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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Replies by: JerryfromFauq, POW

Receive OK From FDA to Proceed With Phase 1B Clinical Trial in Metastatic Melanoma

NORCROSS, Ga., Feb. 3, 2014 (GLOBE NEWSWIRE) -- Galectin Therapeutics Inc. (GALT), the leading developer of therapeutics that target galectin proteins to treat fibrosis and cancer, today announced that the U.S. Food and Drug Administration (FDA) has agreed that a Phase 1B clinical trial of the galectin inhibitor GR-MD-02 in combination with Yervoy(R) (ipilimumab) in patients with metastatic melanoma may proceed. Providence Portland Medical Center, a leader in immunotherapy research and translational clinical trials in melanoma and other cancers, filed the IND in late December 2013.

Providence Portland Medical Center's Earle A. Chiles Research Institute (EACRI) will conduct the Phase 1B study under principal investigator Brendan D. Curti, M.D. The study will employ a 3+3 Phase 1 design with dose escalation of GR-MD-02 in conjunction with the standard therapeutic dose of ipilimumab in patients with advanced melanoma for whom ipilimumab would be considered standard of care. Researchers will assess the effects of GR-MD-02 with ipilimumab on melanoma response by inducing proliferation, activation and memory function of CD8+ T cells. In addition to monitoring for toxicity and clinical response, blood samples will be obtained to assess immunologic measures relevant to galectin biology and ipilimumab T-cell check-point inhibition.

http://finance.yahoo.com/news/galectin-therapeutics-providence-portland-...

 

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

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Tracy Chicago's picture
Replies 4
Last reply 2/6/2014 - 8:21pm
Replies by: Anonymous, LibbyinVA, JerryfromFauq, tschmith

I am getting a purse/tote embroidered with the black ribbon for melanoma and then I wanted something embroidered/written underneath it to encourage people to ask questions.

Some of my ideas so far: Survivor, Warrior, Mela No No (the name of my annual fundraiser)....

Fight the Beast is too long since it can only be 12 characters. 

 What do you all think would start a conversation?  

Thanks!

Tracy

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heiditemple's picture
Replies 10
Last reply 2/7/2014 - 5:26am

I had my first Yervoy treatment yesterday and I'm feeling pretty good!  I'm in the high dose arm of the E1609 clinical trial.  I had my port installed Monday, and other than pain around the incision, it feels fine.  

If you received Yervoy infusions, when did your side effects start?  

If you have a port, did you continue exercising?  Maybe this is silly, but I'm a little afraid that I may damage the port.  I am already limited to what I can do because during my radical neck dissection, my surgeon severed my auxillary nerve on my right side.

Thanks!

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Anonymous's picture
Anonymous
Replies 5
Last reply 2/5/2014 - 9:07pm
Replies by: POW, Anonymous, Brent Morris

I'm a stage IV patient and some of my known masses are in the abdomen, although to date none have been identified in the GI or other organs- they seem to be in abdominal lymph nodes. I had a CT last week to check the progress after being switched to the BRAF/MEK combo about 2 months ago. While I had good progress with the lymph node tumors the radiologist noted an intussusception (where a part of the intestine basically swallows itself) in my small intestine. Typically this happens when there is an abnormality (like a met or other tumor) that sort of gets sucked in during normal GI activity, but the radiologist also noted that such a "point lesion" was not seen. My understanding is that intussusceptions should never be ignored but my oncologist said it was insignificant and nothing to be concerned about.

My questions are: has anyone else had an intussusception? If so, what were your symptoms (if any) and what was the course of action?

My feeling was that I already have known metastatic disease and have never had evidence of an intussusception before so this is new and should be investigated (or at least followed up on) regardless of the apparent absence of a point lesion. Am I paranoid? Can intussusceptions in adults be incidental and of no significance?

