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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MovingOn's picture
Replies 2
Last reply 9/19/2018 - 11:35am

I had a second batch of affected lymph nodes removed in late March of this year. Then my July 28th CT scans were interpreted by the radiologist as ‘likely metastasis’ around the same area (they are lymph nodes swollen to 1.7cm but still have the normal kidney bean shape rather than the rounded metastasis shape). My Oncologist thinks they are just infections and prescribed antibiotics for 10 days. Many of the inflamed areas went down but not the ones in the most concerning area. We are going to scan again at October 1st however, the previously inflamed areas have all puffed back up again because I finished the antibiotics 5 weeks ago. 

I’m at a loss regarding how to find out what these inflamed lymph nodes really are (recurring infection from Opdivo or melanoma recurrence)? 

Also, I feel like if my Oncologist can’t get things figured out (after 4+ months of this swelling) then I’m going to get a second opinion up in Los Angeles (2.5 hour car ride). 

2018 is a new year!

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Dave61184's picture
Replies 12
Last reply 9/19/2018 - 6:57pm

Hey all prayers for all.. I’ve been in a depressed haze (stuck inside due to hurricane) and I know I shouldn’t spend the day and night reading blogs post and everything under the sun. But is there any hope for 1aers all I see is bad outcomes. People having 1a then boom couple months/years stage 4. But anyways idk what I’m trying to say or think anymore. Hang in there all. Praying for everyone.

.3mm deep melanoma no ulceration no mitosis 

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 To all warriors,

      My husband Bill has had stage 4 acral lentiginous melanoma for over 5 years. His treatments have been vats surgery, TIL at NIH, ipi/ nivo trial, vats surgery, nivo alone, vats surgery and for the last almost three years a her-2 drug after Sloan Kettering discovered he had a high expression of the mutation. He just had scans last Monday and after being stable since the start of the drug he has two new lung nodules in the right lung that has had 3 vats surgeries!!! It’s so damn frustrating!!! They will do a biopsy this week so Sloan Kettering can do an analysis again. Because his platelets are around 85 for the last three months and his liver numbers are very high, we are extremely concerned about doing another her-2 drug combination that includes chemo. SOLE suggested cryotherapy and we’re seriously considering it. We live in the Washington DC area, but are very willing to travel if necessary. My husband feels great and in fact is playing 18 holes of golf today. Any advice is very welcome!! Thanks so much!!

Maureen

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Bubbles's picture
Replies 20
Last reply 9/19/2018 - 8:10am

Hey guys!  You have been such an amazing fountain of strength and support for me over these past weeks!  (Damn!  Weeks!!!)  You have no idea how much it means.  I've always said that melanoma (ALL cancer!!!!) sucks great big green hairy stinky wizard balls.  But the folks on this board have enough love and support and humor and courage to get us all through whatever we are dealing with.  So sorry for what Maureen and her husband and Jagstter are facing as well as the rest of you out there.  

Here's the latest on my crazy mess as of this am:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/09/lordy-lordy-lordy-what-bunch-of-gaum.html  

There is a small additional update to even that, in that they just removed my epidural.  Little scary to say good bye to pain control...but it is a necessary step toward getting rid of my other bells and whistles and heading home!!!

Thanks again to each and every one of you.  Your love is tangible.  It is real.  It helps.  Love, les

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MelanomaMike's picture
Replies 2
Last reply 9/15/2018 - 6:28pm
Replies by: MelanomaMike, bjeans

Why in the hell is Saturday Morning such a religious time for these Hodji idiots to post their crap? Well, atleast we know our higher ups, The Big Whigs, The Brass, The Shot Callers are on it, please guys, i feel invaded..Mike

Im Melanoma and my host is Mike..

www.covvha.net

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/23/2018 - 11:42pm

Hi All,

 

I was diagnosed in March with Stage 1a. .38 so it was just past in Situ. I am 36 and have 2 little kids. Wanted a 3rd but now thinking twice after my diagnosis. It’s been 6 months.

Has anyone had kids after a diagnosis? Would love to hear your thoughts. 

love to all! 

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Savymoo23's picture
Replies 6
Last reply 9/16/2018 - 8:22pm

Had CT done, wasn't the most fun that Ive had HAHA!

I see my oncologist next friday 09/21. I hate that I have to wait that long to talk about the scans but I'm sure they are all fine. Thanks for being here for me guys as always! Love y'all!!

