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.

Expand/ Collapse Topic
 
Replies By
View Topic
pattikella's picture
Replies 1
Last reply 9/5/2017 - 7:34pm
Replies by: Bubbles

I just found out that I have mucosal melanoma in my cervix.  My Dr. ordered chest x-rays and abdominal ct scan.  I have been reading, and it looks like this can spread to all parts of the body, including eyes, brain, arms, and legs.  Should I be checked all over?  Maybe I am over reacting, I don't know.  Also, what does the acronym NED mean?  I've seen it a few times on this site.

Thanks

 

Login or register to post replies.

adriana cooper's picture
Replies 21
Last reply 9/5/2017 - 5:48pm

Last night at about 8 PM my best friend, my wife, my world, left all of the pain, the medicine and all of the other nonsense in this earth behind. She was in the comfort of my arms around her, (her comforting me,) with our family at our side. Although, the fighter that Adriana is, it did not seem easy for her, I hope that I was able to keep any pain and discomfort in check for her and that she was only able to feel the immense love that I have for her.

I would like to thank the many people on here (Celeste, Maria, Samantha Stamps, Glen and Loretta Vangampler (Artie's parents), Connie and the many numerous others) as well as friends on other melanoma websites over they years for the support and guidance that you have provided us. It has been my pleasure and honor to care for and share the largest part of my life over too short of a time.

Live your lives to the fullest and don't take it for granted no matter what stage you are in. Educate yourselves and others so that you may survive this horrible disease. And may the researchers  please double their efforts to find a cure, and compassion for those that need a chance at the various trials when they have no other choice, everything to gain and nothing to loose.
Along with her son, brother and father that have gone before Adriana, may those that have left this world due to this disease before her welcome her and comfort her with their arms around her and guide her down the path to eternal happiness.

Adriana, I have a hole in my heart and emptiness in my life without you. I love you.

Best Wishes and Thanks to All
Rob Murphy- Best Friend and Husband to Adriana Cooper

https://www.melanoma.org/find-support/patient-community/patient-stories/...

Adriana

Login or register to post replies.

Shaneswife's picture
Replies 36
Last reply 9/5/2017 - 2:03pm

Shane left this world at 13:20 est. I'm beyond devasted. 

 

Janis

Login or register to post replies.

MK7's picture
Replies 4
Last reply 9/5/2017 - 9:50am
Replies by: MK7, Janner

It was suggested I put ATTN Janner/regulars as you are all so full of knowledge :) Anyways, was looking to see if anyone could help with "interpret" my pathology report. Long story short, I'm 30 now and had a mole biopsied when I was 20 when I casually asked at a derm appt if it looked ok, to which my derm said it was probably ok but would take it out anyway. At my follow-up he said I was good to go, so I assumed it wasn't bad (hey, I was 20 and didn't know to ask questions).

Fast forward to today, after having my kids I went for a skin check because I was concerned about one mole. Between my last two yearly checks my current derm biopsied 3 - two were mildly atypical and one was moderately atypical (which I had completely excised in July). So this all got me thinking about the one I had biopsied when I was 20 and if it had been moderately atypical I want it out. I got a copy of my path report (that derm who biopsied it is no longer in practice and it is too long ago to obtain the slide for my current derm to look at). I gave it to my current derm to look at and he said he wouldn't be able to tell if it was mild or moderate without the slide, but can pretty much "guarantee" if it had been severe my other derm would have removed it all. In the meantime he said we will keep an eye on the scar area (there is some pigment regrowth, but my derm is ok with that as long as it doesnt look "off" or go past the border of the scar).

I will also ask my derm at my appointment next year, but since my last appointment I've been wondering about the first path report, SPECIFICALLY the last sentence and if it means something else is going on/seems to be an immune response going on??? Here is the whole thing:

 

Dx: Melanocytic nevus, compound type, with focal architectural disorder

"There are melanocytes, singly and in nests, at the dermoepidermal junction, bridging between some nests, and concentric and lamellar fibroplasia in the papillary dermis. The epidermal component of the lesion extends laterally beyond the dermal component. Within the dermis there are nests of uniform melanocytic nevus cells. There is a superficial, perivascular, lymphohistiocytic inflammatory infiltrate with melanophages."

Not that I totally understand what it says, but the sounds of the last sentence makes me kinda just want to have my derm take the rest out anyway...Thanks everyone!! :) 

Login or register to post replies.

dmarie's picture
Replies 7
Last reply 9/5/2017 - 12:19am

My husband was recently diagnosed with metastic melanoma. Today is 2 weeks since the initial MRI showed "multiple lesions". 8/21 GP visit, followed by MRI and admission to hospital; 8/22 abdomenal, pelvic and chest CTs & MRI; 8/23 brain surgery to remove largest mass. 1cm cancerous mass surrounded by 3x4cm bloody cyst. They knew it was metastic because of scan images done day prior. 8/24 released from hospital; 8/25 neurosurgeon called with news from pathology that it was melanoma. 8/28 1st office visit with radiation oncologist who recommended "whole brain radiation" given that there are 13 lesions remaining, scattered in the brain. Tomorrow we meet with SCCA (Seattle Cancer Care Alliance) melanoma dr for second opinion and more information. 

