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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Leslee Laurel's picture
Replies 2
Last reply 7/12/2018 - 6:52pm
Replies by: MichelleRHG, Bubbles

Dignoised in 2017, had blockage removed and now its returned, only 3% of the population have this, no research is being done that my Dr knows of.....survival rate is 5 years....

I am 74 survived Breast Cancer and now this!

Any thoughts were be appreciated, would like to hear from others who may have this.

 

Thanks

Carole

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Anonymous's picture
Anonymous
Replies 9
Last reply 7/12/2018 - 6:32pm
Replies by: Bubbles, Anonymous, ed williams

I am a physician and woke up this morning with a new dark nevus on my face that was NOT THERE last night.  there is nothing else it could be besides melanoma. it is not large but it must be melanoma and the sudden appearance makes me concerned about rate of growth and invasiveness.  I am a bit distraught about the fact it is saturday and it will be at least until Tuesday before I can get this taken off, and that with pulling out my professional courtesy card.  I think I just need some reassurance that a few days won't make a difference, even with how suddenly this appeared.

thanks!

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Sal111's picture
Replies 2
Last reply 7/12/2018 - 5:28pm
Replies by: Leslee Laurel, Bubbles

Hey everyone;

im 24 years old! I want some reassurance. I have a vulva with many moles like 8-9? One of them is very light brown and right on my clitoris. None of them is causing any issue but what i am worried about is their shape looks kinda bit irregular to me! They’re not so round some of them are round but other are not! I just can’t stop crying and can’t force my mom to go and see a doctor with me cuz she thinks moles are normal. I have a lump under labia majoras skin since like year and it’s not growing. Ive scheduled an appointment with urogynae can she see these moles? Or should I find any specific doctor for moles? Is it normal to have this many moles on vulva! I’m terribly scared. I can’t stop myself from checking them every time! It feels like they even grown a little too. One or two of them? I just need some reassurance and what should I do next? Thanks in advance loves

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Kalamazooan's picture
Replies 8
Last reply 7/12/2018 - 5:36am
Replies by: wildpoppy, Anonymous, aldrichdesigner, Kalamazooan

Hello, I am new to the community.  I am writing because today I noticed a small mole on my thigh, circular, about the size of a pencil tip (one mm).  I think I may have had it before, but today it seemed to be a darker brown.  (I am fair-skinned, and all of my other moles tend to be light brown.)  Tonight I looked at it under a magnifying glass, and it seems to contain two tiny black dots, like blackheads or pin pricks.  That would account for its somewhat darker color. 

Does this sound like something I should be concerned about?

I'm seeing my primary care physician in two days on another matter, and I'm wondering if I should ask him to take it off and biopsy it, or whether instead I should make an appointment with one of the physician's assistants at the dermatology clinic I go to and have her do the excision.  Or does it make a difference whether a PCP or a dermatological PA does it, in terms of competency?  It might be several weeks before I can get an appointment with the physician's assistant.  Also, should I have a punch biopsy or have it sliced off?

Also, I'm assuming since it's so small, I'm probably in good shape, even if the biopsy should come back positive?  

Thanks for any feedback you can provide.   

Ben

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laurakoco's picture
Replies 4
Last reply 7/12/2018 - 12:28am

Hi all,

I had my Melanoma stage 1A diagnosis on June 21 on my lower left calf. On Friday I had my WLE at Dana Farber/Brigham Women's. I am now waiting to hear back about the pathology. I am really hoping the margins are clear. 

I just wanted to share my story. Before the surgery I requested a sedative for my anxiety. The nurse came back and handed me the pill and cup of water (or so I thought) to wash it down. I thought it was odd she handed me a specimen cup but didn't think twice. After I had swallowed it, I knew it wasn't water and immediately asked, "what did you just give me?!" It turns out she handed me the specimen cup (in which they put the skin sample) of Formalin (Formaldehyde) to drink instead of water. My stomach was burning so bad, and I was crying and shaking; they had to call poison control. Luckily I didn't drink enough to have any poisoning. 

The surgery itself went well, though. I just had quite a bit of exictement before : / It's crazy that such stupid mistakes can be made at one of the best cancer centers in the country.  

Anyway, my leg is so sore; I can barely walk. I think the scar is 3 inches long and has over 20 stitches on the outside. They took all the fat and down to the fascia. My leg looks really indented and weird, like they scooped an huge chunk out (which they did).

