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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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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snow white's picture
Replies 44
Last reply 2/23/2017 - 9:50pm

It is with a very heavy heart that I have to relay this news.  Our dear friend and warrior Paul passed away on Friday 2/17/17.  I have been in touch with his daughter and she asked me to relay this news.  I am so very sad about this.  He gave me and my family so much hope, he was fighting so hard just to get back to LA to start the trial.  I had been keeping in touch with him via text after I met him in person at The Angeles Clinic. Such a great guy and will surely be missed, especially him humor!  His daughter has asked me to let all know that his services will be on Saturday at Pine Lake covenant church in Sammamish.  If you need more details I am happy to text her.  I know his family was a great support to him and will miss him dearly.  I will miss his posts on here so much.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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debwray's picture
Replies 15
Last reply 2/23/2017 - 7:28pm

Hi,

Have had 3 doses of ipi nivo over 15 weeks, delays due raised AST ALT so have had one 6 week drug hol and dose 4 should have been yesterday, but back on 50mg pred as numbers raised again in spite of 10mg pred daily after dose 3.

12 week scan showed liver progression..but that would be a compare to reference scan 5 weeks before treatment start and after 2 doses plus 6 week drug holiday BRAF wild type and in the uk.

Mood music from docs is that they think true progression rather than psuedo progression, and took a blood to test if eligible for immunocore trial https://clinicaltrials.gov/ct2/show/NCT02535078?term=immunocore&rank=3

Anyone out there with experience of "late " response to combo with diffuse liver mets ?

Feeling a bit punch drunk as the bad news keeps on coming- anyone been transitioned to nivo solo with grade 2 liver probs with suspected progression ?

Any experience / info good or bad welcome. Was sort of hopeful for a response with mild vitiligo and with  some superficial skin lesions fading away. Back in the waiting game now as I think next scan will be used to determine next steps

The white knuckle ride continues......

Wishing you all well

Deb

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Dreaf01's picture
Replies 5
Last reply 2/23/2017 - 5:55pm

I pray for everyone on here everyday. I need some opinions please. I had my wle and 2 nodes removed from my groin on 12/29. The nodes were negative (thank God).Right after surgery a golf ball hard lump developed right next to the groin incision and gradually started decreasing. I had an allergic reaction to something (unknown) last weekend, as a result I was put on Prednisone. The prednisone for the most part made the lump dissolve or decrease quite a bit. Im not sure if the lump was a seroma or some kind of post op issue, but my surgeon saw it at my post op apt and didnt seem concerned. Now all I feel is a small hard lump that tends to decrease a little when massaged. It is not painful. Im just concerned because Im not sure if its that same post op lump or a lymph node as it has been almost 2 months since surgery. Has anyone had anything similar? I have an appointment with the surgeon next week, but a little nervous. Thanks!

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Dear MPIP Community:

FDA's Oncologic Drugs Advisory Committee (ODAC) will meet very soon to discuss an investigational new melanoma drug. This meeting will include an opportunity for NRAS mutant patients (and caregivers of those patients) to speak to the committee about the importance of new treatment options in metastatic melanoma. The FDA also allows letters to be written. We encourage you to get involved the best way you can.

If either of these opportunities would be of interest to you, please email me directly at education@melanoma.org. Once the FDA provides a date for the meeting, we'll know more details on both the meeting and the letter writing opportunity, so stay tuned.

Thank you,

Shelby - MRF

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Bmine102793's picture
Replies 4
Last reply 2/23/2017 - 4:58pm
Replies by: Hukill, Cathy M, Anonymous

Fiance has stage 3A melanoma and will start yervoy in april. Once treatment start he will use short term disability through work on the paper work it states that he can only work 40 hrs a week with 40% taken from each check so financially we are screwed. Is there any other help out there? Im unable to work due to my daughter having an immune deficiency so we're at a loss any enough would be appreciated

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Cathy M's picture
Replies 23
Last reply 2/23/2017 - 4:45pm

John Moore       9/12/1960 - 2/4/2017

It is with a heavy (and sometimes angry) heart that I share my husband's passing on the board. After 3+ years of battling Stage IV, his fight is over. He held on to his fighting spirit to the very end. He died with me holding his hand, playing his Eagles World Tour DVD and with me telling him it was ok to go, I would be fine, and how I dearly loved him and the time we had been able to spend together. 

Melanoma is a horrible disease.  I watched it break down his body but never his spirit. I watched it over 3+ years take from me my lifetime companion little by little. But what it can never take from me are my memories. Mountain biking, ATV racing, Jeep exploring, walking our Great Dane, moving cross country because it was my dream to "live in the west".

When diagnosed Stage IV, his goal became to raise awareness. He participated in news interviews. I made awareness packets every year and distributed them at the cancer center where I worked and with friends and neighbors. He was interviewed for a documentary about genomic sequencing that was made into a DVD by the students at Dixie State Univeristy in St. George, Utah.

So...I will continue his fight. I will continue to participate in 5K's. I will continue with my information packets. I will volunteer for skin cancer checks at the dermatologist's office.  Melanoma may have taken the love of my life physically from me but it cannot take his fighting spirit and our determination to educate others about it's silent deadliness. 

 

Cathy

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Carybaum's picture
Replies 4
Last reply 2/23/2017 - 4:45pm

Hello, fellow warriors. I am an American living in Hong Kong. I was diagnosed Stage IV in June, 2016 and have been on Nivo since July, 2016. It looks like we'll be required to move back to the US due to my job loss here. Is there anyone participating in the ACA Individual Marketplace insurance out there that is being treated with immunotherapy? What difficulties in coverage have you experienced? So far it's a bit of a nightmare trying to match network providers with plans on the Marketplace website. Telephone calls with Marketplace representatives have proven fruitless. Any info would be greatly appreciated. Keep fighting!

Regards,

Cary

 

 


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