Home Forums Melanoma Diagnosis: Stage IV How long have you been Stage IV? How old are you? More ?s

  • This topic is empty.
Viewing 15 posts - 1 through 15 (of 41 total)
  • Author
    Posts
  • #21126
    BeccaLovesBrooklyn
    Participant

    I am 2.5 weeks into being newly diagnosed as Stage IV and I have questions!

    :?: When were YOU diagnosed with melanoma the first time?

    :?: How much time passed until you were Stage IV?

    :?: What kind of treatments have you had?

    :?: How long have you been at Stage IV?

    :?: How old are you?

    Six years ago I had a suspicious mole removed from my back that turned out to be malignant melanoma (skin cancer). Had a couple surgeries and then was told to have annual chest x-rays because if it (cancer) ever came back, it would show up in my liver, lungs or brain.

    This past Dec. 2012 I had a chest x-ray and they found a mass in my lower right lung. After PET and CT scans, biopsy and labs, it was determined on March 4th that I have Stage IV Metastatic Melanoma in my lungs.

    I am only 43 and a single mom to Brooklyn, age 9.

    We live in NYC and are going back to Kansas for a visit next week over Easter. While there, I will meet with Dr. Gary Doolittle, melanoma oncologist at KU Med/Univ. of Kansas Cancer Center for a consult. I will return to NYC and am going to have a comprehensive consult with a melanoma oncologist – Dr. Paul Chapman – at Memorial-Sloan Kettereing on April 1 to decide treatment. I am not a candidate for surgery because my cancer has spread into my lymphnodes and is inoperable.

    I believe in Jesus Christ and want to walk this journey according to His will.

    Thank you for being so giving of yourselves with your wisdom and advice on this forum and God bless you!

    Rebecca Pendarvis

    http://www.caringbridge.org/visit/beccalovesbrooklyn” class=”bbcode_url”>http://www.caringbridge.org/visit/beccalovesbrooklyn

    #59736
    erinmay22
    Participant

    – When were YOU diagnosed with melanoma the first time?

    o Diagnosed Oct 2010

    – How much time passed until you were Stage IV?

    o CT/PET and Brain MRI Nov 2010 showed No evidence of disease. CT scan Jan 2011 at Sloan showed 12+ nodules in my lungs (biopsy Mar 1, 2011 confirmed)

    – What kind of treatments have you had?

    o Lung nodules went away on their own. Was NED until May 2012 when met showed in small intestine. Did 4 months of Zelboraf (experienced growth), 4 rounds of Ipi (along with surgery in Oct 2012 – and in Dec 2012 had growth). Started Anti-PD1 trial Jan 2013. Scans week before starting trial showed growth (perhaps delayed response to Ipi?). First scans on pd1 will be April 12th to see if it’s working.

    – How long have you been at Stage IV?

    o 2+ years as Stage IV

    – How old are you?

    o 34

    #59737
    buffcody
    Participant

    When were YOU diagnosed with melanoma the first time?

    June 2012

    :?: How much time passed until you were Stage IV?

    Instantaneous. I was never at any of the other stages. First appearance in my right lung lobe

    :?: What kind of treatments have you had?

    Surgery to remove the lobe. Full Course of Yervoy infusions. SRS procedure to reduce two brain tumors.

    :?: How long have you been at Stage IV?

    9 1/2 months. One active tumor in my buttock

    :?: How old are you?

    72

    #59738
    jP_85
    Participant

    When were YOU diagnosed with melanoma the first time? – July 2001 aged 16 ‘thin’ mole removed from back. Regular skin checks and no problems since.

    How much time passed until you were Stage IV? – married and first baby born June 2012, had seizure November 2012, scans show 5 brain tumours, multiple in lungs, liver and abdo wall.

    What kind of treatments have you had? Had gamma knife late Dec 2012 for brain mets and started zelboraf early Jan 2013. Further brain scans showed response to gamma but 3 more brain tumours. Not yet obvious whether these started before starting z. Scans next week to find out how things are going.

