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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Anonymous's picture
Replies 4
Last reply 2/25/2017 - 1:35am
Replies by: Anonymous, Polymath, stevenallenschwartz

Its crazy how stage 4 has a way of moving the goalposts as to what's good news and whats not. I'm currently stage 4C, but have had a good rersponse to PD-1. Has anyone had any experience with trying something new after achieving "stable disease"? I've been pretty lucky (and feel healthy still!), but some stubborn mets remain -- has anyone tried and been able to get radiation or something along those lines at a similar point in time? I really don't like the idea of just being passive while PD-1 fights ther mel to a stalemate. I'm hoping to have a serious discussion about surgery with my doctor at some point, but don't think that's an option at present. 

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marta010's picture
Replies 6
Last reply 2/24/2017 - 11:28pm

After 5 tremondously difficult years, my husband FINALLY is responding to treatment!  His latest PET/CT scan showed a significant reduction in the tumor activity in his cervical lymph nodes and minor reduction in his periportal and portacaval nodes.  Better yet is that his brain MRI showed stability with no new tumors.  His last Keytruda infusion was in July 2017 - had to take a break due to a sudden brain edema event that required a craniotomy and Gamma Knife.  Currently, he's continues to take Dabranib - we hope to discontinue that after his next scans in 3 months if the response continues.  His quality of life still is hampered by joint pain in the hips and knees which limits his mobility.  Would love to know what others are taking to mitigate this side effect.  Thanks.

Ann

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Aaron's picture
Replies 11
Last reply 2/24/2017 - 10:47pm

Ok.  So before I go a little further I will give you a shortened version of the whole story, like I always do, for those who are unfamiliar or have forgotten.  

NIVO/IPI combo

1st scan everything reduced by 1/2  Roller coaster high

Pituitary enlargement and vitiligo develops and  put on Prednisone complete only 3 of 4 Ipi and continue on Nivo  Roller Coaster high because I'm thinking I am responding but also low because I want the 4th dose and questioning what my life will look like now on all these new meds to replace pituitary function.

2nd scan no growth no shrinkage; stable  Roller coaster low; questioning if my good responses were over.

Tuesday I had my third scan.  I originally had 20+ tumors and now only have two measurable tumors left and they are shrinking!  Thank God for modern medicine and for being with me and my family through this.  I know it isn't over and that NED is not "cure" but I can't help but feel I am going to beat this.  ROLLER COASTER HIGH!

 

Wishing the best and for all as always.

Aaron

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Replies by: Mat, Anonymous, brendon, Lddaughter, J.bun, debwray, jennunicorn

Hello, 

We are new to this whole stage 4 diagnosis and we are desperate to start a treatment. A little back story, my mom got sick at the beginning of January. After an initial CT and U/S they said she has spots and wanted a liver biopsy. The liver biopsy identified our cancer was Melanoma. She has it heavily in her liver and small spots on her adrenal gland, kidney, and 2 small spots on her lungs. Good news, the brain is clear. The biopsy was sent back for mutation diagnosis but they said we won't get that until the end of next week or 2 weeks still. We are working to set up a referral to a great university department but just feel like there is nothing we can do until we get the mutation results. Is this typical to feel like you are in limbo before treatment or is there something we should be pushing for? We keep hearing that Melanoma is unlike any other cancer so reading posts from this site have been helpful! She lost a lot of energy at the beginning so we are working on diet and rest to start getting strength back. I feel slightly helpless so I can only imagine how she is feeling right now. 

 

Thank you for reading.

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Anonymous's picture
Anonymous
Replies 12
Last reply 2/24/2017 - 2:55pm
Replies by: Janner, Anonymous, UBContributor, J.bun, jennunicorn, Gene_S, Hukill

Is it really caused by Sun exposure? I don't think so. There are many many people enjoying each day in their life soaking up the sun, tanning, not applying sunscreen and never get melanoma, while others never do these stuff and it happens to them in a young age. I just don't know what really causes this disease! It's unfair.I hate it.
Sorry but I'm very disappointed and just want to say it.

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Its crazy how stage 4 has a way of moving the goalposts as to what's good news and whats not. I'm currently stage 4C, but have had a good rersponse to PD-1. Has anyone had any experience with trying something new after achieving "stable disease"? I've been pretty lucky (and feel healthy still!), but some stubborn mets remain -- has anyone tried and been able to get radiation or something along those lines at a similar point in time? I really don't like the idea of just being passive while PD-1 fights ther mel to a stalemate. I'm hoping to have a serious discussion about surgery with my doctor at some point, but don't think that's an option at present. 

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mdoh's picture
Replies 5
Last reply 2/24/2017 - 2:33pm

Hello fellow warriors- I was diagnosed with stage 2a melanoma in July 2015. No issues since. Have been diagnosed with gallstones after a couple of acute attacks. Question is should I be concerned about this gallbladder removal surgery lowering my immune system? Should I let my oncologist know? 

Thanks and keep fighting!

mary

 

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casagrayson's picture
Replies 1
Last reply 2/24/2017 - 1:36pm
Replies by: Anonymous

I posted a link to a picture of a very ugly lesion on my husband's back in January.  
http://s102.photobucket.com/user/casagrayson/media/fullsizeoutput_328c.j...

He went to the dermatologist on the 9th and had it biopsied.  Against my wishes, doc did a shave biopsy, saying that he wanted to remove all of the lesion above the skin level.  Doc noted to rule out BCC/SCC on the visit report.  

In-house dermathologist made the following report:

Gross description:
Received in formalin is a 1.2 x1.2 x 0.5 cm tan-gray fragment of skin.  Bisected and submitted in toto.

