bluekarin Posted March 30, 2016 Share Posted March 30, 2016 My daughters friend was diagnosed with this last year just around her 18th birthday. Today she has told my daughter that the chemo isn't having any effect on the tumour in her buttock She specifically has sarcoma myoleiosarcom and due to the late diagnosis it was stage 4 and had spread to her lungs and lymph nodes at diagnosis. She has been offered other treatments, but they are unlikely to work on the lumps in her lungs or because the chemo isn't working. Am I right in thinking the drs would be making sure she is comfortable now, so more palliative type care, rather than treatment? I need to know just how much support my daughter and her friend are going to need, especiallly now, and if I should be preparing her for what is going to happen. I don't know what time she has been given, if anything. I'm sorry I've waffled a bit, but I hope you understand what I am trying to ask. Quote Link to comment Share on other sites More sharing options...
Cat tails Posted March 30, 2016 Share Posted March 30, 2016 I'm so sorry to hear this. Must be an awfull time they are going through. From my (limited) knowledge of lung cancers, is that it very rarely is completely curable. Although the life expectancy can be as long as years. Of course this completely depends on the stage of the lung cancer. I rember reading about a certain kind of chemo developed for lung cancer patients that seemed to be quite successful, although still in the research phase and so expensive that most (Dutch) insurance companies won't pay for it. But again, this all is very individual and can be very different from person to person. Quote Link to comment Share on other sites More sharing options...
Charlottechicken Posted March 30, 2016 Share Posted March 30, 2016 Just wanted to say I am so sorry to read this, your daughter's friend is virtually still a child, this must be incredibly difficult for her and her family and friends to deal with. I can only suggest you have a look at the Macmillan website for info and maybe professional support, and they might have info for your daughter too, as a friend she will have a support role to aid her friend through any treatment she will be having. Quote Link to comment Share on other sites More sharing options...
Groovychook Posted March 30, 2016 Share Posted March 30, 2016 I can't help or offer any useful information but I wanted to say how very sorry I am to hear your news. So terribly sad for everyone involved. Quote Link to comment Share on other sites More sharing options...
gavclojak Posted March 31, 2016 Share Posted March 31, 2016 I would have thought they would keep going with the treatment and trying different combinations and perhaps some clinical trial type drugs. I'm sure they would still be trying to cure at this stage. Primary lung cancer is nasty but treatable I think the problem with secondary is that it isn't just in the lungs and that makes it unpredictable. When nothing further can be done, God willing it won't come to that, they will talk about palliative care, I don't think they will give a time scale unless the parents/patients ask directly. What an absolute nightmare....I have no words Quote Link to comment Share on other sites More sharing options...
Egluntyne Posted March 31, 2016 Share Posted March 31, 2016 Very sorry to hear it. Quote Link to comment Share on other sites More sharing options...
bluekarin Posted March 31, 2016 Author Share Posted March 31, 2016 Thank you for all your kind words. She doesnt have lung cancer, it is primarily deep tissue sarcoma in her leg/buttock and as it took 2 months of gps giving wrong advice it has now metastasised and gone to her lungs and lymph nodes. It just seemed all so final last night when I heard her news, but she is such a positive person. I sent her a message and she apologised to me for upsetting us! I told her not to be so silly. I just hope she gets to go to uni this year and become a vet as that is all she has wanted to do. She was meant to start in Bristol with my daughter last Sept, but couldnt due to ill health. Time will tell. Quote Link to comment Share on other sites More sharing options...
