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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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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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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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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We met with the melanoma specialist yesterday.  My husband has ctage lllc resected with surgery almost 4 weeks ago.  Our dr is doing the clinical trial of nivolumab vs yervoy, 2 arm study.  Not sure which drug my husband will get.  He said this trial just started to see how it works for stage lllc.  Originally, our oncologist offered radiation and interferon and then refered to the melanoma specialist at Baylow Sammons texas oncology dallas.  After speaking with the melanoma onc yesterday, he felt interferon would not be best option and radiation would not either plu he could not perticipate in the trial if he took radiation.  The clinical trial drugs are approed by FDA for stage 4 melanoma and he said they are working on other forms of cancer as well.  Dr feels he will meet all criteria to enter trial and he signed all contract papers yesterday.  I hope this was a good choice, we are young with 2 children.  My husband works in the sun and uses sun screen but now, after being at his job for 6 years he feels he needs a job chnage in the midst of all this, im afraid for him to get a new job knowing he will start treatment soon and what boss would put up with that from a new employee.  His work is working with him now very well and all they want is him to be healed, and we hope maybe they will try to get him on other equipment in a cab to keep him out of the sun, they have worked well with keeping him out of as much sun as possible.  I feel we have a lot on our plate as all you you do on this forum.  Lastnight my husband started crying that he did't want to die.  I know you all fear that, I have hope though from reading this forum seeing all you stage 4 and 2, 5 and plus years NED.  I really need to keep talking him into getting on this forum because it has given me hope.  Any advice is much needed.  Have you been on these drugs?  What stage where you then, how long have you been NED?    

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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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katie1's picture
Replies 1
Last reply 3/19/2015 - 8:25pm
Replies by: Anonymous

My husband (IIIC-11 mm amelanotic nodular melanoma) is participating in the Ipi vs Interferon adjuvant trial.  He received all the induction infusions (3mg arm) but did not receive any maitenance doses due to toxic side effects (grade 4 hypophysitis).  He had many side effects from the Ipilimumab (dermatologic, ocular, neurologic, gastro-intestinal and endocrine). All have mostly resolved except that he has permanent adrenal insufficiency.  He remains NED.  Hoping this might give hope to those who may have started the trial more recently.

Kate

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Saturn's picture
Replies 6
Last reply 3/20/2015 - 10:30pm
Replies by: Nell, Brendan, Anonymous, Marianne quinn, Gene_S, Janner

anyone who has been treated by yervoy or is currently being treated I would

like to know the side effects you have experenced

 

thanks

Sam

ok

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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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sweetaugust's picture
Replies 4
Last reply 3/20/2015 - 11:09pm

Hi guys,

I am just posting this in hopes that it helps all of you that go through that scan anxiety that we know so well.  I am still on the MK-3475/Pembro/Keytruda clinical trial.  I have been on it for 2.5 years and have had great results with it. All my scans have been great since the drug started doing its thing...so I am lucky to say that my scanning anxiety has been less over the past year and a half. 

My recent scan in December showed some intestinal wall thickening...so they were worried that I might be experiencing some colitis...but I was not.  And my scan a few weeks ago showed that same intestinal wall thickening, as well as what looked like intestinal wall collapsing (which is very dangerous), and some suspicious lesions in my colon.  So they were worried that perhaps the drug was hurting my intestines and that perhaps the melanoma had traveled south to my digestive system and they wanted to do a colonoscopy. 

The colonoscopy showed that everything was very healthy.  No intestinal wall thickening or collapsing and no spots.  They took several biopsies anyway to make sure...and all came back totally normal.  Diagnosis: No need for another colonoscopy for at least 10 years.  For me to hear 10 years....was such a strange feeling.  A feeling like I was a normal person without this metastatic melanoma cloud over my head.  A person that easily has 10 years to live without question.  :)

So my point is....try your best not to waste too much time stressing and worrying until you truly have all the tests back.  Our doctors are doing the best they can to help us. 

Love, health and happiness to you all, Laurie

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acyr's picture
Replies 2
Last reply 3/19/2015 - 12:55pm

Hello all,

The Melanoma Network of Canada (MNC) is urgently seeking patient input into a survey regarding the latest Anti-PD1 therapies and patient experiences. Patients from the US and Canada are encouraged to participate and particularly patients treated with either Nivolumab (MDX 1106) or Pembrolizumab (MK 3475). Please click on the link below to access our survey. 

The survey information will be used to help support patient the case coverage of these therapies so patients do not have to pay out of pocket in Canada.  Because of the small number of patients in Canada that were enrolled in the clinical trials, we are also asking patients in the US if they will lend a hand to share their experience with either drug by answering a few simple questions. Deadline for response in April 15th. MNC thanks you for you help in supporting access for all patients with this dreadful disease. Any inquiries may be directed to us at 1-877-560-8035

https://www.surveymonkey.com/s/Pebmro-Nivo_survey

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ms1mkg's picture
Replies 3
Last reply 3/25/2015 - 12:19am
Replies by: arthurjedi007, wgalvin

My brother has malignant  melanoma lesion in his sacrum affecting his nerves S1 and S2. He has an intrathecal pump implanted for pain control, although he still has significant pain and is unable to sit for more than a couple of minutes.  

I am inquiring as to whether anybody has had a tumor in this area, and if anybody has any information on a facet rhizotomy procedure to treat the nerves.

Any information is welcomed.

Mary Galvin

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Anonymous's picture
Replies 1
Last reply 3/18/2015 - 11:07am
Replies by: CHD

http://www.clairemariefoundation.org/

 

The Claire Marie Foundation was established in 2014 following the death of Claire Marie Wagonhurst, a sparkling 17 year old who lost a long battle with adolescent melanoma as a result of changes her body went through during puberty.

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Anonymous's picture
Replies 15
Last reply 3/20/2015 - 9:52am

So I was supposed to fly to Oahu tomorrow to see my medical oncologist.  Last visit 1 year ago had a discussion regarding my concerns about my cumulative radiation exposure (at least 9 PET/CT, 5 or more chest CTs, multiple chest x-rays - lost count etc.).  At what point do we drop scans?

In my case I had indolent disease.  8 years after stage IIA became stage IV with a small lung met and even smaller muscle met.  Removed lung tumor and underwent IL-2.  Complete responder with a durable remission.......  Based on recent follow ups of past IL-2 complete responders both my surgical & medical onc. have finally accepted I will probably continue with my durable remission.

Only now what to do.....

I called yesterday and since no scans were ordered asked what was the point of taking an entire day, flying to Oahu, spending over $300 on airfare, another $100 or so to catch a cab, to basically say I am still doing well.....  

I just had several blood tests & chest x-ray as part of my pre-op stuff for ACL surgery, all good.

With my Dr.'s blessing, he agreed I could be followed by my surgical oncologist who flies to the Big Island 2-4 times a year to see patients.  My surgical oncologist said I should still be seen by someone, but as to what testing, lab work and for how long, neither of them had an answer.  They are going to talk to each other about it.

The funny part is both feel I will never hear from mel again, but neither wants to discharge me forever - LOL.  I am at peace not doing any more scans at this point.  Perhaps it is worth it just to give those guys hope that some of us set the curve rather than live by it......

It feels good to have graduated from seeing them.  I think now it will only be annual visits +/- blood work with my surgical onc.  I can stay at home to get that done which also helps a great deal.

Just updating for whoever was interested.  Glad the day finally came :)

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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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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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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