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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magnus31's picture
Replies 4
Last reply 1/10/2017 - 12:57pm

Hi friends,

M34 stage IV off to India on holidays in two weeks and considering taking Dukoral (an anti-cholera and diarrea vaccin dissolved in water and taken twice before departure).

Would you see taking Dukoral as any risk to my ongoing Nivolumab treatment?

Will ask my medical team but wanted your views.

Best,

 

Magnus

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Showmegirl's picture
Replies 12
Last reply 1/12/2017 - 11:08am

I just recieved my pathology report from my initial biopsy.  I could really use some help trying to understand this report.  I go to see the surgeon this week, but I'm going crazy now.  So any insight would be greatly appreciated.  THANK YOU!!

This is what the report says: Malignant Melanoma, Margins - Positive

Tumor size- 0.7cm

Macroscopic Satellite Nodule - not Identified

Histologic type - Nodular melanoma

Maximum tumor thickness - At least 1.88mm  (Clark's level IV)

Ulceration - Not identified

Peripheral margins (invasive) - Negative; distance = (0.3mm)

Deep margin - Positive

Mitotic rate - At least 1 per mm

Microsatellitosis - Not identified

Lymph-vascular invasion - Not identified

Perineural Invasion - Not identified

Tumor Regression - Not identified

AJCC pathologic stage - pT2a, pNX, pMn/a (stage at least pT1B)

Non brisk tumor infitrating lymphocytes present

 

 

 

 

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Toddmichael's picture
Replies 2
Last reply 1/12/2017 - 5:34pm
Replies by: Toddmichael, marta010

Hi - starting 5 sessions of radiation this week.  I'm wondering what to expect, hopefully nothing too severe.  have had radiation before on top of head and only real side effect was some reddening.  I've been told about the slight chance of it affecting my saliva.  Thanks for any input.

Todd Guzy

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Dreaf01's picture
Replies 10
Last reply 1/9/2017 - 1:54pm
Replies by: Dreaf01, Janner, Ed Williams, jennunicorn, Anonymous

Hello everyone! First of all I want to send prayers and good vibes 2 everyone. Quick question, on 12/29 I had a SNB and WLE with 2 nodes removed frommy groin, both negative as well as clear margins. I follow up with my surg. Oncologist on the 16th. About 3 months ago I had a terrible tooth abscess that lead to severe facial and jaw swelling. After i had two teeth removed most of the swelling went down except a small lump on my jaw. When I press on the lump it moves around and sometimes feels like it disappears, but it always comes back. Should I be worried ? I do apologize if I sound crazy, i have become extremely anxious since this whole melanoma thing started.

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White wine was actually the only kind of alcohol with which an association with melanoma was discovered. Every drink of white wine per day was linked with a 13 percent increase in melanoma risk. And participants with an intake of 20 grams or more of white wine daily were 73 percent more likely to develop a melanoma on their torso. The risk was shown to be greater among women than men, probably because men are usually larger in size and can metabolize alcohol better. Surprisingly, no correlation between consumption of red wine, beer, or liquor and the likelihood of developing melanoma could be established.

read complete article at

https://jonbarron.org/cancer-alternative-cancer-therapies/white-wine-and...

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

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skousal's picture
Replies 16
Last reply 1/11/2017 - 4:43pm

I am 25, had a WLE and SNB, one node had micro-metastasis. Pet scan did not show anything concerning per the doctor. I know I have a few different options now. I can have a complete lymph node dissection (groin) and receive a systemic therpay (doctor said my veins are small and I would need a port) or I could do nothing. I saw Dr. Merrick Ross at MDA and he recommends an aggressive treatment plan. I am a nurse and I work 12 hours shifts on my feet and I fear the surgery will force a career change, which is okay, I just want to be prepared. Any insight, advice or personal stories would be appreciated as I make this decision. I have been reading many of your stories and I hope for the best for all of you!

Thank you, Shawna  

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JoshF's picture
Replies 19
Last reply 1/10/2017 - 3:42pm

Hi Everyone! I'm sorry I haven't checked in and my wife told me Casagrayson sent her a message checking in on me. I appreciate everyone's concern. I've been hanging in there best I can. Not sure where I left off from last post but I've done 1 round of Keytruda and Abraxene. I've had good days and bad days. Unfortunately now I'm having I guess what would be called referred pain in right side from liver. Scan and next infusion is scheduled for this Thursday. Liver function tests aren't out of whack but I'm not sure if that means anything. There's still talk of starting TIL at end of month but I've got to get there first and meet all inclusion criteria. So I go day to day. I hate the discomfort in my side, scares me. Few weeks ago they said I'm not too far off from liver failure. We'll see, praying for some positive news in the future. Going to browse forum now...check in on Paul etc... Thank you all for you support, concerns and well wishes. Love you all.