Grandmashazzie Posted March 31, 2016 Share Posted March 31, 2016 So very to hear of this young girl,she sounds very courageous. In my limited experience she will continue to be treated and her consultant may put her forward for trial drugs. This is what happened with my brother in law and while it wasn't a cure he got two more years than originally thought. Quote Link to comment Share on other sites More sharing options...
kinsk Posted March 31, 2016 Share Posted March 31, 2016 So sorry to hear this I think every case is so individual it's impossible for anyone, even the doctors, to be able to give much of a comment, and I suppose this is what you need to tell your daughter. Over the last 10 years more friends and family than I ever expected have been diagnosed with cancer. Most recently a friends husband with prostate cancer, told it has spread to bone cancer and had 2-4 months. Within two weeks they offered him an alternative treatment and are now saying 4-6 years. I think the only thing you can tell anyone about cancer is that we just don't know, prepare for the worst, make the most of the present and celebrate everything. Hoping for the best for you all xx Quote Link to comment Share on other sites More sharing options...
Plum Posted March 31, 2016 Share Posted March 31, 2016 This was so hard to read. She sounds such a strong girl to think of your feelings. I hope a miracle happens but it's going to take you and your daughter some time to come to terms with what's happening. Hope she makes uni. Quote Link to comment Share on other sites More sharing options...
Alis girls Posted March 31, 2016 Share Posted March 31, 2016 Aweful thing to happen. There is a Sarcoma UK which might be useful. I can't give any real advice, be there for your daughter, if you can't give an answer say so. Drs often can't give a prognosis. I assume she's under a specialist unit. Might it be worth her seeing if Royal Marsden or another well renowned unit can offer a trial etc. Secondaries are difficult to treat but not always impossible. Sarcomas a difficult one as its often diagnosed late. This is why you need to be pushy and ask for second opinion if not happy. I wish her good luck and hope she reaches her goal of being a vet. Ali x Quote Link to comment Share on other sites More sharing options...
bluekarin Posted March 31, 2016 Author Share Posted March 31, 2016 I think the only thing you can tell anyone about cancer is that we just don't know, prepare for the worst, make the most of the present and celebrate everything. I shall borrow this from you, and we shall live by this. Thank you x Quote Link to comment Share on other sites More sharing options...
Valkyrie Posted March 31, 2016 Share Posted March 31, 2016 Very sad news indeed. My neighbour's grandson was at uni (he wanted to be a doctor) and was diagnosed with a brain tumor. He had to take time out for treatment but he did go back and complete his course and graduated last year. So a positive attitude that the young lady has it a good thing. I wish her all the best and to keep strong. Quote Link to comment Share on other sites More sharing options...
Lewis Posted April 1, 2016 Share Posted April 1, 2016 Sorry to hear it Best wishes to her. I hope she manages to beat the cancer and follow her dreams Quote Link to comment Share on other sites More sharing options...
Charlottechicken Posted April 1, 2016 Share Posted April 1, 2016 This just came up on my facebook feed. It seemed appropriate to link to it on this thread. https://source.macmillan.org.uk/ Quote Link to comment Share on other sites More sharing options...
bluekarin Posted April 1, 2016 Author Share Posted April 1, 2016 Thank you. I think it came up on mine too, as I liked Macmillan today. I will have a look and see what they say. Quote Link to comment Share on other sites More sharing options...
Patricia W Posted April 1, 2016 Share Posted April 1, 2016 A cancer diagnosis, even with stage 4, isn't necessarily a hopeless diagnosis these days. Cancer treatment has been transformed. I speak as one who was diagnosed with a stage 4 cancer 2 years ago. So nine cycles of chemo, and three operations later, I have been clear of cancer since last September. I have to have scans every 3 to 4 months for the next 18 months or so, but that's the extent of it. A neighbour has been "terminal" for nearly 10 years, and has never been clear, but he, and the oncologists, never give up, and he leads a "normal" life. His last treatment has recently stopped working for him, so the oncologists have sent off for a new treatment from the USA for him to try. As to how best to help, do tell your daughter to ask her friend how SHE wants it approached. Everyone is different. Your daughter's friend may have things she enjoys doing that she wants to continue. Or goals she still wants to achieve. The people who really bugged ME were (and are!) the ones who avoided me, or spoke in hushed tones and told me how "brave" I was. The ones who really helped were those who treated me "normally" and we just carried on as before. I needed help when on chemo, looking after the chickens, dog etc but was lucky enough to have a husband and friends who just stepped in. Life does go on, even with a terminal illness, so enabling someone to put it all on one side, even for a short while, is often the best gift you can give. Aren't we all "terminal" anyway? Quote Link to comment Share on other sites More sharing options...
