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.

Expand/ Collapse Topic
 
Replies By
View Topic
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.

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

j.m.l.'s picture
Replies 10
Last reply 3/20/2015 - 8:39pm

I'll be starting on Yervoy next week. I know everyone is different but could you give me some idea of what to expect right after dose 1 and also later on. I am worried about the serious stomach problems.

Login or register to post replies.

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.

Login or register to post replies.

bonusfries's picture
Replies 5
Last reply 3/20/2015 - 7:04am

My initial diagnosis was July '13. Had a very high risk initial tumor (11mm depth, and raised from the skin too). Fortunately the WLE, SLNB and every PET scan (last one Sep 14) since then has been NED.

That was until vision problems led to an MRI 3 weeks ago. 2 brain mets, different lobes, with the visual problems being driven by one of them filling with fluid. The larger had swelled to about ping pong ball size, with the second being 1 cm. Minus the fluid they were both probably equal in size.

The subocciptal craniotomy went extremely well. Surgery on Tuesday and I'm back home Friday night at a pizza party for my son. A full body CT scan (CT only not PET) only showed that a subcutaneous node might be forming near my original site (lower abdomen), otherwise NED.

The next Friday after discharge, I had SRT performed on the second area - front right lobe. I am a math / science guy and was completely fascinated by this procedure and enjoyed every minute of it.

My lab results from the removed brain met came back BRAF positive. Our plan of attack is to start on the BRAF + MEK combo in the next 2 weeks.

So aside from the initial bad news in the ER that my melanoma had spread, this just seems like wave after wave of good news in terms of attacking it in the short term with quite effective methods. Long term who knows, and I'm a "glass half full" kind of guy so I'm not even contemplating my future. I feel like I have as good odds as I'm going to get in terms of beating it back right now, and hopefully keeping it back. I hope everyone dealing with this has the same encouraging news if you ever hit stage 4 also.

 

Stay strong

Jeff

 

Just do it

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 3/20/2015 - 6:58am
Replies by: bonusfries, Anonymous

...whoever you are posing as this time:

Get the hell out off this board. Everyone here is dealing with a very serious illness and is not interested in any crap that you happen to be peddling.

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

Login or register to post replies.

Shelby - MRF's picture
Replies 7
Last reply 3/19/2015 - 11:22pm

Dear MPIP Community:

The MRF is working to have a bigger and more impactful presence in the mucosal melanoma space and we want to hear from patients who have been impacted by this rare form of melanoma. Please help us by taking this 9 question survey. Your feedback will help guide our decisions on future advocacy and education efforts.

The survey can be found HERE. Thank you in advance for your help! Please feel free to share this survey with other people impacted by mucosal melanoma - we truly appreciate it!

Sincerely,

Shelby - MRF 

Login or register to post replies.

Happy_girl's picture
Replies 3
Last reply 3/19/2015 - 9:40pm

Hi everyone! I have a random question. That no one may know the answer to:

when washing my hair- I found a small bump on my scalp.  After checking my dear friend google-it seems to be where there are occipital lymph nodes.  My original melanoma was on my back and drained to the lymph basin under my left arm.  There were micromets in my sln.  All other nodes removed were clear.   Is it likely to have traveled to the occipital lymph nodes on the back of my head, or Am I just panicking because that's what I do best?

I know anything is possible with melanoma- but I'm just looking for some any possible related experience.  Thanks! Hope everyone hAd a wonderful st Patrick's day!

Login or register to post replies.

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

Login or register to post replies.

Annesmith's picture
Replies 5
Last reply 3/19/2015 - 8:04pm

I've got 2 small lumps on my finger. I suspect them to be ganglion cysts. They are small, painless, flesh colored. My primary was almost 10 years ago (leg 1B).  I think it is highly unlikely that it is melanoma but it's in the back of my mind.  Melanoma would be blackened/ opened (etc.)... yes? This looks completely benign.  I have an annual appointment with my derm, but not until June.  Wondering if I should see him earlier?  Thanks for your thoughts all!

Anne Smith

Login or register to post replies.

Last week I mentioned when I saw them to both my med and radiation docs my left foot hurts. When I touch it it is kind of like touching a nerve instead of my foot. Especially my 3 smallest toes and a few places on top and the left side of my foot. Well the med doc was actually his assistant and he didn't say anything about it. My radiation doc's nurse just said that was new. So nether are planning to help so i figured it might heal itself like other stuff has but this has been going on for at least 10 days.

I think it must have started when I was on the fentanyl pain patch and when I came off them I could feel it. So I'm not exactly sure when it started. During that time they had me on 3 types of pain meds at the same time because of the syatic nerve painin my left hip and leg. There was fentanyl patch, morphine and some pill for nerve pain oh and some oxycodone I already had. Once I found a specific cushion provided lots of pain relief I got off everything except the fentanyl. I was on the nerve pain about 5 days. The morphine 2 days. The oxy I had been on a couple months. I was on the fentanyl patch a couple months and quit it ten days ago. They were also radiating the t4 and 5 vertebrae for that nerve. Plus the right femur for painin that hip. Plus the initial spot of the left shoulder and neck. So now I'm just on Keytruda month 10 and xgeva month 13.

Ive tried increasing my walking to 6 ten minute walks a day. Not easy with my left hip pain. But walking is supposed to help nerves. I put the heating pad on it but doesn't reall help. I can't really reach it with my back and shoulder issues so I can't massage it or soak it or apply lotions to it like I would want to. I hate asking my parents cause they do enough taking care of me unless I knew of something that would work good so not to waste their effort. I took Tylenol but that really didn't help either. I haven't tried ibuprofen yet.

Any ideas what I can do to relieve this pain and maybe heal the nerves?

Artie

Login or register to post replies.

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

Login or register to post replies.

Eileensulliv's picture
Replies 3
Last reply 3/19/2015 - 11:36am

I had my first dose of ipi and Nivo at the end of February. I was supposed to have my second treatment this Thursday, but my thyroid levels are not normal, so I cannot get my treatment. This Saturday I'll go for another thyroid blood test and Monday morning my doctor will call with the results, and whether or not I can have my treatment next Thursday. 

In the time from my first treatment, I have experienced fevers (highest was 102.5), fatigue, vomiting, loss of appetite, sweats and chills, racing heart, shaky hands, shortness of breath, and rash and itching. I started to feel MUCH better Sunday and Monday, but today I don't feel as good. My doc put me on a beta blocker to help regulate my thyroid. My T3 and T4 levels are quite high, and my TSH is very low. 

Has anybody else had thyroid issues while on ipi/Nivo? If so, what worked for you? I've been researching foods that will help, but just wondering if anybody has some advice. Thank you very much!

Eileen 

Login or register to post replies.

Pages