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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Aloha14's picture
Replies 5
Last reply 1/11/2017 - 5:11pm

My surgeon decided it was time to drain the 3 groin seromas today.  I'm so glad to have some of the pressure off the nerve on the inside of my upper leg. A compression bandage was put on and I'm continuing to wear bicycle shorts. The surgeon said those were ok if tight rather than buying compression shorts. 

The surgeon said I will probably have to come back a few times to get these drained again and to call in a few weeks. I can kind of already feel some fluid coming back in or else it's swelling from the procedure. Will take a look when the compression bandage comes off tomorrow.

 

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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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snow white's picture
Replies 14
Last reply 1/12/2017 - 2:45pm

Hello my friends.  i am reaching out for my Mom.  She is desperatley in need of some kind of support to get her through this time with my Dad.  Unfortuantely, the boards I believe are just to much information for her.  Mom has tried to get in contact with a few groups, but unfortunaltey has never received a reply back.  I have also reached out to MRF to see of any suggestions from them.  Let me know if you have any suggestions.  THANK YOU!!!!

Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. On Opdivo. Receiving treatment @The Angeles Clinic

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snow white's picture
Replies 3
Last reply 1/12/2017 - 2:47am

Hi All and especially Paul.  I was able to get Dad an appointment with Dr. Hamid on Monday Jan 16th, coincidentally I believe Paul has an appointment the same day!  I am hoping we are able to get all of his medical records by then.  BIG THANKS to Paul for Jasmine's contact info, she was great to speak to.  I don't know really what we expect to achieve seeing him, but I just feel more comfortable having another set of eyes that specializes in mel. on Dad.  If you have any suggestions on questions to ask or any input at all please let me know.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. On Opdivo. Receiving treatment @The Angeles Clinic

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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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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. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. On Opdivo. Receiving treatment @The Angeles Clinic

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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.

To exist is beyond fantastic.

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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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