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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Resilient4Life's picture
Replies 5
Last reply 9/12/2014 - 2:53pm

 

Hello everyone,

This forum has been a sanity saver for me, and I thank you all for your input. My surgical consult is Friday and am illierate about the "justification" or rationale for sentinal node biopsies. I've looked at other sites and come away with an ambiguous result.

One 7mm area staged 1A by this forum, Clarks level II, shallow thickness 0.25mm. The location is near the shoulder area upper left arm, approximately 1-2 inches from a prior surgical scar (impingement) and 3-4 inches away from the apparent location of lymph node(s) in the underarm area.

Questions: what are the top determing factors for a SNL? Location and depth or something else? Would it be unrealistic or unwise to push for a needle biopsy? Should I be concerned at all? Thanks again.

 

 

 

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Kenny's picture
Replies 5
Last reply 9/12/2014 - 12:48pm

We lost a great man to a yearlong battle with Melanoma on 9/2/14.  He was my father in-law.  I have loved and respected him for 38 years.  His Melanoma was found too late and was very aggressive, he fought the battle hard but it took him without notice.  He had brain tumors that were not yet detected; he was scheduled for a MRI on 8/29/14.  A blood vessel that was feeding one of the 2 tumors in his brain burst on 8/25/14 and he had a severe stroke.

I am so thankful for the time spent with him over the years and especially the past year walking through this terrible disease with him.  I found out on 3/25/14 that I have Stage 3a Melanoma, this drew us even closer as I could now personally relate to his fears and concerns.  

On 8/23/14 my mother in-law, father in-law, wife and I went out to dinner to celebrate our wedding anniversaries together; theirs was 57 years on 8/12/14 and ours was 35 years on 8/26/14.  I am so glad for the memories. 

Please pray for our family and for my wife, as she not only grieves for her daddy but also fears for me.

Thank you,

Ken     

Ken Sears

Stage 3a 

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Replies by: arthurjedi007, kylez, RJoeyB

I was wondering if 2 days after my last radiation treatment is too soon for an MRI and PET/CT scans?

Basically my long distance doc on 8/13 did a PET/CT and wanted radiation done by 9/3 and wanted to do a brain MRI and another PET/CT on 9/24. But he wanted me to do radiation locally since I've had radiation there before. If the scans are ok then I can continue with the PD1. If the scan shows anything in the brain then I'm off the PD1.

So in reality locally they did a brain MRI on 8/21 in preperation for the radiation. They also did a lower spine MRI on 8/21 and I got confirmation from my long distance doc we needed to radiate 2 spots in my spine. Basically there is 1 tumor in my skull that has grown out to my scalp and inward towards my brain pressing on the dura. Nothing is in my brain at that scan though. The 2 in my spine I'm not sure how much soft tissue involvement there is but they want to prevent the occurance last winter where another spot in the spine almost paralyzed me so hit them now instead of later.

So finally I got my first zap to the spine today 9/9. Insurance was complaining because like the nurse said my local radiation doc wants to do it the more precise right way. They still haven't approved the head yet but they think they should be able to start it on 9/12. Basically I get 30 gray in 5 fractions to each spot of the spine and head. So basically each spot gets 6 gray per zap every other day. I say per zap but really it's several different zaps from various angles. I think I counted at least 6 zaps to the one spine spot today. So probably enough to get them to shrink I hope and hopefully the PD1 will then take care of them like it's shrinking over a dozen other tumors. They alternate which spot in the spine every other day. The head they will also do every other day but in combination with (or actually after) whatever spine spot for that day.

So I'm wondering whether I should just stay home and recover from the radiation and get the newly FDA approved PD1 from my local onc doc on 9/24 who I still see for my xgeva shot. Last time I saw him he said I needed to stay on the PD1 so it should be no problem as long as I give them enough of a heads up so they can take care of the insurance. Then after the radiation and some rest and recovery I can go to my long distance doc for these re-scans.

So not only am I concerned about not really being strong enough to travel the 500 miles to the long distance onc doc although I feel pretty good now. I'm wondering if scanning so soon after radiation should even be done. I remember reading one person's story who was on immunotherapy, did radiation and the doctor visibly saw the tumors shrank. So that person's doc did not want to scan yet because he saw an immune response and did not want to mess up that delicate little understood balance of the immune system if I remember that person's story right.

