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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jbronicki's picture
Replies 5
Last reply 6/9/2017 - 6:53pm

I'm going to take my own advice that I give others, that it never hurts to post good news for our community, but I do it in honor of Josh.  Josh is literally the reason I'm here on this board, when my husband was first biopsied at his regular dermatologist, there was a comment in the pathology report he handed me that Saturday night he told me he had Melanoma and the initial report said possible Primary Dermal Melanoma (by the way, our oncologist at MD Anderson won't talk about that!).  Everything else on the pathology report was horrible so I totally held on to the one ray of hope.  So of course I googled it and up popped Josh's comment from 2011 and I clicked on it and landed me here on this forum.  I needed any hope I could get and that came in the form of Josh.  

It's so ridiculous that I get good news on the day that Josh leaves us.  I'm as angry as those who posted  I will honor him by running with these results and living each day that we have.  

I just spoke with Dr. Amaria and my husband John's scans were clear (CT head, chest, and abdomen).  It's been a year since his last scan so I was convinced everything was going to be bad (and he's had headaches lately, we forget that you can have a headache and it's not a tumor!) and had multiple panic attacks this week, but she quickly said all looks good.  That puts us at 3.5 years NED.  

Thank you Josh.  I'm so sorry for your kids, wife and family, they lost so much.  Because of what happened and your MPIP friendship, I'm hoping our family can run with melanoma NED for a while, need to drop off the board for now. I love all of you dearly and hope for nothing but good news for all and forever.  Semper Fi Josh and godspeed.

Jackie

 

Jackie <3

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(I am putting this post out for the hopeful reply by Janner, as I greatly respect this person's opinions on the matter of biopsies and approach to diagnoses.)

I went in to see a new dermatologist for what felt like mild rugburn on the skin along the neck and shoulders, with the sensation stretching down the backside on occasion. (I had prickly heat/heat rash since I was a kid, and even now, at 34, my skin abhors heat and humidity.) The nurse practitioner who saw me suggested possible Grover's Disease, as there was no rash or redness. I asked her to take a look at my back and see if any moles there looked suspect. I have a few there, perhaps 5-10 at least, and it was something I requested pretty much on the spur of the moment, not because of any pain, itch, bleeding, or suspicion of melanoma. I do not sunbathe, rarely sunburn, never been to a sun tanning bed (see no use to them), and have, roughly 15-25 moles on my body. Possibly more, never counted them in full. And there is no history of skin cancer or melanoma on either parents' side of the family, nor for myself.

She saw one that looked atypical to her, and suggested a biopsy. I figured, "Why not", and had it done. It was a shave biopsy. The nurse didn't seem hugely worried about it, and only suggested it in passing, or so it seemed.

 

Four days later I get a phone call informing me that the report came back with abnormal cells and that excision with stitches would be needed. "That escalated quickly," I thought. Of course, as I have generalized anxiety, this didn't do much to make my days easier and put me in a bit of a mental tailspin, as it were. Naturally, I spent a week doing massive amounts of research, and ultimately decided that I needed a copy of the pathology report to make a determination or myself. So here is the report, in full:

DIAGNOSIS:

LOWER BACK LEFT OF MIDLINE:

      MODERATELY DYSPLATIC COMPOUND MELANOCYTIC, EXTENDING TO THE PERIPHERAL EDGE

Gross Description: The specimen received in formalin labeled with patient's name and as "lower back left of midline" consists of skin measuring 0.5 x 0.5 x 0.1 cm. ES, 2y / 1bs 

 

Microscopic Description:

Sections demonstrate skin with single cells and nests of moderately atypical melanocytes which bridge adjacent rete ridges. Within the dermis there is papillary dermal fibroplasia and an inflammatory host response. A dermal component of the nevus is present.

 

That's all of it. I spent a bit of time learning the terminolgy, such as fibroplasia meaning scarring, I think, but the papillary dermal suggests scarring just under the epidermis. Am I correct? Thus the mole did not likely extend far beneath the upper dermal layers? The biopsy was, to me, a disappointingly brief 0.1cm, when I expected something more akin to the usual 0.2cm. Thus leaving me with the wonder if 0.1cm would have made the difference.

Also I am slightly confused as to the inflammatory host response part. Not sure what that means, unless it is referencing trauma from the biopsy, or to the dye(s) used. And what in the world does ES, 2y / 1bs mean? Should I buy a vowel, or try and solve the puzzle?
 

