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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Ashley's picture
Replies 4
Last reply 3/17/2014 - 12:33pm

My father went in for a routine colonoscopy last month and they discovered a polyp that came back as positive for melanoma.  He had a melanoma insitu on his face in 2010 however had it removed and margins were clear.  Has anyone ever heard of this before?  We're waiting to have scans back to see if it has metastisized elsewhere (praying that it hasn't) so just waiting right now and hoping for the best.  I'd appreciate other stories of people who have had similar experiences!  

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bigb0624's picture
Replies 2
Last reply 3/24/2014 - 8:03pm
Replies by: bigb0624, pigs_sty

I recently read that blocking autophagy with malaria drug may help overcome resistance to BRAF drugs.  The drug is hydroxycholoroquine (HCQ). 

Does anyone have experience with this treatment, and if so, what have been the results?

Barry

 

 

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TerraO's picture
Replies 39
Last reply 12/1/2015 - 10:24pm

I just turned 41 years old and received my melanoma diagnosis mid-January. I had two surgeries in 21/2 weeks: First, to excise the area and remove 5 sentinel nodes, second to remove remaining lymph nodes in my neck as well as parotid gland. Primary tumor was 3mm on the back rim of my ear, so surgery involved reconstruction of my ear.

One sentinel node show a small focus of cells, and one additional node (the next down the line, so to speak) also showed a small focus. All other lymph nodes and parotid gland (salivary gland) were clear. Head to pelvis PET/CT was clear, as was MRI of the head.

Now what? My choices are do nothing, one year of high dose Interferon, or participation in a clinical trial that tests high dose Interferon vs. Ipilimumab. The trial is local at University of Rochester Medical Center. My double-edged sword of feelings is that 1) Where is the cancer that we can't see it yet?, and, 2) I FEEL FINE.

Frankly, I'm terrified to start any treatment due to side effects and potential for toxicity. But, I'm more terrified of doing nothing. At my age and otherwise good health, doctors are confident I can withstand treatment. But, I'm concerned about the long term side effects of Ipi. What if I make it through the study and don't show recurrance  a few years down the line, only to have them say, "Sorry, you are still cancer-free, but your pancreas is shutting down." I think I'm too young for that risk! But...how risky is it?

This has been a terrible inconvience so far, and I see my life as being consumed by treatment that may make me feel sick. My inner rage is a rollercoaster ride; I don't want to go through all this and die (from melanoma) anyway.

But, I have to make a decision soon. I know if I agree to participate in the trial that I could be randomized into the Interferon group anyway. I've been reading a lot, but now need to hear first hand experience. Anyone?

Terra, Stage IIIB

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Anonymous's picture
Anonymous
Replies 7
Last reply 3/14/2014 - 11:55pm

My husband has metastisized melanoma.  They tested him for the BRAF gene, but he was negative for that.  However, he was positive for the NRAS gene.

 

Does anyone have any information about that gene?

Dustilane

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Calynda's picture
Replies 3
Last reply 3/14/2014 - 2:02am
Replies by: Calynda, Tina D, Anonymous

I've been busy with the baby boy in my profile picture.  He turns 10 months old on Friday the 15th.  And I just passed my 1 year N.E.D. Mark on the 7th.  Here was my last update from July:

"I originally posted back in February... That post can be found here http://www.melanoma.org/community/mpip-melanoma-patients-information-pag...

 
The quick version of the first post was that I was pregnant and got a spot checked out (that had been changing for almost a year, but hadn't had it looked at because I got pregnant, then had a miscarriage and needed a D&C, then got pregnant again. By the time we verified that pregnancy was sticking around, I was a month from changing insurance...
 
So at the point of the last post, I had a shave biopsy done and it came back as a deep malignant melanoma. They had scheduled the WLE & SLNB...
 
I found that thread and posted an update thinking it would bump it to the top, but it didn't, so here's what I posted on that thread:
 
"Re: New Here ... Calynda - (7/13/2013 - 3:39am)
I thought I'd dig up my old thread to post an update. The WLE and SLNB were successful. The margins were clear and they pulled two lymph nodes during the surgery. One of the two tested positive... At that point, we couldn't do anything more before the baby got here.
 