Valkyrie Posted April 3, 2016 Share Posted April 3, 2016 Very true. Some have to leave a little sooner. Terminal - sounds like a start of a journey. My dad had stomach cancer (twice) operated on (he still had some tum left, not all removed) and chemo sessions. He had it before my daughter was born and when my son was a year old. He was always upset that he'd never see my son grow up. Well although he was told it was terminal and it would be months rather than years he defied all odds and went into remission. He was given the all clear after 10 years and my son was 19 when dad chose to float off on his new adventure. So not only did he live to see my son grow up, he also saw my daughter arrive and grow up too. And it wasn't the cancer - it was blood poisoning!!! Quote Link to comment Share on other sites More sharing options...
Alis girls Posted April 3, 2016 Share Posted April 3, 2016 I know several younger women with terminal breast cancer - controlled not cured on meds. To be hoped they will see their kids reach adulthood and even grandchildren. New meds coming out all the time. Quote Link to comment Share on other sites More sharing options...
Cat tails Posted April 3, 2016 Share Posted April 3, 2016 New meds coming out all the time. That's for sure! And more and more specialised to the type of cancer, to give as much result as possible. Some types of cancer are even moving towards being a chronic illness, rather than a death sentence. Quote Link to comment Share on other sites More sharing options...
Daphne Posted April 3, 2016 Share Posted April 3, 2016 Nice to hear from you Patricia! I'm very sorry to hear about your illness, but it's so good to read your attitude, long may it continue Thanks also Valkyrie, a friend's mother has just been diagnosed, with months to live. She is so good at the moment, it's helpful to hear positive experiences, not false hope, but positivism Quote Link to comment Share on other sites More sharing options...
Valkyrie Posted April 3, 2016 Share Posted April 3, 2016 Thank you. I do think frame of mind helps. My dad was just a determined character. Mum says stubborn like his daughter. Well really!!!! His family have been pretty much the same. An aunt with all sorts of cancers refused to give in and she went on well into her 80's although her husband on being diagnosed basically switched himself off and was indeed gone well before the doctor's estimation. One of dad's cousins seems to be the exact same as dad and aunt and takes everything thrown at her with a pinch of salt - she's in her late 70's. And while people continue to fight there are cures or slow downs being found all the time. One person I knew was waiting for results for MS and so she immediately embarked on a diet regime that boosted her immune system. It was negative and they found it was something unusual but could be treated with antibiotics. But it was her sheer determination, acceptance of what may or may not be, but she wasn't going to be beaten easily! Quote Link to comment Share on other sites More sharing options...
bluekarin Posted August 16, 2016 Author Share Posted August 16, 2016 Sadly my daughters friend passed away on Saturday and today would have been her 19th birthday. It has really affected my daughter, and it has affected me more than I realised it would. I can't stop thinking about how young she was, and how much she went through this past year. She had so much to live for, was the kindest person; always thinking of others. It just seems so unfair that she was in education, working to a point for so long, to not even have had the chance to fulfil her dream. Quote Link to comment Share on other sites More sharing options...
Groovychook Posted August 16, 2016 Share Posted August 16, 2016 I'm so very sorry. I can't find any more words Sending hugs. xxx Quote Link to comment Share on other sites More sharing options...
patsylabrador Posted August 16, 2016 Share Posted August 16, 2016 I'm very sorry for you all too. That is very sad news, I hope it gives you all some strength knowing people care about what you are going through. Quote Link to comment Share on other sites More sharing options...
