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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vince1962's picture
Replies 2
Last reply 2/16/2015 - 6:41pm
Replies by: vince1962, Janner

Ok I have a 9mm nodule mid right back, nodes on the right side are pallable but also shows some spots high left subpectoral,since it,s left the node basin and spread to the left side would that make it stage IV?

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My husband is a stage 4 melanoma patient at UCSF who has been on PD-1 for the last 7 months. He has three main tumors in his liver that are being treated and with a combo of PD-1 and a couple of chemo embolization surgeries his scans have stayed mostly 'status quo' since he was diagnosed. No spread outside the liver and no major growth in the liver.

 

We just got back from the National Cancer Intitute (NCI) and was accepted into a t-cell therapy clinical trial. It's excellent news and we're in the process doing our research and getting opinions from his melanoma specialist and interventional radiologist at UCSF just to ensure it's the right decision for right now. It seems like a slam dunk but as you all know it's a huge lifestyle shift to move across the country for such an intensive treatment.

 

Has anyone on the forum gone through it and had a good or bad experience within the last year or two? I found threads from 2012/2013 but treatments change so quickly.

Amanda

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newmanmark's picture
Replies 4
Last reply 2/18/2015 - 4:13am

Hello,

I live in Toronto, Canada and have stage 4 melanoma.  There is a clinical trial here in Toronto that is combining a BRAF inhibitor with a MEK inhibitor.  There are no PD1 trials available at the moment and the only way to obtain PD1 is to fail on BRAF and IPI.  The company will then grant compassionate use.

I found a trial in Pittsburgh that will be opening in March that combines BRAF+MEK+PD1.  Here is the link.   https://clinicaltrials.gov/ct2/show/NCT02357732?term=PD1&rank=27

It seems to me like there is more hope in a treatment involving PD1.  If I start the Canada trial I will no longer qualify for the US trial because I can not have prior use of a BRAF or MEK inhibitor.

Obviously doing a trial outside of my country will present some challenges but I am willing to travel if it's a better option.  Does anyone have any thoughts or insight?  I'm not sure what to do at this point but have to make a decsion soon.

Thanks

Mark

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clthomas2131's picture
Replies 6
Last reply 2/20/2015 - 12:31pm

 

Does anyone have any experience on or about the trials for:

 

Avastin and/or Yervoy 

 

Interferon and/or Yervoy?

 

Those were 2 of my options with the 3rd being just yervoy.

 

Just trying to get as much feedback as possible.

 

Thanks!

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JerryfromFauq's picture
Replies 1
Last reply 2/16/2015 - 9:45am
Replies by: rosa1

I  am in another group that had an Italian lady join yesterday.She is wanting private conveersations with  ""someone has the state IV with BRAF V600E and met brain?" 

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

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csellers23's picture
Replies 10
Last reply 2/19/2015 - 9:11pm

My husband has had one round of keytruda. I noticed what i thought was a bruise on his ankle. Now both ankles are swollen and the bottom of his feet are red it happen fast. It hurt so bad he couldnt walk. I gave him one ibuprofen but cant give him much due to brain mets.has this happen to anyone? If so how long did it last and did they give you any meds to take it away? Also his joints hurt all over. How long did that last for you? Thank you all.

Crystale

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ncdaniel's picture
Replies 5
Last reply 2/16/2015 - 9:38pm

Many of us say Happy Valentine's Day today, but for some from this site the person they most want to say it to is gone. In my case Velma went to be with the Lord on July 15th last year, So today is just another reminder she is gone as I looked at ther grave. I write this not to discourage those on this site but to encourage you to celebrate life and fight the beast. Love those you are with and love life. I was fortunate through 3 1/2 years that my wife of 44 years fought melanoma that we were both strong believers in Jesus Christ and had our faith to carry us through knowing we would be together again in Heaven. For caregivers who have a spouse or loved one fighting melanoma it is much like having it yourself as you go throught scans and  appointments waiting for results, but yet we bear none of the direct pain. My wife through her faith always had the ability to say "I am Doing Okay" when ask how she was. I would ask her how she did after MRI's Pet/CT's and other treatments like IL-2 and Gamma knife with the frame on all day and hours in a machine and her standard answer was " I just prayed while I was in it". Friends would ask her when her next appointment was and she would simply say " i don't know you will have to ask Danny " he takes care of that for me.