I had my baby boy on May 15th. I was induced at 37 1/2 weeks due to blood pressure. He's pretty much perfect. I had my PET scan on June 7th. There were two spots that they wanted to look at more closely, but were things that they usually wouldn't look twice at. One spot was in my spine and that turned out to be nothing. The other spot is a 6mm mass on my deltoid tendon that they aren't sure what it is. They don't think it's the cancer, but they couldn't rule it out.
 
I had an axillary lymph node dissection on July 5th (and still have the JP drain hanging on me). They pulled an additional 12 lymph nodes and all 12 came back negative. Yay!
 
Next week my baby boy has his two month check up on Monday, I have my post op appointment and hopefully have the drain removed on Tuesday, I have an orthopedic consult for the spot in my arm on Wednesday and get to drive 1.5 hours for a consult at a melanoma center on Friday. It'll be a busy week, but hopefully by the end of it, we'll have a plan of attack.
 
I'm feeling good. The scariest part of all this (besides the waiting) was going for the PET scan because I knew that would give us the best indication of how bad the waiting might have been.
 
I don't know if we can post pictures here... If we can, I'll share my little boy, Elliott Cole."
 
The specialist visits went well and we went over every option.  The melanoma oncologist I saw gathered some more information about my SLNB and based on that (and the fact that it had already been almost 5 months since any sign of the melanoma had been seen in my body), she took most aggressive forms of treatment off the table.  She recommended just monitoring for me and if anything came back, we'd revisit the advanced bio-chemo treatment (or whatever was most effective at the time).  
 
So, so far, so good.  I still worry every day, but I don't let it take over and diminish the joy I feel watching my son explore his world.

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lissa_luv's picture
Replies 8
Last reply 3/23/2014 - 8:04pm

Help! I need some advice from someone who has gone thru this. I was recently diagnosed with melanoma in January of this year. I had the wide excision surgery to remove the primary on my right leg. I had the Sentinel Node Dissection. 4 lymph nodes were removed, and 2 were found positive for melanoma. My surgeon suggested a radical surgery to remove all lymph nodes in the area. After speaking with my oncologist today, I was told that this surgery would not be necessary due to the complications that it might cause. I was told that I should start immunotherapy with Interferon. I'm not sure if I should go thru with the surgery or just start treatment. Should I get a second opinion?

 

Thanks!

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Tim--MRF's picture
Replies 23
Last reply 4/20/2014 - 4:37pm

Merck is launching an expanded access program for their anti-PD1 drug lambrolizumab. Clinical trials have shown very positive results for this drug, with response rates significantly higher than any drug currently approved for melanoma.

Here are the key points:

·  The program will initially be available at sites in the United States that have been involved in the Merck PD-1 trials. Fairly quickly it will be made available to other physicians in the US who have experience treating melanoma with immunotherapy. After that, the expansion will extend globally.

·  It is open to all patients with advanced melanoma, with no exclusion for ocular, mucosal, or acral melanoma.

·  Patients with brain mets are allowed if the brain mets have been treated. The mets do not have to be resolved, but some treatment must have been given.

·  Patients in previous Merck PD-1 trials are not eligible. This includes patients who have been in the head-to-head study of Merck’s PD-1 drug vs. ipilimumab.

This is just being announced to clinicians and I don't believe it is live yet on Clinicaltrials.gov.  That should happen within the next few hours and will include a number doctors can call to get more information.

Here is the process: The doctor will hear about and enroll in the program. The clinician's Institutional Review Board (IRB) will need to approve the program; generally 2 to 3 days. Then patients can start being evaluated for eligibility. 

This is great news for melanoma patients, particularly since a lot of PD-1 trials are currently closed.

