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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mikechel's picture
Replies 6
Last reply 3/4/2019 - 11:36pm

It appears that I am not alone with this diagnosis. I have had a biopsi with resuts of T1A with no ulceration. I have surgery for removal on March 8, 2019. It is incredible how a person that is usually positive can turn into an emotional wreck. It is good to have a bulletin board to share experiences and to share treatments. I pray for everyone to heal. Thank you for any support.

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Bubbles's picture
Replies 4
Last reply 3/4/2019 - 9:22pm

Thanks to the amazing peeps on this forum, along with our dear ones at home - we can - MARCH FORTH!!!  On this most hopeful of days, know that you will never March Forth alone!

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/03/march-forth-no-matter-tempest-that.html

Wishing each of you the best possible day, with a promise of spring.  les

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MLD1973's picture
Replies 10
Last reply 3/8/2019 - 7:22am
Replies by: MLD1973, stars, Linny, MarkR

Hello everyone,

I hope you dont mind asking this question, it has been playing on my mind.

I received a copy of my path report and I have been analysising it... maybe a little too much.

The histology laboratory description, I have been trying to break down and understand and I was wondering if they have maybe over diagnosed my biopsy (clutching at straws)

I understand that a large number of atypical melanocytic lesions fall into a boarderline area, does my biopsy description sound like this?  Should I get a second opinion?

Here is some of my pathlogy report, I am based in the UK:-

The excision biopsy of skin contains atypical predominantly junctional but focally compound melanocytic lesion.

It is non-uncerated although there is some thinning/consumption of the epidermis.

The juncation component shows features of an in-situ melanoma of superficial spreading subtype with large atypical melanocytes showing some suprabasal spread singly and in nest.

Beneath this there is much chronic inflammation and pigment incontinence with regression with a thickness of 0.6mm

In addition, within this inflammed area, there is a focal invasive melanoma component

Breslow 0.57mm

Invasion present - invasive melanoma

mitotic index - 1

Growth - Vertical

TIL - Brisk

Ulceration - not identified

Microsatellite/in-transit metastasis - not identified

in-situ component - clear 2.3mm

invasive component peripheral - clear 4.4mm

invasive compnent deep - clear 6.8mm

 

 

 

 

MLD

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PhoenixJ's picture
Replies 4
Last reply 3/14/2019 - 10:29am

Hi folks, I am looking for some support. I haven't been on this forum for several years because I was doing really well on a BRAF/MEK combo (braftovi/mektovi) 4 years and no evidence of disease progression. In May I had a previously treated brain met bleed and needed craniotomy number 4 path confirmed melanoma and not radiation necrosis. Now I have 5+ new brain mets the 2 largest have been treated with SRS. I have completed 2 infusions of ipi/nivo and I feel wiped out with no appetite and nausea. I also have a weird spacey head feeling. All my labs have looked good and I am planning on round 3 of the ipi/nivo combo. I am feeling nervous because I don't know if or how quickly this combo will work. Anyone out there with brain mets have success with ipi/nivo? I think i am more scared now than when I was diagnosed.

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Rebeccap82's picture
Replies 7
Last reply 3/6/2019 - 3:18pm

36yo female otherwise healthy and active.  I am a Healthcare Provider with Primary Care.  Have one Daughter of a beautiful bright 4yo.  Was dx with Superficial Spreading Melanoma Jan 2019 at .85 Breslow depth and mitotic rate of 3.  They did a sentinel lymph node biopsy due to my mitotic rate of 3.   Lymphscintagraphy demostrated three sentinel lymph nodes to remove; one in my right inguinal and two from my left axilla.   I just found out my right inguinal node came back positive and am supposed to meet with oncologist next week.    Im wanted to see if there some people out there that 1. Have gone the route of Complete lymphnode dissection of the inguinal region or 2.  Have decided to go with observation with routine ultrasound and observation;  because I am looking at the literature and it seems a bit controversial in regards to decide to do lymph node disection on thin melanomas versus to observe?  There is a lot of morbitity with lymph node disection especially with the lower extremities;   I am extremley active with running/working out and snowboard every weekend (this is my therapy).    Or if there is anyone who has tried the anastomoses with the dissection?  Or someone my age who had a succesful outcome after inguinal lymph node dissection?  This is so stressful and the waiting game to decide what the treatment plan will be is torture.  Was just hoping to connect with some people with a similar story.  Thank you!

Rebecca heart

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AMcReader's picture
Replies 15
Last reply 3/4/2019 - 8:10pm

I needed a place to commemorate this moment among people who truly understand so I hope you don’t mind me taking up space here with my own, personal story.