    How long have you been at Stage IV? – 4.5 months

    How old are you? 27

    #59739
    msue5
    Participant

    I am 59.

    Diagnosed Nodular Melanoma 3 mm on lt thigh in Jan 2010

    SLNB Neg

    Dec 2010 Enlarged Lymph Node

    Jan 2011 Lymph node Dissection with no other + nodes

    Scans NED Till Oct 2012 then Stage 4 with pos nodes in Thoracic area

    Oct 2012 Vats and mediasteinoscopy but unable to resected completely

    Jan 2013 Cyberknife to Thoracic nodes-more pos nodes developed while waiting for Cyberknife

    Started Zelboraf same time as Cyberknife

    2 wks on Z then break due to esophagitis for 1 week

    Restarted on Zelboraf for 3 more wks then taken off due to 3 Squamous Cell Cancers that were excised.

    Pet scan shows regrowth (sm areas). Now being evaluated for Yervoy due to

    Lupus. Saturday found lump on rt neck size of robins egg so appt Tuesday.fine needle biopsy. Appeared overnight! I wish you prayers and luck. This has been quite a journey with 7 surgeries in less than 3 years. Family support is important but I can see you have that with your Mom’s posts.

    needle biopsy.

    #59740
    Chrisssie
    Participant

    When were YOU diagnosed with melanoma the first time? 1993 (mole on right calf)

    How much time passed until you were Stage IV? 5 years (1998) (lump on knee and in groin, both melanoma)

    What kind of treatments have you had? lymph nodes removed right groin and Interferon, 1 month high dose 6 months low dose

    How long have you been at Stage IV? 15 years

    How old are you? 63 (48 when dx stage IV)

    Chrisssie

    #59741
    Hstevens0072
    Participant

    When were YOU diagnosed with melanoma the first time? December 2010. Stage 2b

    How much time passed until you were Stage IV? Twenty five months

    What kind of treatments have you had? I did high dose interferon for one month and then low dose for eleven months. Currently I’ve had two infusions of Ipilimumab, next one it April 4th.

    How long have you been at Stage IV? Two months

    How old are you? 52. Married with three daughters, 24, 19 and 16.

    Met with an attorney today to get affairs in order…. Just in case……

    Holly

    #59742
    Dick_K
    Participant

    I was first diagnosed in 1998 with a mole on my cheek. Annual checkups were fine until 2009 when it metastasized to my lungs and I’ve been stage IV since then. In late 2009 I underwent unsuccessful treatment with Interleukin 2 and in March 2010 I started in the phase II clinical trial for Zelboraf. I’m now 66 years old and just passed the three year mark in Zelboraf trial.

    I’m sorry you have to ask these questions but happy you are actively attacking and will be having a good team working with you. Best of luck.

    Dick

    #59743
    Celeste Morris
    Participant

    Almost 10 years ago (2003) at age 38 (with then 10 and 12 year old children) I had a Clark level 4 (0.61mm) melanoma removed from my right back. Subsequent sentinel nodes showed one positive for melanoma to my right axilla, was followed by complete R ax lymphadenectomy and I was defined as Stage IIIB. 4 years later (2007)I had what was deemed to be a second primary (Clark level 3, 0.5mm) removed from my inner left forearm. Sentinel nodes to left axilla were clear, but had complete L ax lymphadenectomy anyway. 2 years later (2009) = “something” in Right upper lobe on scans, and since I am asthmatic…was thought to be related to that – “definitely NOT cancer”. April 2010 – bronch = positive for endobronchial melanoma; MRI of brain = 3mm met in R frontal cortex. 4/27/10 = stereotactic radiation to brain met. 4/30 = R upper lobectomy of lung. In October, throat felt strange despite clear scans…R tonsillectomy positive for melanoma. December 2010 – started anti-PD1 (BMS 936588, formerly MDX1106) with vaccine 30 month trial in Tampa at Moffitt. I have remained NED since that time and have only 3 months, ie one more infusion to go, in that trial. Short story (2013): 103 months since dx. 35 months since Stage IV. 29 months NED. 27 months in anti-PD1 trial. I am now 48 with college kids. There is hope!!! Hang in there!

