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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cbe's picture
Replies 5
Last reply 10/28/2014 - 9:55am
Replies by: kalisama, MattF, katie1, DZnDef

My husband is stage 4 with melanoma in the liver and lymph nodes. (Had  3 doses of ipi before switching to anti-PD1/Keytruda when it metastized to liver) Scan at 7 weeks showed spots still in liver but no new spread and latest blood tests had liver functions in normal range. So we are still waiting and hoping that the Keytruda is working.

My question is about prednizone which he's been on since August. He no longer has fevers, night sweats, headaches or any of the symptoms that caused him to go on the steroid in the first place and is now taking 10 mg/day. He's currently suffering from severe reflux which is not alleviated by Nexium and Zantac. He's tried going off the prednizone but when he does he's completely exhausted. We now understand you can't just stop.  Has anyone successfully tapered off from 10mg prednizone and any advice on how to do it, supplements to take, etc, to get the adrenal glands working again? There seem to be lots of different theories out there.

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Anonymous's picture
Replies 6
Last reply 11/11/2014 - 4:44pm
Replies by: lou2, Anonymous, Janner, kalisama, Carlos P

Anyone familiar with the use of dermoscopy or confocal scanning laser microscopy?  Both are said to be non-invasive.

Have had one lentigo maligna removed on back, big ditch there now.  Another one nearby just like it, said by different derm at teaching medical hospital said to be slow growing, just watch it.

Now I have a spot on forehead, thin skin only over bone.  It itches a little now and then.  Getting very scared.  Don't want another big incision, and don't know how they could do it at this location anyway.

So, looking for experience with these non-invasive methods.  And whether anyone knows of a place in the SE U.S. that does these first, before biopsy.

Thanks.

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/29/2014 - 3:56pm
Replies by: democat, Emcjones1

My original path report listed Mitotic rate of invasive component : 17 per square mm. My oncologist has open notes. Every visit she list all my findings Clark level etc but every time she write 70 mitosis per mm2. What or is there a difference? Thank you , hope this make sense.

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BrianP's picture
Replies 3
Last reply 10/28/2014 - 5:54am
Replies by: rick1981, Bubbles, tschmith

I'm registered and planning to attend.  Would be nice to put some faces with some names if anyone else is planning to attend.  I'm going to try and take copius notes but it's been a long time so my note taking skills may be a little rusty.  I'll come back and post any good info I learn. 

Brian

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Robins269's picture
Replies 3
Last reply 10/24/2014 - 12:20am

Hi, I am just posting here because I feel like I need someone who knows something to give me an answer..good or bad. My question is: have you ever known an itchy mole to NOT be cancer? I visited the dermatologist over last winter to have a mole checked. He assured me it was a friendly mole. Not a month later it started itching. I recently called back and they say they need to see me ASAP. That itchiness doesn't usually occur with a mole they aren't worried about. Does anyone have experience? I have to wait two weeks now and I'm scared! I have four little ones and all I keep thinking is they are going to grow up without a mom. Sorry if it seems dramatic, I'm just a worst case scenario kind of person.

Thank you!

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FayFighter's picture
Replies 9
Last reply 10/29/2014 - 8:58pm

I have come to this site for hope countless times. Hoping this post helps someone like you all have helped me. A shout out to Celeste who originally planted the seed regarding this trial.

CT scan today (8 wks out) show 30% reduction in liver lesions. 

Thank you.

Angela

 

Recap re my husbands diagnosis:

july 2010 melanocytic nevi Lower left calf excised (later in 2014 reread by mskcc as melanoma in situ)
 
derm exams/6 mos
 
June 2013 small nodules by excision (we had no idea we should be looking for anything like this and thought it was a vericose vein)
 
July 2013 bump in groin. Biopsy shows it's melanoma.
 
