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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Nell's picture
Replies 2
Last reply 12/23/2014 - 10:31am
Replies by: Anonymous, Mat

I am stage IV.....mets in lung and liver. I had 3 infusions of Yervoy....had to forego the 4th because of colitis. I was thrilled when my first scans following the 3 infusions showed marked shrinking of the nodules in the lungs and the total resolving of a couple lung nodules. There was also an indication that several liver nodules were diminishing. There was no sign of new metastasis.  3 months later I was scanned again. There was no additional disease, but also no further diminishing......classified as stable.  Is it probable that I have received whatever benefit from Yervoy that I am going to receive?  Or is it possible that the Yervoy may yet continue to work to destroy more nodules? I of course had hoped to see less disease the second scan...naturally had hoped for NED....but I would like to hear from anyone who could shed some light as to whether I could expect further improvement after being stable last time.   I am grateful for stability, but as you all know, disappearing disease is what we all hope and pray for. Is it most likely that the Yervoy has done what it is going to do? I have scans again next month, and I am nervous and wondering. Thank you for your input....and bless each of you on this road with me.

One voice can make a song; one life can change the world.

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laural10's picture
Replies 4
Last reply 12/23/2014 - 9:56am

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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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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Rosegargala's picture
Replies 5
Last reply 12/23/2014 - 7:47am
Replies by: 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 7
Last reply 12/23/2014 - 6:23am
Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/23/2014 - 5:43am
Replies by: JustMeInCA, Anonymous, Rosegargala

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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Jsneathen21's picture
Replies 9
Last reply 12/22/2014 - 10:11pm
Replies by: Jsneathen21, Tracey R62, Anonymous, SABKLYN, JustMeInCA, MattF

I just learned today I have to have the sentinel node biopsy done... Can any body give me advice on this? As far as what are the side effects? How long is the stay? Or is it outpatient? I would like to know how it's effveted your treatment or outcome thank you so much

 

diagnosed with atypical spitzoid melanoma 

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Anonymous's picture
Anonymous
Replies 6
Last reply 12/22/2014 - 9:32pm
Replies by: Squash, Anonymous, Marianne quinn, Lil0909

I seriously made my new oncologist upset when they posted my CT results in my account before I had my appt to go over the results. I cancelled my appt based upon the stable results. I am IIIB positive ulceration, mitosis 18, one node positive. 18 mo out from dx. The new oncologist called on phone to blast me and said I would now go to chest X-rays only?! Is that the usual progression of watch and wait?

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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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Thankful_Heart's picture
Replies 1
Last reply 12/22/2014 - 10:39am
Replies by: Molly- CURE OM

have seen retinal vitreous Dr in home Pittsburgh   /  all they are offering is 'plaque' temporarily attached to my eyeball --  Radioactive 'seeds' =  Brachytherapy? OR certain Death  -- { all I wanted was a New pair of eyeglasses :(  } - At Least they Found this in time' -  thoughts anyone?  

 

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Tracey R62's picture
Replies 5
Last reply 12/22/2014 - 12:40am
Replies by: Marianne quinn, Janner, arthurjedi007, washoegal, Anonymous

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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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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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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Rebecca and Bob's picture
Replies 7
Last reply 12/20/2014 - 11:55pm

My husband had scans this week. 7 years Stage IV, 5 1/2 years NED. We found out he had Stage III melanoma when our two boys were 3  and 1 years old. Then a year later it was found in his lungs and intestine.  It has not been an easy road but hopefully sending this note will give others hope.

This has been the best Christmas news for us, no gift could compare. I don't visit this site as much as I used to but the people and this site helped us so much when my husband was first diagnosed.

Wishing everyone a wonderful Holiday!

Rebecca

 

Believe

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Gene_S's picture
Replies 1
Last reply 12/20/2014 - 10:23pm
Replies by: 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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