As for the excision, I am of the research-driven understanding (read way too many published papers on NCBI) that very few mild and/or moderate dysplatic moles turn cancerous, roughly 1 in 10,000. I prefer to keep it more scientific and retain my worries in the realm of probability, which suggests I have a 1-2% chance of the remaining abnormal cells doing something naughty. The mole that was removed has been there a long time, easily 10 years, perhaps even as far back as late adolesence, and I did not see any notable changes in the mole in that time. So I wonder if the excision is going to offer anything more than a clear margin.

This brings me to my main concern. The excision. I have a deep worry that they will want a WLE, which to me seems highly unnecessary, with a small conservative excision requiring 2, maybe 3 stitches being all that's needed. But does this report suggest a need for excision, or can the biopsy site be watched closely for 12 months to see if pigmentation arises? At which point the excision can be done. Or does waiting for something make the excision more laborous as the cells might go deeper than originally? This is where I am puzzled. And finding 5 dermatologists who agree on anything or offer a uniform guideline is like teaching a polar bear to juggle typewriters.

My mother is dead set against the excision, arguing it is completely unnecessary. I am on the fence, as it were, so I am looking for outside opinions.

(Sorry for the breadth of this topic. Brevity was never my strongest attribute.)

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RitysMom's picture
Replies 5
Last reply 6/8/2017 - 9:15pm

I am overwhelmed right now...Kristine had an MRI on her spine on Tue, just saw the radiation oncologist. Four tumors on the spine in the thoracic region. She's deteriorating quickly from numbness on Monday to now experiencing a lot of pain and unable to walk without help. The radiation onc is going to do one high dose of radiation tomorrow on the one tumor he believes is causing the most issues. But...he said he spoke to her local onc (not a mel specialist) and they both feel that immunotherapy will not help her (why?) and that she needs to start making end of life decisions. He actually said she is unable to be cured. She is scheduled to begin immunotherapy on 6/28 at MD Anderson. My son-in-law has left a msg for her dr there, but he's out til Monday. I don't know what to do! Kristine is in Foley, Alabama. I'm in Southern California. She's flying out here on Tuesday to spend a week with us before our whole family goes to Hawaii for a week. The dr said she should continue with her travel plans to make the most of her time left.

Can she do taf/mek again?

Any help would be appreciated!

Cindy 

Mom of the beautiful Kristine

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ReallyAgain's picture
Replies 8
Last reply 6/10/2017 - 2:40pm

Quaking 5 day headache, saw the Doc, wants to try steriods for one day.  Doc says the steriods can counter act the effectivness of Opdivo.  So far we have had one treatment, a cocktail mix of Opdivo and Yervoy. No side effects for the first two weeks then BAM! Nailed with this 5 day headache.  Has anyone else delt with this?

 

Thanks in advance for any thoughts!

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In the coming days I will attempt to post abstracts that relate to "novel therapies" and new combo's in melanoma treatment.  This first one has a bit of a retrospective in melanoma treatments as an intro.  

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-pembro-plus-entinostat.html  

As I conclude in the post:  "....as much as I push for those in need of care....I will forever push in honor of those who fought even harder than the rest of us.  This one's for Joshie."

celeste

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Replies by: magnus31, TP35, Patrisa, geriakt

Hi all,

I have recently acquainted a young Ukrainian couple whose husband is currently fighting against stage IV melanoma. As the Ukraine health system does not accommodate for any treatment or clinical trials for patients in this stage of the disease, the couple is now desperately looking for any sort of treatment option or clinical trial abroad which could accept them.

Financing is an issue here as the couple woudn't be able to afford to bear the cost of current immunotherapy treatments like Ipi/Nivo/Pembro.

Please all would you know whether skin cancer trials in the US, Canada or elsewhere are exclusively reserved for tax-paying nationals or whether any ongoing skin cancer trials would accept their participation?

Any ideas warmly welcome at this point.

 

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Scooby123's picture
Replies 6
Last reply 6/9/2017 - 2:15pm

Hi all, Can you please give me a time scale on waiting for pet scan results. I had mine on 25/05/2017 not got results back as yet. I have called nurse yesterday not heard from her as yet. 2 weeks now .My next appointment and scans will be August but this scan was ordered due to chest lymph nodes up .

Scooby x

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adriana cooper's picture
Replies 5
Last reply 6/8/2017 - 3:16pm

First our thoughts and prayers are with all of you during these difficult times for many on here. It has been challenging emotionally for me with all that has been going that I have not posted much recently. Although we have been extremely fortunate to be able take a few steps back from that horrible edge that we were very near, my inner voice (as much as I try to ignore it and push it down) asks daily, is today the day that the other shoe is going to drop and we return to that cliff edge? We do still have ongoing issues but are coping. I remind myself one day at a time. Live life. Make fond memories. 