I know you all know how this goes. I just wanted to share. This forum has made me feel a lot better after my diagnosis to be able to share and read others experiences.

Best,

-Laura

Laura - Stage 1A

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cyprianthev's picture
Replies 1
Last reply 7/11/2018 - 10:59pm
Replies by: laurakoco

Thirty-year-old male here, and I find myself in the same spot I was a year and a half ago: waiting on a biopsy of multiple atypical moles. I've never been diagnosed with melanoma, but there is a family history, and just today a doctor removed three "concerning" atypical moles, one each from my face, my arm, and my back.

The mole on my face appeared about two years ago and had grown since then, which is why I noticed it; the one on my arm had an irregular border, multiple shades of brown, and a tail; and the one on my back was jet black, alone on my whole body, and had an irregular border as well, in addition to being new.

Last year all of my biopsies came back benign, and man am I hoping for the same result this time 'round. Has anyone had moles like these that turned out to NOT be cancer?

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/11/2018 - 10:16pm
Replies by: Bubbles

Hey guys,

My dad is on Mek/Taf +immunotherapy and, like most chemo patients, we’re struggling with taste. He’s doing ok with food for the most part, but we are struggling to find anything that he likes to drink. Milk upsets his GI, anything citrusy is too acidic, and we had some flavored water that he really liked for awhile but is now saying tastes bitter. Even normal water leaves a nasty aftertaste. Anybody have suggestions for things they liked to drink with metal mouth/wrong taste?

thanks!

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Coragirl's picture
Replies 2
Last reply 7/11/2018 - 3:19pm

Hi all, I hope everyone is enjoying summer. My husband just had his third infusion of Opdivo yesterday. He has noticed for the past month or so that he feels cold. I noticed that his hands are always cold now, he always had warm hands even in winter! Has anyone else experienced feeling cold? As far as side effects go its really not a big deal, I'm just curious to see if any of you have had this. Thank you! 

Amie Taylor

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SCGator's picture
Replies 2
Last reply 7/11/2018 - 7:18am
Replies by: SCGator, BillB

I know y'all have answered these questions a million times and I'm so appreciative of any guidance you can give.

My husband had a suspicious mole removed from the dermatology PA last week and we got the call that it is melanoma and the PA has scheduled him for Wednesday for larger excision. The path report says, in part, Breslow .43, Clark III,peripheral margins uninvolved, distance of Melanoma In Situ from closest margin .1mm, pT1a.

From what I've read, a wide excision is the standard of care without referral to a surgical oncologist for removal of nearby nodes. We have a melanoma center about 2 hours from us. My thought is to go ahead with Wednesday and then schedule appt with a melanoma specialist for recheck of body for other suspicious spots and let them take over care.

Is this ok? Is it ok that it's a PA? Or, did some of you with similar path reports go to a surgical oncologist for the wide excision and node removal to be safe? Did any of you do any type of scan to be safe?

Thank you so much.

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ApolloKi's picture
Replies 3
Last reply 7/11/2018 - 6:56am
Replies by: aldrichdesigner, KellyH

My friend pointed out the mole on my back and took pictures for me. I don’t know when the black top began. It’s in a very hard to see location. Can anyone tell me if this mole seems normal?  I am broke and uninsured so getting In to see a doctor is tough.  It feels like a regular movable mole.  

https://ibb.co/jdnu7T
https://ibb.co/iaHu7T
https://ibb.co/hk8dZ8

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Anonymous's picture
Anonymous
Replies 10
Last reply 7/10/2018 - 12:09pm

Hello friends!

I wanted to share some good news now that I have the results from my first round of scans since starting Nivo in April.

Brain MRI — NED

Abdomen and Pelvis CT — NED

Chest CT — the smallest lung lymph node nodule gone, the second lymph node nodule significantly reduced (now 2.4 x 1.5cm), the largest mass had a slight increase (5.1x3.5cm) but Dr. Kendra believes it to be pseudo progression from the immune cells.

I had my 4th round of Nivo today and am feeling good!

I have two questions I’m hoping all of you in battle can provide insight on:

1) I’ve only had CT scans and MRIs so far, no PET scans. Is there a reason for me to push for a PET scan next time?

