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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Tim--MRF's picture
Replies 13
Last reply 12/23/2014 - 10:43am

The FDA just approved Opdivo, the anti-PD1 drug from BMS, for metastatic and unresectable melanoma.

Like Keytruda, approved earlier this year, this approval is for patients who have progressed on ipi and, if the tumor has the BRAF mutation, also progressed on anti-BRAF drugs.

Opdivo was granted accelerated approval based on response rates and durablity of response. I should have more data later, but this is great news that I wanted to share as soon as possible.

See the MRF's statement on this here: http://www.melanoma.org/about-us/news-press-room/press-releases/fda-approves-opdivo-advanced-melanoma

Tim--MRF

 

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Rosegargala's picture
Replies 7
Last reply 12/26/2014 - 1:14pm
Replies by: Rosegargala, Linny, arthurjedi007, Janner, Anonymous

My name is Rose and I am staged at stage 4 by an Rn but believe I am stage 3a !! I am searching for a phone buddy so that I can discuss my diagnosis and get the support I so desperately need ! I have 3 friends who have been diagnosed with melanoma but have only needed the surgery because none was present in their nodes ! Please contact me if you are interested in helping me ! It would mean the world to me to talk to those who are going through the same thing as I !!! THANK YOU SO VERY MUCH AND MERRY CHRISTMAS!!!

Roseyes

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Anonymous's picture
Anonymous
Replies 9
Last reply 1/9/2015 - 8:02am

I am trying to get my father to find a new oncologist.  Can you please back me up on this.  Dad diagnosed end of Feb w a 5.6mm ulcerated anal melanoma mass.  Dermal mitoses at least 8 per sq mm.  T4b lesion.  I can find no record of checking any lymph nodes.  Oncologist (Dr Pecara) recommended PET/CT scan and MRI of brain.  They were clear in April.  He called it Stage IIb melanoma, Access c kit Nras if recurs and follow expectantly.  In August he had a check up, no scan and asked for a PET CT scan before next visit.  In Dec he has the scan and of there melanoma nodules are all over his lungs.

I am not surprised from what I read, I was almost expecting this.  

 I do not trust this oncologist and cannot believe he is listed on the Aim at Melanoma website as being a specialist.  and need to get my parents to agree to see a melanoma specialist but it will be a fight.  Do you agree this care is less than acceptable?  

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laural10's picture
Replies 5
Last reply 12/30/2014 - 8:18pm

My father was just diagnosed in July with MM of the nasal passage.  He went through 3 surgeries to try to get to clear margins, unsuccessfully.  He is now undergoing radiation (6.5 weeks, five times per week).  He is three weeks in and the side effects are so brutal they might have to stop the treatment.  He has severe swelling, sores and bleeding in his mouth, nose and lips.  He has lost 15 pounds so far and is unable to eat other than Ensure and even that is becoming difficult.  We are afraid he will choke to death in his sleep from the swelling of his mouth and throat.  His radiation doctor said she has never seen side effects this severe before.  I was just wondering what your experience was like with radiation and if you are able to give any suggestions on what helped you get through it?

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Tracey R62's picture
Replies 12
Last reply 12/28/2014 - 8:25pm

I was dx with metastatic melanoma just a few weeks ago.  Subungual melanoma under my big toe and metastatic melanoma in 2 groin lymph nodes.  Going in for surgery jan 13th to remove the toe and all lymph nodes in my left groin.  I see so many confusing information regarding treatment.  

Has anyone here or anyone know anyone who refused treatments and just continued to watch and scan?  Has anyone gone through a treatment that had minimal side effects?  And what are the abbreviation mean- N.E.D,  post WLE, TIL therapy?

I need so positive and uplifting advice right now.  Thanks so much. 

Tracey

 

Tracey R62

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Bubbles's picture
Replies 10
Last reply 1/7/2015 - 11:26am
Replies by: rick1981, Anonymous, Bubbles, Cooper, arthurjedi007

Thought many of you would appreciate this information regarding the positive synergistic effects of radiation and anti-PD1.  Here is a synopsis an article just out:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/srs-combined-with-anti-pd1-makes-things.html

Here are a couple of older articles regarding the positive effects when radiation is combined with ipi:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

And Artie....YOU ROCK!!!  Happy holidays!  celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Rosegargala's picture
Replies 22
Last reply 12/23/2014 - 7:55am

 I had a 1.3mm melanoma with no clear margins removed from my left inner thigh area  I go to the Melanoma and Breast cancer center after my dermatologist refers me to them and then find out that the nurses giving me the info are not practitioners . I can not understand how having a microscopic ,encapsulated cell in my sentinel node and the other node was clear makes me a stage 4. She told me that if it was found in any of the 2 they removed she would have to move me from a stage 1b to a stage 4 This was before the pet scan was done !!!. I had a pet scan done on Dec. 4th and it came back completely clear! I asked how I could be stage 4 when it hadn't spread to any other areas of my body or distant nodes or organs! She said it was because they found it in my sentinel node ! I had no mitotic index and no ulceration! I am scared to death and have yet to be seen by an oncologist because my nurse says that they won't treat me until after my doctor goes back in to remove 3 or 4 more nodes although my doctor told her to make the appointment for me to see oncology and he even thought I had already been seen by one! I have seen my doctor only once since my surgery and he believes I am going to be just fine and says that I am going to live a very, very long time. I feel like he tells them to do something and they ignore him and do what they want to do! The nurse also tells me that melanoma is a very slow moving cancer but from what I have read it doesn't seem to be so slow moving to me! I need answers because I am going nuts! My primary has put me on xanex because my anxiety has completely shut me down! When you hear the word cancer you have no clue how long you have left and the thought of me being put on a timeline terrifies me. I have good days where I believe in my doctor and think I AM going to pull through this but I just have this sick feeling in my stomach because the lymph node dissection could not even pin point it as melanoma the first time so they sent it to Pittsburg where they said that it is consistent with melanoma and I wonder if it was really even that! They could not say it was definite just consistent !I really need some support because I just want to feel like me again and every time I start to I dissect what the nurse has told me and I get terrified! It's hard to be strong in front of my husband and kids but I HAVE to be so they don't get scared !

