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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gaby's picture
Replies 8
Last reply 2/6/2014 - 8:22am

Please need support , because I am very sad.
My husband was diagnosed in 2012 stage3a melanoma , because he had micrometastasis in the sentinel node , the rest were clean. He had in 2012, 38 years old. He started in October 2012 with high doses of pegylated interferon for two months and after that continuous average dose to date. He was positive despite the side effects of pegylated interferon and was determined to complete the two years of treatment. He had from the diagnostic CT every 6 months , thank God for all normal except when some nodes increased in size , according to the doctor was normal by interferon . Last week was the result of his last TAC and are desperate because said to have focal lesions in the liver , which are new. Next week we have an appointment with the oncologist , but these days are endless waiting .... It might be the 3rd stage melanoma has gone so fast and to the liver ? God wants to be caused by interferon and not melanoma lesions.

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 to live with anguish and sadness


Thank you all , I read you always

Gabriela  (34 years old) from Argentina

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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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kylez's picture
Replies 10
Last reply 2/6/2014 - 2:20am
Replies by: kylez, LuckyMan51, eric w

If you've completed Yervoy/IPI reinduction, were the side effects for you similar to the first time, or stronger the second time around? 

From some posts here it seems like side effects esp. colitis tend to be stronger the second time. My doc mentioned the chances of colitis may be higher the second time around. For me it would be 2.5 years between rounds. Anybody _not_ get colitis on reinduction?

2 primaries; lung/brain mets in past; paratracheal lymph node currently; participating in  Opdivo/Lirilumab trial

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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.


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

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Anonymous's picture
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?


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AnnG's picture
Replies 8
Last reply 2/5/2014 - 7:09pm
Replies by: AnnG, dodgedh2, JerryfromFauq, Anonymous, hbecker, Swanee

I have a very unusal presentation--one Dr said he could count on one hand the number of patients he has seen. PLEASE reach out to me if you have had a similar diagnosis or are a professional and can offer advice.

July 2013 diagnosed with cyst on back. Insisted on seeing dermatologist again two weeks later. Attempt to drain found pigmented soft tissue so had punch biopsy. Path report metastatic malignant melanoma Stage 4. No primary site found. Pet/CT scan normal. Bloodwork normal. MRI of brain normal. Eye exam normal. Surgery August 2013. Unable to locate sentinel node. Clear margins. Melanoma deep (into dermis and hypodermis) All path reports have concurred metastatic except one Dr who believes this tumor was the primary. This changes the Staging. 

After surgery adjuvent therapy recommended as preventative. Interferon alpha 2b infusions 5x a week for 20 treatments. After two weeks, reduced dosage by 50% due to liver abnormailites. Then 6 weeks of self injections of Interferon-stopped due to recent problem.

Petscan last week showed a spot under arm same side of body as original tumor. Surgeon and oncologist are assuming it is melanoma in regional lymph node. Approx size 1/2 inch. No distant metastases.

Surgery scheduled for this Friday removal of lymph nodes under arm. 

Can anyone comment on my presentation? 


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My Dr is a melanoma specialist. I just completed last IPI dose 2 weeks ago today. Before that was zelboraf which shrank nothing and before that with different Dr was pallative radiation to T10 and a few other vertebrae.

They now see everything has increased plus some more spots. This is the first time the radiated T10 spot has increased. The biggest was the left scapula tumor by almost 50% (9.1 to 13) (Probably why I had lots of pain I was telling them about for over 6 weeks but the pain has lessened a lot now). The T10 increased but the Dr didn't know how much since the radiologist didn't include numbers for it. The T10 has now collapsed 50% causing my height loss but not much additional pain since last scan. No one ever reported how much it had collapsed before and no one ever gave me an answer why I lost height way back in August so now I know why I just dunno if this is more collapse or what.

The Dr originally said they don't put much "weight" on this first scan. Now that they have the scan he wants me on tafinlar/mekinist combo immediately. Plus xgeva immediately for bones but that is in the same family as zometa which I took 1 dose last July and was starting to get early stage of the jaw necrosis so I quit and now my jaw is fine again.

So I'm baffled. I asked about clinical trials and he said the only thing he believes I should get into is a PDL1 or PD1 but said there are none available. Despite when I was on ipi they said I could do PD1 if I increased on IPI but apparently not. They are not willing to help find trials.

The only good news is all the mel is still in my bones. Just lots and lots of bones with the T10 and left scapula as the worst.

I'm struggling with this new clinical trial site. It is all way over my head of which trial I should try to get into.

Sorry I'm babbling but I'm at my wits end today after hearing this and very depressed and don't know what to do other than do the med plan the Dr said which I have no faith in it working especially since zelboraf never worked. Only other idea I have is trying to somehow relocate to MDA and see if they have a miracle for me but I guess they deal with the same trials issues too and nothing else. I dunno what to do. Sorry I'm just baffled and rambling.


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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


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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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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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Kellyg8's picture
Replies 5
Last reply 2/4/2014 - 4:37pm

My family has been down the "road of melanoma".  I've so often come to this board looking for hope and other times all have provided both so many times.  I rarely post, but often read.  Thank you all for help.

My dad, Ted lost his battle with Melanoma on March 14th...he fought for 3 1/2 years and endured interferon, IL2, Ipi, numerous surgeries, gamma knife and cyber knife, 2 craniotomies, numerous seizures, and in the last 8 months of his life, a brain bleed that left him with paralysis and aphasia/loss of speech.  He stunned his physicians as he continued to fight.  In the past year, he fought to walk my sister down the isle at her wedding, celebrate his 60th birthday, his 35th wedding anniversary, and be the first person to hold my new baby girl, his first grandchild. 

For those still fighting this terrible disease personally or with a loved one, please don't let this post bring you down.  My father lived a beautiful life, fought the good fight, and is now at peace at the beach in Cape Cod.  He had to leave us, but not before teaching us SO much about life, love, and the importance of family.  Although his time was too short, he lived and loved more in 60 years than most do in a full lifetime.

My main reason for posting is that I want to give back what so many have given me. My dad went through SO much.  PLEASE feel free to contact me.  This journey has taught us so much...about treatment options, coping, insurance companies, rehab facilities, home care, hospice, caregiving....I want to be able to help others with so many of the questions we had throughout this journey.

All I can say is some days I didn't know how much more he or our family could endure...I felt so helpless, exhausted, and scared.  He's been gone 2 months and looking back, it now just seems like a bad dream.  I miss him dearly but know he's at peace.

Sending support and strenght to all of you...


A link to  Ted's life tribute:

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kpcollins31's picture
Replies 8
Last reply 2/4/2014 - 1:45pm

Bowel resection surgery is scheduled for tomorrow morning but I am being admitted today for bowel prep, bloodwork, EKG, and chest x-ray. I have really not been looking forward to this as I still feel really good physically and I know this surgery is going to knock me down a few notches for a while. My hope is they get in there, take it out, and return me to NED status (albeit at stage 4). I am very comfortable with the surgeon (Dr. Stewart) who is also my melanoma specialist at Wake Forest Baptist Health.

Despite a terrible football game last night, I was at least able to enjoy some good food and drink prior to the surgery.

Wish me luck.


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Anonymous's picture
Replies 2
Last reply 2/4/2014 - 11:55am
Replies by: Anonymous

Would like to hear from some folks who had only mild side effects from IPI but had good response...?

Thank you All... So appreciate everyone's knowledge, resilience and compassion


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Marianne quinn's picture
Replies 1
Last reply 2/4/2014 - 11:16am
Replies by: Anonymous

Thank you mrf for a great conference! Very informative and well run. Good job!

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