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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sunshinecoll's picture
Replies 1
Last reply 6/27/2015 - 9:30pm
Replies by: 273c

Had stage 3b. did tumor removal off my leg. Removed all lymph nodes on my right groin. A month after I have developed Vitiglio. I have not had the treatment yet and got the Vitiglio. Has this happened to anybody. I have read people get it after the Novo treatment but I dont start that until next week.

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las630's picture
Replies 2
Last reply 6/28/2015 - 7:36am
Replies by: las630, BrianP

Hey there!  Just wanted to post my great results so that people who are newly diagnosed can know that they too can have some great news to look forward to!  :)

I had a suspicious mole removed from my left inner knee back on May 13th.  My dermatologist called me on May 19th and said I had malignant melanoma and had to see a surgical oncologist due to the path report.

I had my appt with the surgical oncologist on May 21st and was scheduled for a Wide Local Exicision with Sentinel Lymph Node Biopsy for June 19th. 

I had my surgery on June 19th and had a fairly large chunk taken out of my left inner leg by my knee, and had 1 lymph node removed during surgery from my left groin. I have about a 3 1/2 inch incision on my leg and a 2 inch incision on my groin.

I was very anxious for the test results because I had a 1.2 Breslow, ulcerated, high mitotic activility path report from the originial biopsy that was taken on May 13th.

I had my post-op appt with my surgical oncologist on June 25th and was very very very pleased to hear that there was NO lymph node involvement!!!  wahoooo  praise the Lord!!  The surgical oncologist did say that there was some residual tumor left over from my original biopsy which is why they had to take so much tissue out, and that I was upgraded to a Stage T2b, but most importantly, I am an N0!!  :)

I do need to do physical therapy due to loss of strength and sensation in my left leg, but none of that matters when you hear you are now NED (no evidence of disease)!!!  :)

So prayers work my friends, and I will be more than happy to pray for all of you!

Lots of love and hope to yinz all!!

xoxo- Lisa

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Anonymous's picture
Replies 2
Last reply 6/29/2015 - 11:05am
Replies by: Jenncat0402, Happy_girl

My dermatologist sent my tissue biopsy to Castle Bioscience for them to run the Decision DX-Melanoma test.  It came back as a class 1.  Haven't had my SLNB yet.  Anyone have experience with this gene expression profile test?  Is it reliable?

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Rita and Charles's picture
Replies 32
Last reply 6/29/2015 - 2:39pm

Met with Dr. Greg Daniels today, Charles seeking second opinion.......I think that part of me hoped that seeing a melanoma specialist, he would give a better news story......and this whole journey would be over.  First off, Dr. Daniels spent so long with us - he is an amazing doctor, very knowledgeable and truly went through so much with us.....and yet we still come home reeling, trying to recap, listening ot the tape and make a game plan.  We walked away with more questions, more to think about but closer to making decisions. 

It seems the more we learn, the more we veer away from the lung surgery/lymph node removal.  We still need to have the results of a brain MRI, and areas of the most recent PET scan that need to be followed up on - Dr. Daniels was concerned about activity on the leg.  

I am finding that this forum is such a great resource to help us understand.  All of the stats and the percentages blend and blur together.  From both Dr. Daniels and our oncologist Dr. Kosty, leaning heavy towards immune therapy.   

Ipi alone - from my notes, 10% of people respond to Ipi and the length of time that you can be on it before tumors become resistant is 10 mos?  Once Ipi stops working, you advance to Nivo or Keytruda?

Nivo or Keytruda alone - better response rate 30% and can be tolerated for 2 years?

Ipi + Nivo Combo - even higher response rate and 88% of those that resopnd 2 years?

Side effects for all sometimes are too toxic and need to come off.....

Having the 3 choices - What would you do?  

Or, if he has no symptoms right now.....do you wait until there are symptoms?

Thanks for your help in explaining things to me!

Rita

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jessica_f's picture
Replies 11
Last reply 7/13/2015 - 8:20am

Hello everyone, it's been 14 years since I was last on the MPIP forum. I had Stage III cancer when I was 25, did a year of Interferon, and it recently came back in my lung. 

I had surgery in June to remove a 8mm met to my lower left lobe, margins were clear, as of now I should be NED. Wondering about next steps. Doc recommending 3 months of Yervoy. 

Suggestions I've heard from others (people who have fought Stage IV melanoma / clinicians in the field):

- Expanded access just opened for CHECKMATE 218 cliincal trial (Opdivo and Yervoy combo)

- PD1

I'm new to all of this again and the landscape has changed drastically since '01. Gathering info so that I can ask smart questions when I go for my second opinion.

Thanks for your help :)

 

 

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Rita and Charles's picture
Replies 1
Last reply 6/25/2015 - 7:51pm
Replies by: Anonymous

Has anyone had success with Ozone Therapy that they can share?

