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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Lddaughter's picture
Replies 5
Last reply 3/9/2017 - 4:45pm
Replies by: debwray, Bubbles, Lddaughter, Mat

So my mom  got back that we are BRAF positive and we have a few more scans for her eyes, pelvis and heart. They want to start her on a S1320 trial. Honestly googling it I have a hard time interperating the results, facts and informations posted online. So I decided to stop. Has anyone heard of these? Is the BRAF Positive indicatior a good thing?

We had a great first meeting with the specialists where they want to work on pain management and then start treatments. The tests are to make sure she qualifies for this trial. I will tell you, a good specialist seem to make a world of difference. 

Any input would be fantastic. We still have so many questions but we know that is going to be the case for a good while. 

Thank you!

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NSNewf's picture
Replies 8
Last reply 3/13/2017 - 1:59pm
Replies by: NSNewf, Delores T., Mark_DC, debwray, Anonymous

As an update I am awaiting path for neck dissection (possibly 4 weeks). I met with oncologist prior to surgery and my options  are limited to HDI. 

Other than through a trial have other Stage 3 Canadians been offered other treatments?

 

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aquamak's picture
Replies 3
Last reply 3/29/2017 - 8:28pm
Replies by: aquamak, NSNewf, jahendry12

Hello all, havent posted in quite a while.  I'll be going for my annual PET/CT scan in a week and a half (I alternate PET/CT and CT every 6 months).  Hoping for the best and if scans are clear, I will have reached the 4 year NED mark!  Hoping and praying!

Mela-No-More

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momof4boys's picture
Replies 2
Last reply 3/9/2017 - 2:14pm
Replies by: CindyCo, jahendry12

Josh if you are checking in, I've been thinking of you. Wondering how you are doing? Hoping everything is well.

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Nicklindner's picture
Replies 13
Last reply 3/10/2017 - 12:50pm

I have found that reading peoples good news has given me encouragement and hope so I wanted to share some of my good news as well. 

Quick Background - I am a 33 year old male initially 3c in 2011 was given a favorable outcome/prognosis after all melanoma was surgically removed.  Found a lump on my right chest wall October of 2016 and became stage 4.  PET showed that it has spread to my lung, spleen, groin, right side of my body and was not given a favorable prognosis. 

I started IPI/Nivo combo 12/15/16 and got nearly every side effect imaginable - it was comical.  After 3 treatments I got a severe case of gastritis.  I was throwing up blood, liver enzymes were elevated, Spleen was inflammed.  So they cancelled the 4th treatment and put me on high dose prednisone. 

Due to debilitaing back pain my doctor thought that the cancer might have spread into my spine so we scheduled a CT scan.  I got the scan results back today.  So the scans did not show any progression into my back - that remains a mystery.  The good news is that the melanoma is no longer detected in my groin or on my right side.  The tumor on my lung shrunk from 3.8cm x 3.4 to 1.8cm x 1.7.  The tumor on my spleen shunk from 1.6cm x 1.7 to .5cm x .6. 

My doctor was very encouraged by this as was I.  It was so awesome to hear the excitement in her voice as she shared this news with me.  We are planning to resume the opdivo treatment at the end of this month or in April once bloodwork gets back to normal. 

I wanted to thank everyone on here for the knowledge, time and compassion that they have shared.  You have helped make this journey for me much more manageable and have provided medical hope when I wasn't sure that there was any.  I realize that this journey will probably never end for me and I will treat this like a chronic illness for the rest of my life but I am starting to think I might be able to see my kids grow up and have kids of their own and that is a good feeling.  I think about many of you daily and pray for you and your families as well.  I wish you all the very best. 

Thank you!

 

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Dreaf01's picture
Replies 2
Last reply 3/8/2017 - 12:34pm
Replies by: Hukill, UBContributor

Hi all! Hope everyone is kicking Mels A**. I was diagnosed officially as Stage 1b on early Jan. After a wle and slnb, margins came back clear with negative nodes. Primary was 1.5mm on my right upper thigh, no ulceration, but 4/mm2 mitosis. Anyways over the last week I have noticed 3-4 hard little lumps in the middle of my upper abdomen. They almost feel rubbery and seem to move slighty. Could this be mets? I have also had some pain off and on, on my right side upper abdomen. I dont go back to see my surg. Oncologist until 4/5, and am wondering what doctor to call. Any advice would be appreciated.

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daughter1's picture
Replies 1
Last reply 3/8/2017 - 12:27pm
Replies by: Hukill

I was wondering if you could help me. I have been reading number of "mets" and wonderful news about the immonotherapy.   My mother is a patient at Sloan.  She had a new cat scan and MRI done at Sloan prior to starting her opdivo/yervoy treatment.  