Savannah Price

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/14/2018 - 11:23pm
Replies by: eric w, jennunicorn, Anonymous, MelanomaMike

Me in a nutshell...diagnosed with thin uneventful melanoma 11 years ago on mid lower back treated with WLE, at just about year 10 lump felt in groin.  Left groin lymph node dissection with one positive node in April 2016.  Completed one year Keytruda treatment on clinical trial.   Clear scans since...until yesterday wen diagnosed with widespread metastatic disease.  What do I do next?  I am waiting to hear back from UCSF, have been seen there in the past several times but was able to get Keytruda trial through my local onc so have been doing a combination of those two MD's.  

Is there somewhere else I should be seeking care?  I am in California.  I am so overwhelmed.  UCLA, City of Hope, Dr. Weber. MD Anderson?

Going for brain MRI later today.  It was clear in May but we will see as of now.  

Thank you in advance....prayers for all of you warriors.  This board has brought me much information and support over the past several years.  

 

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jagstter's picture
Replies 7
Last reply 9/18/2018 - 9:31am

I'm so glad to be back home, as of late, last night. Even being gone for just 4-5 days from my wife & kids is harder, these days. I'm sure many of you can relate!

That being true, I cannot say enough good things about the Team @ MAYO, Scottsdale AZ ... they are incredibly competent AND compassionate! Probably, it is the most comprehensive, multi-disciplined care I've ever received. Yes, the travel isn't particularly convenient but I know their medical expertise is what is required.

So ... I thought all was going well & according to the pre-op plan, Monday & Tuesday. Labs, samples, nuclear scan of the offending kidney, etc. Unfortunately, Wednesday afternoon's meetings w/ the Doctors yielded an unexpected & undesirable surprise - from lab results & assessment, they suspect cancer has spread to my intestines. Sheesh! Sometimes, I feel like it's all just a cruel game of dominoes :-(

Obviously, we're back to tissue & pathology. They have scheduled me to return, next week for a colonoscopy. At this point, they're keeping the nephrectomy on the schedule for the 25th, too but they clearly communicated the importance of prioritizing the instestinal diagnostic, 1st. If confirmed, it would change everything. I'm still a little numb, trying to process. Prayers appreciated!

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Finn's picture
Replies 13
Last reply 9/17/2018 - 2:55pm

I had my WLE and SLNB on the 5th. All went well - I have a probably 3 inch incision in my right shoulder and a 1 inch incision in my right armpit where they took one lymph node. My initial biopsy showed at least a T2B as it was at least 1.1 mm thick with 2 mitotic rate, nodular mm. The biopsies now came back with the lymph node was clean and the excision showed no more melanoma cells (which was bizarre as the first biopsy the margins were not clean so there should have been some cancer cells I would think). So I guess I am cancer free, though I don't feel it. Still dealing with pain from surgery and other malaises. 

The first couple days post-op were ok, I was in pain but I could take the edge off with pain meds. Then the pain increased exponentially. The incisions look fine - no sign of infection. The shoulder incision feels tight but it is a divit in my arm, deep enough. I am still fairly swollen in some places and I am very bruised. My entire upper arm (over/under) is covered in bruising. I have a very high pain tollerance and I never take pain medicine unless I have had a major surgery. The pain over the last 5 days has been agonising. Pain medicine has no effect, ice is not helping anymore, I am in pain whether I rest it in one spot or move it around. No narcotics are working so I don't see the point to taking them. I am thinking now it may be neuropathic pain and I may have to try to get my surgeon to recognise that so I can get a med that will help with that, but I also feel deep bone pain. I am not sure what the issue is. I know think a seroma has formed under the armpit incision. 

Anyone experience severe pain? What worked for you?

 

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Amy Green's picture
Replies 5
Last reply 9/13/2018 - 8:43pm
Replies by: Amy Green, Janner, doragsda

I'm a 29 year old female. Had a mole biopsied which came back positive for melanoma. I'm waiting on a call from the oncologist to know what comes next but hoping someone can look at this and tell me. Results below, thank you in advance!!

Malignant melanoma, superficial spreading type

Comment: Tumor Stage (pT) - T1bNxMx
Clark Level: IV
Below thickness: 1.0 mm
Radial (non-tumorigenic) growth phase - Present
Vertical (tumorigenic) growth phase - Not identified
Mitotic figures: 1/MM2
Ulceration: Not identified
Regression: Not identified
Vascular/lymphatic invasion: Not identified
Perineural invasion: Not identified
Microscopic satellitosis: Not identified
Tumor-infiltrating lymphocytes: Non-brisk
Associated melanocytic nevus: Not identified
Predominant cytology: Nevoid
Surgical margins: The margins are free of invasive of melanoma. The melanoma in-situ component extends to one lateral margin

ICD: D48.5
R/O: Neoplasm of Uncertain Behavior, Dysplastic Nevus
Morphology: Plaque

Present within the epidermis and dermis is a proliferation of atypical melanocytes. The dermal component displays small cell (nevoid) morphology. The epidermal atypical melanocytes are arranged in nests and single cells at the dermal-epidermal junction, and as solitary units above it. Obvious extension of the epidermal component beyond the dermal component is identified. Double immunohistochemical studies using Ki67/MART-1 reveal moderate proliferation index. Deeper sections have been examined.

