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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jc2dad's picture
Replies 10
Last reply 9/21/2017 - 10:40pm

Working diagnosis of MS in 2006. Onco at MD Anderson thinks too big of a risk to get IPI and precludes me from any trials. Rejected Sylatron so in wait and see mode. Does not make me feel "warm and fuzzy" just doing nothing. Being very aggressive with scans every 2 months and blood work monthly. No CLND going to do ultrasound every few months on nodes.

Anyone have any advice. Praying I'm one of those rare individuals that never progress.

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TexMelanomex's picture
Replies 17
Last reply 9/21/2017 - 9:51pm

I wish this was a simple social call but I am back in the Melanoma mix after a short respite. I had a grape sized knot show up directly below my clavicle and back down to MDA today. I got the news that it was a node positive for mel...the blessing and the curse at MDA is that they result needle biopsies in about 20 minutes. CT first thing tomorrow to see what else might be going on and then discuss the battle plan with Dr. Ross and Dr. Amaria. Although I was quite content at Stage II, it looks like I have graduated.

 

I'm assuming that surgery is on the near horizon, but I'm sure what they are going to recommend beyond surgery. Any thoughts gang? I know, I know, there are way too many variables based on the info I gave but my mind is spinning tonight and I will know soon enough.

 

Although, I wish I was back here under different circumstances but even after a quick look through the most recent posts it was easy to see why this was such an inpsirational place 6 months ago.

Tex

Tex

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/21/2017 - 9:32pm
Replies by: bridgeyb33, Janner

Hi,

If you have a nevus that exhibits severe dysplasia upon first biopsy with clear margins, do you still re-excise anyway? 

I had a nevus removed and the path report came back as severe dysplasia with margin involvement thus further re-excision was recommended. But, I want to know, had the margins been clear upon first biopsy would re-excision still be necessary?

 

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/21/2017 - 9:23pm
Replies by: Janner

I'm post stage IIa melanoma about 16 months and I just tonight discovered a pea-sized lump in my neck near my throid.  I've been on synthroid for low thyroid for over 20 years.  Does anyone have any information about increased risk of thyroid cancer after melanoma?  I plan to contact my oncologist tomorrow, but am wondering if there is some kind of connection.  Thanks!

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/21/2017 - 9:19pm
Replies by: Anonymous

Found this interesting. I had thought that melanoma arose at 50/50 chance of being from an exisiting mole vs a new one. This study shows that only 29% of existing moles turn into melanoma and most come from new moles. Mine was a new mole and aggressive, so makes sense to my personal case.

https://www.medicalnewstoday.com/articles/319173.php

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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Replies by: Janner, hellokitty1, Anonymous

When I was 12 or so, I developed a mole on my upper arm near my arm pit. It was an ugly, black cluster of freckles. I remember learning about melanoma at 15 and eyeing that sucker very suspiciously. In my 20s, I gained 100lbs (yeah, I know). That mole now looked more speckled and spread out. The black parts were still black, but there seemed to be more white skin speckled throughout the freckles. I didn't know if it was a change or stretched skin. It took me like 8 years after the changing to get it biopsied. The changing never did seem to get worse. Like it evolved and then stayed steady for the next few years. I showed it to my derm in 2012 and he passed up biopsying it. In 2016 when he took it it was no worse than it'd been in 2012, at least not that I could tell.

The biopsy came back as having moderate-to-severe atypica and being either an atypical lentigo or an evolving junctional nevus, with the first one getting more votes when they reviewed it at conference. It's the UPENN lab, which my derm said is one of the best in the world. The path noted things like focal crowning but does not mention regression anywhere.

Is that something a path could miss or not mention? I had a WLE. It's been gone for a year. But now I'm noticing lots of moles on me fading, and rapidly.

Obvioulsy the cells that were still left on the dermis at the time of extraction are gone. But what about the regressed cells? Could those have moved to other parts of the body, turning or turned into melanoma?

I asked my new derm if maybe it never changed after all. Maybe it looked different because of the weight gain and it was moderate to severe all along. He said no way. Moles never start out severe and it must have been regression.

I am SO WORRIED about developing melanoma without primary that I decided not to have children. I don't know what else to do. If my body is eating the cells instead of keeping them trapped in the skin, how am I supposed to fight this and catch it in its earliest stages?

I know maybe no one can help me. I know maybe I have a bit of health anxiety, but if there's any advice anyone can offer at all, I'd appreciate it.

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Hello everyone xxx

As the title suggests, we are due to have a second infusion (yervoy + opdivo) on Monday, however, on the same day mom shall have a second SRS treatment. They state they can either give her her IV infusion or SRS treatment a week later because she cannot have both on the same day. 

If we choose to have the infusion on a later date, it would mean she will get her 2nd dose of Yervoy+Opdivo 4 weeks later instead of 3. 

If SRS, then there will be a 2 week gap between her first SRS and the second one (she will have her first one tomorrow). 

What would you suggest, please? Would someone with mets in brain better to have SRS or Infusion sooner?

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thinkingofu's picture
Replies 5
Last reply 9/21/2017 - 2:40pm

Hello again. Thank you so , so much Bubbles and Cancersnewnormal for answering my previous question. I hope it is OK for us to ask eveyone another one following the earlier thread. 

If doctors would not allow us to have SRS and Infusion ( yevroy+opdivo)  on the same day and we decide to postpone the infusion by one week, would be it be ok to delay it by that much in your learned opinion? In other words: if a patient is supposed to have the infusion every 3 weeks, would having an infusion a week later than planned (at 4 weeks) make the treatment less effective? Or in your experience it happens (e,g, someone is not feeling well, so must delay etc) and doctors are not concerned about it? 

