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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Rita and Charles's picture
Replies 8
Last reply 2/2/2018 - 12:31am

I haven't been on the page much, my heart couldn't handle seeing the struggles, the defeats but sadly the successes too.  All too much.  One year ago, my husband died in my arms at home.  His last day of full brain radiation, filled with tumors throughout the body.  In my heart, if we got to the last appt for the 10 days, the next day he was scheduled to start agressive immunotherapy.  That last day came too soon.

Hard year, in retrospect I wasted too much time researching and reading - I should have just been holding him.  My biggest regret.

Take care warrioirs, prayers are for you.

 

Rita

Rita

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/3/2018 - 1:56am
Replies by: Anonymous, Janner, jennunicorn

Hello! I have read this forum for over a year now, but just signed up after a second melanoma. First melanoma discovered Jan. 2017 on upper left back. Was staged aged melanoma in-situ. Did deep excision surgery to ensure all was removed and got clear margins. I continued to go to dermatologist nearly every month, removing 3 moles at a time, all moles came back as mild-severe dysplastics. Jan. 2018, I noticed one on my head was a little larger than I thought it used to be. My doctor had it removed and called a couple weeks ago to tell me it was another melanoma. I am in the process of scheduling surgery for removal. At my appointment my doctor recommended a specialist and an oncologist for an evaluation. My husband and parents are pushing for a PET scan. My doctor says typically with new (less than a mm) melanomas, they don’t usually order PET scans. But we can take the steps we can to try to get one and have Insurance cover it. Has anyone here had two melanomas within a year, that went on to an oncologist and had scans done and found nothing? And the opposite. Has anyone had two in situ melanomas within a year, went an oncologist and discovered it was internal? I don’t want to over react, but I don’t want to be in denial either. Any/all information is helpful. Thank you!

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muphinn's picture
Replies 7
Last reply 2/1/2018 - 1:09pm

Hey y'all. I know it is not 'common' to have multiple flavors of Melanoma. Stage 1B in R calf and now R big toe is concerning.

About a month ago I noticed little dark spot at edge of nail and assumed it was dirt.....I usually wear polish so it was not that noticeable til yesterday when I removed polish and now have discoloration over maybe a third of the nail. No history of injury and it causes no pain to push on the nail.

If I knew how the heck to attach a picture, I would!

I see my derm for routine follow up in March but this is not so much a fun way to spend the next month.

Any insight other than don't panic? I am not the type to panic so no worries. I am, however, the type to have had an exceptionally bad record when it comes to having unusual/lousy things happen in my life. So anything that starts with, "well the odds are...." I have already lost that game.

(and if you can direct me to posting a fancy toe picture, much appreciation!)

 

Thanks!

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/31/2018 - 9:17am
Replies by: Anonymous

I had a c.t scan and it showed a lobulted mass on left upper lobe of lung suspicious of a metastasis .does that mean it has spread from lung elsewhere or I have it somewhere else and has gone to lung

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/31/2018 - 10:00pm
Replies by: BrianP

I'm just Curious in Overall        is H. Lee Moffitt   Or Duke Cancer Institute        better for The Overall  Treatment   Of Melanoma??? 

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Nick C's picture
Replies 6
Last reply 2/13/2018 - 9:35pm

Hey everyone...

Finished my first cycle of trial of a combo of prembro and enoblituzumab and had my scan. Unfortunately, there is still progression. We are continuing the second cycle (reduced to six weeks) and scheduled another scan then. If there is no sign of reduction, I'm out of the trial.

That would leave me with my back-up plan...Yervoy. Either as a mono or as combo trial. Either way, I still have options. Sure one of the these will work.

Other than that, I feel fine...no side effects. If it wasn't for the scans, I won't even know that I have anything wrong with me. (MRI still shows brain activity).

Keep up the the good fight my brothers and sisters!

Nick


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BrianP's picture
Replies 1
Last reply 1/30/2018 - 9:09pm
Replies by: Bubbles

Hopefully this isn't a repeat post here.  Pretty good summary and easy to read outlook for melanoma treatments.

http://www.onclive.com/web-exclusives/weber-shares-insight-on-future-of-...