Thanks

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aquamak's picture
Replies 7
Last reply 2/9/2014 - 8:30pm

I haven’t posted in awhile and things are pretty much quite.  I successfully complete the dendritic cell vaccine trial at Memorial Sloan Kettering Cancer Center and I hope I get some type of benefit from it even though it was only a Phase 1.  The research doctors there are very optimistic about this type of treatment because it is supposed to “train” your body’s own immune system to identify and destroy melanoma cells.  This trail involved me receiving 50 injections in my groin and armpit over a 3 month period.  These injections were made from my own harvested stem cells and were “encoded” with melanoma antigens so that the immune system response was hopefully tailored to recognize only melanoma.

Tomorrow I go for my 9 month scans and hopefully I am still NED from my neck dissection last May.  I feel fine but as you know, every little ache, pain or discomfort sends my mind in a spin.  Luckily, my oncologist schedules the scans for early in the morning and I meet with her in the afternoon for the results.  I still have “scanxiety” wondering what if they find something.

I will report back with my results and hopefully I will be on the way to 1 year NED!

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Anonymous's picture
Anonymous
Replies 10
Last reply 3/8/2014 - 7:11pm

Hi all 

I have recently been diagnosed with stage 4 mm in my brain, stomach and liver and that surgery is not an option. I have the BRAF gene so have been started on Vem, but was told that it will only work for 6 to 12 months. Therefore, i was wondering whether others could tell me about their experience with vem and whether the time scales are realistic? 

Thanks 

Sally

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Has anyone with bone mel seen shrinkage with ipi/pd1/pdl ?

I know some have seen bone mel shrinkage with the taf/mek combo but what about the ipi/etc?

The Dr said the mel is carried by the blood and some point it got in my bones thus the tumors eatting away my bones from the inside. But since it spreads to different bones then I assume that must be by blood with mel in it so why aren't these meds like zelboraf and ipi so far getting in the bone and shrinking things. Does anyone understand it? I'm trying to learn how this blood and bone stuff work but it goes over my head. If I understand right it's like the bone marrow inside the bones creates the cells. They float around and some immune system cell gets hit by ipi that turns off ctla4. So now that cell floats around hoping to find a cancer cell but all mine are in my bones thus nearly impossible to find. Did I understand right or am I way off?

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New rule lets patients get test results directly from labs
New rule lets patients get test results directly from labs

Sandhya Somashekhar FEB 3

The Obama administration said the new rule lets patients bypass their doctors to get results themselves.

Consumer groups said the rule will empower patients and reduce mistakes. A 2009 study in the Archives of Internal Medicine found that providers failed to notify patients of abnormal test results 7 percent of the time. Other estimates have put that rate higher.

“Providers are busy and overloaded, and this was an additional burden on them,” said Alice Leiter, policy counsel at the Health Privacy Project at the Center for Democracy and Technology, which advocates for a more open exchange of information, particularly online.

The American Medical Association and the American Academy of Family Physicians, two large physicians groups, had raised concerns that allowing patients to get their test results without a doctor’s help in understanding them could do more harm than good.

For example, a typical blood test for a person on a chronic medication to test liver and kidney function measures more than two dozen things. A typical lab result will show each result, along with what is considered in the normal range. Only a doctor would be able to tell whether the abnormal result — displayed in bright red — is something to be concerned about.

“If you get those labs, and on that piece of paper are two numbers written in red, you just see that they’re abnormal,” said Reid B. Blackwelder, president of the American Academy of Family Physicians. “That’s where the harm comes, because you don’t know what to do with that information.”

That view is “outdated and paternalistic,” Leiter said. “Individuals are grown-ups and smart and should have the ability to get that information in the way that they want.”

Neither physicians group opposed the rule. Blackwelder acknowledged that providers sometimes fail to call patients about test results — particularly when the test yields a normal result. But he said that is not the best practice, and that a doctor’s office or hospital should call a patient regardless of a test’s outcome.

Officials at the Department of Health and Human Services said the new rule will give patients another way to get information about lab-test results besides relying on their doctors.