Thank you. You are amazing. xxx

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/21/2017 - 2:12pm
Replies by: hellokitty1, JuTMSY4, Anonymous

I've had a brownish stain looking thing under my toe nail for a few weeks now. I thought I had bumped it on something. Three days ago I noticed a small brown spot under my skin on the bottom of my toe. I'm not proud to admit I cut into it about an hour ago. I was hoping it was a blood blister but there was no blood. Just this little hard brown thing that seems to be in the bottom of my toe. There isn't any pain. But Google keeps bringing me here. I am not sure what to do.

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daughter1's picture
Replies 5
Last reply 9/21/2017 - 1:19pm

Hi Everyone.  My mom has mestatic melonoma in her liver and spleen.  MSK started her on Yervoy/Opdivo combo but after two doses, she was taken off due to her creatinine levels (forgive me if my spelling is incorrect.)   She then continued every two weeks with just the Opdivo and her scans are showing gradual decrease.  We are so happy that there are no new tumors and the ones that she has are slowly but surely shrinking.   Question:  My mother is complaining of horrible joint pain from her back down to her knees.  She has a difficult time getting up and literally had to stop and take a few breaks while walking to the car from the food store.   Have any of you experienced this?   The doctor seemed to be so happy with the scan results because she is responding so well.   I'm a nervous wreck and I feel badly that she is in pain. 

Robin 

 

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Bruce Davis's picture
Replies 2
Last reply 9/21/2017 - 11:56am
Replies by: uccio2014, SOLE

Just felt I had to share my experience as I read a simular one about a year ago or so that gave me inspiration. I've had it easier than a lot of stage 4 people. Interleukin 2 wasn't much fun and either was the "6 months to a year " to live diagnosis from 3 sets of Oncologists in 2011. No primary location was ever found. A nodule appeared in the left arm pit after "leaning" on crutches for 6 weeks following a hip resurfacing.The 6 cm nodule along with the remaining lymph nodes were removed and radiation followed.About 2 months later nodules presented in the lungs. The largest being 5 cm. Being BRAF+ I started Zelboraf in September of 2011. After a few months the CT scan showed the nodules shrinking. After 4 years and 9 months of Zelboraf, the Oncologist let me stop taking it. A 3 month follow-up CT scan showed no progression of disease. The CT images might be mimicking small nodules but could represent scar tissue. I heard the protocol now is to stop Zelboraf after 2 years.

Being off the Zelboraf for 3 months most of the side effects are gone and I'm getting back to normal. I realize melanoma could resurface at any time, but I'm very thankful for every day! Hope this information helps.

Bruce

 

Presently it's "Don't give up."

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williez's picture
Replies 7
Last reply 9/21/2017 - 11:48am
Replies by: Bubbles, Anonymous, dmarie, jahendry12, sgreenberg

Hello all, my name is Guillermo and live in Argentina.

I am Stage IV and I am taking Dabrafenib and Trametinib after failing Ipilimumab and Pembrolizumab (after 22 dosis)

Is someone in the group on dabrafenib and trametinib

Thank you for you attention,

Guillermo

Willie

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braunerk's picture
Replies 6
Last reply 9/21/2017 - 10:11am
Replies by: johnf, Anonymous, Bubbles, Ed Williams

Is anyone in a clinical trial with ImPrime PGG and Keytruda. I have run out of options except for clinical trials. A little history 2007 melanoma first diagnosed 2A 2013 subcut mass now 3B 2014 stage 4 with masses in pelvic and groin lung masses in 2015 and liver masses 2015. I have tried ippi keytruda tvec and braf dugs (mek and taflinar jst got my scans back and I have a new liver tumor about 1 inch across.

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Quick background, stage 4 mel since 2014. Have tried Sylatron, IL2, yervoy, opdivo, trial of palbociclib, trial of glembatumumab vedotin &  now on keytruda.  Having some success with the keytruda, however I have an area on right upper maxillary/palate that is of concern to all.  Dr sent me to ENT who recommended surgery.  The two options were to do maxillary obturator prosthesis or a transplant/patch. Dr  recommended the transplan/patch surgery.  This  would consist of going in through neck up into mouth area to remove tumor, part of cheek bone and couple of teeth.  They will graft skin from leg or arm then "patch" the hole created from the surgery.  This will require a weeks stay in the hospital (2 days being in ICU to make sure transplant takes), be on breathing & feeding tube.  I'm scared but at this point something has to be done .  Wanted to get feedback on what you guys thinks.  Thanks!!

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mom3girlsFL's picture
Replies 3
Last reply 9/21/2017 - 9:07am

Hi Friends!

Longtime member, frequent lurker...sadly, not much of a poster.

 

I have been on this forum since (roughly) 2003. There have been many people here who I've been blessed to journey with and many more who I've been able to learn from. There have been times when I've  "stepped away", sometimes because it can be so overwhelming, and sometimes because of battles being lost by the most courageous warriors. I am so grateful to you all who continue to regularly post and update and share information.

With so many current stories of people battling-people who you cant help but love,  I thought maybe my past year (year and a half) could offer optimism and hope.

2003 stage 1.  2010 groin dissection, start interferon...later 2010 fail interferon, inguinal node surgery. Clear scans, watch and wait. 2015 stage 4 lung, retroperinoteal lymph nodes, para-aortic lymph nodes.

Started Taf/Mek combo-cant remember if we were into 2016 by this time.  Immediate responder! It hasn't  been easy, have changed dosing, switched to zelboraf/cotellic (was bad!), took only taf for a while, have had a couple med "vacations"...currently full dose.

So far 3 scans (last one December) have shown no recurrence. I continue to try and stay cautiously optimistic about the future knowing, statisically, things can change.

Dont know if anyone else here has been on T/M this long as well?

Anyway, much love to all!

Laurie

 

Do not fear tomorrow, God is already there.

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