How do you know if its progressing?
Hi Everyone, just a bit of a dumb question... I'm Stage 4 De Novo with bone/spine mets. I've been on Letrozole/Ribociclib/Denosumab for about 7 months now. I'm having restaging scans every 3 months... The first set of restaging scans showed "significant improvement" in my breast tumour and no further commentary re lymph node or spine mets. I'm about to go in for my 2nd restaging scans in about 2 weeks time. I don't feel much different than before I was diagnosed (except from the side effects of these drugs). So far, so good :) I'm just wondering, aside from results that may show on scans/blood tests, do you feel any different when the cancer starts to progress please? Should I be looking out for something? Pain? Or something else? What else have people encountered please? Any experiences shared would be greatly appreciated. Cheers
Starting Xeloda and would appreciate any insight and shared experiences / success stories please :-)
This is my first post to the on-line Network although I frequently read the wonderful and raw posts you all share that unite us and provide strength and inspiration! I was diagnosed 3 years ago with liver mets and had my ovaries removed and started femara.....which has been successful up until now. Liver mets now count 20 with 19 only 1cm and unsure whether they are all active but one at 5.5cm which is active hence my oncologist has opted to start me on Xeloda and that treatment began today. I am taking 5 x 500mg daily .....two weeks on and one week off. I visit him in 3 weeks for review of how I am responding. He is confident I will do well. I feel blessed and like I am living the dream given that I am 3.3 years down the track albeit I am using lots of energy at the moment to stay optimistic and positive given I was hoping for a liver dissection last week which the surgeon declined to do upon discovery of multiple lesions including new ones post my original diagnosis. I have a 22yo son (only child) who lives with me (still at Uni) and I am a single mum. He is my everything. I am not afraid for me....but I am scared for him. I know this emotion will settle but would appreciate any feedback members may have as keen to give the Xeloda a very good run and hoping symptoms are manageable so as I can show him daily strength and continued capacity to be as well as possible. Keen for anything anyone may be prepared to share re their own experience in terms of symptoms, management and success. Thank you my cancer sisters. Tracey (aka Traleee) xx
Olivia Newton John now has metastatic cancer
Just read this on facebook and i've got to say i'm very saddened by this news how dare cancer come back after so so many years. For Immediate Release OLIVIA NEWTON-JOHN POSTPONES JUNE CONCERT DATES May 30, 2017 - Las Vegas, NV — Olivia Newton-John is reluctantly postponing her June U.S. and Canadian concert tour dates. The back pain that initially caused her to postpone the first half of her concert tour, has turned out to be breast cancer that has metastasized to the sacrum. In addition to natural wellness therapies, Olivia will complete a short course of photon radiation therapy and is confident she will be back later in the year, better than ever, to celebrate her shows. "I decided on my direction of therapies after consultation with my doctors and natural therapists and the medical team at my Olivia Newton-John Cancer Wellness and Research Centre in Melbourne, Australia,” says Olivia Newton-John. There will be no interview requests accepted at this time as Olivia’s focus is on her treatment and healing. Ticket buyers for the upcoming concerts should contact venues directly about refunds. Rescheduled concert dates will be posted at OliviaNewton-John.com in the coming weeks. # # # ##
Update on stable bone mets but increased tumour markers - Part 2
Hi all, You may recall I posted yesterday about my stable bone scan but rising tm's and fearful of possibility of going onto chemo. Today I went to see my medical oncologist and she did a little "happy dance" in her chair. When I asked her about the rise in tumour markers - up from 71 to 143 in 3 months, she advised that tm's are not viewed in isolation. White cell count, kidney function, vitamin D, calcium, haemoglobin, protein levels were all good. Was also a timely reminder of where I was in January with tm's - 941. Given that the blood test was taken 2 days before my sore throat and mouth ulcers that I was affected by last week, possibly had more to do with it. If I had new or persistent bone pain, less than favourable bone scan and generally poor blood results it might be an issue. Given that I look well, energy levels are ok, bone pain is manageable - she is happy. "Have a great Christmas and I will see you next year" were her passing words ! Thanks to all those for your support. Sheryl :) <3
Feeling scared and uncertain
3 years ago I was diagnosed with stage 3 breast cancer and underwent a right mastectomy, chemo radiotherapy and then started on tamoxifen. Whilst always living in the shadow of it returning, I got on with life, saw my stepson marry, my son become a father and my daughter is just completing year 12. I thought I was ok. Then 5 weeks ago my world crumbled around me when I discovered the cancer had returned in my scar tissue and I have now been told I have advanced breast cancer. I consider myself lucky it hasn't spread to my bones or organs but I am terrified that it will. My oncologist is putting me on levistol along with a new clinical trial which she says has amazing results in the USA. She sounds very optimistic and assures me that if my cancer doesn't respond to these drugs there are plenty of others. So why do I feel so scared this time round? I guess I am now facing my own mortality and that scares me. I am only 52 and have so much more living to do. I understand that many women live with secondaries for years, I would love to hear from you and how you coped with this news. I am a positive person, I have to keep fighting as I don't fancy the alternative, but realistically I feel I have just been handed a death sentence. I am sorry if this sounds blunt, but this is how I am feeling right now. Any guidance or words of support would be greatly appreciated. Also, I live in Perth so if anyone can recommend any good support groups that may be a help to me. Thank you xx
