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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Hi this is my first time posting.  I'm especially interested in Janners response:). I've read a lot of your replies.  I had a .3 mm depth stage 1A in November.  In June of this year I was told I had an in situ on my back but I go to U Of M for surgeries and my derm sends the oaths to them....they changed that ex to moderately atypical hyperplasia.  We still did the surgery as if it were in situ.  I know I shouldn't worry about recurrence?  But what are my chances of a second primary with dysplastic nevus syndrome?  I've had so many answers from we don't put a number on it to 20% from a good derm who said whether a person has one dysplastic mole or 50 their chances are 20% for a second primary.  I have two boys so young and this consumes me where I'm going to counseling.  I know someone who sees an oncologist and a derm for a stage 1 and yhe oncologist just does a second body scan and checks nodes and blood.... Thoughts?  This is so new to me that I need info!  I sure am afraid of this:(. 

 

Sher

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Hi! I've had melanoma in-situ and my sibling has. We have tons of moles and I've probably had 50+ removed. I'm pretty knowledgeable on all things melanoma. My 8 year old son has a a new small, red/flesh colored bump on his forehead. It's very harmless looking (doesn't itch or hurt) but it isn't going away. It has only been maybe 12-14 days. I know melanoma in kids can present this way. I WILL get it biopsied if it doesn't go away of course, but what timeframe do you think is reasonable to wait? I was thinking 2 more weeks and then get it cut out, but is that crazy? I don't want to let my anxiety take over and cut into his face too soon! Don'T care about scars, but realize there are a million benign things that are more likely. Saw a derm today-- she wasn't sure. Said looks harmless- - maybe cyst or insect bite. There is no head to it. She said to come back in 4-6 weeks if still there.. but I don't even want to wait that long!!   He also has a very dark brand new dark spot on sole of foot that two derms say looks fine, but I don't like it (it's 1mm) It's almost black and on the sole of foot.. considering biopsy as well.. Would love to know if I'm being reasonable or overboard. thanks!

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BrianP's picture
Replies 6
Last reply 7/29/2014 - 11:15pm

Your comments on the NED thread really hit a chord with me.  I've been thinking of that very topic quite a bit lately.  G-Samsa, like you I am in a Ipi-Nivo trial and like you I've had a about a 50 to 60% percent reduction in tumors initially and now seem to have reached a stable status.  I did not realize what a common response this was with the anti-pd1 drugs until watching the immunotherapy presentation I posted several days ago on OMedlive.com.  G-Samsa, I think it may have been the study you are participating in which they posted the graph of responses.  If I remember correctly the graph I saw only showed one complete responder and the rest of the responders acheived a stable result at around 30 weeks that seemed to be pretty durable.  Joe you summed it up much better than I can about all the implications surrounding living with this disease.  G-Samsa, I read your comments from your doctor with great interest concerning his/her belief that our immune system should now be able to do the job on it's own.  My doctor and I have just briefly talked about the subject.  He made an interesting comment about options down the road so "I don't have to be on nivo the rest of my life."  I believe he's thinking about options like SBRT for two small tumors I have remaining.  It will be real interesting to see where the medical community falls out on this subject. 

I really don't like the idea of living with stable disease but I know there are many on here that would do anything to be in my situation right now so I know it's a true blessing.  Many of you probably read T.J. Sharpe's blog.  He made a great comment the other day on his blog: "stable is a tie, a tie is a win, even if it's not the result we desire." 

Brian

 

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Tracy Chicago's picture
Replies 2
Last reply 7/29/2014 - 5:32pm
Replies by: CHD, 5dives

Has anyone sucessfully insisted on lymphatic mapping for a Level 1 melanoma? I ask because my first primary was level 1 and then three years it spread to my lymph nodes, making me stage 3.  I now have a second level 1 melanoma in a different place. I'd like to request lymphatic mapping considering my history.

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Replies by: maryb-z, Gene_S

Dear MPIP Community,

If you haven't already heard, the Surgeon General has issued a Call to Action to Prevent Skin Cancer. Please take a look at the MRF's press release to learn more about the Call to Action and what it means. The MRF commends the Surgeon General for issuing this statement and taking a great step toward identifiying important steps that will help reduce the rates of melanoma diagnoses. 

Sincerely,

Shelby - MRF

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dodgedh2's picture
Replies 19
Last reply 7/29/2014 - 9:03pm

I was originally diagnosed at Stage 4 (met to bone) w/unknown primary. Following resection and gamma radiation treatment at surgery, I have been NED for just over 6 years now. My Onc released me from oncology and turned me over to PC for monitoring. No scans (unless I have symptoms or some other reason to suspect return). I'd like to hear from other long-term, late stage NED survivors. Has anyone experienced long-term NED then had recurrence? How long were you NED? Just going through one of those periodic anxiety moments about having survived Stage 4 and looking over my shoulder again.

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gaby's picture
Replies 14
Last reply 7/29/2014 - 8:22am

HI

My husband is stage 3A since July 2012. He is with interferon pegylado treatment since October 2012. Since his diagnosis that we have no holiday. My husband is terrified of being under the sun, so is very difficult to go out somewhere. I do not know how to solve this issue. My husband used sunscreen but the sunscreen does not give the peace. He is now 40 years old.

Appreciate any advice

Regards

Gaby

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jualonso's picture
Replies 2
Last reply 7/29/2014 - 9:18am
Replies by: Ginger8888, jack6020

Hi folks,

No one of us would like to be part of a big trial like this, but unfortunately we are.