Mid August 2013 lymphadenectomy (5/19 positive) and excision of lower leg nodules.
 
oct 2013 start yervoy and gets all 4 cycles.  Colon issues require heavy prednisone and 2 remicades.
 
radiation of lymph basin nov/dec
 
january 2014 tumor profile NRAS pos BRAF neg
 
march 2013 finally tapering of prednisone
 
April 2014 pet shows lesion in stomach (3.5 cm) and little nodule in groin and at lower left calf.
 
may 21 start anti pd1 and KIR trial. 
 
July 2014 stomach lesion 6cm/liver lesions detected
 
july 20 surgery to remove stomach lesion
 
aug 20 start mek162/cdk4 trial liver lesions have shown progression since july
 
todays scans: liver lesions reduced by 30 percent
 
 

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Hi Everyone,

 

Just checking to see if anyone is going to the NYC Wings of Hope Gala Next Thurs..  Would love to get together.. Hope to  see some of you there.. 

Love and Light

Carole K

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JimS's picture
Replies 16
Last reply 10/24/2014 - 9:59pm

Hi,Jim here from Ohio.About a year and a half ago,my mom got what I guess could be called a small lump-like thing on her arm.It looked like an infected mole or an infected bite of some sort.It was purple.Her regular doc said it didnt look like cancer to her and prescribed a cream for it.My mom said the cream seemed to help for a while but it ran out.When she called her doc,the doc said to see a dermatologist to be safe.The visit was today.The dermatologist looked and said she couldnt rule anything out.She said it could be an infected lesion,treatable skin cancer or melanoma,as she said some melanomas are purple.She did a biopsy and then removed the rest.We now wait 7-10 days for results and we are all scared.My mom just lost her sister,my aunt,to lymphoma and is certain she now has melanoma.Any advice or info would be greatly appreciated.Please help!!And thanks.

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odonoghue80's picture
Replies 19
Last reply 10/30/2014 - 4:35pm

Hi all, have a question: has anybody had chemo? and radiation to a direct tumor in your body? not the brain. 

I have a huge (grapefruit size) tumor in my groin that will not shrink. I've had most of the treatments out there (Ipi, BRAF drugs, and Anti-PD1 Nivolumab). I'm just wondering I can do? I'm not feeling great about radiation and especially the location of this tumor in my groin. Possible side effects of fertility issues, lower testosterone. Not great. 

Again, I'm feeling pretty good right now through two rounds of chemo. It just has now shrink this huge tumor - about  I'm just afraid of what happens next. 

Thanks,

Shane 

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Anonymous's picture
Replies 7
Last reply 10/25/2014 - 4:17pm
Replies by: Anonymous, Bubbles, Ginger8888, Ed Williams, Julie in SoCal

Hello

I posted before about my son -27 y/old with stage 3C. He is been seeing at Princess Margaret in Toronto, Canada.

He had a few surgeries to removed compromised lymph nodes, lesion on scalp and SLN. They found one lymph node with melanoma cells each time (2).

He had the 4th infusions of IPI every three weeks which ended end of July. Afterward, they found another lymph node with cancer cells (last surgery was a few weeks ago). He didn't experience too many side effects aside of fatigue and maybe some Gi issues from the med. He wonders if the IPI is working.

He will start the next phase of the trial with the 3 mg/kg every 12 weeks x 4 times. He refused to have radiation on his neck where the lymph nodes were affected and prefers to continue with immunotherapy. 

My question is: Did anyone experience slow response from this med and then becoming effective during the maintanance phase? I think the oncologist is hopeful that the immune system will kick in once he starts the maintanance phase. In the meantime, we are looking for more trials should we need to change directions. 

Thank you for your input!

M

 

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Girl52's picture
Replies 9
Last reply 10/23/2014 - 2:35pm
Replies by: Girl52, Squash, Janner, Anonymous, Lil0909, Linny

BIL still has no plans to see an oncologist. And he won't have followup meeting with surgeon who did his SNB and WLE until next week. He said yesterday that docs he has seen so far should be fired for cutting into his perfectly healthy arm and scaring him with dire diagnosis and then finding nothing.

