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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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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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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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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michaelinsocal's picture
Replies 8
Last reply 10/22/2014 - 7:01pm

I started my 12 month treatment back in May, 2014. Made it through three of four weeks of IV high dosage, couldn't tolerate more than 3 weeks. Then I took a two week break and started the once a week self shots.

My question is for those who completed the 12 months, at any time did they reduce your dosage based on the side effects? I've had my dosage cut three times during the first 4 months. I'm taking exactly half of the dosage I started out with. My dr reduced based on my blood work and severity (nausea, fever, diarrhea etc) of the side effects.

I'm also interested to know if onterferon worked or failed for you.

Thanks in advance for any feedback.

 

Michael

 

 

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ashlee12's picture
Replies 4
Last reply 10/22/2014 - 6:58pm

So yesterday i was told i have melanoma... im only 22 and i feel that my life is over. next year i am getting married and i almost just wanna call it off i feel like im dying..

 

 

They told me that it was caught super early and im not even on a scale yet... they said its just on the surface. 

 

 i am getting it fully removed on the 28th..  im scared tho that its deeper then the thought or has spread in my body.. im very new here and lost and sad 

 

 

 

 

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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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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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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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odonoghue80's picture
Replies 5
Last reply 10/21/2014 - 10:39pm

Hi there,

i have a tumor in my groin that has been growing out of control, and is extremely painful. It is the size larger than a softball and is so painful I can't walk. Last week, my doctors postponed getting the TIL therapy at the NIH, and my local oncologist agreed.

So this week I am starting on chemo and radiation the following week. I'm not sure what to expect from the chemo (carbo/taxol). It will be an infusion for 4.5 hours, every 3 weeks. Has anybody had experience with this chemo. We are hopeful this can shrink the tumor and give me some relief. 

As for the radiation, I have no idea what to expect of it, or how it is administered? I have experience with SRS radiation to the brain, but has anybody have experience with a targeted radiation therapy to the body? If anybody can share some thoughts please let me know. 

Thanks,

Shane

 

 

 

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Lyric17's picture
Replies 26
Last reply 10/21/2014 - 6:24pm

Hi everyone,  my name is Lyric and yes that is my real first name. I am 30 years old and I seem pretty healthy except for an issue I have going on with my index finger nail.

 

About a year ago I noticed a small skinny pale light brown streak on my nail. The line is near the side of the nail and not the middle of my name. It runs from the cuticle to the end of the nail. And to be honest I use to smoke and had quit about a month before I noticed this discoloration of a line on my nail. So when I spotted this I thought it was nothing more than cigarette tar stain to my nail and it would slowly go away since I was smoke free.

 

Six months went by and nothing changed. The small skinny light pale brown streak was in the same spot with no changes. My fiance kept telling me I was worrying over nothing and just to forget it and as you age your body changes. At the moment I went along with what she said but at times in the back of my head I didn't feel right about ignoring it. Kind of like it was my body telling me something or a possible warning. 

 

Finally at about a year I got tired of looking at it and after several hours of non stop looking online the only thing I seen remotely was something called Subungual Melanoma. My fiance did her own research and it's all she could come up with as well. She grew a little worried by now and so did I.

 

Next day I called my local clinic and doctor to get an appointment. I was able to see the doctor about an hour later. So the doctor looked at my index finger nail and was speechless. She said she had no idea in all her years of practice had she seen something like this. I mentioned to her what I found online and she left the room to do some searching. She came back and stated she had no idea and she called making a referral and appointment with a Dermatologist Clinic and Cancer Specialist next town over.

 

I had to wait about a month before I went to see the dermatologist. Once the dermatologist looked at my fingernail she asked if I'd like to have a biopsy done that day or later and of course I chose now. So the dermotologist comes back and ssys she is doing a punch biopsy of my nail and the skin area below the nail which is where melanoma/whatever it is is. She does the punch biopsy and not to much discomfort. 

 

Now I had to wait a couple weeks for the results of my biopsy. If I got a letter in the mail it was benign and if the called me it's malignant. Well today my results came by a phone call. But the RN says the results showed nothing but something is there and we need to figure out the cause of it. She said that this time I will be seeing the head main dermatologist next visit who will performing a deeper biopsy sample of the area. The RN stated they knew it was some type of melanonychia but don't know exactly why or what. So they don't know if it's benign or malignant or nothing. So now I have to do a second biopsy of the same spot and a little deeper. And now i gotta wait another month till my next biopsy. This concerns me a lot and has me extremely worried. My fiance keeps saying things will be alright but that people die young everyday - which this is not very helpful.

 

Can anyone give their thoughts and opinions here? I'd really appreciate it a lot. If you know anything about, anyone who has been through or if you have been through this please let me know more information. I feel lost and kind of like it's a type of cancer that many doctors don't know about. Help please!!!

 

BTW I have recently became a member also of Cancer Compass asking for help and thoughts. The people there have been really nice and I have had a couple replies but I would like to see thoughts and help also from those from melanoma.org site here. Please if you've have had experience, know someone who has or any information please let me know. I have included a couple pics as well of my index finger with the supposed issue. In the photo you will see the light pale brown line near the edge of my nail and you will also see where a recent punch biopsy was performed. As stated above that biopsy came back inconclusive and I have to now go in for a second biopsy which will be deeper. 

I'm a 30 year old white male btw just to give a little idea of my age and race.

I'm very terrified and scared. I have cried almost every day over  and can't imagine dying and leaving my two dogs and two cats. I can't imagine leaving my fiance as well who will not discuss or talk about it all. I have no family to talk to as I was adopted and have not talked with my adopted parents in over 10 years. I don't know my real parents and family so medical history and support is not there. I have no one to really turn to and I'm sorry for asking for help and support. But then again this could all come back benign but from what I've read one benign cases are more common in african american but with caucasian it's very rare and more possibly malignant. Plus the life expectancy is horrible. Help me with information or anything if you can.

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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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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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BrianP's picture
Replies 10
Last reply 10/21/2014 - 6:03am

Hey Chris,

Was just wondering how you are doing.  By my calculations you should be coming up on your 3rd Ipi soon.  Hope things are going well.

Brian

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