“Information like lab results can empower patients to track their health progress, make decisions with their health care professionals, and adhere to important treatment plans,” HHS Secretary Kathleen Sebelius said in a statement.

Seven states, including Maryland, already allow patients to get test results directly from a lab without waiting for a doctor, according to HHS. The District does so as well. Seven states, including Virginia, let patients get that information with their doctors’ permission. Twenty-three states do not regulate the information that labs may release to patients.

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mwcollins's picture
Replies 9
Last reply 2/6/2014 - 3:13am

After a very late start(3.5 hours late), Kevin had his tumor removed. I unfortunately got a fever this am so I couldn't be there with him. I couldn't risk him getting something from me. The doctor told me that he did well. A pretty big tumor that was sitting on the outside wall of the small bowel. But it is out and now it is time to heal! Thank you for all the warm wishes and prayers. The greatest thing about my husband? He asked how I was feeling when he got to his room. I love this man and even though I know this is a long road, I am confident to travel it with him!

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momof4boys's picture
Replies 10
Last reply 3/26/2015 - 12:08am

I have been coming to this site for about 7 months and have gotten tons of info. In fact because of what I learned on this site I decided to try the IPI/interferon trial. I had initially thought against it because of the 10 mg arm. I actually changed my mind at about 9 pm the night beforeiI was to go have my picc line put in and start interferon. I was fortunate enough to get the IPI 3 mg arm. With that being said, I have also noticed that most people with stage 3 progress to stage 4 eventually. Do those of you that have been a part of this for a long time agree with that? I know things have changed a lot in the last few years but I would just like you to share your knowledge. I was diagnosed by a pa in my local med center. I could tell she didn't look confident so I asked her nurse, I was her first at biopsying. Anyways 3.8 mm nodular melanoma on calf, not clean margins. Ulcerated. Mitotic greater than 1/mm2. Had clnd only the sentinel node was positive. How likely us it that I will advance at some point? Stage 3 b currently

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gaby's picture
Replies 13
Last reply 2/11/2014 - 12:01pm

HI,

My husband (38 years) was diagnosed with melanoma (ankle) on june 2012 (Breslow 2.3 mm without ulceration, less than 1 mm2 mitosis), unfortunately the result of the sentinel node biopsy (groin) gave positive 1/4, so he had a  groin node dissection and lymph node biopsy in the stomach, all clean.

Since October 2012 he was pegylated interferon therapy (Sylatron / intron), and scan every 6 months. Until the last few tomography nodes were enlarged but the oncologist said it was nothing serious. Sometimes lymph grew smaller and others were a bit bigger.

Tomorrow we have an appointment with the oncologist. The wait is intrined, I'm living inertia

 

These last months had hopes that the melanoma was not as aggressive as it only had a positive lymph node micrometastasis and clean and all the rest. As you might already left the liver?

from diagnosis I'm living a nightmare

God please give my husband a chance

Gaby (from Argentina).

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Replies by: JulieW, NancyM

Hi all,

I am hoping this is one of the usual worries about nothing but I have not been feeling great recently with a lingering cough (which I get every year - postviral asthma), and over the past week or so have noticed that the inside of my third toe has lost sensation, is numb, and is annoying me.  On my other foot I wouldn't be worried but the WLE scar is on the dorsum of my foot only afew cm away.  There is nothing else obviously wrong with this toe.  I cant remember kicking it or anything like that. It is always possible though.

My question is, has anybody ever had this type of loss of sensation in a local met?  I am probably being extremely anxious (and hope I am!).  I have just had another mole off last week and waiting for those results.  Afew weeks before that one came back atypical.  I haven't been worried, mostly about this toe!

Thanks for your help

Jacqui

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mark1101's picture
Replies 6
Last reply 2/4/2014 - 9:35pm
Replies by: Bubbles, JoshF, Anonymous, hannahcopeland1

Just approved today for the Phase 4 trial combining IL-2 and Vemurafenib in sequence.  Anyone with experience in this trial who can tell me their experiences?

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