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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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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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 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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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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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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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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Anonymous's picture
Replies 9
Last reply 2/8/2014 - 6:47pm

My Mom has stage IV and has had 2 infusions. (She also has brain mets that were treated.) So far, the tumors we could see at the beginning of treatment have already disappeared or are much smaller. - It's been remarkable to watch.

At the beginning of treatment we discussed with the doctor the next steps in treatment after Yervoy. But this week he said he did not think she would need anything else. I think this means that he thinks she is doing so well that she could have no evidence of disease after treatment.

I've read about people who have NED. Can anyone tell me how this is determined? Is it one or more scans over a period of time?

Also, does NED mean that they have had a complete response to Yervoy?

If you have had a complete response or have NED can you tell me if your doctor has spoken to you about themelanoma coming back and what they say?

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JerryfromFauq's picture
Replies 2
Last reply 2/6/2014 - 12:21pm
Replies by: Nadia, tschmith

Merck said it expects by June to apply for U.S. approval to sell the drug for advanced melanoma.

http://www.washingtonpost.com/business/merck-partners-to-jointly-test-hot-cancer-drug/2014/02/05/6a51efc4-8e94-11e3-878e-d76656564a01_story.html

 

The drug, known as MK-3475,is part of a promising new class of cancer “immunotherapy” designed to make the immune system regain its ability to identify and then target cancer cells.

In some cancer types, the tumor cells often have a protein on their surface called PD-L1 that essentially acts as an invisibility cloak. Merck’s MK-3475 and similar drugs can block that protein, or a corresponding one called PD-1 found on T cells, a crucial immune system component, thus making tumor cells visible.

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

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bkinman's picture
Replies 2
Last reply 2/12/2014 - 9:54pm
Replies by: POW, bkinman

After liver met was larger, they scheduled me for liver ablation today and chemoembolization tomorrow. Then I meet with clinical trial Dr (Zinner) next Wednesday. This is all at MD Anderson in TX.

I'm sure I'll be back on asking for advice after my appointment next Wednesday.

Becky

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LibbyinVA's picture
Replies 11
Last reply 2/12/2014 - 10:24am
Replies by: LibbyinVA, Maureen038, POW, Anonymous

I know of a very young woman in the Chicago area who desperately needs a melanoma specialist. She was dx'ed about 18-months ago and has had no follow-up care after her WLE. I should add she has very limited insurance with high co-pays. However, her mother is willing to help out and will do anything to get her daughter to realize it is crucial for her to continue to have follow-up checks. It's tough sometimes to get young people to grasp that melanoma is something you must stay on top of instead of thinking that surgery took care of everything.

Thanks everyone!

Libby (IIIb, NED 2006)

Never, ever give up hope!

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Anonymous's picture
Anonymous
Replies 0

Tim or Shelly,

 

Please confirm that the NY symposium is still going on as schedule Sat, Feb 8th inspite of the weather.

 

Thanks,

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I will tell us  my husband experience with pegylated interferon since October 2012.

Side effects that my husband has after the first month and still continue:

Hairloss

dry skin

problems with vision and teeth

joint pains

loss of muscle mass

headache

fatigue, fatigue and fatigue! this is the worst

insomnia

some anemia

increased triglycerides

increase in transaminases (liver damage)

sometimes dizziness and memory loss

loss of concentration

 

The first two months were high doses, then half of the dose.

Despite all He is living a normal life, and  working full time.

 

While there are no guarantees, my husband wanted to do the treatment.

 

Greetings from Argentina

gaby

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affguy's picture
Replies 7
Last reply 2/7/2014 - 4:55pm

My Dad had a large ulcerated melanoma tumor removed from his trunk (ribs below armpit) in the summer of 2012 and began interferon treatments that went through May of 2013 (Three 1-month cycles separated by 2-month breaks).  Everything looked clear until recently, with blood appearing in his urine in November and a rather shocking explosion of new, black moles (47 between early December and January 16).  In looking for the cause of the blood, a CT scan showed spots on his liver a couple of weeks ago.  A PET scan last week showed mets to essentially his entire spine and many other bones too, plus overwhelming involvement of his liver (not large tumors, but too many to operate), and his spleen. 

We're now waiting on insurance approval for the dabrafenib and trametinib combination which will hopefully allow him to start treatment the week after next.  The response rate for that combination looks promising, but I'm wondering how long it takes to know whether it's working or not.  My hope is that it's something that starts working quickly and obviously, such that if he's in the minority for whom it doesn't work, he could get started on any other options in short order.  Of course I'm not sure what further options would exist at that point besides ipilimumab.  He has told us that he has no interest in revisiting the side effects he experienced with his interferon treatments.

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bravo591's picture
Replies 4
Last reply 2/7/2014 - 11:12am

Hello All,

I was diagnosed with Stage 1B Melanoma in December of 2013.  The original lesion, located on my leg near my knee, was 1.02mm thick with no ulceration.  A week ago yesterday I had a WLE and an SLN biopsy.

My question is this: the lymph node incision hasn't bothered me at all until today.  When I got home from work tonight I noticed that it is not only very tender, but is swollen as well.  Just wondering if this could be an early sign of lymphedema, or maybe something else? 

My diagnosis came on the second day of a new job, after being unemployed for 2 years.  I really don't want to have to take time off to get the doctor to look at it if it's likely that it's just a bump on the road to healing.  I realize nobody but a doctor can diagnose me, as I said, I'm just trying to determine whether I'll need to take off from work tomorrow.  (Doctor's office is 40 miles from work)

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