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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MelanomaMike's picture
Replies 3
Last reply 8/25/2019 - 9:21pm
Replies by: Casitas1, Bubbles, SABKLYN

Hi Family, below is my GoFundMe link so i can pay to see Dr.Hamid a Melanoma specialist as
Alot of you already know or have heard of him in Melanoma medical field, as much as i was apposed to doing it, my wife put it together...i know Hamids initial consult is $700 after that i have no idea, havnt seen him yet but, i do know i can change my insurance around back to straight Medi-Cal wich he takes! (Calif State ran Ins.) To get it switched from Kaiser to straight Medi-Cal can take up to 90 days "or less" im hoping!! I figure what ever money is left and unused i can donate here....thank you all for supporting me, i finally dropped my pride and now i know i need help....i love you guys.....https://www.gofundme.com/f/mike039s-melanoma-fight?utm_source=customer&u...

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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Thisisnottheend's picture
Replies 1
Last reply 8/25/2019 - 11:08am
Replies by: ed williams

Hi there!

Has anyone else experienced a slight cough while on opdivo? Mine started a few months ago....it’s not bad it’s like maybe a coughing fit 2-3 times a day max. But as you melanoma people know, your mind can go to the worst place and assume progression. I’m stage 3c if that makes a difference. Due for a CT scan in the next few weeks, so I’ll know for sure soon, but my anxiety is getting the best of me. :/

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MelanomaMike's picture
Replies 10
Last reply 8/25/2019 - 4:56pm

Hay Family! Just a quick check in, im here in Laredo Texas visiting my brothers, boy, Laredo SUCKS ASS!! Sorry for the foul mouth, its my ONLY opinion! And "Downtown" Laredo? Freakin Dirtbag capital of Texas if not America, when i see dogs, stray or not (who knows) walking around the streets, thats a dirtbag town in my book...i tell ya, if ever lived here, my job would be a Rescue for those dogs, even cats (didnt see cats) i actually love Cats the best, dogs second...but nevertheless id be busy as hell tell you that! Where im at now (my hotel) is nice, better part of town. Its been good seeing my bros Tim & Dan though!! I really needed this and i told them that..
Hope ya'all are good, im starting to debate that Dartmouth treatment, VERY low response rate with NO significant Overall Survival rate, Zero really in the study..i dont know folks...i DO know i love you guys....

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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LynnNY's picture
Replies 3
Last reply 8/25/2019 - 2:14pm
Replies by: LynnNY, Suzana65, JudiAU

Hi to all,

I'm a new member to this forum and I just want to say that reading through the forums here have helped me realize that I am not alone and that there is hope.

I am Asian, 43 years old and have been living in New York for the past 18 years. I've had this big lesion on my back for as long as I can remember. Because of its location, it was hard for me to monitor if it has evolved over the past years. My lesion is pinkish to brownish in color. It is about 7-8 mm and is almost elongated. It has smooth borders but the edges are a bit curved althoug. It is raised slightly.. My husband thinks that it hasn't change since he met me 16 years ago. I was going to post a picture here but I am not sure exactly how to do it. The spot didn't bother me for years...for some reason I've always thought that it was a keloid from a pimple or an injury. I was watching a news show last week and they were talking about skin cancer. I suddenly remembered my lesion on my back and decided to go to the dermatologist to have it checked. She biopsied it and has told me that it will take 10-14 days to get the results.

For my questions...I know there will be a lot of speculations and that each case is different but I just want to have as much information from people who've had experienced this. Is it possible to have melanoma for 10-15 years and not feel any other symptoms? How would melanoma present in Asian skin...would it be a slightly different color like pinkish instead of brown? And lastly, if this turns out to be melanoma, what do you think would be my survival rate considering that it's been in my back for so long.

Thanks and wishing everyone here good health.

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nasullivan's picture
Replies 5
Last reply 8/24/2019 - 11:01am
Replies by: ed williams, nasullivan

Hello All. Please bare with me as I seek some advice and comfort. My grandmother had a 0.2 mm melanoma removed from her forehead in 11/2015. It was "mostly in-situ" and no scan was done on diagnosis. Every 3 months she went to derm for a body check and saw the surgeon 1x per year - he did a chest xray - stating that when melanoma comes back - it goes to the lungs -_-. Top rated surgeon, no less. I do not think he was aware of the literature stating that melanoma on the forehead typically returns to the brain - and on the scalp is typically a worse prognosis (from what I can find).

