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.

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Henry 1990's picture
Replies 11
Last reply 4/18/2017 - 8:50am

Photos of the current situation are below, as well as what has happened, and most importantly, a few questions. And I have scheduled a digital dermoscopy for 24 April. (As I am writing this, it is April 16.)

In December, 2016, I somewhat scratched my upper stomach and there was something and when took a closer look I found an oval mole that, as it seemed, I had cut in with my finger nails at the lower side as a result of the scratch.

I didn’t think if the mole was there before or not, but later I started to realize that, hey, this mole definitely wasn’t there a few years ago, and maybe even a few months ago. All-in-all, I didn’t suspect anything dangerous at that point.

Then, at the end of February in 2017 or maybe somewhere in March, I somewhat found a dark-brown stripe at the lower side of that oval mole. It kind of was like broken and I was able to remove most of the dark pigment with toothstick and the toothstick tip got covered with dark-brown color too (so it was not  entirely solid). It was at that point when I suspected that it might be something bad but not necessarily and I removed the dark stuff and left it to heal.

As I remember, after a week, I didn’t notice the dark stripe and it was evenly colored but it was little more reddish perhaps. But now, in this month, somewhere in the first week of April, I noticed a new dark spot in that mole at that side.

By looking closer to that new darker spot inside the mole, I notice that it is not oval. At a closer look it appears as irregular shape, almost as scaled shape of x or +.  The diameter of the mole itself is 3mm at the longer axis and 2mm at the shorter axis. Based on touch and light reflections it is not entirely flat (as checked today). It is slightly elevated, particularly at the darker side and not necessarily at the lighter area.

The two pictures below show how it looked the first time I took a picture of the mole on April 10, 2017: 

[img]http://i.imgur.com/UdzbSSi.jpg[/img]

[img]http://i.imgur.com/boVMvWe.jpg[/img]

 

And here another three pictures show how it looks a week later, today, on April 16 (it has gotten little darker, and I’m worried that it has gotten slightly elevated as well):

[img]http://i.imgur.com/oKRXiZv.jpg[/img]

[img]http://i.imgur.com/mglwpNo.jpg[/img]

[img]http://i.imgur.com/eHUMLS8.jpg[/img]

 

I have tried to find similar cases by searching in Google, and I found one case study that seems to be sharing similarities with this one (Case 11, or case K - thickness 0.60 mm):

http://jamanetwork.com/journals/jamadermatology/fullarticle/209659

 

Now, based on what I have said, and in case that it might be fastly growing nodular melanoma, should I wait the 7 days ‘til I get checked by dermatologist who is specialized checking moles with digital dermoscope, etc., or try to get it removed faster by general board certificated local surgeon? (I’m afraid that local surgeon might not see the seriousness of that and not cut it out properly (I live in Tallinn in Estonia and I’m not sure how “punch biopsy” is in translation to Estonian language either), and maybe they’re not going to send it to proper or specialized biopsy or not sending it fast enough – and when it has been cut out that it then cannot be evaluated with digital dermotoscopy as it has been cut out, etc.)

My second question is that, should I go to the hospital where digital dermoscopy is performed and try to get an earlier appintment than on April 24 – which is 7 days from now? (When I went there on past Friday they first offered me appointment in July, and then I expressed that I suspect melanoma and I got appointment for April 24, which is 7 days from now as I am writing this.) Assuming it could be vertically growing melanoma, should I go there and try to get examined faster – and if so, what specifically I should tell?

And my final question, how quickly a fast-growing melanoma, starting from 0.5 mm thickness and about 3 mm in diamater could possibly grow internally in 7 days in a relatively healthy person? 

Could I slow it down by eating more C-vitamin, like a lot of red pepper in addition to war borccoli? I just started to take vitamin D3 as well as in Estonian winter is without sunshine and I haven’t gotten much Vitamin D since the last summer I guess.