Josh

Let's work for better treatments....for a cure!!!!

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_Paul_'s picture
Replies 22
Last reply 1/10/2017 - 8:57pm

Hello Family!

I have come to realize that there is a part of the roller coaster ride where suddenly dealing with Mel becomes a full time job.

I would have been overwhelmed without all the support I have been receiving. My youngest daughter has assumed the bulk of the load which is non-trivial: rides to the clinic, visits while in hospital, keeping a log of med ingestion, and more.

To help out with all this, and to just visit me, my oldest daughter flew in from Berlin, Germany, my youngest sister from the Bay Area, and my other sister from the Toronto area. I am a truly lucky dude to have such a loving family.

It has taken a while to get dialed in post-TIL. I have been going to the clinic daily for antibiotics (my blood grew stuff and I later developed febrile neutropenia which freaked everybody out). I am now on a Fentanyl patch with Dilaudid for breakthrough pain. The only remaining issue is to get on top of is the constipation from the opiates. But my care team is a smart experienced bunch, and I know we will get there.

Celeste, I carefully read your blog post, and links. Thank you so much for that. It is going to help many people that end up in a similar state as me. But I have to confess that I have little confidence in anything that targets the PD-1 or PD-2 pathways. My body is just not reacting to that type of therapy any longer. I am hoping that Dr. Hamid has some suggestions for me since he has already been dealing with patients similar to me.

I will be flying there on the 16'th, along with 10 lbs. of medical records. I'm in a good place mentally even though I grow new sub-q's ever day. Yesterday one popped up on my left nipple. I feel like a radical goth tattoo freak with all the new black. If I survive this (I think  Brian or Mat pointed this out), I'm going to have an awesome story.

- Paul

P.S. I keep praying for you guys every day. You are all super important to me.

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AvaL's picture
Replies 5
Last reply 1/17/2017 - 7:41pm

I only found this forum last night and already really glad I did!

Hubby had a groin dissection week and a half ago and I wondered if the draining of fluid is normal. It started to decrease to minimum 150ml but since last week has been steadily rising again. It's now back up to 200ml (sometimes over), no signs of reduction and will be two weeks in a couple days..... is this normal? X

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Been a member for a while, but rarely post. 2.5 years since Stage 4 (lungs) diagnosis. Now in liver, lungs, both adrenals, chest wall, and just this week, small bowel.

Started keytruda late August, but have been struggling since. Lots of bleeding mets, and now new mets to the small bowel.

I'm in Toronto, with Dr Petrella, at Sunnybrook. Meeting with her this week, regarding the new mets. Wanted to know if there was anything promising, or available, that I should be inquiring about?

Failed Debrafenib/Mekinist. Radiation on the bleeding mets has failed twice. I understand that I may be nearing the end of my options, but just wanted to find out...

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/8/2017 - 4:12pm
Replies by: Treadlightly

I had a wle for a insitu mole on my back. Its been 3 weeks since surgery. I just had all the stitches removed and noticed a brown spot near the scar line about a mm or 2 away hard to tell. Before surgery i had a mole under this new spot about a few centimeters. Im wondering if after the wle was sewn back the mole moved higher up that was under it. Either way im having it removed friday. What do you guys think? Can melanoma grow that fast and do you think its a reoccurrance. Or the mole that was underneath it. Its flat and light brown, no bumps. Sorry i have anxiety and depression issues. Thank you

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snow white's picture
Replies 6
Last reply 1/9/2017 - 12:36am

so with this new possible twist with.my Dad, I am now researching to see where this can be treated if it comes to.fruition. I have gone back and read a bunch of old posts about Lepto.  From what I gather MD Anderson is the only place treating this.  Am I right? I also noted that the orignal doc doing the treatment has now retired and the new go to doc is Isabella Glitza.  I don't know if you all remember, but Dad had a consult with Margolian at City of Hope and she wanted to put him on a Trial that what super hard core.  I can't remember off hand the exact treatment, i have it in my notes somewhere.  Dad ended up at Hoag with an oncologist that he absolutely loves and has taken great care of him so far, but as I mentioned before she is NOT a melanoma specialist (sidenote: his current oncologist DOES consult with Margolin about my Dad).  I tried to protest, but it did not work.  Both Dad and Mom feel comfortable with her.  Well now things may be changing.  I REALLY want Dad to see a Mel Specialist regularly, but he nor my mom cared for Margolins approach or bed side manner.  So, should I push for him to see a diffrent Mel specialist here locally or should I push for them to go to MD Anderson and get with a doc there?  

