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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AN8's picture
Replies 2
Last reply 8/15/2018 - 8:34pm

Any suggestions for sun protective clothing? I see various name brands such as high end Columbia and Patagonia ($$$) to Walmart brand called Vapor.  

As far as sunscreen, I use Blue Lizard and Mineral Republic (both available at Walmart). They are similar to applying zinc oxide ointment...really white and thickish, but you don't smell like sunscreen which is nice when you apply it every day.    Any other suggestions that don't break the bank?

Lastly, those with outdoor hobbies (mine and my daughter's - coaching competitive softball), do you give it up?  Continue with precaution?  Daughter is at increased risk because of me and the fact that she had a benign atypical spitzoid removed back in May. It will probably be the smart move to retire for me - alot of time in the sun on the weekends.  For her??  What is your advice to your kids who have not had melanoma, but share the same activities as you and look where you are?? Risk you life to live or don't live your life to save it?  Little dramatic but doesn't that sometimes feel like the question?

 

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Kfred's picture
Replies 8
Last reply 8/15/2018 - 11:09pm

My husbands surgey is Scheduled for in the morning 8/16/2018.

There are no surgical melanoma specialists in my area. Because the mass is fairly large, at least 3.45 mm and staging is at Least Pt3a, They feel it has to come out now and we should not wait to search for a specialist. I trust this surgeon but am wondering if we are making the right choice.

The pathology report came in this Monday. Dermotolgist had us in the surgeons office yesturday and surgey tomorrow. I like the aggressive approach they are taking, but it scares the hell out of me that they are moving that fast. Any suggestions? or at least positive thoughts for me!

Thanks,

Karen


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Bubbles's picture
Replies 7
Last reply 8/15/2018 - 10:50pm

Hey guys,

Hope you are all having as good a day as possible in your worlds.  Don't waste your time on this post if you are in a serious mood looking for real live melanoma answers.  However, if you want a little mental puzzle and break from that, while still learning about melanoma world, these may be for you!  I think neither of these reports are particularly useful in immediate outcomes for melanoma patients, but through them it may be affirming to:

1.  Know that melanoma research of all sorts continues.

2.  Weirdo's like myself search it out, review and post it.

3.  And while I don't think happiness will cure our conditions, it never hurts to smile!!!

For what it's worth:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/08/research-that-makes-you-scratch-your.html

Wishing you all my best!  C

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Savymoo23's picture
Replies 9
Last reply 8/15/2018 - 11:14pm

So my husband just told me this, when they removed some of my lymph nodes they were black. My surgeon said he’d never seen that before and wasn’t sure what it meant. Have any of you heard of this?? I tried looking it up and couldn’t find anything related. I thought I was very strange. 

Savannah Price

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Finn's picture
Replies 10
Last reply 8/15/2018 - 5:51pm

Just found out a week ago that I have Melanoma and I have been trying to sort out a referral to a surgical oncologist since through my HMO. I can't stand the waiting and also the fact that the medical group within my HMO does not actually have any suitable surgeons, so I will inevitably have to appeal their referral and hope they allow me to go out of network.

I have the pathology report from my dermatologist who did a shave biopsy of the mass. I have had this lump on my arm for probably 2-3 years and so I am quite concerned by the diagnosis. I had the lump looked at a couple years back and the dermotologist then thought it was a seborrheic keratosis. Since we thought it was benign, I left it alone. Fast forward to now, I saw another dermatologist and he also thought it was a SK, but since I had insurance we decided to have it removed and biopsied as it would be covered. 

The pathology report shows a nodular malignant melanoma with a Breslow thickness of at least 1.1mm, a mitotic rate of 2/mm2, and staging of at least pT2a. The margins were not clean and I have to see a surgeon to have the entire mass removed as well as have sentinel lymph node biopsy.

I am trying to be as practical as I can about everything and keep a one step at a time head on, but I am concerned as this lump has been on my arm for years misdiagnosed as a benign mass. Now I find out it is a melanoma and the most aggressive form. I worry it has already spread and the waiting for a referral is horribly frustrating when I just want the damn thing off my arm now.

I think for the most part I just needed to vent to people who can understand my plight. 

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Coragirl's picture
Replies 8
Last reply 8/15/2018 - 3:44pm

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 8
Last reply 8/14/2018 - 9:42pm

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 1
Last reply 8/15/2018 - 8:59pm
Replies by: Zap_

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 7
Last reply 8/15/2018 - 2:17pm

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 7
Last reply 8/15/2018 - 12:12pm

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 15
Last reply 8/15/2018 - 8:47pm

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 27
Last reply 8/15/2018 - 2:56am
Replies by: kellylizzz, Anonymous, Brittany1999, A, doragsda, 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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