The scan came back with good news in the brain- nothing

but the liver had two large masses.

 Numerous bilobar hepatic metastases are

identified. Although differences in technique likely account in part for

the apparent change many more lesions are seen on the present scan than on
the previous. A 4.0 x 4.3 cm mass in the posterior right hepatic lobe
previously measured 3.5 x 2.8 cm. A 5.4 x 4.1 cm mass previously measured
5.4 x 3.5 cm. Tumor likely invades through the hepatic capsule. Additional
numerous lesions are now evident that were barely if at all perceptible on
the previous examination. No intrahepatic biliary ductal dilatation.

 

My question is this-  it seems as if this is all over her liver.  Providing this combo works, can it truly shrink these masses after only 4 treaments?

She is doing very well with very little side effects. just fatigue so far.  

I am just confused because I read all these promising stories but they all seem to refer to "mets" and have heard very little about "masses"

is it the same thing?  how do you all know the number of mets?  

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KRob's picture
Replies 5
Last reply 3/10/2017 - 10:30pm

Long time stage IV  survivor and (one time) regular poster, I like to drop in to see what the latest is and share with all the new folks that there is hope in surviving melanoma.

I just passed the 12th anniversary of being diagnosed stage IV and am currently NED. 

I am always thinking of my fellow MELS and hoping nothing but the best for all of you in your journeys.

Also, anyone in the central Ohio area who is looking for a melanoma support group, we have one that meets at 6:30- 7:30/8:00 p.m. the 3rd Wednesday of each month at the Stephanie Spielman Center at OSU/James Cancer Hospital in Columbus, Ohio.

Information on our annual melanoma symposium, the latest in research and treatment options, as well as, guest speakers and recreational outings throughout the year, make it one of the best support groups in Ohio! Our facilitators are members of the melanoma team at OSU. They and other members of the group, including our docs, ride and/or participate every year in Pelatonia- they really live, breathe, and dedicate their lives to fighting melanoma. 

Come join us!

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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newmanmark's picture
Replies 12
Last reply 3/9/2017 - 11:31am

So I got some great news today!  After 3 rounds of the Ipi/Nivo combo my tumour has almost shrunk in half.  It was 5.7cm in October and is now 3.2cm.  Even though its not a complete response as I was hoping for, my oncologist assured me that this is a good response. The treatment has damaged my pituitary gland but that can be managed.

So now I have the option to continue with just Nivolumab.  I live in Canada so this is being done through a clinical trial.  Over the past few months I have read a lot about immunotherapy and there is an opinion that if I am getting a response then in theory my immune system should now be activated and will continue to fight the melanoma.

Initally I thought that I would continue on with the Nivolumab until it no longer works but now I question if this is the right decision.  If I do I run the risk of additional side effects.

For those of you out there currently on Nivolumab what convinced you to continue you on treatment for greater lengths of time?  Once you had a response, what was your oncologists opinion about proceeding.  I know some people have been on this drug for one year or even longer.

Thanks
Mark

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RitysMom's picture
Replies 11
Last reply 3/11/2017 - 8:28am

Hello all,

I have been a lurker since August 2016 when my 31 year old daughter was diagnosed with Stage IV Metastatic Melanoma. I’ve found lots of info on this board, but have not been led to post til now. I’ll give as much background as I can before asking my specific questions.

Kristine’s primary was a melanoma on her back in 2013. They did a wide excision and that was that. She was visiting in May 2016 (she lives in Alabama, we live in California) when she felt a lump under her breast that was painful. After returning to Alabama, she saw her dr and had the lump biopsied. It came back as melanoma. She had a PET scan and MRI at the end of July. On Aug. 3, 2016, we received devastating news. She had numerous lesions throughout her body, including in her brain, liver, lungs, and spine. They said they were too numerous to count. She had three weeks of brain radiation and then began the tafinlar/mekinist combo. She very quickly noticed the tumors shrinking. In early Nov, she had a brain MRI and it showed that all the brain mets were gone! We were thrilled. She was struggling with side effects, but we were seeing amazing results. She had another brain MRI in January...still clear. Now we were just waiting for another PET scan to see how taf/mek was affecting the tumors in her body.

She had the scan last Thursday and got the results today. The encouraging news...there are only four tumors left in her body. The discouraging news...two of them were not in the July scan. Her oncologist expressed concern that they were new. He said to continue on taf/mek until she stops responding and then move on to immunotherapy. He is going to try and get her another PET scan in 3 months when she sees him again.

