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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Ginger8888's picture
Replies 18
Last reply 7/13/2016 - 11:06pm

Has anyone tried this?...I have been doing some reading on this in hoping it will be come legal in my state soon.I've read a lot of success stories..

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laulamb's picture
Replies 2
Last reply 7/13/2016 - 11:03pm
Replies by: desertsun, Janner

Can someone help me understand what this means?  No mutuations or BRAF?

 

ONSIGHT NGS BRAF SEQUENCING REPORT:

NO MUTATIONS IDENTIFIED.

THIS WAS A NORMAL SEQUENCING STUDY IN WHICH NO DISEASE ASSOCIATIED MUTATIONS OR VARIENTS OF UNCLEAR SIGNIFICANCE WERE IDENTIFIED IN THE TESTED SPECIMEN WITH BRAF (EXONS 11, 15) INCLUSIVE OF V600

CLINICAL AND PATHOLOGIC CORRELATION IS REQUERED TO INTERPRET THESE FINDINGS:

 

 

 

 

 

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Ajwells's picture
Replies 4
Last reply 7/13/2016 - 5:10pm

My brain MRI was about 4 weeks ago. I just got the results in writing and reading through them I noticed something interesting. 

First, of course, it states that there is no evidence of metastatic disease. 

Under that it states that there is a 4mm left parietal calvarial nodule adjacent to the lambdoid suture most suggestive of a post sutural epermoid though setting follow up of stability may be warranted.

I'm guessing this is from the insicion on my scalp from the melanoma removal?   

My surgeon didn't tell me about this, so I'm guessing she didn't feel it was a problem. But should I ask about it to get more information?  I don't think I will be getting another MRI for quite a while since I haven't even started immunotherapy yet. I meet with the medical oncologist tomorrow. Maybe I'll ask her. Just my anxiety hanging out over here. 

27 year old mother of three. Diagnosis stage 3a.  Awaiting immunotherapy. 

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Thanny's picture
Replies 3
Last reply 7/13/2016 - 2:56pm
Replies by: Sflynn, desertsun, geriakt

Hello all, I'm developing dry and flaky skin around the corners of my mouth and on my eyelids. I'm not having any luck keeping it at bay with neosporin or lotion. If you have any suggestions please help. 

 

Regards,

 

Tanny

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Anonymous's picture
Anonymous
Replies 12
Last reply 7/13/2016 - 11:06am

My mom is starting MK-3475 on Tuesday after no success with Yervoy.

Matted nodes removed mid-February 2014. They had to leave a small piece on her vein so as no to compromise the vein/leg.

Lymphodema of her leg and extreme swelling of her abdomen. Fatigue, sleep deprived, can't get comfy, swollen stomach causing loss of appetite and nausea. Scan Last Friday shows cancer moved to nodes in stomach, hence the fluid in her belly. Brain scan negative.

Starting MK-3475 on Tuesday. I'm not sure what to expect.

Doctor stated that if she waited and gave the Yervoy more time to work that she could find herself bed ridden with organ failure in a couple short weeks. This seems to be her only chance.

I can't seem to find anything definitive on what her chances are with this trial drug. It's now an expanded access protocol, so we do know that she won't get the placebo.

Does anyone know where I can find anything that outlines the effectiveness of MK-3475? I know there is no black-and-white here, but I just need something, anything, at this point.

We are all a mess. Worst nightmare. There is no other way to say it. Watching the most important person in your life go through something like this is beyond heartbreaking. Watching my parents cope with it, together, is beautiful and also so incredibly sad. My mom is such an amazingly strong and profound life force to SO many people. I am still in denial and coping - if you can call it that - poorly. I don't even know where to begin.