I'm very thankful to Joe so I was able to question my radiation doc so he changed his initial idea and is doing my head the better way. You folks are the best.

Any thoughts or suggestions are appreciated. I'm just not sure what to do.

Artie

 

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Exhausted's picture
Replies 1
Last reply 9/11/2014 - 2:43pm
Replies by: CHD

Sorry this is alot less severe than the norm around here, but I had a mole that my dermatologist wasn't worried about but had him remove it anyway and it came back moderately atypical.

Of course this isn't the worst thing in the world, but I am looking for information on how much this increases my risk for melanoma and how worried I should be about some of my other moles that seem slightly off.  I don't want to be so aggressive that I look like swiss cheese, but I do want to make the best choices and nip any potential major problems in the bud.

Thanks!

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Tim--MRF's picture
Replies 18
Last reply 9/11/2014 - 2:23pm

The FDA has approved Merck's PD1 drug, pembrolizumab, for use in patients with metastatic or unresectable melanoma.

The drug, which will be sold under the name Keytruda, was approved based on a trail of 173 patients. 24% had tumor shrinkage and most of those patients continued to respond after 8.5 months. This is by far the best response rate of any melanoma drug currently approved.

The drug is approved for patients who have already been treated with ipi and, for those whose tumor has the BRAF mutation, with a BRAF inhibitor.

Tim--MRF

 

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dirks7171's picture
Replies 7
Last reply 9/11/2014 - 5:40am

I recently underwent WLE surgery for malignant mucosal melanoma of the anal canal.  I had a large tumor (3.8 cm) that had grown into the submucosal tissue by the time it was surgerically removed in the beginning of August.  I live in Maryland where my surgery was performed and am in the process of considering adjuvant therapy now -- and am at a crossroads.  My last PET scan in July showed no metastisas but I know this is an aggressive type of melanoma cancer that can spread quickly.  My biopsy surgery pathology clearly identified the cancer as malignant melanoma.

My surgery pathology slides are being examined at Memorial Sloan Kettering.  My  doctor there is Richard Carvajal - Director of Developmental Therapeutics.  When I met with he and his team in July before my surgery (after receiving a diagnosis of malignant melanoma of the anus) and prior to examination of the slides (now underway) he suggested I might be a candidate for a chemotherapy combination therapy consisting of two drugs that have been around for a while - cisplatin (given interveniously) and temador (temazolomide) - given in pill form.  The IV and pills are given for a week - followed by a three week lapse.  This process is repeated six times.  The therapy is based on a clinical study done in China of individuals diagnosed with muscosal melanoma.  The outcome of the study suggested that the therapy prolonged the lives, on average, of the individuals who were given the chemo combo. 

Just wondering if anyone in the network has undergone the chemo combo at Sloan or any other medical facility -- or has any insights into how effective it might be?  Also wondering about experiences working with the mucosal melanoma team at Sloan.  Any suggestions on how to maximize patient-doctor communications and treatment outcomes. 

Finally, I don't know if I am C-Kit or BRAF mutation positive yet -- or much about the overall pathology biology.  Does anyone have suggestions on what type of immunotherapy might be available to me given specific mutations or other aspects of the malignant mucosal melanoma (anal) that I was diagnosed with (e.g. Gleevec)?

As you can tell I'm a newbie at this and will try and give as good as I get from anyone who can shed any light on my questions.  Thanks in advance for any information and interest.  I am frightened but hopeful.

Chesapeake Guy!

 

 

 

 

 

 

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/11/2014 - 12:39am
Replies by: kylez, Anonymous

Hi can anyone tell me what treatment they Are on for their brain mets? Already been told that vem and wbr have failed. Also srs wont work cos location of mets. Therefore do I have any other options to use? Heard it will take to Long for ipi to work

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Bubbles's picture
Replies 23
Last reply 9/11/2014 - 12:26am

To all of you:

CT's of chest, neck, abdomen and pelvis along with an MRI of the brain were all negative today.

133 months post original melanoma diagnosis in 2003.  53 months Stage IV.  47 months NED.  45 months since start of my Nivolumab (BMS' anti-PD1)  trial in Tampa.  15 months since my last infusion.