Some questions that I have now:

My hope is that the two ‘new’ tumors could have developed in the five weeks between the July scan and when she began taf/mek in September...is that possible?

The dr said to stay on taf/mek til she stops responding and then move on to immunotherapy...will she ever be able to be off meds?

Dr also said that she’d know she isn’t responding to taf/mek when she starts to feel lumps returning...does this mean that the cancer is not really going away?

Is surgery and/or radiation a possibility for the four tumors that are left? She sees her radiation oncologist in April.

I’ve read that she really needs to be seeing a melanoma specialist. She will be looking into whether her insurance covers a second opinion. Does anyone have any insight into the process? Could anyone recommend a specialist? We know she’ll need to travel. She is located in Foley, Alabama, near the Gulf Coast and halfway between Mobile and Pensacola.

Thank you for reading and for any insight you can give.

Cindy

Cindy 

Mom of the beautiful Kristine

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CindyCo's picture
Replies 12
Last reply 3/8/2017 - 9:45am

Today Dr. Ribas told us that immunotherapy is not an option anymore for my mom.  After getting hepatitis and colitis from one dose of ipi/nivo, then high liver numbers from one dose of keytruda, he does not think her body is able to take immunotherapy.  He is planning to have her start Abraxane next week, which is a chemo.    A quick search of this forum shows that not many people are on Abraxane and it's mostly offered when there aren't many more options. It also looks like a lot of clinical trials will be out too, since most are immunotherapy based.

I'm afraid to ask, but can anyone share their experiences on Abraxane?

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Today Dr. Ribas told us that immunotherapy is not an option anymore for my mom.  After getting hepatitis and colitis from one dose of ipi/nivo, then high liver numbers from one dose of keytruda, he does not think her body is able to take immunotherapy.  He is planning to have her start Abraxane next week, which is a chemo.    A quick search of this forum shows that not many people are on Abraxane and it's mostly offered when there aren't many more options. It also looks like a lot of clinical trials will be out too, since most are immunotherapy based. 

I'm afraid to ask, but can anyone share their experiences on Abraxane?

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Anonymous's picture
Anonymous
Replies 9
Last reply 4/6/2017 - 2:16am
Replies by: Pearl1578, sandys, Kim K, Treadlightly, JustJaren, Anonymous

Good Afternoon, I feel truly blessed to have found this site. I was newly diagnosed with Melanoma after a long 10 day waiting period on the biospy of a mole on my back. I am scared to death and cried for days. They also felt a spot on my thyroid and awaiting the US hoping they are not connected.

 Now that the crying is over I need to deal with getting through this. I have a wonderful surgical oncologist that i have complete trust in but the unknown is scary. I need to get my labs and US done before they will schedule surgery for removal and staging. They are also talking about possible grafting.

I have questions about staging...several people that I know that were diagnosed years ago never got staged? Treatment seems to be different for some? I understand that staging determines the treatment following the surgery, please advise me if I am understanding this correctly.

I also live in the Irvine area and would liketo find a local support group for Melanoma.

Thank you for you advise and help in advance!

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Wife_WilliamR's picture
Replies 7
Last reply 3/8/2017 - 1:34pm

I have been a "creeper" on this page since 2010, but never posted.  Sorry we are all on here and have to meet like this!

In 2000 my husband William had a Stage I melanoma removed from the back of his hand.  In 2010 it returned to his elbow (stage IIIc), he had surgery to remove, 5 radiation treatments and tolerated 5 months of Interferon.  It returned to the elbow and small lung nodules in August 2014.  He had multiple surgeries on his arm.  He started Ipi/Opdivo combo trial at Johns Hopkins from December 2014 - October 2015 and although that seemed to keep his slow growing melanoma at bay it was not eradicating it.  Dr. Sharfman recommended we go to NIH for TIL therapy.  He received TIL during the month of February 2016 along with 4 doses of Keytruda.  Until November 2016 the small lung nodules remained stable, but started showing signs of progression.  Docs at NIH recommended the Urelumab/Nivolumab trial which would be back at Johns Hopkins for us.  We also went to Memorial Sloan for a second opinion with Dr. Postow who thought the trial was a reasonable next step for us.  William started the trial 1/6/17 and after 4 treatments the scans show minimal growth.  He is to stay on the trial and get rescanned 4/21/17.  If in April there is growth then they would remove him from the trial.  I am looking for thoughts on what would be next to try - he is BRAF negative but does have the NRAS mutation.  We have "heard" things like TVEC and chemo could be the next step.  I am the one who does all the "research" for William and am terrifed I am missing the best opportunities for him.  (We live on the East coast, but can travel for treatment.)  Thank you in advance for anything you have to offer!!

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