One year ago today, I woke up from a long, 8-hour procedure to remove a fist-sized brain tumor from the left frontal lobe of my brain. I had been diagnosed Stage 4 just 36 hours earlier, my daughter was just 15 days old but I was lucky the tumor was gone.

At that point though, and probably more so in the weeks that followed, I was beyond distraught. What was I going to do? What would my life look like? How long was I going to be here for my sweet girl and my family? 

As you all know, it takes time to even start to process all the emotions you have but, all that aside, I don’t even think my wildest dreams could have predicted that I’d still be feeling so good and normal-ish and able to pursue life! Sure, things have not been perfect — there was surgery, radiation, Opdivo and, most recently, 3 rounds of the combo which landed me in the hospital for more time than brain surgery! But, I’ve still been able to be a mom, plan parties, go on vacation, work full-time and keep enjoying as much as I can out of every day.

Mayve this hasn’t been a perfect year, but it’s been a good year and I’m thankful to have come this far, feel this good and have the opportunity to learn from all of you!

Take care!

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/3/2019 - 7:53pm
Replies by: Toby0987, Bubbles

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Gkheadhunter's picture
Replies 13
Last reply 3/4/2019 - 2:43pm

Hi all. My name is Karen. I am 49 years old and was diagnosed with stage 4 metastatic melanoma in April 2018. It started with a lump on my side which was removed. I had radiation and thought all was well until June when a PET scan showed it had spread throughout my body. I began taking Tafinlar at that time and started immunotherapy. First with the drug Opdivo and then switched to Keytruda. In December I had to have a grapefruit sized tumor removed from my ovary. It was determined that the braf mutation is the driver behind my cancer. Unfortunately my levels are so low that now my oncologist has taken me off of immunotherapy because he says it will not help. My prognosis is now 1 year. Is there anyone else out there with the braf?

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Lucygoose's picture
Replies 10
Last reply 3/6/2019 - 2:39pm

Hi

can anyone recommend nutritional support information? I’m just starting my battle for Stage 3B and am committed to giving my body it’s best chance. 

thank you!

lucy

Lucy

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Summer S.'s picture
Replies 2
Last reply 3/5/2019 - 5:19am
Replies by: Summer S., Bubbles

Hey everybody, 

I know this one is a minor concern, especially we are very blessed that all the other nasty side effects have calmed down for a while. 

My mom’s hair started to gradually fall, she still did not notice it or associate it with medicine yet. 

I donot know what should I do? I donot want her to freak out when when/if she finds out about it (in case it continues to fall) 

Also, do you guys have any tips or tricks to slow it down or to manage this? 

Thanks :) 

 

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Jell's picture
Replies 3
Last reply 3/2/2019 - 10:55pm
Replies by: Kjos, Jell

Hi, I have a newly diagnosed Superficial Spreading Melanoma.

Punch biopsy done 3 weeks ago - it measured at 1.75cm then. 

Now it has grown to being 2.5cm long and wide.

I am seeing a surgeon on Wed this week. However can anyone tell me if this normal and being this size how big will the WLE be on my thigh?

 

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Replies by: mrsaxde, ed williams, desmelwife, Anonymous

Just read this.....

 

TUESDAY, Feb. 26, 2019 (HealthDay News) -- For people with the deadly skin cancer melanoma, one dose of the drug Keytruda before surgery might stop the cancer in its tracks, according to a groundbreaking new study.

Keytruda (pembrolizumab) is a PD-1 inhibitor, an immunotherapy drug that triggers the body's immune response to attack cancer cells. According to results of this study, the drug's effects peak as early as seven days after treatment -- much earlier than previously seen in other studies.

Moreover, patients who had a year of this immunotherapy treatment after surgery were free of their cancer for more than two years, the longest follow-up so far on patients with melanoma.

"Anti-PD-1 works extremely rapidly, achieving immunological responses peaking in most patients within one to three weeks," said study co-author John Wherry. He's director of the Penn Institute for Immunology at the University of Pennsylvania.

About a third of the patients were "essentially cured within three weeks, highlighting the rapidity of immunotherapy for cancer," Wherry said.

And in those patients whose cancer returned, researchers found revealing patterns in the way cancer adapts to the drug -- discoveries that could lead to better ways to treat such patients.

Keytruda is the drug responsible for the remission of former President Jimmy Carter's cancer in 2015. Carter, then 90, had melanoma that spread to his brain and liver. Treatment with Keytruda appears to have cured him.