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tkrepr's picture
Replies 1
Last reply 7/12/2016 - 1:02pm
Replies by: dvd

My brother-in-law is currently undergoing treatment for stage IV melanoma under the Opdivo/Yervoy regimen.  After his 3rd treatment, he began to develop severe side effects (severe fatigue, shortness of breath, severe insomnia).  His liver enzymes have elevated to ALT/GPT=1246 and AST/GOT=670.  He has had severe insomnia for over one week accompanied by hallucinations at night.  His doctor has stated that his ability to take steroids is limited due to complications from diabetes.  Due to a severe lack of sleep, he is at the end of his rope mentally and physically.  Sleep aids such as Ativan and Ambien have not helped. The doctors are discussing possibly putting him in a medically induced coma to allow him to rest.  He is completely miserable.  We are desperate for any suggestions that may help with these side effects.  Here are my questions:

1)  Have any of you experienced liver enzymes elevated to this extreme?  If so, did they improve?  Was there permanent liver damage?

2)  Does anyone have any suggestions to address the insomnia?

His melanoma, which had exploded prior to treatment has completely disappeared, so his big hurdle at this point is trying to get through these side effects.  Any advice would be greatly appreciated.

Terry R. 

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/12/2016 - 11:32am

I have been searching the Internet to find some answers but I leave more and more confused.  My question is about flat moles. Some sites say these are abnormal moles but when I go to my dermatologist he says everything looks fine.   All of my moles are completely flat moles that do not raise above skin.  I had one removed last year and it was mildy atypical.  Should I also be concerned that I have 2 flat moles on my buttocks or can nornal moles develop on areas that don't see the sun? Thank you 

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Nicky's picture
Replies 6
Last reply 7/12/2016 - 6:59am

Hi everyone.

I'm just checking in and I'm not sure if anyone still remembers me.  I joined over 13 1/2 years ago.  

I am pleased to let you all know I am still NED after 16 years.  You can read my story under "Nicky".   No sign of any melanoma.  I have had 3 melanomas of varying depth.  One spread to my lymph nodes.  My treatment was surgery and radiation therapy.  

Reducing stress has helped me along my journey and keeping positive.

I am sending my support to anyone battling this disease and wish you all the best.

 

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Jennab0525's picture
Replies 6
Last reply 7/11/2016 - 8:02pm

Has anyone experienced right stomach/side pain? Trying not to panic but I've had this pain for awhile now (about 6 weeks) and there seems to be no cause to it? I had my CT scan on June 17 and it was all clear. I mentioned the pain to my oncologist and he felt it was possibly muscular given my scan was perfectly clear but he said if the pain persists he would order an MRI of my liver and gallbladder. The pain is definitely not severe or dibilitating just more sore/dull ache. Kind of like if you did a ton of sit ups but it's off to the right side. Sometimes below my ribs and sometimes down towards my tummy. 

We bought a new house recently and have been doing a lot of work (yard work, painting, etc) so I guess it could be muscular but to last this long? What are everyone's thoughts? Anyone else experienced this? Should I be concerned given the fact my scan was clear?

Jenna

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Anonymous's picture
Replies 7
Last reply 7/11/2016 - 4:46pm
Replies by: gigembritt, Janner, Anonymous

Hi all!

I had a mole on my leg biopsied 1.5 weeks ago. The path report came back as stage 1a, 0.44cm deep, no ulceration, mitotic rate of 0.

A few days ago I met with the surgeon who will be removing the mole. He said that he won't know the exact stage until the entire mole is removed which is standard as far as I can tell.

Any chance anyone out there knows how often these measurements change drastically? Should I put any stock in the initial results?

Thanks,

32 and a little scared out of my mind

Alc

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sallyandree's picture
Replies 11
Last reply 7/11/2016 - 2:03pm
Replies by: sallyandree, Patina, Ed Williams, Bubbles, MoiraM, Anonymous

My significant other has Stage VI melanoma and has been on an Odivo and Yervoy regimen since the beginning of April (4 treatments, given every 3 weeks).  I cannot recall what the dosage is that he has been on, but his doctor said that he has been taking the maximum amounts.  He has reached the end of the regimen, and we are taking him in for a PET scan on Monday to see if it has been working.  On Wednesday he will be starting a regimen of Opdivo every two weeks (a total of five treatments).  Has anyone else been through this regimen?  I am hopeful that the side effects from just taking the Opdivo with no Yervoy will be less hard on him than the combination of the two.  The melanoma has traveled from the original site (his back) to his stomach, and it is difficult for him to eat much, let alone that the medicine has him throwing up daily. 

