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

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    How do some of you keep going? I know you have too, but the thought of going back into hospital so soon, leaves me feeling worn out and my list is not as long as some of you. Ippi for the day is fine, apart from the down turn this time, which I put down to myself, the first course was fine. The next one is 17th May, and I have a nice week away prior to, so I will try not to over indulge :D

    Apart from the new drugs or treatment we are trying at the moment, I feel like charting some of this data, where it would get me I don’t know, as it would appear we are all on different journeys.


    These are really interesting replies. On behalf of my father:

    When were YOU diagnosed with melanoma the first time?

    – November 2012

    How much time passed until you were Stage IV?

    – Diagnosed at Stage IV

    What kind of treatments have you had?

    – Nov. 2012 craniotomy to remove initial tumor in skull (not brain); NED through surgery; Jan. 2013 radiation to surgery site. March 2013 scans showed liver and bone mets. April 2013 palliative radiation to spine met; April 2013 1 dose ipi. About to sign consent forms for MK-3475 trial.

    How long have you been at Stage IV?

    – 6 months

    How old are you?

    – 76


    When were you diagnosed with melanoma the first time? March 2004

    How much time passed until you were stage IV? 6yrs 8mos

    What kind of treatments have you had? Thoracotomy, Ipi, radiation to right lung.

    How long have you been at stage IV? 2yrs 6mos

    How old are you? 50



    When were YOU diagnosed with melanoma the first time? May 2006 @ age 62

    :?: How much time passed until you were Stage IV? til Feb 2007

    :?: What kind of treatments have you had? Multiple Surgeries, Il-2, Gleevec

    :?: How long have you been at Stage IV? Since at least Feb 2007, and never NED.

    :?: How old are you? Now 69.

    I have a friend that has been stage IV with repeated metastasized tumors since the mid 1990’s.

    Be vigilant, don’t automatically give up! 8-)


    In March 2007 they found innumerable lung tumors. After IL-2 stopped working in Dec 2008 they found innumerable new tumors and the old tumors went into overdrive as well as several new tumors being identified in distant locations. still have innumerable nodules in both lungs but they are essentially stable since late March 2009.


    My name is Linda, I’m 56 years old.

    I was diagnosed stage IV in June 2012. No primary melanoma found.

    Treatment : Zelboraf since August 2012, almost ten months now and still continuing.

    Last scan results are very good : no evidence of disease anymore, which is very good news.

    The side effects have been severe and painful at times especially in the beginning, but I have experienced that the longer you take the Zelboraf, that the side effects become more tolerable and less painful.

    I am so happy to post this hopeful news because that’s what we all need !


    When were YOU diagnosed with melanoma the first time?

    July 2011 stage 3c

    How much time passed until you were Stage IV?

    March or April 2012. So 8 or 9 months.

    What kind of treatments have you had?

    Surgery to remove initial tumor on lower leg and to remove nodes from groin and lower abdomen in July 2011. Then surgery to put it all together the following month. IL-2 in December 2011, nearly killed me. Curetech’s anti PD-1 somewhere in between here. Zelbroaf from April 2012-November 2012. Did the 4 doses of IPI starting in November 2012, just did my first maintenance dose last week.

    How long have you been at Stage IV?

    A year and a month or two

    How old are you?



    When 1st diagnosed: 1975, mole on front of right ankle. Removed surgically, 5 layers, huge hole. Lymph nodes removed in right groin. Said they got it all, no treatment. No mention of stage back then.

    How much time passed before diagnosed with stage IV: 35 years! 8/2010, knot behind right knee, removed surgically and was malignant mel. Pet scan revealed at least 7 mets in lungs, 2 on liver and 1 in right groin.

    Treatment: biochemotherapy w/ IL2+, bad reaction, almost died. Went to reg. Chemo, 6 treatments. Mri revealed 2 brain mets, gammaknife, nodes removed in right pelvis area, another brain met, gammaknife again, didn’t work, craniotomy, started Zelboraf 5/2011, all tumors shrinking, another brain met tho, 8/2012, another craniotomy, continue Zelboraf. 9/2012 scans show NED!

    2 yrs on Zelboraf and 9 mos. NED, My Dr. finally reduced my dose from 8 per/ to 6 per/day, hoping for reduction in side effects and continued NED.

    I am 58 and my name is Susan

    Good luck to you and please remember ATTITUDE IS EVERYTHING! I know it sounds hokey but that and prayer are key. Don’t ever give up!


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

    May, 2008 – mole on my left forearm

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

    5 Years. Now have mets in lungs, abdomen & spleen and new 6 mm in right Occipital lobe of brain

    :?: What kind of treatments have you had?

    wide excision of left forearm and radical left axillary lymphadenectomy 5 years ago. I was supposed to begin BMS Phase 2 Yervoy/Nivolumab sequential combo trial yesterday, but my latest brain MRI shows a 6mm met in brain, so SRS will most likely take place next week with trial hopefully beginning in 6 weeks if all is clear

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

    2 months.

    :?: How old are you?



    Seeing Susan’s post about the 35 year gap between her Stage I melanoma and Stage IV leads me to post a speculation I have had for sometime that no doctor would ever be able to affirm (or deny?). When I was 15, 56 years before the appearance of my Stage IV melanoma in my lung, unknown primary, first coming, I had been operated on with a radical lymphendectomy for suspected cancer. All axillary lymph nodes on my right side were removed because the surgeons were sure I had cancer, probably Hodgkin’s lymphoma. As one might imagine the state of the art of biopsy was very primitive. I think the only way to deal with Hodgkin’s in 1956 in the very, very early days of any systemic treatment would have been resection anyway. Amazingly, no cancer was found on analysis. But did they even think of melanoma? Would they have? None on my skin. Fast forward to 1993. My nephew (on the melanoma prone side of the family) presents the same axillary symptoms I do. No clear primary but this is diagnosed as melanoma Stage 2 or 3. Two years later despite interferon he is gone. Can melanoma hang around in the body if one has a strong immune system response to it suggested by the fact that I might have been dealing with it for 56 years? A question obviously I will never get answered this side of heaven. But that’s my hunch. And a year into treatment, I’m more than holding my own, with a good reaction to ipi and a fairly successful game of whack-a-met.


    In respose to buffcody, that is extremely interesting. The 1st melanoma was definitely a mole and in 1975 they were just becoming aware of the horrors of skin cancer. 34 yrs later, I was having shortness of breath and went thru every test they could think of short of ct scan or pet scan do to my shortness of funds. They found absolutely nothing wrong. That was in 12/2009 Extremely stressful time in my life and 6 mos later found a knot behind my right knee, no mole or any other visible sign. They removed it and already stage IV. This was on the same leg as the mole. They never did decide if it was a reoccurrence or new. I think it was sitting there the whole time. They removed the lymph nodes in my groin way back then because at that time they thought it only traveled through the lymphatic system and not the blood. In fact, for several yrs after that they allowed me to donate blood! I can’t remember how many but how scary is that, I may have contaminated someone else!!

    All that time in between I had regular checkups at the dermatologist and I was cautious but I still was out in the sun a lot.

    Makes me wonder about early detection methods. I wish insurances would pay for yearly pet scans, think how many lives could be spared let alone the money they would save!

    Athough this has been a very hard journey, it just fascinates me how it develops and the research and treatments. Thx for sharing all your experiences.

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