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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susanmcd's picture
Replies 4
Last reply 1/21/2019 - 7:22pm

Friends, I am hoping someone can share with me a good link or article that helps explains the Suv levels on a pet scan. Thanks

Susan Kennedy

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Hello beautiful people, I am new here although I have been eagerly reading your posts for the past three years and this forum has been a tremendous help to our fight, in many ways.

My husband's fight with melanoma began in 2014. We live in a Greek island and the sun appeared to only be a good friend here, sunscreen was  an unknown word for locals who want to fish and enjoy the sea. He had a mole on his back that started bleeding in 2014 and it was melanoma. Surgery followed, margins and nodes clear. In 2016 two in transit lymph nodes were removed. Started Yervoy, failed, Taf+Mek followed, worked for about a year and he is now on Keytruda for about 8 months . He is perfectly well, no side effects and stable- not NED.My question is: he has two small stable in transit  lymph nodes, the biggest of which (9 mm) has been exactly the same size since 2016. Could this mean it is inactive or just dead cells? Isn't it strange that it hasn't changed a bit for so long- never bigger, never smaller? 

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MelMel's picture
Replies 4
Last reply 1/24/2019 - 10:13am
Replies by: MelMel, STL Mike, Bubbles

I am looking for anyone to share their experience or knowledge about the steroid tapering and what I can expect during and after this process. I am not talking about 30-80 mg doses but much higher. I had a DILI (drug induced liver injury) following my second ipi/nivo combo infusion and have been on 160 mg prednisone and 3000 mg cellcept for more than a month. The liver enzymes have finally stablilized and tapering started however my oncologist wants to do weekly reductions but I have read some of the previous posts and patients stated 5 days or 3 days taper dose period. Some people stated they had a relapse in liver enzymes at certain point. Also, how long did it take for the body to return to somewhat near normal? I have read up to a year. I understand that we are all individual and unique in our responses to healing and such. And for those who had a similar unfortunate experience with combo theraphy, did you eventually return to nivo only or were you able to continue on ipi and nivo to complete the intial four immunotherapies? Any advice would be most welcome and greatly appreciated.

Melanie 

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sherricrim's picture
Replies 6
Last reply 1/22/2019 - 9:16pm

Hi, All.  I am Sherri.  I just got out of hospital today.  Had anal tumor removed (WLE) as well as left groin lymph nodes.  I still have drainage tube in (will be removed Weds).  Surgeon told me I was Stage 3 mucosal melanoma.  PET scan last Monday just showed enlarged left groin lymph nodes.  I am in Kansas City MO area, and there does not seem to be specialists here with expertise in this rare cancer.  From researching the scientific literature and talking to oncologist, I am aware that there is some hope with immunotherapy.  It will be a week or more before lab results regarding what kind of mutation I have (excuse any ignorance with terminology).  As surgeon told me he was not aware of clinical trials and oncologist confessed to not being familiar with mucosal melanoma besides the statistics, I think it may be up to me to search out best aftercare.  I have read (on old posts here) about how good Dana Farber is.  Any other suggestions?  Also, do I just call up, or do I need referral?  Any and all help would be greatly appreciated.    Thank you!  ~Sherri 

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Wicked Witch's picture
Replies 7
Last reply 1/25/2019 - 7:15pm

I received my first Opdivo infusion on Thursday, and within 30 seconds of the drip starting I became hot and flushed . . my chest tightened and I felt like I was getting SOB. They immediately stopped the drip and hit me with some Benadryl. I got super upset and started to cry, thinking I wasn't going to be able to get the treatment but the wonderful staff assured me to not worry. They began the drip again a little while later, but this time I was on a hourly drip as opposed to the half hour. I felt super tired the next day but am alright today. 

Have any of you ever had this happen?

What caused it?

Will this get worse?

Does this mean that Opdivo won't work for me?

Maybe I'm just super sensitive? I get a weird feeling and can taste it every time they do a saline flush, so maybe it's just me? Thank you all in advance for your insight and experiences. :)

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Julie in SoCal's picture
Replies 12
Last reply 1/20/2019 - 2:08pm

Good afternoon, friends!

Yesterday I had scans and saw the Rock Star doc and the news is that I remain NSLCS 3a and Melanoma 3c.  I only have the 3 small subQ Mel Mets in my elbow. So good all round.  Phew! 