For now, my sister is finished trying to influence her husband's decisions about evaluating and treating the metastatic melanoma he was diagnosed with via pathology report. She says I'm of course free to share with him directly what I've learned. I haven't decided whether or not to do that. 

Nothing has worked so far. And if insanity is doing the same thing over and over (offering info and suggestions) and expecting different results, I've gone around the bend. Having had a first husband who died of a rare and slowly deadly cancer, this is so hard for me. BIL is highly resistant personality, but I thought in a potentially life-threatening situation, he would listen. This is like watching a tornado approach and your dear one refusing to take shelter.

Will try to settle down, hope, and yes pray that he alters his approach. If he's okay with the uncertainty, maybe I need to learn to live with it.

Thanks for responding so thoughtfully to my many questions....with special gratitude to Janner and Linny. You are amazing people. Hope there's something about this thread that does or will help another member. Would be interested to hear whether anyone else has struggled with similar issue and how you handled it, with your loved one or within yourself.

I'll be reading and returning here for my own info and insight now, rather than passing learning on to sis and BIL, unless they ask. Keep up all good work.

 

 

 

Sis-in-law of person just diagnosed with metastatic non-cutaneous melanoma

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Maureen038's picture
Replies 2
Last reply 10/22/2014 - 2:26pm
Replies by: Maureen038, Janner

My husband has had stage four acral litigious melanoma for two years. He is on the ipi/nivolumbab phase one trial and is stable. My concern is my 27 year old son in the last month has had three colorless hard bumps appear (one on an arm, one on the neck and one on the chest). I took him to the dermatologist yesterday and gave the history of my husband. The appointment to remove them is next week and the doctor said it will probably need a few stitches. Since I wasn't in the room during the exam, I'm assuming the doctor is doing punch biopsies on all three bumps. Is this the correct approach?

Maureen

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ashlee12's picture
Replies 16
Last reply 10/23/2014 - 10:53am
Replies by: Teochasse, ashlee12, Anonymous, Linny, arthurjedi007, Janner

So I have questions about melanoma that I'm not to sure about . How does it spread and how does it get into lymph nodes? Is it a by blood thing?? 

 

Also so I read its a fast spreading cancer... Does that mean it can spread in a week a year ?? 

i currently have stage 0 so I wanna know what can happen

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Jewel's picture
Replies 8
Last reply 11/3/2014 - 12:26pm

Hi there,

   Here is a fast history. 3.7 nodular mole found on husbands left calf 11/2010. Recurrance in 9/2011 on calf, Complete Lymphnode Dissection of left groin 3/19 positive. All clear until 9/2014 Ct scan followed by full body Pet Scan. Showing hot spots in the External iliac nodes & the pop nodes on the knee. Surgery(s) for removal is scheduled for 11/6. Hoping to get back to his NED status. Our oncologist is talking about starting him on YERVOY/IPI. My husband is Braf positive. Catherine from Melanoma Intl tried to look for PD1 trials for us but the closest is 5 hrs away. Ok so here is the question. My husband feels that if he is declared NED after surgery, why put that stuff in his body until HE HAS too. We are way up in the Adirondacks where the nearest hospital is an hour each way. We do have a local health clinic that is open M-F till 4. Is there any Stage 4 people here that have only maintained that way thru surgery? Is my husband crazy?, or am I for wanting him to proceed with YERVOY even though the side effects scare me. Thoughts and experiences PLEASE!

 

Thank you,

Jewel

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/26/2014 - 8:33am
Replies by: kalisama, Janner

Can blood moles be melanoma? I was first diagnosed in 2003 and have been NED since my WLE. I required no other treatment. 

I have a blood mole that has been there for a few years but is changing. I can't get into derm until Friday. Freaking out a bit.  TIA 

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