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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Kyrarosee_'s picture
Replies 1
Last reply 9/29/2017 - 12:05am
Replies by: Anonymous

I had a mole sent for a biopsy 2 weeks ago today. MY dermatologist told me it would take 2-3 weeks to come in and she’d call me with the results either way. I’m tired of waiting and not living my life because I am in constant fear. She found 5 moles she doesn’t like and said whatever the result of this one is, is the result of them all so knowing I could have 5 moles that are MM scare me so bad and I just want to know already. 

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Anonymous's picture
Replies 3
Last reply 9/29/2017 - 12:45am
Replies by: jc2dad, Anonymous

Is it possible, or has anyone ever had one type of melanoma and then develop another?  Trying not too worry too much but have bruise like marks on both big toes. Could also be from blood thinners is am on. 

Thanks for any info. 

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stacijane's picture
Replies 18
Last reply 10/3/2017 - 8:01pm

I want to introduce myself and briefly tell my story.  I was originally diagnosed with melanoma in July 2016, and after a wide excision with sentinal node it was determined that is had not spread to lymph nodes and I was put on a 6 month scan/3 month dermatology follow up plan.  All seemed fine until about 3 weeks ago, when a cyst I had removed from my back turned out to be melanoma.  Tuesday (9/26) I received the results of a PET scan and MRI, it was found that one lymph node in my right armpit is involved, everything else looks clean. 

My oncologist has offered immunotherapy (I apologize, the name of the drug escapes me - still processing everything) to start and said that a second drug can be added should it be determined it's necessary down the road.  He has also referred me to Roswell Park in Buffalo, NY and I'm waiting for a call from them to set up an apointment for a consultation there.  My oncologist suggested they may be doing trials there that could potentially "cure" me, while all he can offer locally is "maintain and hope". 

I'm just beginning this journey, and your stories of survival are so imspiring to me.  I learned quickly when I was told the first mole was melanoma that Google is NOT your friend!

I may be naive, but I'm hoping that because my first and second occurences were on my mid/upper back, and because my scans show involvement on just one lymph node at this time, that my prognosis is hopeful.  I have grandbabies to watch grow up, damnit!

 

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/29/2017 - 9:56am
Replies by: jennunicorn, Rocco

I was wondering before WLE/SNLB had any 'symptoms' that the melanoma was in their lymph nodes or sentinal nodes? I have noticed an area of tenderness below my collar bone, where the sentinal nodes are. It is on the same side of my body as my mole was. It has been tender to touch, for a few months, but no hard firm lumps, just small soft tender spots. 

Thank you

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Happygal's picture
Replies 26
Last reply 10/17/2017 - 9:10am

I am to decide to start Yervioy within the week.  I am scared if the side effects outweigh the benefits.  I live a crazy full life and am so very afraid of this treatment.  Have you done it?  Did it affect your daily life?

Tyais

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Bradley75's picture
Replies 7
Last reply 10/4/2017 - 12:51pm
Replies by: sister of patient, Anonymous, Bradley75, MovingOn

I had surgery in late July to remove a tumor near T-5 that was like 1mm away from my spine.  They removed the tumor and hit the area with a very high dose of radiation.  I felt really good for two weeks after surgery.  Once they hit me with 24 Gy of radiation in one shot, I have been a bit of a mess. 

Two weeks ago, I started having pain in my shoulder and back near the radiation site.  I was a bit concerned it might be a new met as every time I have pain it turns out to be a new met.  I was at my onc for my Keytruda infusion Tuesday and found out it is nerve pain.  They gave me Gabepentin and it helps a lot. 

I am curious if anyone else has had nerve pain issues like this?  My onc said the nerves could be waking up or regenerating and that this should resolve in time.  All I know is shooting nerve pain really sucks and has the ability to keep you up at night.  Any input or other experiences you could share would be greatly appreciated. 

Brad

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MovingOn's picture
Replies 1
Last reply 9/28/2017 - 11:27am
Replies by: MovingOn

Has anyone with hypophysitis from Ipi/Yervoy had their prolactin levels checked afterward?

My prolactin levels are normal from a test done today (8 was my result and the range is 1-17). I don’t believe that I am supplementing them in any way (does another gland besides the pituitary produce some prolactin?) so it may mean that my pituitary is doing something instead of nothing after hypophisitis.

I’m not getting my hopes up but I would really like it if my pituitary starts producing cortisol again someday. The ups and down of the short half-life of cortisol replacement medications have me wishing for a slow release solution (for example, thyroxine is good. It doesn’t have highs and lows but instead is released over time). By the way, my cortisol came back as too low to measure for the second time today even though I’m taking 20mg of cortisone. Going to get that worked out before starting Pembro on Monday.