What can I expect from this visit? This all seems to have happened so fast. But I wonder if we are not moving fast enough at the same time. 

He looks great and feels pretty good. He has some digestive issues - meds? tumors in liver? other reasons? His language and cognition were pretty much fully restored after the surgery. He is getting his ducks in a row (getting all financial and insurance information accessible to me, looking at meal plans (paleo mostly), selling his dirt bike and our RV as these are 'clutter' that we don't need at this time). I have been reading forums and getting information, and I think he has avoided learning how insideous this can be/is. (I have been grateful for this period of 'blissful ignorance'). But tomorrow will be our first experience with a Cancer Center, and we don't know what to expect. Any insight would be so appreciated. 

Login or register to post replies.

Anyone have any good info on these things?

Shannon B

Login or register to post replies.

Megara984's picture
Replies 1
Last reply 9/4/2017 - 8:01am
Replies by: Patina

Hey all. My husband just had round 3 of the Opdivo/Yervoy infusion... His persistent cough is getting  better and slowly going away but we now how the problem that he is overly phlegmy. Anyone else have this issue and any remedies for it. It's at the point where it's effecting his eating. Thanks. 

Login or register to post replies.

warreri's picture
Replies 9
Last reply 9/3/2017 - 8:22pm
Replies by: warreri, Bubbles, Anonymous, maryb-z, Ed Williams

Hey, last time I posted I was stage 2 and set to get a skin flap procedure done to do the WLE. Pet scans were coming back fine and the taf/mek combo did me wonders (but I now wonder if my inconsistent taking of those meds led to worse results later on). From the sentinel lymph node biopsy during the procedure they found a metastic tumor in one of my lymph nodes and the fat surrounding it. I had another round of radiation to address that. Now 6 months post surgery I have "in transit" lesions. I started Yervoy this past friday and hope that will be enough. Thankfully I have more of an incentive to hold myself accountable for receiving the treatment since it will be obvious if I don't. Does anyone else have experience with intransit lesions and have any advice to impart? I didn't know it was a thing until I read my drs notes. I'm dishearted by my personal experience with advancing stages even while receiving treatment (and reading of others doing the same on here). I really hope it doesn't spread further. 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 14
Last reply 9/3/2017 - 6:36pm
Replies by: Cjodonn, KatieB, Tra88, CatHar12, natasha, Anonymous, Janner, MichaelFL

I was diagnosed last year with 1a SSM on my back.  Breslow 0.33mm, no ulceration, one mitotic figure identified in dermis (mitotic rate listed as <1), because of that mitotic figure in the dermis vertical growth phase listed as present (early invasive vertical growth phase), Clark II (I know this is not used as much nowadays).  Had WLE and SLNB (I know it wasn't necessary with 0.33, but I pushed for it), results were clear.  I'm very worried about recurrance/metastasis down the road, because of the vertical growth phase invasiveness.  I don't have a good handle on my prognosis, because even though stage is 1a, Breslow is thin, etc.....it seems like of the thin melanomas, I'm in a high risk category because of VGP and dermal mitotic figure identified.  So, I'm really struggling with this.  What would my prognosis really be with this?

Login or register to post replies.

MelanomaMike's picture
Replies 5
Last reply 9/3/2017 - 1:30pm

Hi Y'all, well, i saw my Oncologist yesterday and i came to the decision {with her as well} to just do the damn surgery. Like ive stated in my introductory post when i first knocked on your door here at MRF, I was {and still am} so done with surgeries! my original personal plan was to do something different {Chemical Therapy, Imm Therapy etc. cuz obviously surgeries arnt doing the trick {tumors come back every 2 years on average} so, i thought do that. Then my last surgery point "opened up" my left leg shin area {i squatted down & it tore open} and just that alone would delay any therapy for atleast another month. So, i said screw it! this way the tumor is  taken out in a matter of "hours" versus a possible year with  Chemo/Imm approach. And of course the added benifit of knowing "exactly" what it is & what where up against if therapy "is" still needed {most likely}...i dread the surgery I really do! and thats what my whole fuss has been about!i would have already started Interferon or whatever if it wernt for tearing open my leg! maybe a sign from God? ya never know...Thanks for allowing me to share my update w/you and hope yer all doing good or atleast stable..love/respects Mike,,yes

Login or register to post replies.

nameisIce's picture
Replies 2
Last reply 9/3/2017 - 1:02pm
Replies by: nameisIce, Anonymous

In March 2017 I've noticed this mole , It's big circle Brown and rough ( smooth with lotion) I ignored it when I looked up "growing mole" on google and I found Dysplatic Nevi and Melanoma . I think as much as skin cancer so I ignored that part .

