Pops110 Posted June 22, 2015 Posted June 22, 2015 (edited) Every families worst nightmare came upon us on Friday, My girlfriends sister was diagnosed with advanced stage melanoma. The doctor says it looks like stage 4 melanoma. The prognosis for stage 4 is not good. Seems to be more towards palliative than to curing this awful condition. My girlfriend and her sister are pretty close, so it has affected them both quite a lot as you could imagine. We had a big family dinner last and I must say that they are being super brave, and positive. I'm not sure that I would be handling it as well as them if it was me. She heads back to the doc tomorrow to find out when they can operate on her arm to get the primary out. There is a good chance she will lose her arm. I suppose I started this thread to hopefully get some advice, I'm sure that this has affected many people on this forum. So if anybody has been through this themselves or had a loved one experience melanoma, and if they feel comfortable enough to share their story, I think it could be of help to a lot of people. Please share if you feel comfortable. Has anybody had any positives from alternative medicine combined with specialized medicine? I have been listening to binaural beats that #djb asked about in the headphone thread. I have found them really helpful in getting a deep sleep and with trying to meditate. Could this help in her situation do you think? Sorry Joe but I may have to give the senns to her if it helps. I know that there is some amazing new drugs and treatments that have come out in recent years. Has anybody had any positives from any of these? Is there anything else we should be investigating? Thank you guys. I will be doing the City to Surf Marathon and raising money for melanoma research. I will post some links if I get the ok from Marc. Cheers Dave. Edited June 22, 2015 by Pops110
Saxon Hall Posted June 22, 2015 Posted June 22, 2015 Sorry to hear the news. Tough time no doubt, I can empathise without going into details. All the best to you all.
Guest Muon Posted June 22, 2015 Posted June 22, 2015 Apparently there is a woman pushing to have a drug for this available here, at an affordable cost. I can't recall the details. Though I think it is called called KeyTruda Melanoma drug....not cheap and that is why she is pushing for it to be put on the PBS. Anyway, really sorry of this news, and thoughts are with you guys.
Guest Muon Posted June 22, 2015 Posted June 22, 2015 Here is the petition for the drug to be available on PBS, might be good if folks sign. https://www.change.org/p/tony-abbott-please-don-t-let-me-die-of-melanoma-waiting-for-this-cancer-drug-to-be-approved-in-australia?tk=3-AWvxPgQ_mmLgamQkLi1P30w-ffiuPWSO14WD_KJFE&utm_source=petition_update&utm_medium=email
Luc Posted June 22, 2015 Posted June 22, 2015 Going through the same stuff too with my wife away at hospital dealing with one of my nieces and her sister's only daughter who has stage 4 cancer, just celebrated her 30th birthday and 6 months ago got married and the icing on the cake was her husband walked out on her a month ago stating he loved her but couldn't handle the stress of it all. Life is get down dirty sometimes. Brother recently lost to melanoma too, stage 4 is basically it really unless a miracle occurs. I wish you all the best.
Greenspeed Posted June 22, 2015 Posted June 22, 2015 (edited) Hi Dave, Sorry to hear this. The landscape of treating melanoma is rapidly changing. Exciting new class of drugs are available which are life saving (not curing the disease though). Keytruda (pembrolizumab) is available under MSD's compassionate programme for upfront treatment now. It will be zero cost in getting the medication. Keytruda belongs to a new class of drug called Anti-PD1 (anti- programmed cell death receptor 1). This class of new therapy is really exciting and high responsive rate as well. I am not aware of any real advantage of removing primary site if the disease has spread, unless it's a singular brain metastatic disease. She might be offer Yervoy (anti CTLA 4) but getting anti-PD1 therapy will be more advantageous. Less nasty side effects compare to Yervoy. The overall responsive rate is higher with anti-PD1 the Yervoy. By the way, if the histology hasn't been done, it needs to be tested for BRAF mutation too. About 30-40% are BRAF V600 positive. This be will very respositive to BRAF/MEK therapy. I.e. Dabrafenib and Trametinib. Hope that help. All the best. Edited June 22, 2015 by Greenspeed 1
Pops110 Posted June 22, 2015 Author Posted June 22, 2015 Thanks for the kind words fellas. It really is a tough time. The amount of people and families that cancer affects is crazy. I think we are all touched by it in some way. #Luc sorry to hear about all of your troubles, sounds like your having a rough trot at the moment. If you need to talk, send me a pm or give me a bell, always here mate. # Greenspeed thanks mate. I have passed that on and will do a little research myself. Her specialist is supposed to be one of the best in Perth, so she is in good hands. Do you mind me asking? Are you a doc? Or knowledge from personal experience. #Yamaha Man I will be giving her the Senns and some binaural beats to see if it can help her sleep etc. Sorry mate, I will make a donation to Sna for stuffing you round. Will try to give you a call soon. Cheers Dave.
Greenspeed Posted June 23, 2015 Posted June 23, 2015 Hi Dave, Not a doc but in the health sector dealing with cancer patients everyday.
Pops110 Posted June 23, 2015 Author Posted June 23, 2015 Thanks mate really appreciate your sharing. She is seeing the doc now. Fingers crossed, we are hoping for the best. Cheers Dave.
