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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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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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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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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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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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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Anonymous's picture
Anonymous
Replies 4
Last reply 1/15/2019 - 1:04pm
Replies by: Bubbles, caman

Considering the features of my Primary ive been fortunate it hasnt spread yet.  It will be 1 yr in April.  My Dr. told me today Immunotherapy only works in 40 percent of the patients.  Is that a true number?  I wonder if he meant 40 percent being cured rather than just prolonging life. 


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Foxinsnow's picture
Replies 4
Last reply 1/15/2019 - 7:43am

Hi,
I'm new here, I joined because I have a family history of melanoma and have all the risk factors (except previous personal melanoma) and I have a bunch of moles that have appeared or grown in the last two years. I want your advice on whether my recent derm appointment and maybe tips on how to approach long term monitoring of my many moles.

I just went to the dermatologist because of a few spots that grew very quickly. The dermatologist was super dismissive of my worries, and rebuffed my requests to have two moles biopsied, saying I just need to come in every three years for a check up, and I should wear hats, "especially blue ones to make my eyes pop" and then he circled some hats on a handout he had and handed it to me.

I was really insistent and asked why they weren't worried at all about something that grew 5x its size in less than a year, but he and the PA kept dismissing me. I also had another skin question that they just ignored.
I got them to cut off the vulvar one, though they only shaved it, and now I'm worried they won't even test it or something weird like that.

Was I being ridiculous to try to get a biopsy? I feel so worn down by doctors who treat me poorly, and I assume part of this is because I am a very young looking 30 year old woman.

Thanks,
Celeste

(side note, they were super surprised at my age and asked if it was true, and I said I probably look young because of my suspected Ehlers-Danlos Syndrome, and they immediately started asking me to show off how bendy my limbs are. I felt like I was a joke to them)

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caman's picture
Replies 2
Last reply 1/15/2019 - 10:02am
Replies by: caman, Bubbles

Has anyone seen this before?

https://www.sciencedaily.com/releases/2018/01/180108121641.htm

 

 

 

 


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Anonymous's picture
Anonymous
Replies 8
Last reply 1/15/2019 - 6:15pm

I haven't posted in a while but have been checking in occasional to see how my fellow Mel peeps are doing. Mostly just living life. It looks like after 8 months on opdivo (the last 4 of those being NED) melanoma has returned. My last 2  scans showed a  tumor that has gone from  2cm to 2.9cm   on my pelvic bone. Oncologist is recommending radiation of the area and continuing the opdivo treatments. If that doesn't knock it out then going to yervoy/opdivo. What should I expect with the radiation to the bone? long term side affects? I am sure that the radiologist oncologist will go over all this but just wondering if maybe someone who had first hand experience.
I am BRAF + but the doctor really acted like he wanted to wait and use that only if these things did knock it out. Wonder what other treatment option are out there?? 

Thanks,

Missy

 

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Replies by: ed williams

Hi everyone,

I got a bit more information from my path report just wondering if someone knew a bit more.

My nurse said it reached the reticular dermis but i dont understand how if it says in my report papillary dermis? I dont understand how if it was in radial growth phase and not vertical. Its so confusing.

I had my mole for nearly 10 years, will this affect the chances of it spreading and alao will regression mean it is more likely to come back?

Breslow: 0.4mm
Type: superficial spreading
Growth phase: radial
Invasion: papillary dermis
Mitotic rate: 0
Regression: present

I understand i am quite luck with the stage etc so feel okay about it just cant help these nagging worries.

Thank you

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cass1991's picture
Replies 1
Last reply 1/12/2019 - 11:48pm
Replies by: Janner

Alright, so I noticed a pretty large lump appear on my groin area pretty much over night 2 nights ago. It was three different colors. (Flesh, red and blueishblack) I googled it while waiting for my so to get home from work and the only thing I could find that looked similar (pretty close actually to it) was nodular melanoma. When he got home from work we went to urgent Care because I don't have a primary care provider. The person who saw me basically said it felt like a superficial cyst and referred me to a general surgeon to have it cut off. My appointment to see the general surgeon is Tuesday.
I'm now just super paranoid and worried. I took a shower earlier and when I went to get out of the shower it started to bleed. (It's still slowly bleeding now like 4.5 hours later) Because it has been bleeding, it has kind of flattened out now. I read nodular melanomas can bleed, but when they do do they flatten out like the bump I have seems to do?
If it is a cyst like urgent care thought, has anyone heard of a cyst colored like that?

I've been taking pictures to document it, I don't mind posting them if that's okay.

I'm not looking for a diagnosis but just wondering if anyone has heard of or seen a bump like this and if it ended up being a cyst or nudular melanoma?

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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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