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Anonymous's picture
Anonymous
Replies 7
Last reply 1/31/2018 - 12:43pm
Replies by: Bubbles, Janner, Anonymous

Wide excision done and stage is pT1b.   I’ve been told that, since the wide excision has already been done, a sentinel node biopsy may prove a false negative. Has anyone had a sentinel node biopsy AFTER their wide excision?  

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dessie's picture
Replies 5
Last reply 1/30/2018 - 8:20pm

You know being in the medical field , it is difficult to know it all .  And this... melanoma,  i do not know enough. Nor do I know how to understand the path report.   

I had a wide exccison of my sentinel node in my adbomen performed Jan 15, 2018.  I had "lit up" in my right groin as well.   I had my main sentinel dissection done (on my abdomen the wide excision) which happily came back clean and negative.  Two other sentinel nodes that lit up in my groin were also biopsied and 1 of the 2  was "positive for metastatic malignant melanoma with < 5%  of the volume and no extracapusular invasion"

Question:  how is it the primary sentinel node is negative yet a distant sentinel node is positive?  I have not logically been able to put this together in my head.  (unless the original mole was not the primary)

I have an appointment today with my surgeon and an hour later with the oncologist so I know myquestions should be answerd.  I also will get the results of my MRI of my brain and my PET scan I had done Friday.

I have been looking into Mayo Clinic in Jx Fl for (if neded) a minimally invasive lymph node dissection of my right groin.

If anyone can share their experiences with this procedure please let me know how it went.  

I will be reporting back this evening as to how things went .

Until, I will pray that everything will work out for the best and that we all can be healed and find peace in our lives.

Dessie

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KAF's picture
Replies 4
Last reply 1/29/2018 - 10:42pm
Replies by: BrianP, MovingOn, KAF, Aaron

HI all,

I'm one of the lucky ones to be NED after being diagnosed stage IV in May 2016.  I got hypophysitis in August 2016 (3rd round of Ipi/Nivo).  I was put on 70mg of prednisone, weaned down to 5 and then started having double vision.  Went right to the MRI and had inflammation again.  I was put on 100mg of prednisone and weaned down to 5mg.  I've been on 5mg since December 2016 and started back up with just Nivo.  After a couple of scary Pet Scans I'm back to NED (my doc thinks the flare ups on the scans was my reaction to the Nivo and not melanoma because the locations keep changing).  

Has anyone had hypophysitis and had recovery of their pituitary?  If so, were you able to totally go off the steroids?

 

Thanks,
Karen

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/31/2018 - 10:06am
Replies by: maryliz56, lacypope, Anonymous, Janner

Hello,

I will receive the results of my biopsy in a few days.  However, in spite of all my searching, I have yet to find an answer to this question.  Can a common mole changed to having all the warning signs of melanoma and not be melanoma?

My experience is this.  I had a long time common mole that has been looked at by my dermatolgist and determined to be "typical" by her observation.  Recently I noticed it changed to have all the warning signs of melanoa (possessing all the ABC's you are told to look for).  Do any of you have experience with a mole changing in this way and it being benign or should I prepare myself for a melanoma diagnosis?

 

Thank you,

LP

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I had a neck dissection in March of last year on the left side and was pronounced NED after none of the nodes came back positive. Please note my ENT only removeed nodes from only the  affected drainage basin. back left side of neck 

Since the start of January I have noticed mild discomfort under my left clavicle (seat belt) and on the left side of my throat by Adam's apple. I have not  had a problem swallowing. At a recent derm appointment, the physician did not notice any swelling.

I have a CT on Friday and follow-up with ENT in February.

Has anyone experienced anything similar?

I was diagonesed as 3a a year ago.

 

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Mat's picture
Replies 3
Last reply 2/1/2018 - 8:48pm

From The New York Times:

What to Say When You Meet the Angel of Death at a Party

After years of living with stage IV cancer, I have some suggestions.

https://www.nytimes.com/2018/01/26/opinion/sunday/cancer-what-to-say.html

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