My advice Get yourself a pair of Nikes and Just Do It, but be smart and don’t do it in the middle of summer, just imagine how hot the bitumen will be. I have lung cancer stage 4and was given 6 months to live. I bit the bullet and left a 30 year relationship. Everyone but me could see I was being totally controlled and isolated by a domestic bully. I have now passed my use by date by over three years and I can honestly say they are the best three years of the past 30 years, because I am living not dying or wishing my life away. I understand your need to break free and just be you for a time. I have done it and it is well worth the sacrifices and in my case has certainly prolonged my life in a good way. best of luck ...xxxx ... View more

Hi CiennaR, hope you are well. When do you start your new treatment? I realised I am very silly for some reason I thought this site was a local one and did not realise I was speaking to someone in the US. I live in Brisbane, Queensland, Australia. Where are you? I am waiting to see if I have been accepted for a new trial, my biopsy etc has been sent to the US. The trial required 650 participants from 300 locations world wide, if approved I am the only one from my City. It is a random selection. It is a study to compare AMG 510 versus Docetaxel. From what I have read Docetaxal is a Chemo with all the horrible side effects, baldness, nausea, anemia, lethargy etc. just when my hair has grown back and been styled to a length I love😂 but it is only hair and no good to me if I am dead. I have heard if I paint my toenails and fingernails black, thereby blocking the light they will not fall off! I am 66yo female  and consider black nail polish to be worn by trashy girls but my daughter assured me today it is considered rather  chic! Have you heard of this? I am very fortunate and do not pay for my cancer care or any of the associated medical costs. I had paid for top level private health insurance for over 40 years but was admitted through AE in a public hospital. I cannot fault the treatment I have had. Like you my Oncologists meets with a team of health care specialists once a fortnight and they discuss each patient. I have also learned if you are on a trial you are even more carefully monitored and every detail recorded. I consider myself to be very blessed to have the opportunity to go from one trial straight into another. Depending on which drug I am given I expect to be rather ill for a while so since last Thursday I have been trying to get all my ducks in a row. My first priority was to make sure I have gifts for my Grandsons for Christmas, I had bought these already but weakened and have already given them to them!🤷‍♀️  If I could bottle the pleasure I felt when my four year old grandson threw his arms around me and lisped “oh Grandma you spoil us”. It is what my living is all about. Everyone has a different reason I am sure. Mine is the joy on the faces of two little 4&5 year old boys. When I am with them I don’t even think about my cancer. I am however now an expert on every pup in paw patrol!😂😂 I have a govt funded home care package to encourage and support people to stay living in their own homes instead of moving into nursing homes. My package gives me up to 9 hours help at home per week. I am starting tomorrow to have someone come in for two hours twice a week to clean, cook, shop or just sit and talk, whatever I want and I have now organised through this scheme a podiatrist to come to me every six weeks and a remedial masseuse to come once a week. Up until now I have managed on my own but with the pain it has at times been a struggle and I often don’t take my pain relief because I need to drive. I believe our government is very generous and I am very thankful to have a package allocated to me. Do you get help at home? Even with your husband, there must be times when an extra hand is needed. please keep in touch and let me know how you are going...xxxx Brogsie   ... View more

Hi CiennaR, I too am not sure how or where to post on this site, I find it confusing to use. I am thrilled you have been given the opportunity to try a new treatment. I hope and pray it works for you. I was amused by your attitude referring to the prospect of another collapsed lung. How our acceptance of such terrible things changes as we fight to survive. I am to start in a fortnight or so a Chemo trial, it is a random selection of one or two Chemo treatments administered every three weeks. My participation will depend on my biopsy results to be sent to Singapore🤞🏻I will be leaving the RBWH and going back to  the Prince Charles. I have the same Dr and have a great deal of faith in him. Thanks to him I have already been given more than three years more time. Like you I will settle for time and try to use it wisely. I don’t put off today what can be done tomorrow, instead I try to make the most of every day, but if my body tells me to sleep, I also do that. I live alone and have not taken up my home care package for home assistance but feel it is now time. I like to be independent and find it hard to ask for help. I am blessed to have three amazing adult children who will help if I call. I think for me it is important my children remain my children and don’t become my carers, I feel the same about my friends, I value their friendship and want them to visit me and not come to clean my apartment. sorry, I am rambling on a bit...oops!😂 Stay strong and positive, my very best wishes...xxx Brogsie ... View more

Dear NotaBergen, Thank you for replying to my post. today I learned Nivolumab was no longer working for me so my trial ceased. Without treatment I have months not years. I am hopefully going to start a new trial if I meet all the criteria in two or three weeks time. Like you I am not a lover of the roller coaster! I hope you are getting positive treatment. I was really sad to hear your treatment had caused you heart related problems. Please continue to post how you are doing. until soon brogsie....x ... View more

ThanK you for your words of wisdom MyheroCoolSpy, normally I am that person, but today the news was not good. Maybe tomorrow after I have had time to absorb all the oncologist said I may be able to stand up, dust myself off and prepare to fight again. Your words give me inspiration...xxxx ... View more

Thank you I hope you have a good and positive outcome on Thursday, I will be thinking of you....xxxx ... View more

Hi CiennaR, Thank you for sharing your story with me. I had my CT scan yesterday and will get my results next Thursday.🙏🏻🤞🏻. Over a year ago my Oncologist congratulated me and said by the size of my tumour I was no longer terminally ill but instead I was chronically ill. Now my tumour has grown I guess I am once again terminally ill. How do you cope with the roller coaster of living with hope and then having it dashed away? ... View more

Everyone I meet has a cure. They mean well and want to help. My advice stick to one professional first and politely thank everyone else. When and if your chosen Dr’s method ceases to work then look elsewhere. I was given six months to live in 2017. The eagle feather with the crystal bound to it with leather thong is very nice but used more as a decoration than a cure.😂 ... View more

Hi Notabergen I have just joined the forum and read your post with interest. I hope you are still doing well. I have been on a2 year trial of Nivolumab   since July 2018.  Because of COVID-19 and because I was having such a good result my trial was  suspended so I was not attending the hospital and putting myself at risk. I was advised  to stay home, no one in, no one out as far as practicable. I usually have a ct scan every 12 weeks but it was decided to skip one and stay home. When I had my next scheduled ct scan I discovered that my tumour (nsc lung cancer) stage 4 had grown back to almost the size it was in July 2018. So back to where I was 18 months ago. I resumed treatment immediately and am due to have my next scan in three weeks. I am having lots of new side effects and the old ones (joint inflammation) is increasing with each treatment. Have you suspended your treatment at any time? If so what was the result?  I believe I cannot have anymore Chemo and if the Nivolumab ceases to work I would be interested to know if there are any other treatments available to me. I look  forward to learning anything you have to share. thank you Brogsie ... View more