    #59744
    pati
    Participant

    When were YOU diagnosed with melanoma the first time?

    may 9th 2008, stabe 1b (1.18ml)

    How much time passed until you were Stage IV?

    dec 18th 2009…

    What kind of treatments have you had?

    surgery, radiotherapy, DC vaccine, LOTSSSSS of surgeries, temodal, IPI, re-induction IPI, zelboraf, DC X IPI combination, anti-PD1 MERCK, now lined up to receive TIL in Amsterdam

    How long have you been at Stage IV?

    over 3 years

    How old are you?

    will be 43 april 28th 2013 while in the midst of TIL treatment, will celebrate in hospital!

    Pati

    #59745
    woollie48
    Participant

    son diagnosed 3c jan 2009

    stage 4 feb 2010

    neck dissection, surgery for local recurrance, dacarbazine, ipi, radiotherapy to neck, craniotomy, debrafenib, 2 craniotomies, lung lobestomy, radiotherapy to chest, stereotactic radiotherapy to brain, TILS,

    3 years 2 months

    16

    #59746
    Gilly
    Participant

    :?: When were YOU diagnosed with melanoma the first time?

    Nov 2008

    :?: How much time passed until you were Stage IV?

    stage 3 a year later and stage 4 nov 2012

    :?: What kind of treatments have you had?

    WE – Axillary Clearance – Ipi double blind trial (probably placebo) Combi V trial (Zelboraf arm)

    :?: How long have you been at Stage IV?

    3 months

    :?: How old are you?

    46

    #59747
    pastwinner
    Participant

    Diagnosed 3A, Nodular, 4.35 Breslow, November 2010, wide excision, CLND, one node positive

    Lung nodule first noted on CT scan November 2011, so stage 4

    Intransit axillary met removed March 2012

    Lung nodule watched and then removed by VATS November 2012, confirmed melanoma

    No other treatment.

    Currently NED, age 62

    Lear

    #59748
    Craig_G
    Participant

    1991 First melanoma removed from middle of back. No big deal, right?

    2005 2nd melanoma removed with 1st craniotomy

    2005 1st craniotomy followed up with Cyber-knife

    2006 Fail stress echo heart test – Atrial Fibrillation

    2006 Pass first and last kidney stone

    2006 Thoracoscopic surgery to remove 3rd melanoma

    2007 RF Ablation to fix Atrial Fibrillation Doesn’t work

    2008 Craniotomy to remove 4th melanoma on other side of brain

    2008 Another Cyber-knife

    2009 Cryosurgical ablation in lumbar to remove 5th melanoma

    2009 One hyperactive parathyroid removed

    2010 Varian tru scan radiation of two melanomas

    2010 Mini-maze heart procedure to fix A-Fibs. No luck. Permanent discomfort

    from this surgery, they nicked my phrenic nerve. Ow!

    2010 Radiated one more melanoma

    2010 Started clinical study with GSK 2118436

    2011 Long story shortened – hospitalize 4 times for 6 days or more each time,

    with Pneumonia like symptoms. Finally tobramycin was the answer to fix the

    symptoms; coughing fevers etc

    2012 Off GSK 2118436 – new tumors

    2012 3rd craniotomy, 2 more radiation treatments for hip and pericardium tumors

    2012 2nd clinical trial – BMS-982470 – fatigue not too bad

    2013 2nd clinical trial ends in Feb.

    I will be 60 in 2013. Still working as software engineer.

    So, stage 4 for 21 years

    Watching two tumors right now. They seem quiet. ;-)

    Just went to Hawaii and had a really good time!

    Good luck!

    #59749
    Catherine Poole
    Keymaster

    Wow your stories are all so amazing! I’m in awe of all of you. Thanks for sharing.

Viewing 15 posts - 1 through 15 (of 41 total)
  • The forum ‘Melanoma Diagnosis: Stage IV’ is closed to new topics and replies.