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Anonymous's picture
Anonymous
Replies 12
Last reply 4/19/2017 - 9:10am

I have been recently diagnosed with stage 3a melanoma. I had a WLE and SLNB done 3 weeks ago. I had two lymph nodes removed and one came back positive with a very small amount of cancer in it. My oncologist and surgical oncologist both recommend that I have CLND. I don't know what to do? I don't like the idea of cancer possibly being in other lymph nodes but the possible complications of a CLND scare me. I do not want to get lymphedema, and was told I had a 30-40% chance of developing it after surgery. I don't know what to do? I definitely do not want to try Ipi because of the side effects. But, I am not 100% sure that I want to do the CLND. Does anyone have any advice?

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Replies by: VIve, Anonymous, KatieB

Hi all,

 

I was was just diagnosed this week. I haven't seen the pathology yet but I've been told that I was lucky and that it was .3mm and stage 1A.  An experienced melanoma surgeon said he would not recommend testing the nodes. It was a shave biopsy but he felt confident in the pathology.

I've never been a hypochondriac and I've always been really healthy but for some reason this diagnosis has me terrified and worried that other recent symptoms could be linked. I'd love any advice from you all as to what I should worry about and investigate or not.

Specifically, I'm worried that my menstrual cycles have been crazy recently - 10-13 day cycles for the past few months with heavy bleeding.

I went to the gynecologist recently (but I didn't know yet about the melanoma) - she ordered blood tests that show elevated thyroid and an ultrasound that showed cysts on one ovary but I haven't heard back from her about her analysis of those things.

I have a node in my armpit (opposite side of the melanoma spot on my back) that is enlarged - maybe the size of a big marble and has been for years.

I probably have 20 remaining moles (many have been removed over the years.) The one that was removed didn't look bad to me so now I don't know what I should be looking for.  I'm really worried that I have more melanoma and a worse case somewhere else on my body.

I'm not sure what I'm asking for here - I guess I'm just overwhelmed and scared and not sure who can help me to rule out the possibility that the cancer has spread: dermatologist, gynecologist, oncologist, general physician?  Am I worrying too much?  I feel really panicked and not sure what to do.

 

thank you so much in advance for your help,

 

katie

 

 

 

 

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BetsyM1214's picture
Replies 7
Last reply 4/19/2017 - 5:14am
Replies by: Anonymous, Jamie1960, BetsyM1214

I received a diagnosis of 1A last week and I'm scheduled for a WLE in 4 days. I received no information at the time of my diagnosis other than a voicemail and a copy of my path report from my detmatologist. Thank goodness for the information here! I met with the general surgeon yesterday to discuss the WLE and he offered me a basic explanation of the path report, WLE & follow up checks. The dermatologist also told me to met with an oncologist for a physical after the WLE.  

Here is my question...the surgeon highlighted one concern when I asked if there would be a SLNB and if not, why? He said based on my path report, there is no need for SNLB BUT it's possible that my WLE could show that the original Breslow depth from the biopsy was incorrect (unlikely but possible) and the SLNB then should have been done before the WLE because the staging from the biopsy was wrong. He pointed to the following note in my path report - 'the lesion extends focally to the base of the biopsy'. 

My gut is to postpone the WLE & get an appointment with a melanoma specialist in Chicago to get a second opinion on the SLNB before the WLE. I am now at a local suburban hospital cancer center with no specialty in melanoma. The drawback to this being I would be postponing the WLE for a few weeks while I wait for an appt with a 'better' doctor. My sister in law received treatment at MD Andersen and has urged me to go there as well.

here's more info from my path:

0.6mm thickness, no ulceration, no mitotic figures seen.

