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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Replies by: VinceMart

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 2
Last reply 1/17/2019 - 6:28am
Replies by: chrispl1974, 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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jennunicorn's picture
Replies 29
Last reply 1/17/2019 - 1:58am

Hey everyone! I wanted to report that my recent scans were borrrrrring! Still NED, a full year under my belt now, yay!

I hope everyone is enjoying their holiday season as much as one can in some situations. I spent 3 holiday seasons dealing with the scary uncertainty of whether or not it could be my last one. Now that I am a full year with NED status, I am feeling like I'll have quite a few more Christmas mornings in my future.

I say this to bring some hope to anyone who may need it at this time.

Sending lots of love and hugs to you all!

 

Merry Christmas!

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

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kannevans's picture
Replies 2
Last reply 1/17/2019 - 1:57am
Replies by: SOLE, WithinMySkin

Hello everyone, 

I got an MRI on my foot last Monday because I have so much scar tissue on the bottom of my foot from surgery it is hard to tell if anything is there. Well I called today to see if they got my results and she said I need to come in. The report said “Within the plantar soft tissues between the first and second digits there is cutaneous and subcutaneous T1 effacement with only intermediate STIR signal within this region. Diffuse enhancement is seen throughout this region. This extends dorsally between the first and second digits extending to the dorsal aspect of the proximal second digit. This is somewhat amorphous in its shape without clear margins. This all immediately underlies the cutaneous market placed in the plantar aspect of the foot. No definitive wound. The flexor and extensor tendons are unremarkable and appear uninvolved. The musculature of the forefoot is within normal limits.”

i have an appointment Friday morning but if someone can give me any kind of insight I would appreciate it. If the melanoma did come back will I have to go through surgery again when I’m already on treatment? 

Thank you in advance!!!!

kris 

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GeoTony's picture
Replies 2
Last reply 1/16/2019 - 8:31pm
Replies by: Bubbles, NEDnotDead

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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MelanomaMike's picture
Replies 2
Last reply 1/16/2019 - 6:22pm
Replies by: lkb, iskitwo

Hi Family, hope everyones feeling good or atleast "decent", as for me im ok, healing up still from lung surgery back Dec 17th 2018, and i mean on the "Inside", my incision areas are healed already but the insides are still weak, chest wall is healing slowly, for when i cough, the rear incision of my chest {towards my back} kinda bubbles out, apparently due to chest wall weakness, tissues still need to mend, muscles etc. When it first occured i freaked only to be told by my surgeon that its normal for the few that it happens to {just my luck}...other then that no pain just weird sensations, nerve tingles and still a little "gurgling" in my lung but its going away a lil everyday...

 My only REAL worry about everything is, my employer has been paying my Kaiser since 2003 and since iv been on SSDI I wanted to take it of his caring, loyal hands because im now on Medi Cal {LA Care here in Los Angeles area} which alows me to choose Kaiser wich is fabulous so i can keep my same Medical Team. Im just kinda scared about the whole transition because my next infusion is Jan 15th with other appointments soon after, apparently i get a 1week grace period that has to occure when my paid Work Ins. has stopped to when MediCal takes over, 1 week is for folks like us with advanced cancer {stage 3 and 4} normally its a 3 week or 1 month wait period for "abled bodies" haha...Monday ill call to see if its cancelled "officially" so i can start to process...Nerve racking! it`ll work out, iv always been a worry wart...Well guys, take good care, happy Saturday, i feel up to doing some woodworking today! my latest passion of just about 4 years now...Love ya guys...

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rinzula83's picture
Replies 5
Last reply 1/16/2019 - 3:40pm

Im a freckled blue eyed redheaded stepchild, and I have melanoma. Unfortunatly I can not find one single article or survivor story about managing melanoma AND having freckles. You would think there would be a managing melanoma with freckles article or some scholarly article about how to access it or how to not go crazy when your covered in freckles and 20% of them are activly trying to kill you. What will keep me from begging my dermatoligist from cutting them all off? I have taken good photos of each one before biopsy and made a 8x10 of all the ones that were severe or insitu, and i keep it handy, but they look nearly identical to so many freckles that i have all over my body that it is disconserting. any body that finds an article or success story please share it, i have spent hours reading and i can not find one. Thanks 

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SteveR13's picture
Replies 13
Last reply 1/16/2019 - 3:12pm

Hi All,

 

I was diagnosed stage 1b a couple of months ago. I was 1.9mm non ulcerated with a Clark 3 and Mitiotic rate of 6. I went to the dermatologist who decided to do my WLE on the spot. Before I left he suggested I see an oncologist so I made an appointment. The oncologist said the results from the WLE came back clean however based on the stage and mitiotic rate a SLNB would be necessary to determine if it has spread. I got a surgeon recommended and booked the procedure. When I was coming around from anesthesia the surgeon told me nothing lit up and he wasn’t able to get a lymph node. I only write this because after making an appointment with my oncologist to see what happens now I went home and researched online why they couldn’t get one and what that means. I found nothing. I couldn’t believe it was only me that had this issue. After seeing my oncologist it seems that sometimes when they do the WLE first it can change the flow or mapping to the lymph node and make it so the radioactive dye doesn’t get there. Hope this helps someone. Next order for me is a PET scan which Im hoping will help me determine if I’m stage 3 or clean.