 

Tim--MRF

 

 

 

 

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eric w's picture
Replies 6
Last reply 3/15/2014 - 6:53am
Replies by: Carole K, Anonymous, arthurjedi007, Julie in SoCal

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newmanmark's picture
Replies 3
Last reply 3/13/2014 - 9:09am

Hello,

I haven't posted in a very long time.  I am now stage 4 with a recurrence to the pancreas.  I am BRAF positive.  I am just getting up to speed on the treatment options available.  I believe there is a trial here in Toronto for the Anti PD1 drug.  I am BRAF positive so I know that I qualify for that treatment.  If I am given the option of doing either, is one better than the other?  I feel like I am leaning towards anti-PD1 based on what I have read.

Thanks

Mark

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Between the 50-57 minutes in this video, a man discuses his TIL/ACT treatment.
http://www.youtube.com/watch?v=ad8DJ-CLlJc&list=PLOnM_erAQqIDeUsIvoqCv40...

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

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http://www.pnas.org/content/109/50/20373.full.pdf

Endogenously produced nitric oxide mitigates sensitivity of melanoma cells to cisplatin

Melanoma patients experience inferior survival after biochemo-therapy when their tumors contain numerous cells expressing the inducible isoform of NO synthase (iNOS) and elevated levels of nitrotyrosine, a product derived from NO. Although several lines of evidence suggest that NO promotes tumor growth and increases resistance to chemotherapy, it is unclear how it shapes these outcomes. Here we demonstrate that modulation of NOc-mediated S-nitrosation of cellular proteins is strongly associated with the pattern of response to the anticancer agent cisplatin in human melanoma cells in vitro.

 
 

 

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

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Anyone done or heard of ablation (either radiofrequency ablation or cryablation) of a cancer tumor especially a bone tumor?
Anyone know how affective it is?

Looks like there are only a few places in the world to have it done. In the USA looks like for bone tumors only Rita Medical Systems (now AngioDynamics) in MountainView California.

Seems like they have good success for up to 7cm tumors although the larger the tumor the less successful they are.

Seems like they are using this for malignent lesions such as metastaic bone disease. (ie: where all my melanoma currently is).

Basically my current idea to keep from being paralyzed is radiation that starts tomorrow but if that doesn't get rid of the T10 vertebrae tumor I'm looking at other options for that specific tumor. Of course I will also continue the Tafinlar/Mekinist combo as I also try to get into a PD1 trial all assuming the radiation gets my spinal cord safe enough to travel. Yeah slightly complicated changing plan but I gotta try to do what I gotta do.

 

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Michellemjg's picture
Replies 4
Last reply 3/12/2014 - 4:38pm

Hi there,

My husband has been experiencing severe rigors.  The uncontrollable shaking, sweating and nausea have him wiped out.  I have had a very difficult time finding out about how to best handle it.  I located a random tip on the internet recommending to warm up his extremities, which we do and find that it helps a little.   We have a heating pad at his feet and a warming blanket underneath him. The rigors can last for hours and are intense enough where he cannot hold a glass of water or get to a bathroom.

Is there a blog about patient comfort?  It seems to me with the kaleidoscope of side effects for the various drugs that patients are on it would be somewhere on this blog, but I cannot find anything so far.  I assume it is my own ineptitude as I have not used a bulletin board before.

His fever has been high for 5 days now, high as 103 and lowest at 101.  There is a predictable time table with the onset.  Does anyone have any ideas of the timing with the Benadryl and Tylenol with respect to these symptoms?  Are there any other medications anyone has heard of or has tried?  Has anyone gone off the taflinlar for a short time?  Is there any data to support the cost/benefit analysis in doing that?

So far his doctor has him taking Benadryl and Tylenol.  I try to keep lots of liquids in him smoothies and Gatorade.  Food is difficult because of the nausea.

 

Would appreciate any advise.

Thank you,

Michelle

 

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Jewel's picture
Replies 2
Last reply 3/10/2014 - 9:51am
Replies by: Kelly Smith, Jewel

The great news is my husband remains NED 2 1/2 yrs from a stage 3C diagnoses, bad news

is he has a 5cm cyst in left kidney. It is giving him no symptoms. Not sure yet what the

next step will be....still we are over the moon.

Jewel

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