Roseyes

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/21/2014 - 1:45pm
Replies by: Anonymous

I'm getting small bits of information from my mother regarding my father's diagnosis.  His melanoma is now in his lungs so we are waiting on pathology so they can come up w a treatment plan.  Is there a separate support group for ano-rectal melanomas?

Thank you.

 

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Gene_S's picture
Replies 2
Last reply 1/30/2015 - 9:02pm
Replies by: Anonymous, arthurjedi007

Does anyone know how Mark is doing?  He was from Ohio near Akron and was going for a different treatment but I haven't seen a posting from him in a long time and was wondering how he is.

Judy (loving wife of Gene - Stage IV and now NED)

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

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/20/2014 - 9:32am
Replies by: Anonymous

Hello,

I am a Stage 1b patient 10.5 years post diagnosis. About 2 weeks I am having annoying migrating pain in my middle/upper back. It is less prominent in the morning, getiing worse in the evening, and is better/no pain at night.  I may have it between shoulder blades, so I want to streach, then it can move and throb in scapular area, moving to side rib. I can feel from time to time tension/spasm in the upper part. It is not stayng in one spot, but moves around, although sometimes is more prolonged close to medial border of scapular.

I am starting to freak out about it. Could such pain pattern be melanoma-related, coming from spine, bone, or lung  tumor???

 

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jenny22's picture
Replies 2
Last reply 12/20/2014 - 3:47pm
Replies by: BrianP, 5dives

Hi All-I promised myself I would try and take a break and not read so much, but i am having a particulary bad afternoon today.

As I am preparing for another surgery, and then a decision for next setps I find myself reading, and reading and reading....

I am most likley going to participate in a Vaccine trial.  But its so scary and disconcerting to read from some that vaccine trials havent really wokred, nor whons any clear data....only other options are Interfeon or IPI, whcih i am not sure about.

I would welcome any comments on the above, but also had another question.....i've read varying aritcles, abstracts, publications etc about the managment and prognosis of Intransit mets...

I've actually found a few that say, in the absence of LN involvement they have a better prognosis  than overal stage IIIB, and also have read the oppositie that they are worse prognostically.So, are stage IIIBs, equal?

All the Oncologists I've seen (Sloan, NYU, Mt. Sinai, UPENN, and Rutgers) all seem failry encouraging that this is still "beatable" ....or at least that i stand a chance to be hear a good number of years down the road.

I know i am  probably no different than anyone else here, but I can't seem to get that positive attitude just yet, and  still focusing on the negative and the overhwleming fears of what lies ahead.....

I would love to hear anyones thoughts on the IIIB/intransit question as well how to get that postive "mojo" going.

Thanks in advance and best to all.

j

 

 

 

 

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Rose2014's picture
Replies 7
Last reply 1/3/2015 - 10:19pm

My husband just had his first IPI (Yervoy) infusion yesterday.  They told him that side effects wouldn't happen for 3 or 4 weeks, but today he has slight flu like symptoms, enough to keep him in bed and no appetite. Maybe he caught a bug from his salad lunch at a restaurant yesterday or dinner, but it seemed like such a coincidence to be one day after treatment, that it seems like it has to be from treatment. When we called the dr office, they were doubtful it could be from the treatment.  Anybody else have side effects within the first day or two of first Yervoy treatment? Thanks for your help.

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Julie in SoCal's picture
Replies 14
Last reply 12/22/2014 - 1:00pm

Hi there friends,

It's hard to believe that I started all of this up again a year ago!  Last Christmas was such a mess! My recurrence and my mother's illness just left all of us tired and done.  So done that we skipped Christmas. 

But yesterday I had my 1 year since starting IPI scans and once again they are "perfect", "complete response" and "see you in 6 months".  I still can't quite believe it.  But my Rock Star Doc couldn't even find evidence where the intransit mets were and the biopsy sites are now soft and pliable (as opposed to hard and BB like before).  I am so grateful!

May you have a wonderful holiday season! Merry Christmas!

Julie

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI = NERD

Here's a picture of me and my friends celebrating. I'm in the white shirt and jeans. It is a happy day! 

Oh Happy Day!

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RGal's picture
Replies 6
Last reply 12/21/2014 - 10:43am
Replies by: jenny22, Linny, Anonymous, RGal, yazziemac

I posted the other day about my father. He was first diagnosed w Anorectal  has now returned on his chest wall.  Can anyone recommend a melamoma specialist in nj. He refuses to go to ny as much as I'm trying to convince him to go to Sloan but it's unlikely 

thank you. 

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yazziemac's picture
Replies 1
Last reply 12/20/2014 - 3:04am
Replies by: MattF

Hi all

My husband, Pete, had his gamma knife radiation two days ago and is doing well.  He has been given direction from the radiation team to wean off the dexamethasone over the next couple of weeks.  He was on 12 mg/day in November, went down to 8 mg/day last week, and will cotinue to decrease the dose.  Can you give me some idea of what to expect over this process?  What is normal and what should I be concerned about?  Thanks for your expertise in advance.

Yasmin

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