I feel incredibly lucky and amazed  and grateful and strange and undeserving...to be here...and to be able to share this news with all of you.  I do so to wish you hope and strength in all your journeys and struggles.

Yours, Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Debra Cannon's picture
Replies 2
Last reply 9/10/2014 - 10:09pm
Replies by: BrianP, Bubbles

Anyone with Stage II b getting immunotherapies or other types of adjuvant therapeis after tumor removal and sentinel lymph node biopsy?

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grandtulba's picture
Replies 4
Last reply 9/10/2014 - 5:29pm

Hi Everybody, 

Im ahmed from Cairo - Egypt, Two weeks ago we discovered that my father is suffering from metastatic melanoma.  he is 67 Years old 

What i read on the interenet is not helpfull and it's very disapointing My father didnt start the treatment yet. 
still  waiting for Bt scan. But the doctors here told him that they will give him pills for 6 months and if the  disease didnt respond to the treatming they will stop it. 

Please advice me what to do ? and where can i find melanoma specialist to bring my father to him. 

 

I highly appreciate your support 

Thanks

Ahmed

 

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Bristol-Myers Sues Merck of Patent Infringement on Keytruda
Zacks.com - 1 day ago Merck said the lawsuit was without merit and that the company was confident it wouldn't be prevented from marketing pembrolizumab. Similar patent litigation among the companies is under way in Europe.

Merck said in an August filing to the U.S. Securities and Exchange Commission that the Ono patent was invalid.

http://online.wsj.com/articles/bristol-myers-ono-suing-merck-over-cancer-drug-patent-1410101449

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

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liam1209's picture
Replies 5
Last reply 9/10/2014 - 1:58am

Please let me know emails to the following doctors.  Also, If I only list the Hospital please suggest top doctor and his email if you have.  I am trying to figure out what the 1st treatment for my father will be.  Deciding whether to go ipi then anti PD-1 or if clinical trial.  

Dr. Rosenberg at NIH

Rr. Lynn schuchter at penn

Dr. weber at moffit. 

Univ of Pennsylvania

fred hutchinson 

md anderson

dukes morris

danna farber 

sloan kettering/ Dr. Wolchok

johns hopkins

mass general 

Stanford: Kim Margolin

Boston: Mike Atkins

Tampa: Jeff Webber

Nashville: Jeff Sosman

 

Thank you so much for your help!!! 

 

Liam 

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fucancer44's picture
Replies 7
Last reply 9/9/2014 - 11:17pm

My name is Emily and I am asking for help regarding my beloved brother in law, Justin. He was diagnosed in January with Acral Lentiginous Melanoma which began on his pinky toe, but had progressed to his groin lymph nodes. He had his toe amputated & the lymph nodes removed and then began Interferon infusions (5 times a week for a month) in May and then subsequently underwent subcutanous interferon injections 3 times weekly. PET scans, MRI, etc... were all clear of any current disease process as of May and everything was going as well as it could when he had another PET scan in August that revealed "2 suspicious spots" on his femur and lower vertebrae. MRI and radiographs confirmed our worst fear and he indeed has 3/4 of an inch lesions on his femur and L2 vertebrae. The oncologist then stopped the interferon injections and we are now 3 weeks out from having nothing done to him. We have been met with a HUGE roadbock because everyone says there are no clinical trials we can get him into because his melanoma is "just in the bone" as if that isn't bad or something. The oncologist wants to put him on Yervoy, but has said that overall when used alone it doesn't always have the best results. I've done tons of research and I know that there are many drugs in clinical trials that are used in CONJUNCTION with Yervoy and have had great results. And just yesterday they FDA approved a new drug, "Keytruda" that typically follows Yervoy treatment and has had great results. Basically we need help. We need a melanoma specialist. Someone who will take this rare type of melanoma seriously and get him the help he so desperately deserves. He is 39 years old and has 4 children (ages 10, 7, 20 months, and 8 months) that he needs to see grow up.  We live in Oklahoma but we will travel ANYWHERE. When he was initially diagnosed we got a second opinion at MD Anderson, but so far we haven't been able to see if going back there a second time would be worth it as they are not saying they can do much at this point. PLEASE help. Any referrals or recommendations would be greatly appreciated. 

Thank you in advance. 

God bless every single one of you who rally in this fight against this horrific disease.

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