approval so we picked up where we left off with the infusions but happily at our home office instead of 6 hrs away. I have been getting the regular 3 week injections and scans every 4th dose since then. 

For the most part, everything was showing relatively steady improvement (inside the brain and out) until the last 2 scans where things just appeared stable. I had another round of scans this past week and things are shrinking again. In the brain I'm down from multiple masses to just one that's almost invisible, in my body I'm down from over 30 mets to just 4 that are still visible and those have shrunk by nearly 2/3 since starting the infusions last June. Everyone seems amazed by what this drug has been able to do for me. One of the best parts is that I have few to now side effects and am able to live my life however I want to.

One day, I hope I can come off therapy and possibly consider having children, something my husband and I have not even dared think about until now. I don't know if it's the infusion getting into my brain or not, but something is, and I'll take it either way!

Best of luck to everyone out there fighting this battle! Keep fighting- find your way to win!

-Eva

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Andiuta's picture
Replies 4
Last reply 3/23/2015 - 7:43am
Replies by: Andiuta, ldub, _Paul_, SABKLYN

Hello! I have a mole that has become raised (it was flat before) and has two shades of brown and also 2 black spots. I noticed these changes one year ago but I didn't get to go to a doctor. I am really worried but at the same time I am afraid to go and get diagnosed. Is there anyone here that had the same symptoms and was diagnosed with melanoma?

Andiuta

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arthurjedi007's picture
Replies 14
Last reply 3/22/2015 - 8:52pm

Back in 2013 when this all started I changed my diet to more natural non processed stuff. I attribute a lot of my weight loss to that. No matter what I ate though I never have been able to regain weight loss.

However more recent I rapidly in about a week lost 6 or so pounds due to a swallowing issue before the radiation fixed it. Once fixed I still could not gain weight no matter what I ate even pizza. Now I'm losing weight I guess because the radiation has messed up my stomach so diarrea which still is not in control although thought it finally was until again last night and even threw up.

Im almost to my high school weight so I'm trying to find a way to regain my weight loss. I even ate some fairly healthy processed snack foods but no success.

I did find at GNC the old weight gainer I did when I was young and working out. I imagine that would put the weight on me. About 2000 calories per scoop in a glass. But it talks about how it helps create and restore new veins to muscles making them stronger and things. That is all I need is to help the tumors create more veins to make them stronger too. So I'm afraid using it would be worse.

im not very healthy anymore. I can walk a few minutes with a cane.

 So I dunno is there a healthy way I can gain weight? Something full of calories or whatever helps us gain weight?

Artie

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Mom2Addy's picture
Replies 6
Last reply 3/22/2015 - 4:25pm

My husband is due to get his second infusion tomorrow. Did others find that the side effects worsened or change as you progress through the regimen? We're you able to keep working? Thank you!

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LindaPBa's picture
Replies 1
Last reply 3/21/2015 - 11:04pm
Replies by: Anonymous

New to this board and am hoping someone can give me some reassurance. It has been a roller coaster ride since January! While I am very very thankful that this was found at Stage 0, I am very scared regarding these "atypical" cells still present in a small area.

Was diagnosed late Dec 2014 with melanoma Stage 0 left foreram and told by my dermatologist of many years not to worry, caught very early,very thin etc. I am 60 years old and otherwise in very good health.

On Jan 12 he did an excision and I thought all was resolved. Pathology rept came back showing a small amt of melanoma remaining in part of margin. On Jan 24, had a second excision...again told all s/b complete. Pathology came back showing some "atypical cells" in part of margin. He said we could :

1.use Aldara cream in the area for several weeks, 2. watch carefuilly and do nothing unless change was seen or 3 have another excision by dermatologic surgeon in his office. After much condsideration I decided the only way to be fully over this awfulness was to go for a 3rd excision. That was on March 4. Procedure went fine, healing very well, stitches out on Wed...and path report shows

"Multiple deeper sections were examined and the case was discussed with the referring physician..In blocks 6,7, and 8 only, at the black inked lateral margin only, there are increased numbers of single juntional melanocytes immediately adjacent to, and focally overlying the scar. Melan-A stain, performed w appropriate controls reveals increased junctional melanocytes w scattered pagetoid spread and follicular extension at the black inked lateral margin of these three blocks only. After discussion w the clinician, Melan A stain was performed on most of the other blocks and fails to reveal increased junctional melanocytes either overlying, adjacent to, or away from the scar. Therefor it is very unlikely that the melanocytic proliferation in blocks 6,7, and 8 represents a background change, a reaction to chronic sun exposure or a reaction to wound healing. It is likely this proliferation is residual atypical melanocytic lesion"

The surgeon has now referred me to Yale for their opinion on next step needed, if any.  Having lost a brother to cancer at 51 (multiple myeloma), I am petrified at the thought of any type of cancer. My Dad had a Stage 0 abt 20 years ago..he will soon be 85 so that calms me a bit :) 

Just don't know how worried I should be abt this. I tend to be a worrier and am trying to keep this in perspective. Want to be sure to take correct steps now so that I can move on. Thank you for any experience you can share

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Anonymous's picture
Replies 1
Last reply 3/21/2015 - 12:42pm
Replies by: _Paul_

I found out weeks ago that I have melanoma.  It was staged a 1B after the first pathology report.  After removing two nodes, one was negative and one showed a trace of infection.  We are currently getting a 2nd opinion and had an appointment delayed because the pathologist is questioning lymph node involvement.  Has anyone experienced this?  Is this common?

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BrianP's picture
Replies 1
Last reply 3/21/2015 - 9:32am
Replies by: Ed Williams

 

A VGEF drug (Ziv-alfibercept) in combo with pembro.  