Pathologic Diagnosis:
Invasive Squamous Cell Carcinoma, Keratoacanthoma type

We went back yesterday for a Mohs procedure.  Here is the visit report:


Indications for surgery:  Poorly defined margins, aggressive pathology

Final defect measured 2.0cm x 1.5cm and extended to the fat.  Scarring was present at this stage.

 

So, here's my question.  Husband has had two prior melanomas.  There are instances in the literature of nodular melanomas being misdiagnosed as SCC, Karatoacanthoma.  Should this specimen have been stained for S-100?  Should someone have mentioned checking lymph nodes (even if it is SCC)?  Am I being too paranoid here?  The depth of this lesion really worries me.  

Strength and Courage,

Susan

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RaquelP's picture
Replies 2
Last reply 2/24/2017 - 1:35pm
Replies by: casagrayson, jenny22

Has anyone heard from Kerri? Hoping Jake is doing well!

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jenny22's picture
Replies 15
Last reply 2/24/2017 - 6:53am

I signed on to post yesterday and read the news about Paul and then couldnt...

Woke up today feeling like I wanted to share some good news, but i do so somewhat hesitantly in light of yesterdays tragic news.

As a quick history.....diagnosed 1B sept. 2013, First recurrence in Nov of 2014, in same spot as primary, considered "instransit", restaged to  3B...... did vaccine trial ......had 2nd recurrence Nov. 2015.....same....this time did short course hi dose radiation.....(dec-jan 2016).....then started Leukine injections (march 2016)....though i know most poeple wil say leukine hasnt been shown to have any benefiit when used alone.....i am in my last cycle and about to finish the year long treatment.

Tuesday had Brain MRI, and CTs of neck, chest, ab, and pelvis...

I am thrilled to say they were all CLEAR.....and onc's words were "scans are perfect, you are cancer free".

Will stay on 6 month scan schedule and hope things stay this way....I am now 1 year and 3 months out from last recurrence.....(3.5 years from initial stage 1 diagnosis)  this is a good milestone since first two recurrences each happened about a year apart.

We all know this disease is tricky and can come back any time in any way...

For now though, I am going to enjoy the good news, and try and be a little less worried, at least until the next round of scans.

I wish posting good news didnt make me so sad for so many others here....

Best to everyone....

jenny

 

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Coneflowers's picture
Replies 8
Last reply 2/24/2017 - 3:47am
Replies by: Coneflowers, Mat, Ed Williams, AshleyS, Anonymous

My daughter who is a child has now been on Opdivo for over a year. She has been stable for almost a year!! Which is so great! Just wondering if there is anyone out there that has moved on from stable to NED? I have read a few stories, and I know everyone is different... I of course also worry that it will stop working. Her case is extremely rare and no one really knows what to expect.

Thanks!

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Hriggenbach's picture
Replies 7
Last reply 2/23/2017 - 11:30pm
Replies by: Anonymous, Hriggenbach, jennunicorn, Ed Williams, Hukill

I'm 3c and going to be starting ipi 3/16. My dr indicated certain side effects tend to lead better outcome of course I didn't ask her what those were and I can't find anything stating that on the internet I was hoping someone might know 

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Maria C's picture
Replies 8
Last reply 2/23/2017 - 10:00pm

Hi Everyone,

Just popping in because I think of all of you often, even though I've been out and about "living life" as they say. Wanted to share some good news & a bit of hope, as such posts were so helpful to me when I first joined these boards in 2015.

I am 6 months from an intense summer battling some stubborn brain mets - 5 altogether with 4 recurrences, 2 that bled and needed back-to-back crainiotimies in June/July, followed by partial (not whole) brain radiation in August. It was a real touch-and-go summer during which I prepared my will and everything else you do when you really don't think you're going to make it.

Well last week I got the results of my second follow-up brain MRI after the surgeries, and everything is stable and clear! A little necrosis surrounding one spot but nothing out of the ordinary or unexpected, and most importantly, NOTHING NEW! My body, too, has remained stable and clear for a year now (since last February).

I am feeling better and more hopeful than I have since I was first diagnosed with muscosal melanoma in spring of 2015. I am back to work full-time, and my energy level is nearly back to normal (except a day or two after my maintenance pembro every 3 weeks when I'm hit with fatigue, like today).

Healthwise, 2017 is off to a fabulous start after an extraordianarily rocky 2016 that, on top of the brain met scenario, included some of the most extreme side effects of the ipi/nivo protocol. Along the way, these boards taught and encouraged me to get second opinions for optimum care.

All this is to say....hang in there fellow warriors!! You are all in my heart daily and I do check in every now and then without posting, to both follow many of your stories as well as stay informed with the latest research and anecdotal tales. Whenever you're here, you're doing what you're supposed to be doing - connecting and educating yourself to be your own best advocate.

So be well, be aware, and believe :-)

 

 

Maria - Stage IV, MM, brain mets, responder to ipi/nivo combo

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zfishberg's picture
Replies 1
Last reply 2/23/2017 - 9:53pm
Replies by: Judy Steven's wife

My husband has stage 4 melanoma with multiple lesions in  the head.

He had craniotomy in October, Gamma Knife treatment in December and was on Mek/Taff combo for 3 month.

We had to discontinue the combo because he developed very high fever and chills

started on Keytruda last week.

the MRI in December showed good progress - most lesions decreased in size.

but the second MRI in February showed  3 new lesions, so waiting for the next Gamma Knife procedure.

just a couple days ago he started feeling some kind of spasms in the face , back of head and radiating to the neck area.

the spasms are short in duration - less than 1 min. - and do not cause any changes in facial expression.

does anybody experienced this kind of spasms?

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JustJaren's picture
Replies 5
Last reply 2/23/2017 - 9:51pm

Anyone had this? What was recovery like? Time frame? Any complications?

 

Thanks in advance!

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