 

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speedrider's picture
Replies 2
Last reply 4/15/2017 - 9:31am
Replies by: Anonymous

I was diagnosed with Melanoma in situ under my left thumb nail. I went to my PCP August 30th, 2016 and showed her my nail. It was brown along th right side of the nail. She said it was nothing. I then had an appointment with my dermatologist the next day Sept 1st for a full body check. She never said anyting about my nail, and I did not mention it because mt PCP said it was nothing. About a month later October, I decided to google to find out what vitimin I was defitiant in  to have brown nail, and was reading all about brown stripes on nail could be melanoma. I emailed my dermatologist to question this. She said I should come in and have a biopsy. They made me an appointment 2 weeks later  They diid the biopsy, and it was positive for melonoma In situ. She referred me to Moffitt. Moffitt looked at the pathology and agreed that it was In situ. I had my surgery January 6th. They removed the nail bed and skin grafted. I went back for the results of the pathology, and they said I still had In situ, and .6 mm malignant melonoma. I went back for second surgery, and they removed everything up to the knuckle.  they then said it was clear. I'm just wondering if the dermatologist had caught it September 1st instead of November 21st, if I could have had a better outcome. I can't bend the thumb anymore, and the surgeon said I probably will not get much movement back. Aso, is there any precautions I should take? I am now on 3 month checkups. Should I change dermatologists being that she did not catch this when she should have? It seems to me if you go to a dermatologist for a full body check, they should check everything.

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Anonymous's picture
Replies 10
Last reply 4/15/2017 - 4:36pm
Replies by: Spl25, Anonymous, CindyCo, miaka618

Has anyone on the boeard seen any (even somewhat reliable) evidence regarding marijuana use and immunotherapy or targeted therapy one way or the other? Most of the studies and theories deal with pain management and healing etc., but pot, like almost everything else, probably has some effect on the immune system, be it positive or negative. 

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/15/2017 - 3:56pm
Replies by: J.bun, AvaL, Enid Weiss, Anonymous

Dear All,

 

My diagnosis was just upgraded yesterday to a stage IIIC, after my second PET scan following sentinel lymph node biopsy (positive for melanoma).  Today I am at work and find that I am angry at every person who walks into the office.  Did this happen to you? Is it normal and does it pass? I can't afford to be in a front-lines smilng-to-customer job and get pissed off every time someone asks me a question! (And no - usually, I only get annoyed once in say, 15 encounters, and I hide my annoyance from myself better....)

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mom3girlsFL's picture
Replies 4
Last reply 4/16/2017 - 12:34pm
Replies by: UBContributor, Scooby123, Anonymous, Jamie1960

Hey all,

Just had another round of clean scans (CT chest and abdomen pelvis) which puts me at NED for 1 1/2 years while on Taf/Mek combo!  Had immediate response after recurring in lung and perinoteal nodes.

My question is...could mel "skip" the nodes and move to brain? I'm  only asking because for the past month or so I've  been experiencing light headedness, dizzy spells and being off balance. Cognitively I  feel fine.

Of course I  will share my concerns with onc, and I'm  sure he will order mri. Just wanted some opinions.

Thanks, as always, and keep up the fight!

Laurie

Do not fear tomorrow, God is already there.

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BitemeMel's picture
Replies 4
Last reply 4/15/2017 - 11:27am

Hello, 

After reading here, praying for many here, gaining hope, and learning so much, I can't believe I'm finally posting something after 2 years or so.

A little bit about us: I'm the wife of a great guy who also happens to be a stage 4 melanoma patient.We also have a 12 year old daughter :-)  He is 54 and we first discovered his primary on his scalp in 2012. Went through all the standard, SLNB and surgery, it had not spread at that time. (as far as anyone knew, right?) Decided against interfuron (no regrets there) and just went with regular checkups etc. Fast forward to the summer of 2015, my husband started not feeling well off and on and reported feeling weak. My active husband started spending more and more time lying down and became tired easily. Then started the stomach and gut pains. They discovered he was severely anemic, and after numerous tests, it was finally discovered that he had melanoma tumors in his intestine and some starting in his lungs. 

He was started on keytruda right away. Thank God, Keytruda for us has been a miracle.  Within 4 months, the intestinal tumors were undetectable...gone. The lung lesions took a bit longer but eventually also gone.  He has been NED for over a year and on keytruda now for 22 months. He has done very well on it, the side effects have been minimal and manageable. Fatigue, rash, cough, body aches...come and go, but that's been the worst of it.  We are blessed beyond measure.