ANY AND ALL THOUGHTS ARE WELCOME.  I trust you all with your opinions.  

XO Jen

Jennifer-- Dad has stage IV Mel. No primary found. Treatment has been: Gamma Knife to the 15 brain mets, Craniotomy to remove 3 large tumors in brain.  Currently receiving Opdivo every other week.

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/8/2017 - 7:33am
Replies by: MaPerny, snow white

my husband has stage 4 maligant metatistic melanoma and dorment CLL ....

2mm in lung.... MDA started him on keytruda.... 3 weeks later, he had mild itching, a rash then purpura (bleeding under skin due to lowered platlets)  ... we were out of town and took him to the ER in Santa Fe... we had a wonderful oncologist who gave him IVIG which drastically improved his platlets and we returned home days later.... he warned us not to let the MDA oncologist take my husband off of keytruda as it will be his saving grace.... 

went to MDA for a follow up and the oncologist decided to remove my husband from keytruda without an indepth discussion and said the only other options were chemo and radiation....

we were devasted and are gonig to another large cancer center for a 2nd opinion.... 

has anyone else had platlet issues while on keytruda? and if so, did you oncologist pull the treatment? 

god bless all of you....cancer sucks but we will beat it!

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Marksa2570's picture
Replies 3
Last reply 1/9/2017 - 7:24pm
Replies by: Anonymous, UBContributor, Treadlightly

Hello all,

I too am another new member to your group.   I'm fortunate to be coming in as a 1A but I have questions.  I grew up in the sun - former swimmer and lifeguard.  I'm 46 and Ive already had about 4 basal cells and about 3 atypical moles (all that required additional excision).   My dad has had melanoma twice so I'm always checking my skin out and I keep a close eye on whatever I can see. 

In November, I self-identified what ended up being a basal cell on my face. The dermatologist fought me about biopsying it but I nearly demanded her to do it and ended up needing Mohs.  Her Moh's surgeon couldnt do it for a couple months so I found another who was willing to remove it sooner.    He had to do a consultation before removing, so I asked him to do a full body scan while I was there.   He looked at my entire body and I put extra focus on those moles I am most concerned about.   There was one in particular on my bicep he studied for a bit but decided everything looked ok and nothing was removed.   

The moles continued to bother me so while doing the Mohs, I asked if he would cut off some moles when I got my stitiches out (mainly because I didnt like them) and he agreed.  We removed three - one came back as the melanoma, one severe atypical needing futher excision and the other was fine.   The melanoma is .21 mm, no ulceration and class III.    

I am fortunate it was found early and it was partially due to diligence but I also feel like it was really due to luck.  I knew he wouldnt remove 10  - so I had to pick my top 3 and that happened to be one of them.    

What concerns me is how do I know I dont have others that are melanoma (I read on here its rare to have multiple primaries - but doesnt seem unheard of)?   That mole was pretty unusual but it wasnt a classic nasty like you see photos of.   I've had multiple dermatoligist in the last year look at those moles and all said everything seemed fine.     I know this isnt an exact science and that is what scares me the most.    

I dont have a ton of moles.... maybe 20-25 total and part of me wants them all removed (or at least the 10 most concerning ones).    Now that I have melanoma, he has said that he would be willing to remove anything I request (he said I have a good eye for detecting bad ones!).     Does anyone have any thoughts on that?    Also... I found a mole-mapping app... does anyone use that?  

My WLE is Friday for the atypical and melanoma.    I'm also seeing a new dermatologist on Monday just to get a 2nd opinion.     

Sorry this post is so long.... I just have a lot of thoughts on my mind.  I am impressed with the kindness and bravery I have seen on here.    Any input would be welcomed.      

 

  

  

 

 

 

 

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AvaL's picture
Replies 16
Last reply 1/9/2017 - 2:39pm

Hi all,

I was wondering if I could have a bit of input regarding my hubbys prognosis. I know that melanoma is v.unpredictable, and each and every person's journey is different. There are many factors involved. But we're at the point where we feel we need to know a tough idea of prognosis, accept and move on as much as you can with this beast hanging over you!

He had a 2.3, superficial spreading non ulcerated MM. His SLNB upstaged him to 3a after micrometastasis was found (one deposit in one sentinel node measuring 0.5mm in diameter). All nodes were removed from left groin and all came back clear. 

his dermatologist does not provide a a rounded version of outlook but has painted a pretty dire perspective from the outset. To be honest we are probably more prone to a negative outlook 'prepare for the worst sort of attitude' I guess. Anyway I've been reading (can't seem to stop that!) and it seem he actually has quite a good progosis (possibly) given just one micrometastasis node, and non ulceration of primary. Hope it's ok to post this sort of question up?! Would really appreciate views x

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