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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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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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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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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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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purley123's picture
Replies 10
Last reply 6/28/2015 - 11:56am
Replies by: Rcmcd09, purley123, Janner, Anonymous, casagrayson

Hey guys.

About three weeks ago i had two suspicious moles removed from my back and front. Carrying on to this present day, I felt a tingling sensation on the side of my foot. At first i thought it was nothing as this was a common occurace for the past 1-2 months, but when i closely investigated it, I was surprised to see a dark mole there (the tingling sensation was at the exact same place as the mole).

So i ended up researching on the internet (worst thing you can do) and found out that a tingling/burning sensation is an early symptom of Melanoma. As you can guess, I'm terrified. I don't know if the Melanoma has spread if it's changed or anything.

I have a dermatologist appointment booked previously for the 27th of september.. But i don't know how I'm going to cope till then.

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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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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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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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buffcody's picture
Replies 5
Last reply 6/27/2015 - 1:00pm

I just got a detailed endoscopic procedure yesterday to answer the mystery of a growth/lesion that has been getting bigger over the last few months in the area of the pancreas and duodenum. The experienced doctor who did the scope reported after the procedure that it was located in the duodenum and was metastatic melanoma.  My first metastatic diagnois was in early 2012.  Since then, I have had brain radiation and a lung lobectomy as well as two craniotomies.  The new metastasis is the only sign of cancer in my body now.  I will be meeting with my oncologist about this soon, but I am interested in hearing from anyone who has had metastasis to the duodenum and what the treatment has been.  I have not yet had anti-PD 1.  Based on the pre-scope conversation with my oncologist, I presume he will be recommending a course of Keytruda.  He also wanted to explore surgery, but the gastroenterologist wsa pessimistic about that course for a variety of reasons foremost probably my age, though I do have excellent performance status.  Thank you.

 

Frank

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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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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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Becky's picture
Replies 3
Last reply 6/25/2015 - 8:19pm
Replies by: jenny22, Becky, SABKLYN

Hi

My son 26 year old son Ben was diagnosed 3A in 2009 (oral melanoma). Surgery and treatment (interferon) was done here in California with Kaiser. Last July his oncologist said that since he was 5 years NED, he could have annual checkups ( possible scans) instead of every 6 months.

In the meantime, he has moved to New York City and has his own insurance. It would be a year since he last saw a doctor. I told him to call Sloan Kettering since they have such a great reputation. They told him they only take new patients with active disease.

So does anyone have any recommendations for a doctor ( would he find a general oncologist?) in NYC?

Thanks!

Becky

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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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