Now, to my question. Lately, he has reported feeling more tired than usual and says he feels "anemic". Not as bad as before, but he recognizes the feeling. He also noticed on his most recent bloodwork labs that his red blood cell counts have gone down steadily for several months as well as his Feritin levels. Steadily declining. So, oncologist has ordered a PET scan (getting that tomororw) a bit earlier than planned--he wasn't due for his next one until June. If that comes back clear, as we pray it will, he said next step would be colonoscopy. I assume they are trying to rule out bleeding anywhere as causes of the anemia. When he was initially diagnosed as stage 4, the intestinal tumors were causing the anemia.

Ok finally the question. Obviously we are scared as to what's causing these anemia symptoms. It's hard to believe though, that after all these months of success on keytruda and a clean scan just 3 MONTHS ago, that he suddenly would have tumors again.  Does anyone know what else could possibly be causing him to become anemic again? Can it be a side effect of the keytruda? I read on a site that it could signal some kind of organ problems caused by the treatment. My husband has already been thinkng about going off of the keytruda at the 2 year mark. 

Also, does anyone know anything about maintenance dosing? Is this even done?  I'm wondering if he could do well to go on an every 6-week infusion instead of every 3 weeks. It's something we will definitely talk to his doctor about. I am scared to death of him going completely off keytruda but also scared of what it's doing to him long term. Thank you for listening. 

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Anonymous's picture
Replies 7
Last reply 4/15/2017 - 12:35am

I had a mole removed when i was 18 and it came back as pre-cancerous and was told all was good with just them removing it. Being 18 I did not ask questions and moved on with life. Now I am 38. I have a new spot on my back that itches like crazy. I can hardly reach the spot but from what I can feel it feels a lil crusty and slightly raised. I had my daughter look at it and just asked her to describe what it looks like. She stated its sort of brown with a black dot in the center. I asked her if it was round and she stated, no its just goofy. I didnt ask her anymore because i didnt want to worry her. I have an maternal aunt who had melanoma. I know i need to get this checked sooner than later but currently do not have healthcare insurance. Just wondering if itching is a symptom anyone has experienced. And if so did you wait or go in immediately and what was the outcome. I should have insurance in 30 days. Oh, one more detail that is odd. The area surrounding the mole goes numb and gets kind of tingly similar to what it feels like when your foot falls asleep. That area feels like a perfect square and covers like a 3x3 inch spot on my back and the mole is somewhere in that area. I had surgery on my shoulder 1 year ago and thought it may be related to that but when i mentioned it to my surgeon he stated he felt it had nothing to do with my shoulder and sent me on my way. I had not discovered the mole on my back at that point. (The numbness started first, then the itching and then i felt the mole and had my daughter describe it to me.) Has anyone ever had that as an symptom either.I know that the only true answers can come from a doctor and a biposy just looking for some insight on what my next steps should be. Do i wait for insurance or try to get in sooner? How

WmJ

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messedmelanocytes's picture
Replies 5
Last reply 4/16/2017 - 8:40am
Replies by: Anonymous, messedmelanocytes, casagrayson, AliCat61

After having two biopsies show melanoma insitu in January, I had 3 more biopsies done. Two of these sites were new moles (less than a couple years old ) and one was many years old but had changed over the past few years. It is the newness and the changes that deemed these sites worthy of biopsy.

The pathoodgy report reads: Clark's Nevus, Compound Type ( so-called Dysplastic Nevus). This is for all 3 of the biopsies.

For one of the sites, the report says "this lesion extends to the lateral msrgin."

I have two questions I hoping someone might be able to answer.

1) why wasn't the degree of dyslasia identiifed? Does the absence of comment mean it is not severe?

2) my surgeon wants to take more area from the one that didn't have clear margins. Am I unwise to put that off a few monthsl? I have to return to the dermatologist in late July and I bet she will want additional biopsies, I would rather get this larger margin problem taken care of when those additional biopsies are done in Aug or Sept. The surgeon didn't seem to like that idea, but I am wondering if he is being overly cautious or am I being cavalier? It just seems that with a dysplastic nevi there is no cancer so is another 4 or 5 months of much significance?      