Thank you, Sally

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jvictoria's picture
Replies 14
Last reply 7/11/2016 - 12:57pm

Hello everyone, I’m back for the next phase of my journey…

I was on the Ipi vs Nivo trial for 7 months until the cancer came back in my arm at the site of my SNB.

I had recent scans and a lung nodule that was not growing during the trial went from 4mm to 10mm. Docs suggested a lung biopsy to see if it’s melanoma. Did the biopsy (!!!Ouch!!!) Still in pain two weeks later. Unfortunately, results came back inconclusive.

Now, Doctor (A) suggests wait and see approach; scan in 2 months then possibly biopsy again or something else, depending of what shows up.

Doctor (B) suggests removing the nodule via thoracic surgery and be done with it.

I kind of have this uneasy feeling that melanoma is lurking… I guess we probably all do angry

So gang, any thoughts on A vs B? Does anyone have any experience with thoracic surgery to remove lung nodules… what’s the good, bad and ugly?

Thanks!

Juan

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Bubbles's picture
Replies 4
Last reply 7/11/2016 - 12:18pm

A Phase 1 trial with pembro combined with MGA271 (Enoblituzumab - an anti-B7-H3 monoclonal antibody) is recruiting for folks with a variety of solid tumors, including melanoma, after having failed at least one immunotherapy and having measurable disease positive for B7-H3.  It is phase 1...so it's not a done deal...but everyone gets the meds. Many more people are being helped by ipi and anti-PD1, which is great...but there are those who fail to respond...so if you are in need...this might be something you'd like to talk to your doc about.

Here's the link to the info I put together:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/07/new-trial-recruiting-pembro-plus-mga271.html

And, yes, jpg...before you get your britches in a bunch...this is a link to my blog.  It is a post I put together.  It contains three links within...more than MPIP spam blockers will allow...as well as photos of slides (not possible for me to upload here)!!

Check it out if you are interested. For what it's worth.  I wish you all well.  Celeste

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Replies by: MoiraM

Hello,

I am wondering if anyone has any knowledge or experience with  immunosuppressant drug treatment. I have had dozens of moles removed, they were all dysplastic. My melanoma was diagnosed as 2A, ulcerated and a high miotic rate. I have been NED for 7 years and while I don't stress over re-occurrance I do worry about the risks of  immunosuppressant drug treatment.

 I have had chronic idiopathic urticaria ( daily hives) and angio-edema ( subcutaneous tissue swelling) since 1983. Angioedema causes large, disfiguring facial swelling, the hives are hot, itchy and some are painful. I have head two long remissions, first 15 years, then 12 years. My last flare was 3 1/2 years, the current one 2 years. Antihistamine treatments have failed as well as prednisone, and just recently a prescription drug named Xolair, a protein that resembles one type of human antibodyI am afraid to take  immunosuppressant drugs because of the risk of the malignancy they all carry.

I'd appreciate any help anyone here might offer from experience or knowledge, thanks!

 

susanspotless

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Hello All - I'd like to start by saying how thankful I am for this forum. Whenever I have a question, this is the first place I go to seek others opinions.  There is a wealth of information and support in this group.  

Heres my question. My husband had 7 rounds of keytruda and treatment was stopped for 2 reasons. 1) he got severe diarrhea & 2) his scan showed no reason to continue - which was awesome news!  He took steroids for the diarrhea and all was back to normal. His last dose of keytruda was on May 10th. Well, starting on July 4th he started experiencing the same diarrhea just like back in mid May. Is it possible for the keytruda to still be in his system?  I'm going to contact his oncologist and GP on Monday if it does not subside by then. 

Any others have a similar experience?  

Thanks in advance. 

Julie

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