Steve

Steve 3b

 

"The key is not to attend your funeral until the day of your funeral"  

 Not sure you coined the phrase but it helped me.

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dmarie's picture
Replies 2
Last reply 1/16/2019 - 2:06pm
Replies by: dmarie, WithinMySkin

My husband and I just returned home from an ultrasound that diagnosed "extensive DVT through left lower extremity" and extends to the abdomen (iliac). The plan is to do sub-q injections 2x daily for 2 weeks to take care of it. The risk is that he had Gamma Knife done on three lesions in July (and WBR in February '18), so they assume that the risk of another brain bleed is not too big. (It is still a risk, however, so IF he goes forward with the injections of the anti-coagulant we will have to very watchful of any neurologic issues). 

The alternative is to use compression socks (and an ace bandage on the thigh) and take Tylenol / IB to manage pain. 

Has anyone else had a situation similar to this? Any thoughts on what I need to be asking or what I / we need to consider?

A bit of background - Stage 4, dx 8/17 becuase of a brain bleed/craniotomy; WBR 2/18; ipi/nivo; bladder tumor surgery 5/18; another brain bleed 7/18 (found DVT and inserted an IVC Filter); Gamma Knife 2 weeks later (7/18); brain swelling / edema caused aphasia 8/18 (could be brain radiation necrosis - no biopsy done to dx for sure) - now has some speech and cognition deficits. (He just turned 50). 

Thank you. Diane

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lgonzalz356's picture
Replies 3
Last reply 1/16/2019 - 2:06pm

Hi y'all! I'm new here and this is my first post. I had a shave biopsy of a mole on my stomach done two weeks ago and just found out it was a dysplastic nevus. The nurse said it was benign but had abnormal cells...huh? I'm confused. Should I be concerned? She said I need to come back in so that the PA can biopsy more to make sure they got all the abnormal cells. Will this be an excision this time do you think? I was diagnosed with melanoma in situ on my forearm the beginning of Nov. and had that excised with clear margins thank goodness. This is all so new to me and I'm feeling pretty overwhelmed right now and kicking myself for not taking better care of my skin when I was younger. :(

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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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Happygal's picture
Replies 15
Last reply 1/16/2019 - 12:09pm

Hello, I recently finished 1 year of Opdivo. Thought everything was going great. They did a base scan to start for after medication and found multiple spots on my liver and lungs.... Completely surprised me. I had nothing on my last scan in April, had no side effects whatsoever during treatment. They did a biopsy on my liver and found out yesterday that it is melanoma again... Inoperable and incurable. I will be getting an MRI on my brain next week to make sure it isn't there also. I will then be starting the Yervoy/Opdivo regimen.
I am at a loss on how to feel about all of this. I have changed my diet. I am so scared

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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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Summer S.'s picture
Replies 9
Last reply 1/16/2019 - 5:08am

Hello everyone, 

 

My mom is new to Zelboraf, it is known for the possibility of causing new skin malignancies including new melanomas. 

Where we live,  melanoma is extremely rare and dermatologists never experienced working with it. 

Thus, I am wondering what are the regular skin checks you guys do are like? How are they conducted? Are you self-examined or examined by a dermatologist? How often? And do you find it effective? 

((Especially for those of you who are on Z, or similar targeted therapy)) 

 

Thanks! 

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Hi all,

As the anesthesiolgist told me when I was about to have my WLE and SNB, "Melanoma doesn't care" (that [you] have never tanned or sunbathed), still, I am wondering how many other people have this same story.

I am now 37, but a year ago I had two separate, unrelated cancers at the same time -- thyroid cancer and melanoma.  Because my lesion was pink (amelanotic), it was missed initially when I went to see a dermatologist!  It then had 9 months to grow before I noticed it felt more raised and my husband insisted I call.

Anyway, all the details are in my profile, but in short: lesion on my upper left torso (an area normally covered by a shirt), .9 mm, Clark's level III/IV, non-ulcerated, mitotic rate of 2, negative sentinel node biopsy.

As someone who has struggled with my weight my whole life, I have been a very covered up person -- never worn a bikini.  Never tanned or sunbathed.  I am fair-skainned with reddish hair, but not unusually fair or red.  As a child growing up in Baltimore, I definitely had a few bad sunburns, and in my 20s I had a bad sunburn on my back while in Greece -- but in general, I can confidently say I am good about sun protection (I live in Seattle now).

If I can rant a minute longer, I just want to add that when I am feeling low, I sometimes feel like I got a sexy person's disease (bikini/beach/tanning beds), without having the advantage of having the fun.

So how many others are baffled by this diagnosis?  It must be a misconception I had that melanoma only strikes people that tanned and sunbathed.  

 

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