The drug isn't cheap, costing about $150,000 a year. Keytruda is covered by most insurance, including Medicare, but copays can be high, according to the Kaiser Family Foundation.

For the study, researchers gave 27 patients with advanced melanoma a single dose of Keytruda three weeks before surgery.

Eight patients had what researchers described as a complete response, meaning less than 10 percent of the cancer cells remained at the time of surgery. All eight remained cancer-free for up to 25 months of follow-up.

Researchers also investigated how tumor cells in patients whose cancer returned were able to develop a resistance to Keytruda. The investigators found two causes -- tumor mutations and increased activity of cells that naturally suppress the immune system.

Knowing the factors that cause a lack of response to the drug may help to identify patients who might benefit from other therapies in combination with PD-1, Wherry said.

Dr. Steven Savona, a physician at Northwell Health's Monter Cancer Center in Lake Success, N.Y., was not involved with the study, but reviewed the findings. He said the fast-acting immune response offers a new approach to a disease that used to be approachable only with surgery.

Savona said it could make the surgery simpler, and if used in combination with other treatments, surgery might not even be necessary for some patients.

"This might be a new approach for patients with limited but advanced melanoma, but we do need additional testing to prove that," said Savona.

Merck, Inc., maker of Keytruda, supplied the drug for the study but did not fund the trial.

Melanoma is the deadliest form of skin cancer. The American Cancer Society estimates that more than 96,000 new melanomas will be diagnosed in the United States this year, and 7,200 people will die from the disease.

Standard treatment includes surgery followed by a year of drug treatment in high-risk patients.

The report was published Feb. 25 in the journal Nature Medicine.

Husband diagnosed with Desmoplastic Melanoma 10/18. Started Opdivo at Moffitt clinic 1/19.

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bandj5's picture
Replies 6
Last reply 3/7/2019 - 8:41pm
Replies by: bandj5, MikeInAK

Good Morning! Recently diagnosed and not sure what to think. Hoping someone can give me some insight and what to possibly expect going forward. Pathology report says, superficial spreading transcending to deep and lateral margins, 1.2 mm, mitotic rate 7, at least a Clark’s Level IV, and no ulceration. Just completed PET scan and found to be clear. Scheduled for lymph node mapping and SLNB with wide local excision to follow on Monday. How serious is this? Thank you!

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Seqwool's picture
Replies 2
Last reply 3/2/2019 - 8:48am
Replies by: Seqwool, SOLE

Hey, I'm a 20 years old, male, about 2 weeks ago I found suspicious moles around the 5mm that have appeared on the bottom of my foot.

At first couldn't tell it was a mole - assumed my hygiene was rather poor and whatever it is will come off in the shower - it didn't.
noticed they were moles and proceeded to visit my Dermatologist.

She said they are infact moles - but as of now nothing to be too worried about. Keep track.

(mind you, the ABCD of Melanoma , all applied to the moles.)

Which, I definitely have - They started to shrink, rapidly. every night, they got smaller and smaller - I started marking the area at which they used to be at just so I'll be able to keep proper track.

One is almost gone, the other is still sizeable tho definitely following its partner.

as they started shrinking - dots appeared underneath one of mmy Toenails, great.

I am an extremely paranoid being, ever since I found out these were moles i've been all over the place. and now with the very limited resourced I do have and the fact they are 'regressing' so rapidly and new spots appear underneath my toe - and the fact as I write this there's no available professional for me to visit - what should I think of this?
How serious could this be?

The last thing I want is this to be cancer , and if it is cancer, The last thing I want is for it to travel around and spread.

 

Processing this is a handful and I really do want to understand whats going on and over my body.

I do have pictures that keep track of the regression.

 

Any opinions? :( 
 

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mrsaxde's picture
Replies 6
Last reply 3/2/2019 - 3:42pm

I just heard from Dr. Sharfman. He spoke to the radiologist, who pulled up my MRIs and said yes, there is definitely a new brain met. Very small, but it's there. So I start on Temodar, and he wants me to have my radiation oncologist zap the new spot. Temodar crosses the blood/brain barrier, so I assume that will help matters too. Then, after a couple of months of Temodar, we'll check things again and maybe at that point I can get into a trial.

Not the best news, but I'm relieved I'm going to be getting treatment. The TIL trial results had been so-so for me, and I've been out of that trial since the end of November. Over the past 5-6 weeks I've had several new skin spots pop up, and I've been quietly losing my mind over not getting any treatment other than radiation on my brain. Even though this is not what I had hoped to hear, in the 30 minutes or so since I talked to him I've felt a lot better about things.

I hope everyone has a great weekend!

-Bill

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