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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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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jenny22's picture
Replies 10
Last reply 2/23/2017 - 7:00pm

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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BrianP's picture
Replies 6
Last reply 2/23/2017 - 7:00pm

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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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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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keepthefaith11's picture
Replies 3
Last reply 2/23/2017 - 5:44pm
Replies by: debwray, jennunicorn, Anonymous

Quick background. My dad was diagnosed with stage 4 melanoma back in July. He had 13 tumors in his brain which were discovered because of the seizure he suffered.

He went through whole brain radiation, which was the only treatment they would do in his home of Sweden. They only do gamma knife on four or fewer tumors. I was firmly against this but we were left with no choice. Two months after diagnosis he had another seizure and two months after that yet another one.

He got through five infusions of opdivo before developing diarrhea and it had to be discontinued. In December he got really ill with the flu and was hospitalized. Ever since then he has been deteriorating. Last week he started running a super high fever and his blood pressure plummeted and pulse went up to 180. He was rushed to the emergency room and they suspected it could be sepsis. They are still not sure if it were but either way he was in bad shape. He came back from that and it's stable now.

His overall condition is now to the point where he is unable to move, sleeps most of the time, and it's pretty much in a daze most of the time when he's awake. He does have moments where he is completely on and will respond clearly and talk. It is like he drifts in and out of awareness.

This is mind-boggling to the doctors since the latest pet scan and MRI shows disappearance of two lymph nodes in the abdomen and brain scan shows disappearance of many tumors and 50% shrinkage of the others. He has been on TAF/MEK the past six weeks. We are all wondering how he can be acting so completely sick when the cancer has gotten so much better. They are discontinuing the anti-seizure medication to see if that could be part of it. They have done all tests on pituitary and thyroid function as well as Vitamin deficiencies.

The latest brain scan did show damage in the white matter of the brain and it looks like fluid is not flowing properly. So today he ended up having a spinal tap and pressure check of the brain. We have not heard back yet. They will put in a shunt if the tests show issues in that area.

The doctor is talking about possible brain damage from immunotherapy which to me sounds completely unrealistic. Looking up the odds of the severity he is experiencing being from immunotherapy it's pretty much unheard of from what I've read.

What do you guys think? Has anybody heard of white matter damage in the brain with brain tumors? Or what could be causing this?

It is so incredible that he has responded so well to the cancer treatment and cancer is not our worry at this point. All the other issues are. We would be on cloud nine with these kind of scans if it weren't for the fact that he pretty much acts like a physically handicapped person with dementia.

Any help will be appreciated!

Annie

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snow white's picture
Replies 43
Last reply 2/23/2017 - 5:40pm

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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Hriggenbach's picture
Replies 4
Last reply 2/23/2017 - 5:08pm

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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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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Anonymous's picture
Anonymous
Replies 8
Last reply 2/23/2017 - 5:00pm
Replies by: J.bun, Janner, jennunicorn, Anonymous, 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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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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Aaron's picture
Replies 6
Last reply 2/23/2017 - 4:32pm

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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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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