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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Coragirl's picture
Replies 4
Last reply 8/14/2018 - 5:25pm
Replies by: Coragirl, mandyjill, smiller

Hello, after too many stressful, delayed appointments at MDA my husband and I are looking into other options for his care.willing to travel but would prefer to be close to home. We have 4 kids and my husband travels for work as well. Can anyone recommend an oncologist in the Dallas Fort Worth area? I know of two, I would just appreciate personal experience of anybody has any. Thank you so much.

Amie Taylor

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Rncab218's picture
Replies 4
Last reply 8/14/2018 - 3:49pm
Replies by: KellyH, iskitwo, AMcReader

Hi,

posted a month ago when I was diagnosed with a local recurrence of melanome 9 years after initial diagnosis.  Had unknown primary, two large lymph nodes removed.  Did leukine for ten months, no further treatment.  Now have had local recurrence, left arm and still cannot decide if I should do Nivo, tested BRAF negative.  Spoke with three oncologists at two major center in NY.  One leans toward watch and wait with scans every six months, one recommends nivo for one year, the other one gave me information but not leaning either way, its my decision.  So, I ask, any of you have done this treatment?  How tolerable is it?  Any of the major possible side effects occur?  Have you remained disease free?  Thank you so much, I need to make this decision soon as its already been two months sicne my recurrence.

 

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Anonymous's picture
Anonymous
Replies 0

I was recently diagnosed with Stage 1 melanoma, atypical spitzoid.  The breslow depth was .6mm.  I am hoping to find others with Spitzoid Melanoma to better understand the behavior/prognosis/treatment for this specific type, since it sounds quite rare. 

I had a wide excision about ten days ago and the margins came back clear, but they did not do a SLNB and I worry that I should be pushing for this. 

Any advice would be apprecaited.  Thank you. 

 

 

Scared123

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Savymoo23's picture
Replies 6
Last reply 8/14/2018 - 4:57pm

Hello everyone, 

Just wanted to update y’all on my surgery that happened yesterday. They first started my injections of some sort of radiation stuff around my biopsy site to get a good look and see where the cancer has spread (lymph node wise). That took about an hour and a half. They found that the lymph nodes under my right arm pit were lighting up pretty bright in the imaging. 

They then look me upstairs for pre-op. They got my all jacked  up on drugs and I don’t even remember going into the OR room at that point. They did my SNB while I was under, then flipped me and took a good amount out of my back. I woke up feeling very sick and I threw up once and then got some more anti nausea meds. 

I am now at home recovering for the week. Having a hard time sleeping just on one side because it’s hurting my hips and back. 

Anywho, just wanted to keep y’all updated. I’ll have more answers on weather or not that lymph node is positive for cancer hopefully by the end of the week. 

P.S: I had a question? When do you get your staging? I have no idea what stage I am. Just curious. Thanks guys! 

Savannah Price

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Replies by: Kfred, Anonymous

Milagnant Melanoma

Histologic Type: Nodular

Thickness: AT LEAST 3.42 mm

Clarks Level:AT LEAST IV

Growth Phase:Vertical

Ulceration: Not Identified

Mitotic Rate-2-3/mm

Tumor  Infiltrating lymphosites-Non Brisk

Pathologic Stage- AT LEAST pT3a

Margins- extends to involve the base of the biopsy

Breslow depth -pathologic stage may require revision on the excision

all other catagories are listed as Not Identified.

Microscopic Descrition: Atypical melonocyctes are present within the epidermis and papillary and reticular dermis


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Anonymous's picture
Anonymous
Replies 6
Last reply 8/14/2018 - 9:32am
Replies by: lkb, Anonymous, SABKLYN, Edwin, KellyH, Rocco

First post here and, obviously, nervous. Otherwise I wouldn’t be here. I guess I’m just looking for support. Or, info. 

I have had a mole on my face for years. However, in the last several weeks, it has gotten larger. Well, more raised. It has always been slightly raised, but I noticed a few weeks back that it felt firmer and, well, taller. I didn’t think much of it, though. However, yesterday, I noticed it was darker and was leaking what seemed like serous fluid. Today, it is larger and has bled. It’s taken on a look of being almost a blood blister? It’s nuch darker and the area surrounding it is inflamed. I’ve not experienced any trauma to the area that I’m aware of. It’s painful and the pain radiates around my eye and I’ve had a headache on and off for days. I’m also nauseous and just feel icky and achy. Although, that could be from anything. 

I am an adult, but my family thinks I’m crazy for even thinking this is abnormal. When I mentioned seeing a doctor, they just said that I was overreacting. I called the doctor anyway and they were dismissive saying I likely scratched it. But, do you know how many times I’ve purposely messed with it in years past? It’s never looked like this or oozed, bled, or become raised. Do I need to be concerned? I tend to be a bit obsessive, I admit. But, something isn’t right. Can a melanoma happen this fast?

