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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Nick C's picture
Replies 7
Last reply 12/26/2017 - 11:59pm

Merry Christmas to you all!

I started my trial on Monday (12 hours) with Keytruda and MGA271. No serious side effects, although I did get the chills (that went away with some hot tea) that could have been caused by a cool infusion. Returned 24 hours later for EKG and blood draws and 48 hours later for blood draws. I will receive a combo every three weeks and mono every week. First cycle is 42 days and cycles 2-6 are 63 days with a CT scan after each cycle. The nice thing is that we found this trial 10-15 minutes from home.

This is my new normal for the next year. I have adjusted my work schedule to 4 days a week ( about 6 months earlier than I planned anyway). Other than infusion related, the main side effect tends to be fatigue. So far, so good on that one. They did take me off some of the supplements I was taking, so we are now looking at other alternatives, such as juicing.

I know this is just the beginning, but I had the same concerns a year ago when I started Keytruda and never experienced any side effects. Hoping the same holds true this time.

I appreciate hearing how others are doing on their treatments, like Tex and Mike. It gives us all hope in our respective fights.

Stay strong and have a wonderful and joyful Christmas.

Nick


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adriana cooper's picture
Replies 6
Last reply 12/26/2017 - 11:54pm

I want to wish everyone here a happy holidays and that everyone here can be free from this horrible disease.  Although Adriana is free, I still feel its grasp on me. I find that I check in here most every day, I think hoping that I can be of some help to others or just for the conection to the community (family) here. My wish is that each of you can put  it behind you and never think of it again. I would like to share my strength and support to all who have lost a loved one or friend these past many years as well as those are fighting now. Also my special thanks to those that continue to help others on here even though they could just as well put it out of their mind. May you all be blessed to enjoy the memories and experiences you have and continue to make new ones. Love each other and hold one another tightly. 

                             Rob

                                             Happy Anniversary Adriana, I love you and Miss You

 

Adriana

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/26/2017 - 5:47pm

My Dad was just diagnosed with Melanoma.  His breslow depth is 1.1mm on the helix of his ear. Mitotic rate <1mm2. He is 57 years old.  He is scheduled for SLNB Jan 2, 2018 and MOHS surgery Jan 10, 2017.  Please ask for more information if you need it.

I am wondering if it is a high chance that it spread to his lymph nodes?  From what I am reading, it seems like a low chance, but I am just looking for more information, so I know what to expect.  Hoping for good news.  I know the waiting is hard, just looking for hope.

 

Thank you

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TexMelanomex's picture
Replies 4
Last reply 12/26/2017 - 12:58am
Replies by: MelanomaMike, Anonymous, lkb, sister of patient

Merry Christmas Warriors! I pray that 2018 will find all of us on the road to NED status and for more innovative ways to battle the enemy. Stay in the fight and take time to be thankful for what we have...most importantly (for those who celebrate Christmas) remember the reason for the season.

If I could I have only one Christmas gift it would be a cure for this disease and we would all share in it! You are in my thoughts and prayers...Warrior on!

Your battle buddy,

Tex

Tex

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MovingOn's picture
Replies 1
Last reply 12/25/2017 - 8:19pm
Replies by: doragsda

Scans (CT or MRI) usually show two dimensions for a tumor. Is it possible that a tumor would be changing in the z-axis and the scan wouldn’t report it?

Here is my situation: I have a swollen lymph node behind my ear which has tested positive for melanoma (recurrence). In September it looked like an acorn attached to my head and my scan showed it’s dimension as 10mmx14mm. Since then I’ve had 4 Pembro infusions. My latest scan still shows the dimensions at 10mmx14mm. However, I know the tumor is small because I used to be able to sit my sunglasses on it and now it’s completely flat behind my ear.

Hopefully my next scan will come up with a smaller size. The tumor in my parotid grew. Hopefully that is pseudoprogression. And I have two new swollen lymph nodes (neck and clavicle areas). Next Pembro infusion is Jan 4th (and also going to meet with a surgeon to see if there are options to consider in that realm).

 

All in all I’m still in a good mood for the holidays!

Merry Christmas and Happy New Year!!

2018 is a new year!

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Gene_S's picture
Replies 32
Last reply 12/25/2017 - 3:49pm

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

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MelanomaMike's picture
Replies 3
Last reply 12/25/2017 - 2:54pm

Merry Christmas Everyone!cheeky  Hi everyone, hope yer all feelin' okay & surrounded by friends and or Family, or hell, even being alone sometimes is just fine haha...Man this Pembro is making me tired & "blah" as hell!, im gunna talk to my Onco when i see her, thank you Sister Of Patient & one other {i forgot yer name!} for some advice, maybe a good dose of steroids will lift my butt up! i try my best {and succeed} to not sleep during the day so my sleep at night is on regular schedule so, i dont know if i should be doing this or just sleep my life away? i am on disability for the time being so, i dont know...Bottom line i guess i need to be gratefull that im taking a Imunnal Therapy and not a Chemo type, from what iv seen,  Chemo types are freakin crazy on the ol' body for some...Anywho, you all take good care and lets get this year under our belt and start another life in 2018, hopefully....Love ya guys..