We will again be attending the symposium in Seattle on Saturday, although only in the AM as Adriana crosses more bucket list items off (and creating others,) getting to see her son graduate from HS in the afternoon. BTW she has just past 5yrs since first diagnosis, 3 years stage IV. Please introduce yourselves to us if you are there. We look kind of like this although Adriana has no hair now.

 https://drive.google.com/file/d/0B3UCziLUFYcHUFRxMzE2eHNuX00/view?usp=sh...

Also we will be in Los Angeles June 13-20 for a vacation/grad present/honeymoon get away, staying near Disney but traveling all about seeing the sights (any suggestions). Coffee anyone maybe? Jen-Snow White? Send a email harborhits@gmail.com.

Best wishes strength and peace to all on here. 

Adriana

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jennis3b's picture
Replies 5
Last reply 6/8/2017 - 8:01pm
Replies by: MaPerny, jennis3b, Anonymous

I had my 6 month scans Monday after coming off of treatment. They found a few new things since the scans 3 months ago. They found a small lesion on my liver as well as small nodules in my left breast and right shoulder. They're being watched for my next scans. Doc says they're too small to do anything about now. Any advice?

Jenn

Stage 3b

http://thisgracelife.blogspot.com/2016/11/in-my-skin.html

"Fear may be what we feel, but brave is what we do." Ann Voskamp

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momof4boys's picture
Replies 22
Last reply 6/17/2017 - 5:15pm

https://www.afterlife.co/us/obituary-lombard-joshua-b-faillo-3557594. This breaks my heart to post this. RIP Josh.

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Shaneswife's picture
Replies 12
Last reply 6/8/2017 - 3:46pm

I'm so devastated. Shane had a DNR put in place. I understand why but it's so very painful to live through this. Knowing I can't call 911 for him if he stops breathing during a seizure breaks me inside. We now have a hospice doctor coming to the house to treat Shane and nurses daily providing care along with myself and family. Shane kicked the psw's out of his treatment plan as he was too uncomfortable with them. 

I lay awake at night and just wonder if we'll get through another day together. His PPS is 50% so I doubt there is much time left. 

 

Janis

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smiller's picture
Replies 11
Last reply 6/13/2017 - 10:27pm

 My husband made it through three treatments on the opdivo/yervoy combo.  Had to stop because of the side effects he was experiencing.  We are meeting with his doctor next Wednesday to discuss other options. He mentioned trying Keytruda or going ahead with opdivo alone.  Any help/suggestions will be helpful in making a decision.  By the way--the treatments that he had did make a difference in the size of the tumors--they all shrunk except adrenal glands and doctor said they still had the possibility of shrinking.

 I learn so much from this board--thanks to all who post. I rejoice when I read the good news of someone responding to their treatment and I am sad when someone has to post that treatment has to stop because it didn't help.

Thank you!

Jim's wife

 

 

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zfishberg's picture
Replies 8
Last reply 6/8/2017 - 5:48am

It's sadly that I have to post another sad note after Shane's wife one.

After the second ipi/ nivo infusion Greg started experiencing problems with walking, fatigue, falls.

we went to ER on Friday and after the MRI was performed , the doctors concluded that they can't help him in any way.

He is on home Hospice now with additional help from the Home Care agency staff.

It's very painful to observe the rapid deterioration in his mental and physical abilities.

 

 

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Michellebelle's picture
Replies 1
Last reply 6/7/2017 - 3:43pm
Replies by: FaithRun

Hello everyone, 

 

I recently went to the doctor for a suspicious mole. Unfortunately, it's on my face. It was very tiny, black, and almost looked like a white head (but was black). It was new, had just showed up sometime within the last year on my cheek. I went in as a precaution since skin cancer runs in my family (but not melanoma). The doctor said it was black and blue with an outline of brown. It was a normal circle shape, popped up like a pimple. I think it was 2mm. 

She told me it's a 50/50 chance for melanoma or just a blue navius. I had a melt down at the doctor. I'm 29, about to be 30 next week, and I can't believe it.

Right now I'm playing the waiting game, which I'm not doing very well. I keep thinking about how I had swollen glands in my neck a few weeks ago, and really scaring myself. 

I'm just curious if any one out there has had a similar mole. Mine doesn't look like a clean cut case of melanoma. It could be a blue navius. I'm praying it is. 

But in the meantime, I'll be praying for all of you. When something like this happens, you don't realize how lucky you have it. I've never realized how much I loved my face until they wanted to start possibly cutting it all up. I hope my results come back ok, and I won't ever return to this forum again, but in the meantime, I'm thinking of you all, and wishing you all strength. Just the possibility is devastating for me. 

 

Thinking of you guys

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