Appreciate your insight.

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MelOrama's picture
Replies 7
Last reply 4/15/2017 - 12:56am

Hi guys! I got "that" call on Thursday, April 6. I was dumbfounded. I had knee surgery the day before and was pretty groggy when the dermatologist called me.  I had gone in the previous week to have a mole looked at.  It was one that my boyfriend noticed on my back...she had grown rapidly. I say "she" because we named her. Bertha. 

 Unfortunately Bertha didn't hang around. The dermatologist, upon seeing it, immediately did a shave biopsy and left me with a pretty big crater.  To be honest, I really thought they were being cautious. I literally just came off of an 18 month fight with breast cancer. I was so happy to have my life back, be considered cancer free... again, I convinced myself they were just being cautious. 

The call was a gut punch. I'm not ready to do this $@&!? again.

My derm sent me to a melanoma specialist that I saw this past Monday. After visiting with me he wants me to see another specialist, reportedly top notch. He was booked until April 25,  but after hearing that, the first specialist called him and somehow got me in on Monday. 

This is all I know, and it's admittedly still a bit Greek to me.  After being diagnosed with breast cancer and hopping on the Internet and scaring the hell out of myself, I've kinda been doing he "internet down low." :-)

Here is what I know from path rpt:

Stage: 2Ta

Histology type: melanoma, spreading w/ nevoid featurers

clarks level: 4

Breslow: 1.3mm

growth phase: radial & vertical 

ulceration, satellitosis:  none

Mitotic index: <1

 After talking with the first specialist, there are some good things in the report. I will see the next specialist Monday.  I know for sure I will have surgery to remove the rest of the tumor, and do the whole thing.  The funniest part? I'm on crutches for another three weeks…so if they go under my arm, that will be comical!

In the mean time, I'm reading some stuff here and gaining lots of insight. Thank you for sharing your stories. 

Melissa

 

 

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sconover's picture
Replies 4
Last reply 4/15/2017 - 11:59am
Replies by: sconover, Anonymous, Jamie1960

Hi! I was first diagnosed with melanoma when I was 22 and have since had two other diagnoses. I'm trying to understand the challenges other people who have had melanoma face, as it can be difficult to know if you should book an emergency dermatology appointment right away or if a mole is probably fine.

What do you guys do to stay on top of it?

What do you wish were different or easier?

Susan Conover

susan.t.conover@gmail.com

(940) 882-0206

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Anonymous's picture
Anonymous
Replies 5
Last reply 4/16/2017 - 11:52am
Replies by: Anonymous, Spl25, MichelleRHG, Jamie1960

I am confirmed Stage 3a and I am currently NED. A possible trial offers HDI/IPI or Pembro. My oncologist hold me because I won't take HDI I disqualify myself. However the oncologist administering trial is not saying the same thing. 

I am taking this weekend to decide next steps. Ethically I struggle with possibly proceeding when there is a drug that should I be selected would refuse. 

I am interested in others thoughts

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mrspink's picture
Replies 7
Last reply 4/18/2017 - 1:40pm

My dad had two seperate craniotomy's in the last month. His last one being about 2.5 weeks ago. 

They tapered him off his brain swelling meds and then last Sunday he started acting very strange, not really responding to my mom, speaking some gibberish, and becoming aggresive. 

They did a follow up CAT scan that looked good so they started him back up on the swelling medication but said it could be days to level out. 

It's been 4 days. His speech and ability to talk are worse then it was before surgery, he's wandering off and becoming aggresive toward my mom when she stops him, and we just keep being told to wait it out. 

His current neursurgeon is on spring break. I don't feel like my mom is being agressive enough to get him in to someone else. 

I guess I'm asking if this is normal?? Is this his new normal?? Should I step in and try to get him into someone or is it really just a wait it out and see thing. 

I'm concerned my mom wont be able to handle this much longer. 

 

*trying to get all the names of the meds from my mom now. 

 

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