So the plan is to try T-VEC.  I start next Wed.  RS Doc says that if it works it could clear out any of the remaining mel critters in my arm.  This is good news.  And if it doesn't work, I can always have them removed by surgery.  

Thanks friends for your encouragement, wisdom and love!!

Shalom,

Julie

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Scooby123's picture
Replies 2
Last reply 1/20/2019 - 11:43am

Hi my friends just a quick question for those who had brain tumours. After treatment if been clear for 2 years or more did your scans change from 3 to 6 months. Been for check today had a brain tumour 2015 been ok since touch wood. My concultant decided to change my scans from 3 to 6months.
Regards
Scooby ❤

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MMH's picture
Replies 5
Last reply 1/18/2019 - 8:12am

I had my first melanoma removed in August. It was unusual looking, pink and brown, almost like a pimple.  My dermatologist initially said let's watch it, I said no thanks let's remove it, and it turned out to be a spitzoid melanoma.  

I went in today due to a new spot on my back. Similarly odd, but not exactly the same look as the spitzoid.  Anyway, they told me it is a keratosis. I want to believe them because that is good news. With a diagnosis of keratosis, there is no option of biopsy, just freezing off.  Has anyone ever had a keratosis diagnosis that turned out to be a melanoma?  I really need to trust my doctors, but it is tough after the last time.     

MMH

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Amanda R's picture
Replies 4
Last reply 1/17/2019 - 12:10pm
Replies by: Janner, Amanda R

Hi, I apologize in advance if my story seems less than serious I am just in need of some counsel.  This past October I had a few skin biopsies because I was concerned about a few spots. I was ignorant to biopsies and really anything regarding dermatology procedures. I have since read more than I prob needed to as I have really frightened myself into the possibility that something could have been missed after reading others stories of getting a benign biopsy report only to find out it actually was not benign either with subsequent biopsy or progression.

So my number one concern right now (and please anyone weigh in if you have some wisdom for me) is of a spot that was partially punch biopsed on my abdomen. It had initially been diagnosed by a derm. (At yearly) A few years ago as a solar lentigo but what was concerning to me is when I felt it had changed. Well the doctor who did the punch biopsy used a 5mm punch on a (per his clinical notes) “6-7mm” spot. Meaning that he would have stitched up the remaining pigment/cells. The pathology report read no melanocytic proliferation, mild hyperplasia, no significant atypia, focal necrosis due to trauma (I had rubbed it) but no definitive diagnosis as to what the lesion actually was which was a bit odd to me. I am uncomfortable leaving the rest of the pigment in there in concern that there may have been cancer cells missed. I have contacted a specialist who said he can see me in April but I am so uncomfortable waiting another three months as it has already been 3 months since that biopsy.  

Can anyone advise me? To have the area completely cleaned out? Or would there be any point in that now, if something was left behind that was abnormal it would have already spread? Would re-excising that area cause more harm?  I know you are not medical professionals and again I apologize if this seems insignificant. Thank you

Amanda

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Dave61184's picture
Replies 12
Last reply 1/19/2019 - 8:31pm

Hello everyone.  Hope everyone doing well and keeping up the fight. Praying for everyone.

Not sure if you remember me but was diagnosed stage 1a July 2018. I had some biopsy’s done and my dermatologist says I’m fine I just had some moderate atypia one. “JUNCTIONAL AND LENTIGINOUS DYSPLASTIC NEVUS WITH MODERATE ATYPIA, LIMITED MARGINS FREE” dermatologist says we have clear margins and we are good.  

But finally got pathology and it has a Description that is bothering me cause I googled.

”The epidermis shows lentiginous and junctional melanocytic hyperplasia” .......I read that this can be used for melanoma  in Situ. There is more in description about it but this stood out.

no where on path talks about Situ and I would hope that the dermatologist know what he talking about.

i was wondering if anyone had this description before and knew about.  Was going to contact dermatologist but I think I’ve been driving him crazy with all the questions.

just don’t know I’m I’m looking into to much. I just know the mental mind games is hard on me. 

Thanks for looking. Prayers for all.

David

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I'm already on 300mg of fentanyl with available oxycodone 30mg for overflow every 4 hr as needed. Well for awhile it was finally enough the pain was finally being managed and I could come and have a semi-normal day. Well my pain has gotten a lot worse this week and I just had a CT scan and x-rays so I know I have progressed but not in those areas. But my pain has been back to a 4-6 almost all day this entire week.

