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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StephyD83's picture
Replies 15
Last reply 11/1/2014 - 4:00am

Hi Everyone-

I was DX with Melanoma In-situ in March of this year. To give you the history I had a severly atypical mole on my forehead that was removed with a shave biopsy in Nov of 2012 & my Derm at that time told me it was begin & no further treatment was needded. I only just found out that it was actually severly atypical & the Pathologiest  recommened that it be removed via completed excision. This was not dont & it grew back. I went in to my new Derm in Feb of this year & she sent me to plastic suregy for removal & 2 surgeries later it was completly removed. I had found a lymph node in my neck on the same side as they Melanoma so I went to teh Dr & they sent me to Oncology PET Scan, biopsy, etc. The 1st PET was completly normal in April 2014. Now I just went yesterday for a follow up PET & this is what was seen. 

Ther are various izes axillary nodes seen with slight uptake the most prominent 13 x 7 mm in the left SUV 1.96 &  the most prominent in the right 9 x 6mm  SUV 1.61. There is increased uptake in the adnexa slightly larger in the right SUV 5.23 then the left SUV 3.40. There is a linear are of slightly higher uptake at the superior endplate of the bodies of the spine, the highest uptake is seen in T11 SUV 4.03. My referance SUV for mediastinal blood pool is SUV 2.09, Liver SUV 3.51, & Spleen SUV 2.83. Also, they did see several lymph nodes in my cervical region & in my jaw & under my jaw with no abnormal uptake.

 

Does anyone know what this means? Thank you in advance!!!

 

Thanks!

Stephanie

 

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GAngel's picture
Replies 8
Last reply 11/1/2014 - 2:29am
Replies by: DZnDef, GAngel, Mat, rick1981, RAngel

Hello all...just wanted to share our great news that Rudy continues to remain NED. He is still on the Tafinlar/mekinist combo taking it intermittently as well as taking cannibas oil daily. We are so thankful and blessed. We want to encourage all of you to keep on fighting and never lose hope. Keeping positive is so important. 

God bless you all...we are praying for you.

Gina and Rudy Rangel

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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KRob's picture
Replies 1
Last reply 10/31/2014 - 8:50pm
Replies by: tschmith

Friends, 

I am a stage IV survivor (10 yrs this Feb) who visits now and again to check in on others, get the latest news, and try to share hope.

For those who have been and those who are new to this world of melanoma, never give up hope and never accept being a statistic! People do survive! 

For you whose battle is not going well, I pray that God our Father gives you strength and courage. Please know that you're always in the prayers of others.

Today I ask your prayers for a fellow melanoma warrior, Danny age 60, who was just diagnosed last week stage IV with metastatic spread to his bones (more tests are forecoming). He is at The James in Columbus, Ohio. Please pray for Danny.

Many thanks,

Karen

"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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Anonymous's picture
Anonymous
Replies 4
Last reply 10/31/2014 - 8:19pm
Replies by: SStamps, kalisama, casagrayson, Anonymous

2 weeks ago we found out my mom's melanoma has returned to her spinal fluid and ventricle of her brain (diagnosed via two separate spinal taps and brain MRI). She has a history of one large brain met, but had that gamma knifed and then a subsequent brain surgery a little over a year ago. Her doctor said she now has leptomeningeal disease, and we're waiting on scans (Fri: PET; Mon: spine MRI, brain MRI) to see if it's elsewhere in her body. Does anybody have anyone I could reach out to for help?? I've been searching through posts and, per other posters, have seen that Dr. Papadopoulos at MD Anderson is someone we should try (since he does intrathecal IL-2 radiation to the spinal fluid). My mom is my everything, and I have never been so scared in my life. She's battled melanoma for the last 5 years and has done interferon, il-2, ipi, gamma knife...She's both Braf and CKit negative. She has completed one round of Temodar and is set to start the second round next week...WBR has also been discussed... I just don't know what to do and I feel like her oncologist has no idea what to do either! :( Any help, resources, uplifting stories, etc. would be greatly appreciated!!! 

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democat's picture
Replies 5
Last reply 10/31/2014 - 7:17pm

Does mitotic rate impact how fast melanoma will return? I was diagnosed as 3A in January 2013, but told that I was more like a 3B because of my very high rate of mitosis. Does that make it more likely that my melanoma will recur (if it does) sooner rather than later?

 

Roxanne

Stage IIIa/IIIb

since 1/2013

 

Roxanne

Stage IIIa/IIIb

since 1/2013

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So Helen has had latest scan and the melanoma is back. She was diagnosed 2. 5 years ago and was lucky enough to get on GSK MEK trial straight away.  Initially, the mel was in her ovary, her pelvis and her lungs. The trial drugs started work straight away and got rid of everything although her ovary was removed. The mel is back in her pelvis but her lungs and everywhere else are clear. Dr. says next step is Yervoy. Advice needed please. What are success rates with Ipi and where could we turn to after? We are in U.K so understand things will be different. She's my best friend and only 32. Ideas, advice and anything else.

Kind regards,

Vic.

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SMGY1978's picture
Replies 4
Last reply 10/31/2014 - 5:55pm
Replies by: Lil0909, Becky, Janner

To date, my 8yo son has only had the mole on his scalp removed by the dermatoloist.  (Initial pathology yielded "spitzoid melanoma" - Clark IV, Breslow 2.1 mm, 3/mm mitotic rate).