Unfortunately It looks like any prior immunotherapy treatment is a disqualfier  

https://clinicaltrials.gov/ct2/show/NCT02298959

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Navy wife's picture
Replies 3
Last reply 3/21/2015 - 12:45am

My name is Tiffany and I am a wife and mother to four children. I am temporarily living with my parents while my husband is deployed.

I have atypical mole syndrome and a family history of melanoma. No melanoma yet, but I have been told to "brace myself." That being said, I have been extra vigilant with my moles...(self checks, mole mapping, routine derm appts).

Three weeks ago I gave birth to my fourth child. When I arrived home from the hospital, I did my monthly self check and noticed a new mole. The mole itself is completely unremarkable. Especially compared to my severely atypical moles. Basically saying, it does not fit any of the ABCDE criteria and is less that 2mm.

However, I am over 30 (32 to be exact). Some of my derms have said any new mole after the after of 30 warrants a biopsy... Others have said after the age of 40. Typically, I would run into the dermatology office regardless, but my husband comes home in less than a month and we are moving back to where I have a dermatology doctor. I can get a referral and visit to a temporary local derm where my parents are, but I wonder if that is totally necessary seeing as there is nothing remarkable about this mole.

I I am just curious what you all have done with new moles after the age of 30.

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One Doctor’s Quest to Save People by Injecting Them With Scorpion Venom

One Doctor’s Quest to Save People by Injecting Them With Scorpion Venom
http://www.wired.com/2014/06/scorpion-venom/

A pediatric cancer nurse out in Seattle and has been working on this project. She tells this lady it is currently being used in Australia in adult melanoma patients and seeing positive results.

Brendan I. Koerner Magazine

  • 06.24.14

One Doctor’s Quest to Save People by Injecting Them With Scorpion Venom

http://www.fredhutch.org/en/labs/project-violet.html

A decade-long quest to solve one of the most vexing problems in oncology: the fact that a tumor’s precise boundaries are nearly impossible to define during surgery.

A preoperative MRI provides only a rough guide to a tumor’s fuzzy edges; the scans often miss slivers of cancer that seamlessly blend into the surrounding tissue. Surgeons often face a brutal catch-22: Either cut out any suspicious tissue, an approach that can lead to debilitating side effects, or risk leaving behind malignant cells that will eventually kill the patient.

Olson tells the students that he finally has a solution. His laboratory at the renowned Fred Hutchinson Cancer Research Center, located just down the road by Seattle’s Lake Union, has developed a compound that appears to pinpoint all of the malignant cells in a patient’s body. It gives those cells a bright fluorescent sheen, so that surgeons can easily spot them in the operating room. Olson calls the product Tumor Paint, and it comes with a surprising twist: The compound’s main ingredient is a molecule that is found in the stinger of Leiurus quinquestriatus, a potent little animal more popularly known as the deathstalker scorpion.

Olson thought he could accomplish this feat by modifying a molecule known to bind specifically to cancer cells. If he could attach a fluorescent dye to such a molecule, maybe he could make the tumors glow a brilliant blue or green when viewed through a near-­infrared camera positioned next to the operating table. Surgeons would then have no problem seeing exactly where a tumor began and ended.

Ullrich hypothesized that the tumors could be held in check if there were a drug capable of blocking their ability to “sweat” chloride. Chlorotoxin promised to do just that.

When she injected chlorotoxin into the brains of mice with gliomas, Ullrich found that the peptide would bind only to the cancer cells; the molecule wanted nothing to do with the normal cells adjacent to the tumors.

the chlorotoxin didn’t attach just to brain tumors—it grabbed onto all sorts of cancers, from those that affect the skin to those that destroy the lungs. They also learned that the peptide could cross the barrier that protects the brain from toxins and other chemicals—a rare attribute for a molecule of its size.

In one instance, the chlorotoxin illuminated a clump of just 200 malignant cells that were burrowed deep within a wad of fat. “That was the point we learned that the technology was far more sensitive than an MRI,”

Blaze launched the first human clinical trial of Tumor Paint in December 2013; a second Phase I trial is slated to begin later this year.

Olson’s tattoo is a tribute to not only chlorotoxin but also a range of similar peptides that he’s now investigating as possible weapons against cancer and other diseases. Using a custom-written Python program that can troll through decades’ worth of genomic databases on venoms, his lab has identified hundreds of thousands of mol­ecules that share chloro­toxin’s central knot of disulfide bonds and thus may form the basis for new cancer-­fighting drugs.

Painting Tumors

Brain surgeons can’t easily distinguish a tumor from healthy tissue. Jim Olson’s Tumor Paint solves this problem by giving tumors an eerie and distinct fluorescent glow. —Jason Kehe

Step 1 Olson needed a compound that would locate only tumor cells. The answer: chlorotoxin, a (nontoxic to humans) mol­ecule found in the venom of the deathstalker scorpion.

Step 2 Chemists attach a fluorescent dye—the FDA-­approved indo­cyanine green (a)—to laboratory-­made chlorotoxin (b). The resulting compound glows in near-­infrared light.

Step 3 Before surgery, Tumor Paint—which can cross the blood-brain barrier—is injected into the patient’s bloodstream through an IV and begins circulating within the body.

Step 4 The outsides of tumor cells contain a protein healthy cells don’t: Annexin A2 (a). Research shows chlorotoxin (b) binds to Annexin A2 and from there seeps into tumor cells (c).

Step 5 It can take an hour or two for enough of the compound to accumulate in a tumor to be useful. Even then surgeons still can’t see their targets with the naked eye. Instead, they point a near-­infrared laser at the area—often in the hard-to-operate-on brain—and a special camera captures the light emitted from the Tumor Paint. Tumors appear on a monitor as ghostly-­green blobs.

 

I'm me, not a statistic. Praying to not be one for years yet.

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