The past few months - I have been noticing some mild cognitive changes and I requested she go see neurology. After some resistance, on MRI she was found to have 8 lesions on her brain. They were hemmorragic and she was sent to the hospital. She was discharged and I brought her to Memorial Sloan and they ordered PET scans. She has 8 lesions in the brain - one in lung and one possible on the adrenal. She feels "fine" - and doesnt see the cognitive changes that I see. Through her eyes, she is mostly asymptomatic.

She had a lung biopsy of the lesion on the upper right lobe and it was found to be positive for melanoma.

She is being following with neuro-oncology and oncology. She begins ipi/nivo on Monday. She is 82 - but prior to this was driving, working - an active 82.

Please tell me something positive! I just cannot believe we are here from 1 lesion that was in-situ? Sigh. I am terrified.

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tmoffit's picture
Replies 1
Last reply 8/24/2019 - 12:20am
Replies by: Anonymous

Hello,
I was diagnosed with melanoma in situ on Wednesday casually over the phone by a Dr. at my assigned VA clinic. Today I went to my appointment with the Dermatology nurse practitioner who said that my biopsy was sent to the east coast (I live in CA) for further testing and that it could take up to 4 weeks to get the results. She also sent a referral to a general surgeon and that referral at minimum won't be reviewed until next Wednesday by a Dr. Considering that my original biopsy was done on august 6th, is it normal that it is taking so long? I cant even see an actual dermatology Dr. until Sept 9th (the dr. is a resident at the clinic).

I am considering registering with a different VA district because the quality of care feels so poor. Do these turn around times seem normal and should a course of action been explained to me?

Timothy Moffit

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JudiAU's picture
Replies 2
Last reply 8/23/2019 - 7:32pm
Replies by: BillB, Anonymous

I think it is time to try and file for disability. I was encouraged to at the doctors office. . I was not working because I was previously sick and so I probably need the aid of an attorney. Any specific recommendations? I’m in Los Angeles but I’m not sure it matter. I had a high paying, intellectually demanding job, laid off, couldn’t find related work, diagnosed with melanoma, tried to do part time consulting work but never made a penny, very ill from brain tumor, stable, then diagnosed with melanoma. I think dates will be a problem. I have three kids.

Can anyone suggest a specific attorney? I find it overwhelming. I did search but didn’t find any names.

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studiodad's picture
Replies 11
Last reply 8/24/2019 - 1:35pm

Curious to learn first timers experience with initial treatment with Opdivo. I have stage 4 with no tumors at present. I have melanoma in the bone of my right scapula that will require radiation beginning next month. My diagnosis is stage 4 metastatic subcutaneous melanoma. I will be receiving Opdivo every 30 days. I know reactions to Opdivo vary but I am curious (fearful) of the unknown. What did you experience? I am 74 years old and overweight. I would have no idea I was sick except for the cat and pet scan results and the needle biopsy of the scapula. One tumor excised on my back 1 1/2 years ago that was metastasis from cancerous mole on my back removed 5 years earlier.

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anyone here have any experience with this?


Centurion

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Replies by: obtu.bt

Wasn't sure if anyone already posted this, but sounds interesting and promising.

https://www.cancer.gov/news-events/cancer-currents-blog/2019/cytophone-d...

Still visit this site every so often to check in on folks. Praying for all.

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Bubbles's picture
Replies 3
Last reply 8/24/2019 - 12:46pm

I think of you daily. Melanoma is not for sissies. I don't even know what cancer #2 denotes!!! But, as one of the strongest and most beautiful souls I know, I am certain you are handling whatever you are dealt with incredible grace!!! I hope there has been no SHARTING!!! Hang tough! Shalom. les

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JudiAU's picture
Replies 9
Last reply 8/23/2019 - 8:16am
Replies by: Bubbles, JudiAU

Hello all, Unhappily joining this community. :( I suppose we all feel that way. I had a melanoma removed about five years ago. 2B lymph nodes unaffected. Routine CT and then xrays were fine for three years.

Two years ago I had an MRI of my brain to check symptoms I was experiencing. I was grateful to find that it was that not melanoma , but a nastily placed large Schwannoma. I had surgery again, and then radiation. Along the way I temporarily lost my vision, had sepsis, steroid medical error that caused glaucoma, bizarre TMJ and my cheekbone shifting from anesthesia, and a major surgical stroke where I lost all control on my right side. Other than the terrible nerve damage in my face, I'm mostly functional and can still be a wife and parent to my three kids. I’m 46.