 

Next, we're discussing the plan of action with Oncology/Plastic Surgery/Pathology.   They're tentatively scheduling surgery for Nov 7th.  Today, the Oncologist said if the FISH (fluorescence in situ hybridization) test comes back negative, they'll only do a re-excision.  If it's positive, they'll do the wide excision AND SNB.  They have a concensus that the tissue is "borderline" melanoma.  

 

Thoughts?   Anyone have negative FISH results, but had problems down the road?

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Steve2142's picture
Replies 3
Last reply 10/31/2014 - 4:47pm

I am currently being BRAF-tested.  If the results are positive, my onologist will put me on taflinar + mekinist.  If I am negative, he mentioned an expanded access trial with yervoy + keytruda.  I have not been able to find out how anything on this trial or the combo of these drugs.  Any info would be very much appreciated.  Thank you!

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OpalSay's picture
Replies 4
Last reply 10/31/2014 - 4:29pm

I was just recently diagnosied with Desmoplastic Melanoma. Don't really know to much about it, or any specifics. All I know that its very rare and usually happens in elderly males. I am a 28 year old female. I am going in for surgery Sept. 13 2013 for removal and to biopsy my lymph nodes. Other than that, I really have no idea what is going on or what to expect from that. I found one other person who has been through this, but it wasn't as big or had to go through the lymph node biopsy. They told me the staging will come after the lymph node biopsy as well. 

 

If any of you have any more information on what to expect, I would greatly appreciate it. 

Also, they say melanoma isn't painful but mine hurts so bad, and makes my whole arm hurt. It also turns bright red and a large area around the lesion gets fire hot to the touch. It also feels like someone is burning my arm with a cigarette. I have been keeping track of the lesion for about two years now, but not sure how long it has actually been there. I started to keep track once I noticed it wasn't getting smaller, but was getting bigger and bigger. 

 

Thanks

Opal 

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SMGY1978's picture
Replies 1
Last reply 10/31/2014 - 2:24pm
Replies by: StephyD83

We're in Illinois (Chicagoland).   Our 8-yr-old had a mole on his scalp, diagnosed as Melanoma.  (Stats 2.1 Breslow, Clark IV, 3/mm mitotic index).   Normal bloodwork, so we're optimistic.  Tomorrow, they'll confirm his surgery date/details.  Tentatively, they're planning to do a wide excision & SNB on Nov 7th.   I'll keep you posted.

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BrianP's picture
Replies 7
Last reply 10/31/2014 - 4:47am

Pretty strong results.  Hopefully well be seeing phase III trials soon.  Little disappointed to see that many who had a complete response had a recurrence later on but still strong results nonetheless.  Definitely see this as a player in the future with combinations.

http://www.forbes.com/sites/jonfortenbury/2014/10/29/a-new-cancer-drug-worked-in-over-50-of-patients-in-a-phase-ii-trial/

 

 

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rick1981's picture
Replies 5
Last reply 10/31/2014 - 4:44am

Hi everyone,

It seems like progress on cancer/melanoma treatment is moving at an incredible pace - which is a good thing. When my wife was diagnosed with Stage IV in June, our oncologist referred to Nivolumab as that "wonder medicine" he'd which he'd have access to - and only a couple of months later Pembrolizumab has been approved in the US and Expanded Access has open in Europe and Nivolumab is not far behind.

It's great to have options after the BRAF/MEK inhibitors (or in the future maybe as first line), but it thought it would be good as well to think even further out and look at what medicines may be next up in the Big Pharma's pipeline - so we can discuss this & potential trials with our oncologists.

So therefore this topic :)

(If it already exists, please point me in the right direction and this one can be closed).

The two melanoma medicines that have come to my attention very recently are:

BAVITUXIMAB: http://money.cnn.com/news/newsfeeds/articles/marketwire/1149321.htm. "statistically significant tumor growth suppression compared to anti-PD-1 antibody treatment alone in an animal model of melanoma". Trial with Yervoy/Ipi being started.

LIRILUMAB: http://www.mskcc.org/cancer-care/trial/12-224 Trial with Nivo. Ashley here on MPIP has mentioned this trial.

Good to know who's on these trials, what other medicines are being tested - and in the future to keep each other posted on Trial outcomes.

Best regards, Rick

 

 

 

 

 

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KMick's picture
Replies 2
Last reply 10/31/2014 - 12:07am
Replies by: KMick, liberty04281

Does anyone remember "Lisa13" and/or know what happened to her?  I followed her posts when I was first diagnoses and then she disappeared.  Someone in the chat room thought that she may of passed but wasn't sure.  Just wondering.

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Steve2142's picture
Replies 8
Last reply 10/30/2014 - 11:19pm
Replies by: paul Lyons, kalisama, Anonymous, MattF, Mat, Bubbles, Steve2142

I met with my oncologist today after my pet scan and he advised me that my melanoma had "exploded" in a short time and has spread to my lungs, liver, and other cutaneous sites.  The number of nodules was innumberable.  I am being tested for the BRAF gene and if I have the mutation, he is suggesting a combination of Tafinlar and Mekinist.  It would be great to hear if anyone has undergone a similar treatment regiment and what their experiences have been and what side effects they experienced.  Thank you.

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