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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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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Michelle820's picture
Replies 6
Last reply 1/11/2017 - 5:44am

Hi, I have an appt scheduled next Monday for body photography. Of course I am very hesitant! Has anyone had this done here? Will I be completely without clothes? Of course my recent WLE area is above my left breast:/ I am very nervous, mostly embarrassed.  Hate to say this is one of the main reasons I avoided full body checkups at my derm...only went for problem visits...which led me to my current situation (had suspicious tiny black "freckle" looked at which was a melanoma in situ). I have a million freckles and moles. Plus a strong history of basal cells.

thank you for any info or suggestions you may have!

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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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Toby0987's picture
Replies 12
Last reply 1/10/2017 - 8:51pm

Had my PET yesterday (3b from 2013). I normally see Dr Mcwilliams but Dr Markovic came in to discuss results. I have heard he is the man at Mayo when it comes to melanoma. I had never seen him before and was afraid he was coming to give me bad news. The PET showed bright red near my appendix/intestines. I was thinking that I was going supernova. Markovic ordered a MRI but it was 530pm so they were shutting down. Definitely a restless sleep last night. Got in to do the MRI at 630am today and after an hour they cut me loose to head home. Got the call from Markovic at 5pm that it was not melanoma and after discussing it with the radiologist team and Mel team the attending radiologist reeled his initial call back in after they went over both the PET and MRI together. I'm relieved to say the least. He said there is a nodule on my lung but it is nothing.  

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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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snow white's picture
Replies 5
Last reply 1/10/2017 - 1:08pm
Replies by: snow white, _Paul_, debwray

Hi All.  I called Dr Hamid's office(the Angeles Clinic) and left a message on Friday and stil have not received a call back.  Does anyone have any info on how to get in touch with him?  

Thanks!

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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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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MelissaMW's picture
Replies 12
Last reply 1/10/2017 - 12:45pm

Hey guys, 

I was wondering if anyone can give me some feedback on a good Melanoma specialist in Ohio. So far I'm looking at Cincinnati Christ Hospital (Dr. Leming), Dr. Karim in Cincinnati as well as at the Cleveland Clinic Dr. Gastman. Any experience with any any of them? I was diagnosed with stage 1a Melanoma 2 weeks ago.

 

Thanks in advance and have a great weekend! 

 

Melissa 

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Carole K's picture
Replies 8
Last reply 1/10/2017 - 8:24am
Replies by: dodgedh2, Carole K, Rocco, DebbieH, SOLE, Anonymous

Hi Everyone,

Someone posted below asking if there are any long term survivors. Yes, there are several long term survivors .  I will post on my fb page and on the fb Melanoma pages asking them to come here to check in.  One is Kathie K, David from Wi, Debbie H, and there are more.  I will do my best to get them here.  They are all awesome people.  I saw Fen replied to your post as well as Janne.  Both are a huge source of information.  Hang in there..  

Love and Light

Carole K

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Bigguy58's picture
Replies 4
Last reply 1/10/2017 - 6:34am
Replies by: Bigguy58, Janner, snow white

Stage not determined yet. Clark level 3. Mole found on arm. No biopsy of sentinel lymph node yet. Unsure if needle or resection is best. Very worried, 58 years old. Was ready to retire early. Now unsure if future.

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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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stevenallenschwartz's picture
Replies 9
Last reply 1/9/2017 - 5:45pm

I was advised  January 2016 that I had stage 3c melonoma. They surgically removed the tumor from the back of my arm and 10 lymph nodes from my arm pit. I than had 4 infusions of yervoy. I had 1 petscan in July of 2016 that was clean and my recent petscan in December 2016 showed the return to my lungs and armpit. Dr. immediately put me on Keytruda and so far I have had 1 infusion. No side effects yet and going for my 2nd infusion next week? 

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landlover's picture
Replies 14
Last reply 1/9/2017 - 5:06pm

Along with many others here I am being treated with Ipi/Nivo combination.  I had my first dose 3 weeks ago and was due to have my second tomorrow.  

I was getting by with just some fatigue and a wandering itchy rash (taking claritin by day and benedryl at night as well as a prescription lotion) until a few days ago when I started having a bit of shortness of breath on exertion, pounding heart when climbing just one flight of stairs, having to rest while on a moderate hike, etc.   When I took my pulse and found my resting heart rate was 90 I decided I'd better call my oncologist.  

He told me to go directly to the emergency room as I live 2 hours away from U of M where I am treated.  They were concerned about my heart or the possibilty of pulmonary embolism among other things.  My heart and lungs were not the issue thankfully, but my thryoid levels were off the chart. I was diagnosed with thyroiditis, which means the immunotherapy drugs have inflammed my thyroid gland and the destroyed cells are leaking thyroid hormone into my body.  I was placed on a beta-blocker to slow my heart rate, and ultimately my thryoid may "burn out" leading to hypothryoidism and necessitating being on thyroid replacement.  I know that is not a huge deal and very doable compared to other issues that are seen with these drugs. 

I just wanted to share this in case anyone else has these symptoms to know to report it promptly.  I was not putting 2 and 2 together initally and just thought that it was due to the fatigue or being more out of shape.  It goes to show that any changes should be reported.  

I am going to U of M tomorrow for my oncolgy appointment and he will decide whether I can then have my 2nd infusion.  Many good thoughts and love to all that are fighting the good fight here.

Peggy

 

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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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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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