Wishing you all the best.

Danny

Diagnosed Jan 2017 (stage 3b with unknown primary). Radical neck dissection Feb 2017 (4 positive nodes in level 5A). Ipi started Mar 2017 - ended May 2017 (Hypophysitis), recurrence Sep 2017 (nodes in back of ear and parotid)

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/27/2017 - 7:24pm
Replies by: Anonymous, Julie in SoCal

Any thoughts or experiences with nivo plus radiation?

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barry_g's picture
Replies 3
Last reply 9/28/2017 - 1:06pm
Replies by: Nashvillian, barry_g, Anonymous

I'm newly diagnosed with melanoma in situ on my face and want to be able to make informed treatment decisions. My dermatologist wanted me to make an appointment for excision by him. In his description of the procedure, there was no indication that pathology at the margins would be checked microscopically during the surgical procedure. He also mentioned there could be a significant scar. I would appreciate information on two questions:

1. Don't some surgeons perform a stepped excision procedure and go slowly and check microscopically as they go along so it's a minimal but thorough excision? Perhaps I need to find such a surgeon in my area?

2. Do some patients opt to have a combined excision + plastic surgery procedure to take care of much of the scarring in advance?

Thanks very much.

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lshepard27's picture
Replies 1
Last reply 9/27/2017 - 8:15am
Replies by: Bubbles

My partner, David, was diagnosed w/ Stage 4 in February. Lesions in the brain, lung and liver.  Surgery took out 3 lesions in brain. Started clinical trial of Yervoy and Opdivo/Nivo.  Could only handle one round of double. Since May has been getting Opdivo infusion every other week.  3 remaining tumors in brain are too small to measure, everything else has shrunk consistently. 

But now, he has cancker sores in his mouth that seem directly related to the infusion. The farther from the infusion, the better it gets. But it's severely impacting his eating.  He's lost 7 pounds in last 6 weeks.  Dr. Atkins @ Georgetown, who we love, says he hasn't seen canker sores as a side effect. 

Anyone know anything about this side effect?  Or what to do? Thanks, Lisa

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CancerSpouse's picture
Replies 14
Last reply 9/29/2017 - 10:51am

Hello Everyone,

I'd appreciate recommendations and other ideas regarding oncologists specializing in melanoma in the Los Angeles or North Orange County area. My husband had a melanoma lesion removed from his torso in 1989. The margins were clear and no further treatment was needed. He's seen a dermatologist regularly with no recurrance of melanoma skin lesions, including now, although he's had a couple of other skin cancers.

Flash forward nearly 30 years, a growth thought to be a lipoma on the back of his head came back positive for melanoma last week. It was fully encapsulated. Two more growths, a walnut-sized one on his deltoid and, most troubling, a three-centimeter growth engaging his left adrenal gland, were revealed in full body scans. Nothing in his brain or other vital orgins.

Although he will lose an adrenal gland, the surgeries to remove the remaining masses should be rudimentary. But I would appreciate advice on an oncologist in the aforementioned region because John will need treatment for systemic melanoma. Would also appreciate any other ideas/thoughts/miracles. Thanks in advance! 

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Anonymous's picture
Anonymous
Replies 0

Hi,

I was just wondering if NM always presents with the dome shape or blister? Is it always fast growing? Can it be very small in diameter <3mm and still be quite deep?

Thank you so much

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To my count, I've had 4 biopsies done where the mole was graded atypical but the biopsy didn't remove it all, or at least the pathology didn't indicate either way. Everything that's at least mild-to-moderate or above has been fully removed in some fashion. One of my milds grew back quickly after its biopsy 6 months ago, one of them never grew back in the year since its biopsy, and the other two are brand new biopsies and too soon to tell if they will grow back.

I didn't think anything of leaving the milds behind. My derm said it's standard practice and we can "watch them." For what, I don't know, because he's not at all concerened about the one that's shown regrowth. Then I saw a theory that a biopsy causes trauma to the mole and changes the nature of the cells which can turn them into cancer. I feel like I can't win! Leave the ugly moles unbiospied-- worry that they are cancer. Biopsy them-- turn them into cancer.

Does anyone know if this is true? That trauma can advance a mole toward cancer? And would it even be possible to have the mole I biopsied a year ago fully removed now? I'm at high risk for melanoma, so trying to be cautious and do my best to live to see old age with my husband. Thank you for any help!

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