In April I'm not sure but I think it gotten a lil browner but the texture didn't change it doesn't hurt, bleed , ooze . Not hard. it can become flaky only if I scratch it (doesn't itch I just choose to scratch it) and when I apply lotion goes away

In May is when I got worried because I started feeling sick . Sick as in Hard breathing, Stabbing in my head kind of pains , a little bit of diarrhea, fatigue and etc. I went to a hospital , they done blood work and said my white blood cells, hemoglobin and my bilirubin were high but not to dangerous just something to look out for . And of course I told the doctor about the mole her words were "it doesn't look like cancer , usually something cancerous looks scary" but when I been reading people stories they've been told they have melanoma without warnings . But anyways around 1-2weeks later in the sickness I felt better and the only treatment I had was an IV

now in the ending of August/ beginning of  September things are different , I had almost the same symptoms without the diarrhea , fatigue and head pains . Now I'm having mild Chest/Back/Ribs pains (I did have shoulder and neck pains but went away ), Trouble breathing but it's like depending on what I do like laying flat on my back, laying sideways and sometimes standing up, I also experienced one swollen lymph node on the left side of my neck. Before all the main things happen I experience throat pain in the right side of my neck .. So I went the HOSPITAL again but this time they admitted me . I done blood works , EGK, Ultrasound and Chest x ray . Again Bilirubin was high and protein my liver ? But I didn't get those blood results back for some reason . They give me an CT scan cause it wasn't "serious enough" But the Egk ultrasound and chest x ray was clear . Is Ct scan the only way to find melanoma ? 

But they said it could be an infections or dehydration or blah . Which made me seem to think if it was an infection such as pneumonia can't you find that in the X-ray ? I didn't ask much questions cause I guess I'm a scared little 17year old and I trusted the doctors.

The only way I can get a dermatologist to do an biospy is if I get referred and my primary care really thinks it nothing just a "mole" even if it was an mole , It's a huge mole describe like "dysplatic Nevi" and i should still be referred.

Anyways my question is have anyone ever experienced my symptoms out of the blue and also have your melanoma diagnosis was found in a EGK. blood test, ultrasound , or x ray ? Or do I need an CT scan to determine this . Also could it just be Walking pneumonia even though it was found in the x Ray ?

Login or register to post replies.

Jac1211's picture
Replies 2
Last reply 9/3/2017 - 11:51am
Replies by: Jac1211, Janner

I was diagnosed with In situ in July on right leg. WLE and clear margins. Around the time of surgery I noticed a swollen tender lymph node in the groin. I had a small biopsy site that was infected near lymph and then my WLE got infected and got on antibiotics. Flash forward 6 weeks, I'm all healed but node is still swollen and no longer tender. They've now referred me to an oncologist for a PET scan. Trying to understand how this even happened! Especially given my pathology stated "early evolving melanoma in situ" all very scary and confusing.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 9/3/2017 - 11:23am
Replies by: Ed Williams

Hello everyone! I was diagnosed last week and I've done a lot of research but was hoping someone can make understanding my biopsy results a little easier. 

Malignant Melanoma

type: superficial spreading

depth of invasion: 0.95mm

ulceration: absent

mitotic rate: at least 1 per square mm

clarks level: IV

tumor infiltrating lymphocytes: focally brisk

regression: not identified

angiolymphatic and perineural invasion: not identified

microscopic satelites: not identified

margins: narrowly univolved

 

Login or register to post replies.

TinaW's picture
Replies 1
Last reply 9/3/2017 - 7:32am
Replies by: youngann

I'm not sure what that means, but my oncologist is sending me to an ENT dr to find out what is going on. It feels like I have a pill stuck in my throat, it's not painful, but is very uncomfortable if my throat gets dry. Does this sound familiar to anyone? I heard that interferon may have caused some issues, I was on it for a year.

Login or register to post replies.

jrtufo's picture
Replies 9
Last reply 9/3/2017 - 5:01am
Replies by: jrtufo, J.bun, Anonymous

Hi caring friends

I've been off of the vem/cobi combo for a week and I can't get the itching under control.  The severity of my rash is subsiding but no ammount of steriod cream, atavax, or zyrtec seems to help.  Oatmeal baths provide in-the-mommen relief, Arinca is good for about 30 minutes, but I can't sleep, can't sit still, pretty much going nutty with the itching.  Help!

Julie T

JulieT

Login or register to post replies.

Pages