I am fair skinned with light eyes. I don’t know what a mole is or how it differs from a freckle. I have plenty of both, but not on my face. I’ve had serious sun burns before, but not recently. No history of melanoma in my family, I don’t think. But, my sun loving mother has has precancerous lesions and my maternal grandfather had some form of skin cancer. I don’t know if that matters...

Just looking for support. 

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Nick C's picture
Replies 1
Last reply 8/14/2018 - 11:50am
Replies by: Anonymous

I went a year and a half thru three different treatments with out any side effects. Then with one week to go before my last IPI treatment, they hit. Fevers, fatigue, numbness/tingling in hands and fingers, balance issues, weight lose (10 lbs.),liver enzymes off the chart and dirrahea.Most of these have resolved themselves. But because of the liver toxicity, we have decided to forego the the last IPI treatment. Recent scan showed some progression and some with no change. The next scan will, hopefully, determine if there is true progression or inflammation. We are now looking for a new trial. If none are available, we will consider radiation on a couple of the mets. Three of the four are just under the skin, with two protruding.

So for now we are in a holding pattern. Latest labs were the best in the last year and a half...everything is in the normal range. Go figure.

Wishing all of ou the best. Keep on fighting on.

Nick


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Anonymous's picture
Replies 14
Last reply 8/14/2018 - 4:20am
Replies by: FairRosa1, Edwin, Anonymous, lindanat, Pollards, Coragirl, lkb

Hello, I am in the UK and would like to ask a question. My husband had stage 0 melanoma removed from his leg two and half years ago. This year his health has been a bit off including a 7 week bout of cold/cough/flu type illness.

I keep an eye on him and use the Internet a lot for guidance. He’s had extensive blood tests to the point where the doctor told him I don’t know what is wrong with you. Basically they can’t find a reason for his low immunity and general malaise.

I have read about lymphoma but my husband has never discussed this with his doctor. He doesn’t have a lot of the lymphoma symptoms and I am careful not to put things to him that will mess with his head. The main impact of his stage 0 to him has been mental, the whole situation understandably messed with his head. At 50 years old for the first time in his life he was faced with something out of his control.

The reason for my post is he recently showed me a ‘spot’ under his arm. I carefully felt it and to me it feels like a lump under the skin about 1cm in size. Two days later he still refers to it as a spot which is slightly tender and he is waiting for it to go away...

I know there will be people out there who share my concerns and I would like to hear from you as he has asked me to respect his decision to wait for a week to see if it goes away. I feel bad now as I feel I have started to push him towards the thoughts that messed his head up last time.

thanks in advance for your help 

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lkb's picture
Replies 18
Last reply 8/14/2018 - 9:17am

I'm having a partial neck dissection/removing lymph nodes Tuesday. Any pre-op or post-op advice from anyone here?

 

Primary scalp lesion excised in October 2017; SLNB removed and revealed two positive nodes in neck. Stage IIIA. July 2018 scan shows five positive nodes in same neck location.

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kellylizzz's picture
Replies 23
Last reply 8/13/2018 - 6:16pm
Replies by: kellylizzz, Brittany1999, A, doragsda, Anonymous, kst, MelanomaMike, lkb, mbrrna, AN8

Here's some of the pathology report:

ADDENDUM from Dr. Walsh, 7/19/2018: Please see enclosed a copy of the
consultative report from University of California San Francisco in which
a diagnosis of MELANOMA OF 0.7 MM IN THICKNESS was issued. Please see
their report for a full synoptic. In view of the partial samplings the
level of invasion must be viewed as an estimate. Further surgical
therapy with appropriate margins is recommended.

CONSULTATION REPORT from Dr. Timothy McCalmont, 7/17/2018:
Diagnosis: Melanoma of 0.7 mm in thickness
Note: Three different partial punch biopsies have been evaluated jointly
as the basis for this consultation, and the findings in all are
generally similar. This highly unusual melanocytic proliferation shows
histopathologic findings of early amelanotic melanoma occurring in a
young adult patient. Immunostaining for p16 was included in our
assessment and demonstrates complete expression loss, and this finding
lends additional support to interpretation as melanoma.
Phosphohistone-H3 immunostaining (in combination with Melan-A)
demonstrates only partial Melan-A immunoreactivity and also demonstrates
that the mitotic index is extremely low, which is reflected in the brief
synoptic that follows.
Procedure: partial punch biopsy x 3
Microscopic tumor type: amelanotic melanoma
Breslow thickness: 0.7 mm
Ulceration: not detected
Margin: partial biopsies
Mitotic index: 0
Regression: not detected
Provisional pathologic staging (pTNM): pT1a

The first biopsy was taken June 14th, and the second two were taken July 2nd. Got sent to three pathology offices, the final one being UCSF, who diagnosed it as melanoma.