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beans920's picture
Replies 11
Last reply 12/24/2017 - 10:31pm

After 27 doses of Keytruda and nearly a year of clear MRI/ brain scans and Pet/CT full body scans I have officially been removed from treatments.  Was a little nerve racking yesterday but when Dr. said your clean again and done with treatments my Christmas wish came true.  Lots of nurses and DRS. to thank and hope to see them only on a very limited basis.  Scans will continue every 3 mos. for awhile.  Its been a 5 year 3 mo. journey and hope its finally over.  Best wishes and Merry Christmas to everyone on this board you will always be in my thoughts and prayers.  Beans

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/24/2017 - 1:04pm
Replies by: Bubbles

Hello I'm Lorenzo and have a son 14 years old. We suspect in a very light way he could have a melanoma. The mole is In the arm
3 years ago, a brown mole he had become reddish. After this. Within a little months it become white. 3 years has passed and the mole has stayed white but he didn't tell us. He was 11 years old and didn't told about it. It is 4mm and symmetrical. However, when his arm is extended a line comes out of the mole. Thus line makes it asymmetrical when it's extended. There's nothing bad looking in the white-skin colored mole, only that if you look very hardly, you can see a very light dot in the center. We need some recommendations. Pediatrics doesn't suspect of melanoma. Thanks for your help
Lorenzo

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/24/2017 - 7:11am
Replies by: Anonymous, Janner

I'm curious... if you have a mole that starts changing, does that means it's ALWAYS been melanoma, or did it just turn into melanoma if it starts changing? Would that mean if you are watching moles carefully you'd be sure to catch melanoma early since you are sure of when it started changing?

also, will melanoma just continuously change? Or is there a point at which they stop changing and are just internally doing bad things. 

Thanks in advance!

 

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/22/2017 - 10:36pm
Replies by: Bubbles, ed williams, Anonymous, jennunicorn

  After 3 rounds of the opdivo-yervoy  treatment ( stage four)  my husband had to stop because of side effects. He was hospitalized for five days and taken off treatment until he gained some strength and weight back. He also was given steroids. When he returned for a scan three months after his hospital stay all tumors were still shrinking. No treatment was continued.

He returned for a scan this week and all tumors continue to shrink.

 I am so thankful that  the opdivo-yervoy are continuing to work.  He has stated that he does not want to start any new treatment of any kind.  I am just curious as to how long the tumors can continue to shrink with no treatment being given.  I know no one has that knowledge--I would just like some opinions and insight on what others may think!

 It would be my desire for him to take the maintaince part of this treatment but I do respect his wishes of saying no because now that he feels somewhat better he doesnt want to go through the side effects again.

 

Thank you all!

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murnaloo's picture
Replies 4
Last reply 12/22/2017 - 8:45pm
Replies by: murnaloo, slholmdahl, Anonymous, Janner

Hi all,

This is my first post here, although I have been reading the posts since my Stage 1B diagnosis in April 2016. No other forum has had such kind, practical and authentic posts, in my opinion.

I was just wondering how those of you diagnosed with stage 1 have carried on with your daily lives. How do you balance your diagnosis with sun safety? How do you keep from living like a vampire? How do you live with the fear of another primary or a recurrence? And, what do you do when you get really down about the diagnosis and how it has changed your life?

I was diagnosed with systemic lupus in 1982, when I was 12, so I hardly went in the sun for years. In my late 20s, I did start going in the sun more, as that no longer seemed to trigger my lupus, but I never layed out by the pool or got heavy burns. I lived in Texas, so avoiding the sun is essentially impossible, especially in the heat of summer when you want as little clothes on as possible. But, I hate hot weather, so I am not inclined to seek out the sun even without the lupus factor.

Since 2010, I have lived in London, where we don't see the sun that often, although when we do it is glorious! I had a mole on my right calf that caught my eye - I don't really recall why, but it was enough to make me go to my GP three times to ask about it. Each time I was reassured, including by one doctor who told me the mole was "cute and heartshaped." While I was visiting my parents in the U.S, I went to the dermo, who took one look at it and said it wasn't fine. I had the WLE within a week -- with no health insurance. Ouch.

Because I have lupus, the one thing I did NOT worry about was melanoma. No family history and I've never been a sun worshipper. Given my experience with the British health system, plus my concern that any day now I'll lose the health insurance I got in the U.S. after my diagnosis (it's through the ACA), I feel like a ticking time bomb, and I can't live like this. The short, grey winter days in London used to make me blue, but now my mood dips when the sun comes out.

I thought as time went on I'd get better, but I am getting more scared and anxious. I know we are all different people, but I wondered if you have any tips for dealing. This Saturday is an annual boat trip down the Thames with friends. It used to be the highlight of my summer, but now I'm hoping it rains and the trip gets canceled. I'll be coated in sunscreen, with clothes covering almost every inch, but the joy of the day is gone. This is just no way to go through life.

Thoughts?

 

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ajpeterson's picture
Replies 4
Last reply 12/22/2017 - 6:56pm

After a recent change of insurance companies in November, my infusions of Keytruda are no longer being covered. My Dr is switching me to Opdivo, which I've been told is very similar to Keytruda. I'm not thrilled about the change, partly because I'll be having infusions more frequently and I'm trying to maintain my job as a 3rd grade teacher.  Has anyone else experienced this transition?

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ThinkingPositive's picture
Replies 4
Last reply 12/22/2017 - 6:06pm

Hello, if you have not read this delightful essay by Dr. Gould, I hope it will lift you up!

https://people.umass.edu/biep540w/pdf/Stephen%20Jay%20Gould.pdf

 

Was lentigo maligna melanoma IIA on nose. WLE 10/30/17and graft 11/10/17. 

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