Home Forums For Caregivers Only My sister Ann

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  • #22374
    Thomvdv
    Participant

    My sister got a melanoma when she was 25.

    Two years later, she got a new tumor on the same place, 6 months later another one on the same place and again 6 months later, july 2013 she had mets in her liver (3 big ones), pancreas, ovaries, stomach, glands, vessels and important arteries. She had less than 3 months to live.

    Unexpectedly she got to start the trail of dabrafenib/trametinib in August 2013. Now, 20 months later she has 90% less tumors, few to NONE side effects. Last week it was confirmed she was still stable.

    #66431
    Thomvdv
    Participant

    maybe it can be helpful for others?

    Sister – Ann (15/03/1985)

    Diagnosed

    Stage 1 – 2004

    Stage 2 – december 2010

    Stage 2 – may 2011

    Stage 4 – July 2013

    Leuven, Belgium

    Doctor – Dr. Wolter

    History

    (to be reworked)

    2004 First melanoma right leg. Big exercision.

    2010 (december) Lump found on the same place; removed.

    2011 (may) Again she found a lump on the same place; they removed it. But did a bigger excersion to have a bigger margin.

    2013 In January she had an infected pancreas. We ended up the emerency, they did a CT-scan but there was nothing to see. In April she went for her 3 month echo’s and they were all clear. With her echo’s in June she was diagnosed with metastatic melanoma: 3 big tumors in the liver, a big one in the pancreas, stomach, several glands and vessels and the biggest on her ovaries.

    Treatments

    2004, 2010, 2011: surgery to remove melanomas, tumors in the right leg and bigger excersicion.

    August 2013: unexpected 2 spots came available in the combination dabrafenib/trametinib. She has been on it ever since.

    total of 150mg drabrafenib and 2mg tametinib (2 times a day).

    pills MUST be conserved in the fridge.

    8am: no eating or drinking – soberness till 11 am

    10am: 75mg drabrafenib and 2 mg trametinib

    11 am: can eat and drink again

    8pm: stop eating and drinking

    10pm: 75mg drabrafenib

    11pm: can eat/drink again

    Side-effects: (only in the beginning, nowadays little to none)

    – tiredness

    – infections of the fattissue in the legs (lumps, feels warm and like a bruise)

    – heavy legs and joints (rare) — CRAMPS now

    – high bloodpressure (region 15/10), gets medication for it if her kidneys can hold it) — FINE now

    scan – 11/20/2013

    Everything but the liver and ovaries disappeared. But they had shrunk 40%. Liver now only has 1 tumor.

    scan – 17/01/2014

    All tumors are stable, reduced 2mm.

    scan – 14/03/2014

    All tumors are stable, reduced again 2mm. (The onc said “stable” but 2 + 2 = 4 mm so it’s still going down!)

    Plus since 2 weeks energy level back to normal again since august 2013, side-effects have been reduced to nothing, except high blood pressure.

    scan – 9/05/2014

    All tumors are stable, reduced some mm.

    There was a panic because the radiologist reported a “grey zone” on the liver next to the small tumor. So extra echo’s and extra CT-scan but all came negative!

    scan – 4/07/2014

    All tumors are stable, liver reduced 4 mm. So that leaves with one small measurable tumor on the liver and a small one on the ovaries.

    LDH were a surprisingly 98.

    Blood pressure is back to normal level, tiredness is back though but not too severe. New sideeffect: legcramps

    scan – 29/08/2014

    All tumors are stable. Onc talked about cyste but i’m thinking he means cyste-like characteristics for the tumor on the liver. Tumor on the ovaries changed shape but was a bit smaller. He talked about she still being in remission.

    Blood pressure was a bit up (but guessing it was scanxiety), tiredness, legcramps and inflammation of the fattissue.

    We are 56 weeks into treatment.

    UPDATE: we got a message scan are now moved up to every 3 months instead of 2 because we have hit one year

    scan – 21/11/2014

    all stable!

    UPDATE: because she had minor headaches for 4 weeks they had a scan of the brain: all clear!

    scan – 13/02/2015

    all stable!

    NEXT SCAN: 8/5/2015

    #66432
    tbeau
    Participant

    Thom:

    Thank you for sharing this story. It gives so many people on this forum hope. Your sister Ann has been through a lot and is very lucky to have such a caring brother. Very happy for you and your sister!

    Thank you.

    #66433
    Catherine Poole
    Keymaster

    Thom,

    This is a great story, thanks for sharing. Maybe you could also post it on the stage IV forum. Hope things continue in a positive way for your sister and you! She’s lucky to have you looking out for her.

    #66434
    Thomvdv
    Participant

    ok, I will Catherine!

    #66435
    Thomvdv
    Participant

    Having new scans on July 31, month 27. She still is going strong so we are full of hope the scans will second that.

    #66436
    Thomvdv
    Participant

    sister is still doing great. full faith and hope the scans of July 31 will second that. but she is feeling depressed lately; nothing excites her, doesn’t want to do a lot, cries sometimes, wants to stay in bed all day… She has a hard time with having no perspective. Should she plan things? And if so, what can she plan? She has a hard time visioning her future, or *a* future… on top of it all her psych is on a holiday… don’t know what to do but to plan nice things and hoping to have her son for a few days….

    #66437
    Catherine Poole
    Keymaster

    You are truly a wonderful brother. Your sister is showing serious signs of depression and she should get treatment from a counselor. It is treatable and it is normal to have when you have experienced the life and death threat of melanoma. It is tough, but can she try meditation? (jon kabat-Zinn) is the best and has put out CDs she can listen to. The idea is to live in the moment and not be in the “doing’ mode all of the time. Mindfulness meditation clears the burdened mind. I hope this helps and she might consider antidepressents too. Your support is invaluable to her!

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