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 4
Last reply 6/29/2015 - 9:43pm
Replies by: Bubbles, Anonymous, Ed Williams

Here is a link  about how cannabinoids could inhibits the growth of melanoma.

 

http://thejointblog.com/study-thc-inhibits-the-growth-of-melanoma/#more-...

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Hello all, we meet with our oncologist tomorrow to learn what route Charles will take, he is Stage 4, lung tumor and subcarinal lymph nodes. Also, they need to check activity on his right leg, perineum.  His brain MRI is scheduled next week.........

We have tried to hurry up the learning curve, met with differing doctors.  We have become familiar with Ipi and Nivo, Keytrudo.......but know nothing about the Tafinlar/ Mekinist combo..

Does anyone have insight about this combo? Is it an effective "combo alternative" since Ipi + Nivo is not approved yet?

Thanks Rita

Rita

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Jubes's picture
Replies 6
Last reply 6/30/2015 - 5:13pm
Replies by: Jubes, kylez, Kim K, LaurenE

Hi all

i am doing really well. All tumours have disappeared on keytruda except the main one in my lung which has shrunk from 7.9cm at its biggest to 3cm x 1cm now. Just had my pet and it is 4.2 SUV but was 10.2 SUV this time last year. I am on steroids for the side effects from the keytruda. I have really bad arthritis type pain through my body. Much worse in the night and morning. Drs are thinking stay on keytruda and steroids as long as side effects are manageable. But some time in the future resect the lung tumour which is in the right lower lobe. Has anyone had this operation who could give me some advice? ( Drs say that in 50% of cases like this when they resect there is actually no tumour left and the brightness on the pet is the immune system working)

thanks

anne-Louise 

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Rita and Charles's picture
Replies 7
Last reply 6/30/2015 - 8:59pm

So how we eat to improve health............just laying it out there that I am a past pastry chef and there typically is ice cream in the fridge!  A friend who is a nutritionist has shared with us some big NO NOs on how we should be eating.  We eat well now, but indulgences exist......

How has everyone changed their diet in this new "cancer enviornment"?

Rita

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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 4
Last reply 6/26/2015 - 10:05am

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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