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Dave61184's picture
Replies 6
Last reply 9/19/2018 - 10:31am

Hello prayers for all. I was diagnosed with stage 1a and needless to say very scared. Is there any such a thing as a happy ending as to everything I read post of 1a spreading and that scares me. I have had my wle and they stated I’m all clear but still feel like I’m missing something cause nothing else was offered by my dermatologist  and didn’t even get referred to an oncologist. Even my regular dr don’t seem concerned. Well anyways I guess I’m just scared of the unknown. Below is my original path info before wle. Everyone keep up the good fight!

HISTOLOGIC TYPE: SPITZOID BRESLOW'SDEPTH/MAXIMUMTUMORTHICKNESS: 0.3MM CLARK/ANATOMIC LEVEL: II
MARGINS
PERIPHERAL MARGINS: INVOLVED.
DEEP MARGIN: FREE. ULCERATION: ABSENT.
SATELLITOSIS: ABSENT
MITOTICINDEX: 0
LYMPHO-VASCULAR INVASION: ABSENT. NEUROTROPISM: ABSENT.
TUMOR-INFILTRATING LYMPHOCYTES: NON BRISK. TUMORREGRESSION: ABSENT. LYMPHNODES(IFAPPLICABLE): N/A
PATHOLOGIC STAGE (AJCC 8TH EDITION): PT1A, PNX, PMX
See melanoma table. After H and E review, a Melan-A stain was performed to highlight the melanocytes in this lesion. Controls stained appropriately. This melanoma exhibits an epithelioid cytomorphology; however the lesion asymmetric and poorly circumscribed with extensive pagetoid scatter across the entire lesion to all levels of the epidermis. With these features, this is interpreted as a superficially invasive melanoma with some spitzoid features. This case has also been reviewed by other dermatopathologists, Drs. Smith and Murphy who agree with the diagnosis.

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Anonymous's picture
Anonymous
Replies 6
Last reply 10/7/2018 - 10:14pm
Replies by: Anonymous, amlye, Janner, mandyjill

Hi there, 

I had my first mole check, which led to a biopsy and now I will be going in for another procedure (I believe a WLE). I have a question about my biopsy results, final diagnosis: severely atypical junctions melanocytic proliferation, which I know is not yet melanoma. There is a statement in the report that says it is “concerning for early evolving melanoma in situ, lentigo maligna type”. Does that statement change this to an in situ? Maybe it was so close they weren’t sure which to call it? I realize I’m very lucky with either situation and many here are facing more complicated diagnoses. I am trying not to worry too much, and so I’m staying away from he Internet (other than this forum) to find some answers. How concerning is this diagnosis? I’m thinking this one procedure and regular mole checks should be adequate after this? I am wondering if, even with clear margins after my WLE, is it possible for it to not be completely removed from my arm? Also, I’m wondering why a Mohs surgery is not the preferred treatment, is a WLE as effective? Thanks for your insight on this, I appreciate it. 

Amber Seely 

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Savymoo23's picture
Replies 12
Last reply 9/24/2018 - 8:13am

GAHHHHHH my stupid insurance denied my doctors request for a PET scan because I'm only stage 2B. BLAH. Looks like they are going to do CT scans with contrast? Does a CT even compair too a PET scan? I'm so frustrated.

Savannah Price

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MelanomaMike's picture
Replies 5
Last reply 10/3/2018 - 4:19pm

Hi Ya'll, just a quick note to update you all on our MRF brother Tex {Texmelanomex is his handle here} iv been buddies with him for quite some time  {as best we can for being 2k miles away from eachother!} , and i know alotta you's love him so, hes doing fine!  if you remember, back in like Late July, early August {2018}  his CT Scan {and i believe a PET} revealed NED!! his treatment was a success, PV-10 in combo with Pembro {PV10 for his neck tumor, Pembro for abdomen tumors} and its been great ever since! hes still doing the Pembro as a maintanence cuz its effective, i believe he just completed #16 last week.

So, if yer all wondering, hes just taking a "Mental" break  basking in the afterglow of a much needed NED report!..Hell come around soon, he knows damn well the fight is still in progress even though the enemy has retreated....So ya, good ol' Tex...hes good...Mike

Im Melanoma and my host is Mike..

www.covvha.net

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