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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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 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 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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MattF's picture
Replies 14
Last reply 10/26/2014 - 11:45pm

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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Anonymous's picture
Anonymous
Replies 0

I am going to chat in a few minutes if anyone cares to join me..  Hope to see some of you there..

Love and Light

Carole K

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Anonymous's picture
Anonymous
Replies 4
Last reply 10/22/2014 - 2:18am
Replies by: JustMeInCA, Anonymous

Hey there.

I'm a 24 year old male with blonde hair, blue eyes and fair skin. About 6 weeks or so ago, I noticed a small mole type thing on my crown/vertex of my scalp, that I'm pretty sure wasn't there before. I went to my GP who said it didn't look like anything dodgy, although it looked like there were two colours in it (it looked brown to me, though I was using mirrors and a camera to see it) so referred me to a dermatologist. The mole was smaller than a pencil eraser, you know, the ones that sit on the end of pencils. So less than about 5mm - though a form from the hospital today says something about 2mm, but I'm not sure if that's referring to the mole. So it may be smaller. My GP said the referral would be about 6 weeks.

I wasn't happy about the length of time so I later spoke to my GP, who then made it an urgent appointment.

A couple of days after my appointment, checking the mole again, it had turned black, almost like a scab.

Two weeks later I went to see a dermatologist who looked at it, said it looked like a blood blister, though she said blood blisters don't normally appear on the scalp, so then referred me to plastics to have it removed.

A few days later the mole which had gone to look like a scab, well, fell off. Underneath it was a paler version of the previous brown mole.

Couple of weeks later I go to plastics consultant who looks at the mole on my scalp, says he'd be very surprised if it was anything, check's my lymph nodes in my neck/below my jaw and says they seem fine, says he'll refer me to another hospital to have the mole removed, then sends me on my way.

I keep monitoring it and the size stays the same, still flat against my scalp.
I go today to get it removed, went smoothly, I think. I asked the surgeon whether it looked like anything and she said although there looked like there were two colours in the mole/lesion, its uniform. She cuts it out, tells me I'll receive a follow up letter in the post in the next 4-6 weeks. If the biopsy did show anything they'd call me up sooner.

So, now I'm home, I'm worrying. I keep reading stuff online how people get the results back, which are 'fine', then down the line something serious shows up. How common is that? Does it sound hopeful what the doctors etc. have said? And is that a normal wait time for the results, if it was anything serious?

Thanks.

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Steve2142's picture
Replies 4
Last reply 10/20/2014 - 6:04pm
Replies by: Ed Williams, Anonymous, Steve2142

I had metastatic melanoma in one lymph node in 2012 and had a complete lymph node dissection. I did not opt for interferon.  Have watched it closely and had annual pet scans and all has been good.  I just found two suspicious spots and had them biopsied and they are both new melanoma lesions that the Dr. believes are tied to the original melanoma from 2012.  One on my back was a 6.5mm non-ulcerated lesion and the other was a 4.9mm ulcerated lesion in my scalp above the ear. Going back for a pet scan and will probably need to discuss immunotherapy again.  My question is would this be considered "distant metastases" of the skin and therefore puts me at Stage IV?  Thank you.

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Hi :)

I have had a mole removed from the sole of my foot today. It was 4mm by 4mm in 2013, after a visit to my GP as it had ulcered & was weeping a clear fluid.

it grew from that to 7mm wide & 6mm high in 13mths.

My question is whether anyone has had a mole this size or bigger? That has evolved & grown so quickly (if that is quick?) & it ticks all the ABCDE criteria, but has come back benign? Or Dysplastic?...

Any advice greatfully recieved thank you! :)

Tori x

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uccio2014's picture
Replies 4
Last reply 10/27/2014 - 4:57am

Hello all,

it is the first time i write here but i follow the site dialy.

Here my question:

there is someone under zelboraf for a long period?

any ned? and if so after how long? and for how long?

how did you detect it had stop to work?

Praying to go on  reading about all of you for years

Antonio

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