It's been changing a lot. Extremely itchy and expanding onto my ear and up my scalp. Every doctor who has seen it makes such perplexed sounds as they examine me.

I have surgery the 16th and 17th. They're cutting out as much as possible while keeping my ear on my head on the 16th, sending it to a pathologist to determine true thickness, then doing reconstruction with a skin graft from my thigh the 17th, and they'll cut more out the 17th if the pathologist determines that to be necessary.

What did y'all do while you waiting for surgery ? The biopsies had no ulceration, but it has started to bleed sometimes, especially on the back of my ear, is that ulceration? The texture is truly bizarre as well, over the whole lesion.

Here's an album which contains pictures of the very weird cancer on my head and how it's gotten scalier from June to August: https://imgur.com/a/stwhl1Y

And folks who have had large lesions like this....how was healing ?

Honestly I think it is thicker than the .7 the partial punches got measured as, because it's stinging more and more and has started to bleed and ooze in parts as you can see in the album, so I'm nervous. And I don't see how they can excise it if it's on my ear but not take my ear. Wouldn't leaving it be bad? But I want my ear....blah

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MelanomaMike's picture
Replies 10
Last reply 8/12/2018 - 2:37pm

Hello Family, well, combo#4 of Ipi & Nivo is rushing through my veins as we type {or read}, thank God cuz now we can focus on a date for my 1st CT Scan since i started ipi/nivo, and see if these damn Melanoma Taliban mofo's are still inside my lungs, plus im happy that my once "3 hour" infusion will be only a  "1 hour" infusion cuz im done with the Yervoy!!, {wheres my cert? wheres my cert?! hahah.. like you know, Yervoy is generaly given 4-times, then we will contiue the Opdivo till further notice...So far i feel ok, combo #3 had me feeling beat down 3 weeks ago! like right afterwards to!, took my Hydrocortisones and Advils and woke up the next day feeling fine...

Well folks, gotta go, i hope yer all feeling fine & keeping yer own side effects to a low roar, have a good weekend ok?...Love ya guys, Mike..

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Melissa M's picture
Replies 6
Last reply 8/13/2018 - 7:24pm

I wanted to share some good news (and hopefully give others some hope). Next week I will celebrate being one year cancer free! I've been reflecting on this journey a lot, and I am thankful for all of the support I've received from this community. I'm thankful for the excellent care I received from my team, and I plan to celebrate this milestone next week!

Wishing you all many milestones that bring joy and gratitude. :)

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/14/2018 - 12:59pm
Replies by: Anonymous, geenapec, AN8

Hello!

 I am a 38 year old female who recently had a full body check.   The doctor ound a 5mm lesion which has an atypical vascular pattern noted within, dermoscopically atypical, with question etiology. The doctor xompleted an excisional biospy in the office and sent for pathologhy.

Fast forward a week...dr calls and explains I will need more surgery.  The path came back as Atypical , abnormal Spitz.  In reading online I am overwhelmed and just loooking for some more info. 

Thanks  in advance for the help.

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Kfred's picture
Replies 10
Last reply 8/11/2018 - 7:25am

Hi everyone,

My husband has had a mole on the back of his arm for over 20 years. Never paid much attention to it. 2 weeks ago he show it to me and tells me it has grown a lump and is itching. I took one look at it and freaked! We made an appt to see a mohs derm and went in Monday 08/06/18. The Doctor took a sample and said that he would send it for pathology report. He also made it clear that it is deffinatley Melanoma and in his opinion he would not be able to peform the surgey himself and once we recieve the pathology report he would be referring us to an oncologist surgeon.We are waiting for the results of the report and are pretty scared! I sure wish the results would come in! If I knew how to post a pic I could show you why Derm says it is melanoma just by looking at it.

 

Thanks.

Karen


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Savymoo23's picture
Replies 9
Last reply 8/11/2018 - 5:45pm

Hey everyone, I just have to get this out there because I am struggling. I have such high anxiety that I can't sleep at night and I'm having such a hard time being a mom right now to my babies and it's breaking my heart.I have no patience and I'm so exhausted I can hardly do anything. I just carry such burdon with me right now. A positive thing though is my work rallied together and all donated vacation time so that I can take all next week off and my mother in law bought all brand new clothes for all the kids and new shoes. Sorry for the random rant, I just can't clear my head. Maybe a weekend by the river will help. Thanks for the vent guys heart

Savannah Price

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