For me the title of caregiver became the most important title I have ever had. I had important Automotive positions in my engineering career and then built custom homes featured in magazines, but noe of those positions carried the pride and honor I had as a caregiver for my wife. While I am sad she lost her battle I still keep up with melanoma advancements and post here and hope more and more will reach NED status. I know for all the melanoma battle can be difficult . I wish i could share with all of you how important our faith was to Vel and me, as it was our rock in this fight. I had the honor of keeping her in our home until she took her last breath and as she passed on a tear came out of her eye by me as I know She saw Jesus. For you who have read this all the way thru hug the caregiver or the person battleing melanoma as you can fight melanoma and come out richer for it. For all keep up the good fight and beat the beast and do say Happy Valentine's day to your loved ones.

Still wanting to fight Melanoma,

 

Daniel

Trust in God - Live one day at a time

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ashlee12's picture
Replies 7
Last reply 2/16/2015 - 2:25pm

I have a mole on my chest ...it's bigger then the tip of a pencil but smaller then the eraser... It is a light brown and I really don't know how long it's been there... I just had a full body check on Tuesday.. Almost a week ago... 

 

About 4 months prior I had melanoma in situ on my leg... Now I'm nervous about all my moles...

 

 

the the one on my chest like I said isn't super big and its light brown.. It's not raised but if you touch it it feels like a bump......

 

i I guess im concerned about the bump is that normal? And In just nervous its melanoma but looks normal. And I did take a picture of it for monitoring and I don't know if it's gotten bigger or anything :/ im kinda freaking out 

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Kmiles's picture
Replies 4
Last reply 2/17/2015 - 10:08am

My diagnosis was 10/29, WLE 11/20 with 3 positive nodes.  12/29 complete node dissection.  I have yet to have any testing includes even just a chest X-ray. Is that normal? At what point she I expect one.  

 

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Kmiles's picture
Replies 1
Last reply 2/16/2015 - 12:08am
Replies by: AnitaLoree

My diagnosis was 10/29, WLE 11/20 with 3 positive nodes.  12/29 complete node dissection.  I have yet to have any testing includes even just a chest X-ray. Is that normal? At what point she I expect one.  

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clthomas2131's picture
Replies 4
Last reply 2/13/2015 - 12:11pm

Just recently diagnosed on  1/26 with Stage 4 melanoma. According to PET scan it is in my neck lympnodes and a small spot in 1 lung.  Found out today that I do have a BRAF mution of L597P which from what I was told is extremely rare... 

First oncologist said he wants to do neck surgery and start me on pill therapy.

Went to second opinion today at Cancer Center of Excellence(UAB) and met with an oncologist that specializes in melanoma today. He is sending me for a head MRI and a ENT visit to rule out any other tumors but suggests due to the BRAF mutation most of current treatments would not do me any good because of the type of mutation I have. His suggestion is no surgery at first, but to start an IV treatment due to my age and health and assuming nothing going on in my head he suggested we could go into a trial and be aggressive and do Yervoy/Interferon ( aggressive) or Yervoy/Avastin( middle of the road) or just Yervoy.  He said if I had surgery first with recovery time it would put off treatment and I could have more tumors pop up while we are waiting...  

 

Advise? Suggestions? Questions we should of asked? 

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Wader's picture
Replies 5
Last reply 2/17/2015 - 9:38am
Replies by: _Paul_, Wader, Janner

I'd like to keep track of those moles so if they change that can be caught early. First I tried to take pictures with my cellphone. However, it is really difficult to keep the lighting consistent each time. Then I found this app, Doctor Mole.

http://www.doctormole.com/

I just tried the free version. To get the full analysis it requires to pay. Compared to the treatment we've paid this app costs nothing. However, I'd like to know how it works before I swipe my credit card. Can anyone share some experience? Or any advice for keeping track of moles? Thanks so much!

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Has anyone else diagnosed as Stage IV with brain mets had flushed skin with prolonged blanching? We had our four week post SRS check yesterday and the Radiation Oncologist took an interest in it. He is the one who had prescribed Dexamethasone for brain swelling  after the SRS, so had it been due to the steroids I think he would have mentioned it. I've asked my husband to check with his Primary Onc but he's hesitant. We start Yervoy on Monday. Thoughts? Thank you. 

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RGal's picture
Replies 2
Last reply 2/14/2015 - 11:01pm
Replies by: ncdaniel

My father's melanoma spread to his lungs, multiple lung nodules that are now causing him shortness of breath quite easily.   He just started a clinical trial of an inhibitor and and anti pd-1 drug.  I'm worried about his lungs failing before the immunotherapy starts to (hopefully) do it's job.

Has anyone had a similar diagnosis?  

 

Thank you!

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