Gordon Macfarlane Posted June 23, 2015 Posted June 23, 2015 Dave my thoughts are with you and your family . 1
ThirdDrawerDown Posted June 23, 2015 Posted June 23, 2015 Dave, I'm sorry to add to this depressing roll call when you are looking for hope but I am another one who has lost a friend to this cancer. We take what we can: with the new drugs he got an extra year that was unexpected for all and allowed his grandsons to enjoy their granddad for a larger part of their lives. That was 2010 and the drugs have improved even since then. By the way, Peter McCallum fouled up and should have taken blood and tissue biopsies when they declared remission. Instead they relied on visual. If ever offered a choice, take the invasive test regime. Indeed, demand it. Don't let them be lazy or complacent.
Guest Muon Posted June 28, 2015 Posted June 28, 2015 A little light. https://www.change.org/p/tony-abbott-please-don-t-let-me-die-of-melanoma-waiting-for-this-cancer-drug-to-be-approved-in-australia/u/11216459?tk=cPv9Y5FY_yjABTtrb-yoPhtrVJovHovxuY_Y8ZycqiU&utm_source=petition_update&utm_medium=email
Darren69 Posted June 28, 2015 Posted June 28, 2015 Sending my positive vibes mate, here if you need a vent. I hope the Gods smile this time. She is in a loving and supportive family. Also a reminder that we should enjoy life and stop sweating the little stuff as we never know what is ahead. 1
Telecine Posted June 28, 2015 Posted June 28, 2015 Keytruda will be available on the NHS from September. I wish you and your family well. 1
Pops110 Posted July 6, 2015 Author Posted July 6, 2015 (edited) Thanks fellas. Sorry I haven't replied for a while, things have been pretty hectic as you can imagine. With the kitchen renos and dealing with this I think were all a bit exhausted. We had the best possible news the other day. They have taken out the primary, it had a depth of 7mm. They are classing this as stage 4. The scans haven't been able to pick up where it has spread to. The oncologist was quote amazed that it hasn't spread. He is optimistic that they can control this and get on top of it. She is seeing the oncologist again on Tuesday. #Greenspeed I have passed along the info you gave to me and she is going to follow this up with him . I will be doing the Perth City to Surf full marathon to raise money form the Melanoma Institute. They help and support they provide and the research for finding cures, vaccines etc is very costly as you can imagine. So I would like to do my bit to raise some money. If anyone would like to support me I would really appreciate it, please find the link to my fundraising page attached. https://chevroncitytosurf2015.everydayhero.com/au/david-2 Cheers Dave. Edited July 6, 2015 by Pops110 1
Darren69 Posted July 6, 2015 Posted July 6, 2015 @@Pops110 no linky mate. Once it's up I will certainly be contributing.
Pops110 Posted July 6, 2015 Author Posted July 6, 2015 Thanks Darren, I cant seem to be able to post a link. will try again tomorrow. Thanks for the support mate. Cheers Dave. 1
Pops110 Posted July 6, 2015 Author Posted July 6, 2015 https://chevroncitytosurf2015.everydayhero.com/au/david-2
Pops110 Posted July 6, 2015 Author Posted July 6, 2015 (edited) Thank you so much fellas. It really means a lot to me, knowing I have the support of people that I have never met, but that I can call friends. 😄😄😄 Its a great community SNA. I love being a part of it. It's only 42 kms. 😜😜😜ðŸ˜ðŸ˜œI'm hoping for sub 4 hours, but will be happy to finish and raise a whole heap of money, but also awareness. I work in the construction industry, were in the sun all day. My work has got onboard so should be good. Cheers Dave. Edited July 6, 2015 by Pops110 1
Darren69 Posted July 6, 2015 Posted July 6, 2015 21 years on bridge construction and still like watching the big stuff go up. A lot of safety stuff around now though. Hope the run isn't to hard on you, I find running really hard going, I have found.
Pops110 Posted July 26, 2015 Author Posted July 26, 2015 Hi everyone, The missus sister is holding up really really well, she is such a strong and positive person. She will be having another round of tests this week which will determine the course of action they take. Although the prognosis is not great, she has had a few positives so far, so we hope these tests will be the same. Thank you to everyone that has been supporting my Marathon for the Melanoma institute. I have raised $1280 with another $100 cash this weekend that I need to get online. Training is going well, made my longest distance today. I urge everyone to get down and get their moles and skin checked ASAP . 3
Pops110 Posted August 29, 2015 Author Posted August 29, 2015 Hi guys, So it's the morning of the big run. Not sure I'm ready but will be giving it my best. Been training fairly hard, eating well and been " off the grog" for 14 weeks now. SoI'm ready to rock and roll. The missus her sister and the kids will be at the finish line cheering me on, I think it could be quite emotional. I have raised just over $2000, with some more money still to come, so hopefully can get the total up to $2500. Thankyou sooooo much to everyone that has donated, really appreciate it, it has motivated me to finish. Don't forget everyone, please go and get your skin and your moles checked, early detection is a life saver. See you at the finish line. Cheers Dave.
A J Posted August 29, 2015 Posted August 29, 2015 Good luck go well !!! Sent from my iPhone using Tapatalk
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