2) I’m feeling good on Nivo and am happy with the progress but I’m wondering if it is beneficial to push to do the combo in hopes of wiping out the Melanoma earlier while all of my numbers are good. Has anyone else done this?

Sending love to all of you other warriors!

 

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two shrinking lung mets. Started Opdivo 4/16/18.

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Gene_S's picture
Replies 10
Last reply 7/9/2018 - 11:52pm

July is my 6th Year Anniversary of being NED.

Started at Stage 3b with a 10.5 mm diagnosis in Jan. 2008, then after 4 more surgeries I had progressed to Stage 4 in Oct. 2010.  I had an unresectable lesion at the C1 - C2 spinal area, lesions in the lungs and the liver.  I went into a clinical trial for Ipi (Yervoy) 10 mg/kg and GMCSF (self injections for 14 days then 7 days off.  I did the initial 12 weeks of every 3 weeks of both drugs and then went into maintenance doses of Ipi every 12 weeks but stayed on the GMCSF with the 14 days of injections and 7 days off.  In July 2012 became NED and remained on the maintenance doses until Dec. 2013.

If you would like to read more about my journey you can read my profile.

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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bjeans's picture
Replies 18
Last reply 7/9/2018 - 10:44pm

My husband is the patient, 3C, chest. SLNB and WLE, three positive nodes, right axilla and supraclavicular - so going in two different directions. He’s in a blinded study, nivo or nivo/ipi at a lower dose. The working assumption is he’s on the nivo/ipi arm.

We’ve been very pleased and impressed with the melanoma center specialists and staff. This is the first “huh?!” question we’ve had.

Initially he had a PET/full body CT (initial diagnostic procedure, unrelated to study), then CT and brain MRI to be admitted into the study. Every three months he gets a chest/pelvis CT scan, part of the study. He just had another one which was clear, yay.

My husband asked his doctor about a brain scan - CT or preferably MRI given that it may pick up problems that a CT may not - and was told that given the location in the chest, it’s not standard of care unless he has symptoms such as headaches. IOW, it’s statistically unlikely to go to the brain, more likely to go to an organ like the lungs.

The director (his dermatologist) and his oncologist are immersed in all things melanoma, keep up with the literature. Anything we’ve brought up b/c of forum posts his oncologist has been familiar with, whether new approvals, a study, changes in surgeries or treatments, etc.

But not doing brain MRIs periodically is surprising, since mets are tricky devils. Why wouldn’t you have ongoing monitoring, if not in-study, separately? You don’t ignore the rest of the body; why ignore the brain?

(Thinking about Doragsda’s recent posts and his wife too.) 

This isn’t a question about insurance approval. That’s a different ball of petunias, though could be related, if a center has tried to get approval and the majority of times it’s disallowed. 

Thoughts?

Thanks - Beth

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Lizzie518's picture
Replies 7
Last reply 7/9/2018 - 10:39pm

I am new here.  I have had two melanomas.  One was on my calf when I was in my early 20s in 2000.  The staging was different then, I think.  I had a centinal lymph node biopsy and wide excision, and was fine.  I had another melanoma in situ in 2007 on my arm. Wide excision.  No problems.  I had my annual check in at MD Anderson over a week ago, and had a chest xray.  I just realized today that they have been calling me to come in.  I looked up my test results, and it says there is a "nodular opacity in the right mid lung.  non specific."  I am freaking out.  I am beyond terrified. Has anyone had this turn up on a chest xray and it ended up being OK?  I have to go in for a CT now.  Really, I am beyond panicked.  Can someone please talk to me?  

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2Kathy's picture
Replies 5
Last reply 7/9/2018 - 10:30pm

Monday’s are turning out to be hell. Last Monday I was hospitalized with colitis. The Monday before that, diagnosed with hyperthyroidism. Today. I went in because I had a pain in my leg, left calf, over the weekend and I said “with the way my lucks running this is definitely a blood clot.” Bingo. It is.

My doctor told me that it may not necessarily be a side effect of my treatment (ipi/nivo) or of the myriad medicines I’m on, She said DVTs are common in cancer patients.

I’ll know be injecting myself in the stomach 2x/day for with a blood thinner for..ever? Unless they decide they can move to my pills but that’s iffy.

Would be interested if anyone else encountered this.

The medicine I’m talking Is Lovenox.

thanks.

 

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