Im thinking to collect some datas of each of us (just stage iv) that i think, crossing them we will be able to get some answers about why some treatments work o not. May nothing can be gotten but who knows, we are a lot of people and perhaps with a lot of data is possible to realize of something. This is just and idea. what to do you think about it?

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ymellin's picture
Replies 2
Last reply 7/26/2014 - 6:10pm
Replies by: ymellin, Janner

Hi, I just had surgery this past week for melanoma in situ. The area was the front of my right shoulder and I have a 3 inch incision. Am waiting for biospy reports to return to make sure that all is clear. Can anyone tell me what happens after this? 

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tcell's picture
Replies 5
Last reply 7/27/2014 - 4:43am

Hi all,

- diagnosed with stage IV in Februrary with lots of tumors in lungs, chest, abdomen, liver, bones

- good initial response to Taf / Mek, last scans in May showed considerable shrinkage everywhere

- bloodwork in June already not 100% ok so put staging one month earlier to July 21

- results show considerable growth in chest, lunhs, one liver met shrinking, one growing....bones stable. I got chest pain and cough and I am scared to death which I guess is kind of normal.

Guess that's it for the combo. Discussed with my specialist. Next step will be Ipi and continuation of Taf with just short breaks before and after the infusions. He said that there are good results from an Australian Phase 1 trial with that Combo. He hopes that Taf will put kind of a brake on tumor growth as my burden is rather high until Ipi kicks in  He says it is important to discontinue Mek as this caused severe troubles in combination with Ipi.

next option if something goes wrong will be Anti-Pd1 EAP. I hope, however, not to fail Ipi.

any comments, suggestions and uplifting words are welcome!

Thanks to all of you who are of such great help in dealing with this illness.

Chris

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Replies by: tcell, jualonso, Anonymous

Hi folks,

Finally i have decided to stop with combo, i was talking with my doc about to start

Mek anti pd1, but the condition is to progress on ipi or braf inhibitors, then the only option i have is to stop taking pills before the next PetScan and show progression in it (now in NED)

Is a very tought decision but i dont have any other option if i want to avoid resistance and still keep these drugs with pottencial for the future.

I would be very gratefull any help from someone who has follow the same path

 

Juan

.

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angtom's picture
Replies 6
Last reply 7/29/2014 - 5:45am

My husband has stage 4 melanoma and has been accepted to the TIL trial at Moffitt he is BRAF negative, my question is what is our back up if this does not work? I am just trying to get all of my options as a precaution. He will be doing the IPI - IL-2 Immunotherapy first IPI is on August 1st. I would appreciate any advice or anyones experience with this trial as I want to try to make him as comfortable as possible during these procedures. He is a healthy 51 year old and still working 6 days a week 10 to 14 hours a day, against my advice but it keeps him sane. I welcome any and all feed back, thank you so much.

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Beth_A's picture
Replies 10
Last reply 7/28/2014 - 9:29am
Replies by: mary1233, Beth_A, Anonymous, Kim K, RJoeyB, hbecker

I just received a phone call this past Tuesday letting me know I had melanoma. I got a copy of the pathology report that was obtained from Mayo Clinic - apparently my local lab sent it to them due to coming back "atypical."  The patho report is pretty frightening, especially when paired with excessive web searching. I was going to wait for my family practice NP to refer me to a dermatologist, but instead I called the Melvin & Bren Simon Cancer Center in Indianapolis, IN  to try and get an appointment. They were super nice and helpful, after getting a copy of my patho report they set up an appointment for next Tuesday with a Dr. Swartzentruber. I looked him up and he has a great reputation, so I feel good about that. I'm really anxious though and hope my appointment will help resolve some of the incredible anxiety. Nice to land somewhere that has people familiar with this problem :)

Beth A.

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arthurjedi007's picture
Replies 7
Last reply 7/27/2014 - 4:51am

Just thought I would share some good news for those who have struggled through failed medicines and have landed in Merck's EAP PD1.

I confirmed with my Mayo doc the visible lump on my head that was bigger than my thumb is almost all gone with only 3 doses of this stuff. He was suprised to see a response so soon. He doesn't expect to see responses until after the 6th dose but everyone is different. The other 2 visible tumors are staying the same size according to his tape measure. Of course we have no idea about the internal ones but I am feeling better. My back spasm twinges are far less frequent. Blood work is ok with the ldh finally starting to go down a little from 423 to 399.

Someone said on here that no matter how many medicines fail you only have to stay strong and find that one that works for you. That has kept me going so much and I finally believe this is the one for me.

Unfortunately Mayo has an institutional policy that I have to have a scan before my 5th dose which is august 13th. My doc does not agree but his hands are tied. I really hope they keep me on this stuff because it works for me. He did say they evaluate immunotherapy results different than other results.

Good luck to everyone. Keep the faith no matter how dark things seem. There is hope.

 

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Dear MPIP Community,

We are looking for volunteers in the Chicago and Dallas areas. Our partners at the American Academy of Dermatology (AAD) need volunteers to help with skin screenings at a few NFL games in those cities. Volunteers are needed for the Chicago Bears Family Fest on Saturday, August 2nd, the Dallas Cowboys home opener on Sunday, September 7th and the Dallas Cowboys Rally Day on Monday, September 8th. If you’re interested in volunteering, please email AAD’s Tina Shepherd at tshepherd@aad.org

Have a great weekend,

Shelby - MRF

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