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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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 4
Last reply 10/23/2014 - 9:46pm

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 14
Last reply 10/23/2014 - 8:19pm

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 10
Last reply 10/23/2014 - 5:37pm

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 5
Last reply 10/23/2014 - 10:48pm
Replies by: Ginger8888, Anonymous, 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 7
Last reply 10/23/2014 - 6:22am

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 1
Last reply 10/21/2014 - 9:39am
Replies by: 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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MattF's picture
Replies 11
Last reply 10/23/2014 - 4:32pm

Hey everyone

So I am currently on Xgeva injetins fo my bone mets.  And I just finished Yervoy.

 

Had TAF / MEK Jan - Jun (failed in June and i went downward fast) 

Ipi Aug - Sept 

2 rounds of radiation (brain spots and abdomin) over the summer.

 

Start Keytruda  on Wed 

 

Thinking this is the last treatment

 

pretty darn scared.

Matt

 

 

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Janet Lee's picture
Replies 3
Last reply 10/21/2014 - 2:53pm

It has been months since I've posted something about our roller-coaster ride with melanoma. My Don has had one issue after another since his diagnosis in January of 2013, Stage IV. He finally started on Merck's expanded access to Anti-PD1 in late June, and at this point after five infusions it appears that he is not responding to the treatment. The mets in his lower abdomen appear to be growing and causing even more problems.

It breaks my heart to see this beautiful man suffer so, and to see his robust, healthy 200+ pound body deteriorate to a skeletal 130 pounds. Dr. Hodi at Dana Farber is now saying no more PD1 until he feels stronger. He has been in so much pain for so long, I think it has just sapped too much out of him.

Don has now been in the hospital for one month. He had an epidural catheter placed so that he gets continuous pain medication directly into his spine instead of taking all those pills and being affected by the pain meds mentally. The theory is to get him out of pain so that he can regain some strength to continue treatments.

However, now the catheter is causing him pretty significant discomfort and he is once again in too much pain to move much. And after being bedridden for a month, there's not much strength there at all.

As always, we appreciate any feedback, common experiences, helpful anecdotes.

I started writing an email to our friends and relatives right after Don was diagnosed, more so I knew I what I said to whom. I later started posting on one of those "caring" websites. It occurred to me that some of you may be interested these updates, so I'll give you the link here:

https://www.mylifeline.org/donlee

Keep up the good fight everyone. Good night.

Janet Lee

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Girl52's picture
Replies 5
Last reply 10/21/2014 - 11:33am
Replies by: Janner, Linny, Girl52

Got message from sis tonight: surgeon says BIL's lymph nodes clear (nothing said about WLE tissue yet). Yay! What does it mean to have pathology of metastatic melanoma with clean nodes? What would staging be here? And if primary remains unknown, could this mean there's still something in there somewhere that could pop up? Does anyone know where further testing/treatment/watch-wait goes from here in a case like this? Does this depend on results of WLE (e.g., satellite lesions, in-transit, etc.)?  Thank you for any insight.

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

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ashlee12's picture
Replies 7
Last reply 10/22/2014 - 6:46pm

 

I'm very depressed I'm only 22. I'm getting married next year and my life is over. I have cancer and I feel as if I'm dying. I was checking for other moles tonight and I feel as tho I have about 4 others that look the same... All I do is cry I feel like this is it.  
Derm told me not on scale yet for melanoma

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