On my last MRI my tumor scraps were stable post radiation but they found a new mass and it is most like Melanoma. I was already with Cedars and have met with Dr Hamid who said I need to remove the tumor, follow with radiation, and then do immunotherapy. I have surgery with my same neurosurgeon.

Does anyone know how my previous surgeries will effect me? I assume it is riskier. I’ve already been through so much.

What form does radiation take? Do I complete when I’m stable? What is the time frame? What about immunotherapy? Is that usually coupled with radiation? Assuming it is successful, how long does this all take? I’m just trying to get a grasp of my future. My PET scan is not back yet so I don’t know if there are other sites.

I feel like I’ve gotten every side effect known to man and I’m having hard time facing brain surgery again when all I want to us drive carpool.

Judi

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/22/2019 - 2:27pm

Hello All,
My husband was diagnosed with stage 4 in july. He is getting ready for round 2 of yervoy and opdivo next week. He had bad side effects a few daya after first round. His nauseau was uncontrollable and he wasnt eating or drinking so he had to be admitted for a few days. While there had several fevers. Finally got thing under control and is now home eating and drinking but the hiccups recently are non stop...any one experience this or have tricks to stop them?
Besides that Im terrified...the weight loss and amount of sleeping is scary. Its hard to watch him go through this knowing I cant fix it. Can someone please tell me what to expect through this treatment....first scans were done a few days ago and appears to have enlarged and progress....is also on his brain...doctors are hoping to see changes after round 2...sorry im all over the place with this post....it just seems to be taking him down so quickly and even though he says he feels a difference, all i see is him getting worse...more weight loss...more sleeping....less and less motivation...ect
Thanks for the help

lydia loth

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bobrenard's picture
Replies 5
Last reply 8/24/2019 - 12:32pm

Hello everyone.

I registered today to have information and raised doubts about a lesion that I have on the arm.
I am 38 years old french living in Paris.
I have a few years (about 3 years I think) a lesion that looks like a spot, 5mm and pink.
A little worried, in August 2018 I went to see a dermatologist who did not seem worried by this lesion. In order to be sure of his diagnosis, I went to see a second dermatologist who , using a dermatoscope, validated the diagnosis of the first dermatologist. For him, nothing alarming and no need to remove this lesion.
This lesion never changed in size or color.
However, this lesion looks nothing like the moles that I can have on the body.
Regularly, I measure it and observe no change.
About a week ago after running, I realized that this lesion was scratched on top.
I had previously read that a lesion that did not waren could be a sign of melanoma.
I started to be very worried. On this lesion, a crust was formed and I read that it was the sign of an ulceration !!
I then urgently made an appointment with a new dermatologist.
Meanwhile, two days ago, the crust fell and the scratch completely healed. The spot has found its state before. No color change, no change in size.
Yesterday, I went to my appointment with the dermatologist who after a complete oscultation, think it should remove this lesion for analysis.
So I have to go in 10 days to undergo the exeresis.

Independently of the fact that I am very worried by the analysis of this lesion, I would like to know if a melanoma-type lesion that would have been scratched can heal ?
In addition, a melanoma-type lesion may not evolve (grow or change color) for several years?
The dermatologist that I saw yesterday, told me that it could be a dermatofibrom or a naveus of sptiz, and that it is better to make sure of it.

Thank you for reading me.

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fedupnurse67's picture
Replies 4
Last reply 8/24/2019 - 11:55am
Replies by: MelanomaMike, Bubbles, Linny, lkb

Hi guys, I'm a new, old person to the boards. Its been some time since I was here. Almost made it 20 years! But... I had an abnormal LDH in March, rechecked in July and it was still abnormal but higher then it had been in March. So that earned me a CT Scan of my chest, abdomen and pelvis. Results of that showed enlarged lymph nodes in my retroperitoneal space, basically some enlarged lymph nodes by my spine. That result got me a biopsy of those lymph nodes. Well when I went to interventional radiology they took the biopsies from my front lower abdomen. I won't get the results back until August 26. I know though that the biopsies will definately be positive for cancer, just what kind?

I'm wondering about treatments now days, and about possible lymph node dissections? Just concerned, and interested.

As a background, I was diagnosed stage 3 in June of 2000. I never had a primary site on my skin. I had a lymph node removed from my left groin that was the size of a small egg and was 90% cancer. It had appeared the lymph node did its job and keep the cancer there in that 1 lymph node. I did one year of interferon, completed in June of 2001. Tolerated it very well from what I'm gathering now.
I have been 19 years NED... till July of 2019. This isn't a ride I wanted to do again.

Any information would be greatly appreciated.

Donna

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