Rita

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Happy_girl's picture
Replies 3
Last reply 6/25/2015 - 5:00pm
Replies by: Happy_girl, Janner

Hi all! 

i think this is my paranoia, but is it common for melanoma to be in the opposite lymph node basin than it was originally found in? Like if mine was micro in one lymph node under my left arm, is it likely to be found under my left arm?   L feel like I am feeling a swollen node under my right arm and am getting all paranoid.  Thanks!

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pamela's picture
Replies 3
Last reply 6/28/2015 - 8:55pm
Replies by: aquamak, pamela

looking to put together a local support group

ThankS!
Pam stage IIIa diagnosis 7/2009

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arthurjedi007's picture
Replies 5
Last reply 6/26/2015 - 7:05pm

Thought someone might be interested to know NIH has different treatments than what I'm calling standard TIL. Apparently they test a tube of your blood looking for some type of melanoma. I sent this ahead of time. They also test your biopsy material looking for some type of melanoma. I also had that sent ahead of time. Now they just called it type I'm calling it type of melanoma. If the type is of something they've had success with over the last couple decades then they have a treatment that has a better success than their standard TIL. I could hear in her voice she was disappointed mine was not the right type. So it is still possible to maybe get what I call standard TIL for me. I'll have to go see them for screening. Just thought that was interesting to know. Now whether those treatments are some other type of TIL I don't know but I suspect it. Like maybe someone else's tcells thst worked great for that type I dunno I'm just speculating. I was kind of taken back when she said she had bad news which was about the types then she said they weren't seeing measurable stuff so I had to rattle off several off the top of my head I know the ct has shown the exact centimeters. So I wasn't thinking clearly about the TIL types until later.

Artie

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Anonymous's picture
Anonymous
Replies 0

How did your appt go with Dr. Daniels. What is he recommending?

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eturner82's picture
Replies 4
Last reply 6/29/2015 - 10:58am

Hey Guys I've been MIA for a little while. Here is my Adam update... The nurse that is in charge of things at NIH was so so so nice she went above and beyond to help me!! ( I would so recommend NIH due to her kindness alone!) sadly Adam was turned down after they looked at his MRI and they saw the Lepto. Adam is on a chemo combo right now ( he had one dose while in UVA 4weeks ago) we are waiting for his platelets to go up for his second dose. He's on 4mg of dexametazone every 6 hours and that mixed with the morphine has GREATLY decreased his pain!! He can still get up to go to the bathroom but walking is very tiring for him. I feel that we are truly taking each day as it comes and as long as pain is not a problem each day is truly a blessing. 

 

Emily

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affguy's picture
Replies 11
Last reply 6/29/2015 - 7:56pm

I've been almost entirely a lurker here the last couple of years, with very few posts, but have still very much appreciated the information that others have shared.  Sadly, today it was confirmed that my Dad's battle is ending shortly after failure of BRAF+MEK treatment.  He began it in February of last year, and last month he had throat and shoulder tumors removed (despite an otherwise clean PET scan).  Last week he suddenly became incredibly fatigued, lost his appetite, and had brain mets found on imaging.  Today the neurologist who viewed his MRI told us there are no further treatment options available due to the extent of brain mets and areas involved.  He begins hospice care tomorrow and is not expected to last more than a few weeks.  Fortunately for him, this is not expected to be a physically painful process, though we will have morphine available in that event.  It also seemed to be kind of for the best to see this coming over the last week, which dulled the shock a bit.  This has been and will continue to be an eye opening experience for me, as my experiences with death to date have all been of the sudden and unexpected variety.  It has also raised my awareness, as this morning I made a dermatologist appointment for an unusual lesion/growth on my arm that I'm pretty sure is nothing but am trying to be better safe than sorry.  We can shoulda/woulda/coulda my Dad's initial pursuit of medical care and the path that care has taken (interferon from 9/12 to 6/13, BRAF+MEK from 2/14 to today), and that's probably a normal step of grieving, but if nothing else it has increased the attention my family pays to protecting our skin and watching out for abnormalities.

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Kim K's picture
Replies 8
Last reply 6/28/2015 - 9:40pm

Just wanted to let everyone know.  IL-2 is "old" but for those who respond, there is a chance to die from old age instead of mel.  I am one of those people cool

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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I started the combo today. I took the mekinist with the tafinlar this morning.  I am wondering if taking it with the evening dose would be easier..maybe sleep through side effects?  I have been very tired today..a bit shaky...slight headache and my face flushed. No fever yet... Has anyone had a red face or noticed that the timing of taking mekinist made a difference?  I read the side effects that are possible and just need some input.  Thank you!

One voice can make a song; one life can change the world.

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mwconklin's picture
Replies 2
Last reply 6/24/2015 - 5:31pm
Replies by: mwconklin, beans920

Hi, I have been stage 3 since 11/2012. I had scars from surgical drains on my left leg about 6" from the wide excision. They had long ago healed but in the last few months one of the scars has become dark, inflamed and what feels like a hard scab forming over it. Has anybody had this happen and do you think it is serious? Thanks for your input. 

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