I have already been approved for an intercostal pain pump which is basically my next step if I want any other form of relief. And before anyone suggests it, yes I am an active cannabis user already, it doesn't come close to touching what I got. It helps relax amonst other things but pain not anymore, my bones are just too eaten up.

So, my question is experience? Anyone else on the board have this procedure and were you happy with the results? Any reasons that I shouldn't get it?

I'm starting to get this strange feeling that there may not be an exhorbarant amount of time left and I definitely want to at least be comfortable enough to enjoy time with my family.

- - - Never Giving Up No Matter How Hard This Gets - - -

Stage I Survivor Since Aug 2009, Stage IV Warrior Since Apr 2017, #AldrichStrong Since Apr 1983

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chrispl1974's picture
Replies 10
Last reply 1/23/2019 - 2:19pm
Replies by: chrispl1974, jbronicki, Wicked Witch, Anonymous, Joycem, Johnjk04

Dear all,

As you can imagine , I am devastased. I went to my dertamologist here in Germany and he was suspicious from the beginning and cut the thing out my right thigh (black spot about 6mm in diameter and slightly raised) and sent it in for tests. Results show the following (translated from German)

Location, Right thigh, patient male 44 years old.

1. SUBTYP: Nodular melanoma
2. CLARK LEVEL: III
3.  BRESLOW THICKNESS : 1,6 mm. 
4. Growth: Vertikal
5. MITOTIC RARE 1 per mm²
6. IMMUN RESPONE : None 
7. ULCERATION : None

RESULT CLASSIFICATION --- pT2a      R0

As you can imagine , I have been reading like crazy. next week I will get further tests in the hospital and they will check the Lymph nodes and beyond.

The dermatologist told me that the MIOTIC Rate of 1 per mm2 is a good sign.

What are my chances that the nothing has spread and wont have nodes or organs affected  ?

Thanks for your suggestions. Stories of others with a similar initial diagnosis are also very much appreciated.

Love

Chris


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GeoTony's picture
Replies 9
Last reply 1/17/2019 - 6:34pm

Hi Ratties

I've been offered the opportunity to participate in the clinical trial below, Phase 1/2, involving Interleukin 8 and Nivolumab, the theory being that a reduction in IL-8 will improve the Nivo efficiency.

https://clinicaltrials.gov/ct2/show/NCT03400332

If anyone out there has any experience of this trial or insights/thoughts I'd love to hear them.

 

Thanks

 

Tony

 

 

Tony -  IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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I noticed a single vertical streak on my right big toe on November 6.

It was very noticeable and unusual so I googled "vertical line on big toe" and got hits for splinter hemorrhagen, melanonychia, and subungual melanoma.

I checked on splinter hemorrhages and it did not fit. No known trauma to my right foot or toe nail that I recall. No change in usual habits in activity to indicate trauma and the light black thin line has not grown out at all in the past 3 months and 10 days.

Looked at melanonychia and subungual melanoma. The line seems to be darkening and getting a bit wider but not by much.

I have a referral to a specialist but my worry is being misdiagnosed because all the research literature I've accessed is based on advanced cases and the presentation of the melanonychia is significantly different in size and darkness.

In any case, has anyone been diagnosed with subungual melanoma at its very earliest stages?

The line on my nail is light black and vertical right in the middle of my big toenail. It is about 1/4 of a mm in width and runs the full length of my toenail from the back of the nail plate closest to the front edge of toe.

So far two GPs have seen it: one has not seen anything like it before and the other is of the mind that it is nothing to worry about.

Maybe she is right and I am spending too much time on something that is harmless?

It would be nice if this forum had the capacity to upload pics so we could have a visual reference for comparison.

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lkb's picture
Replies 1
Last reply 1/16/2019 - 9:58am
Replies by: BrianP

I'm about to start the drug trial linked below for an intralesional with immunotherapy. I think I'm getting excellent care and I have immense respect and appreciation for my doctors. Just wondering how I should feel about one of them having disclosed a financial interest in the trial. Thank you in advance for weighing in.

https://www.ncbi.nlm.nih.gov/pubmed/29064334

October 2017 primary scalp WLE; SLNB; partial neck dissection (PND). July 2018 recurrence in neck. August 2018 second PND. September 2018 started Nivo. December 2018 SRS for brain met.

 

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