Shades of Grey
Now I haven't actually read shades of grey but I am sure my past week, while a feel a week in shades of grey was not as "riveting". Once of the things that stands out to me since I began this journey on 22nd February 2011 is how grey everything in Breast Cancer is. I expected medicine, science to be black and white. You diagnose, you cut it out, your medicate and you are cured - that's what happens isn't it? The Dr knows all because the science backs it up. How wrong I was. I would be a wealthy women if I had a gold coin for everytime I have heard the answer "We don't know" , "The studies are not clear on that", "We don't have that information", "We don't understand why..." This week I had a new experience in the shades of grey in dealing with my cancer. I had progress scans - 12 weeks into trial - i have them every 6 weeks. My first lot at 6 weeks showed stable disease (i.e. the cancer is pretty much the same - minimal growth, no new disease) - in fact one of my mediastinal lymph nodes had significantly reduced during the 6 weeks. There is a process when you are on a trial - they identify target lesions. Target lesions should meet RECIST criteria and be at least 1cm preferably 2cm in size. Fortunately for me my lesions have always been small - the issue though for me is that I have "innumerable" lesions in my lungs - effectively so many nodules that they don't bother counting them. So, they have 2 target lesions for the trial - both lung nodules. (I have lung disease and some mediastinal nodes that have been inflamed). So, the first report is done by a radiologist who has a quick 10 minute look and writes a short summary. I had seen the films and thought they looked bad, left a message for my private oncologist - she returns my call at night saying it would appear I hae progression, the radiologist is saying that there is new disease and the nodule he reports on has grown 20-25%. I then spend the next few days dealing with this news, working out next steps and go to my appointment with my trial oncologist who says he has looked at the films, the trial radiologist has done the measurements and within the trial criteria my disease is stable - the growth of the target nodules is around 15%. He meticulously goes through the films with me, pointing out that the new scans are done on a new machine with higher resolution and he does not beieve the progression is significant. He cannot find sign of new disease. I had asked for a third opinion from the radiologist I trust the most, the one who knows my lungs back to front. He reports differently again commenting and measuring the 6 lesions that have changed the most - all within the vicinity of 20-25% but numerous are unchanged or marginal increase. So 3 radiologists, three differing opinions. This information is what I need to make a decision. If I decide to stop the drug I can never get it again. Have I got full benefit of the drug yet? Am I a sow responder? My trial oncologist was honest - he would like to see some shrinkage by now and it seems I am slowly progressing. Add increasing tumor marker numers that are unreliable and we have a mixed up story. So, shades of grey - I decided to stay on the trial - rescan in 4 weeks - wonder what we will see then - black, white, grey? Amandax
Latest scan results
Hi all, more good news today, thank God! Some lung tumours have shrunk slightly, one larger one in particular is now no longer visible at all and some tiny tumours have remained the same! No new growths anywhere in my body - bones and organs :). Today's results also confirmed further healing in my bones, so I'm rapt with this result....overall "stable"! ? I feel such immense relief when 'scan time' is over and I often wonder if this ever gets any better? Anyway, I am so looking forward to having a lovely xmas now without the stress of results due! :)One year on
Today is a day of mixed emotions for me. One year ago today I got the news that my breast cancer had returned, 3 years after my initial diagnosis! I was shocked beyond belief…. my whole world came crashing down yet again. I had fought so damn hard first time around, the treatment was gruelling, and I remember thinking back then “I will NEVER, EVER do this again…NEVER!” I will never forget the day I got my secondary diagnosis. My sister and I were attending the hospital for what we (and my medical team) thought was to be a fairly routine appointment… just a discussion about another form of preventative treatment... nothing out of the ordindary. I remember us laughing and joking in the waiting room over some silly thing. Then we were called in and out came the words that are etched in my mind and changed my life forever “I am very sorry Celeste, I have some bad news for you…. But we will do whatever we can ”. In one breath, my life was no longer the same. So here I am, one year on. I have looked death in the face now, on more than one occasion. I have fought hard to stay in this world, to continue to raise my beautiful daughter, who deserves her mum to be around. It has taken the better part of this last year just to accept my diagnosis…to get over the shock…and to pick up the pieces of my shattered world. I have stopped asking ‘why’ and I now make plans...and although they are no further ahead than in 3 month blocks (to coincide with my scans), they are still plans! I have good days and bad days…but at the moment there are more good days than bad, and for that I am truly grateful. Those who know me well know that I am indeed a battler…always have been…always will be! They say there is no cure, they say I will get terribly sick, but I say roll on with the treatment…hit me with all you've got! I am still standing strong one year on and have the determination to beat the odds and kick cancer’s butt yet again! In true Celeste style, I say "BRING IT"! Yeah! :D
One year on
A year ago today I was told that I had secondary breast cancer. My doctor told me the year ahead would be a rollercoaster ride and 'to forget everything else and just concentrate on my treatment and my family'. He was right. While my year has been emotionally and physicallly draining, I have still had some wonderful moments too. I cherish my time with my famliy - my lovely husband and two children - as well as my parents and my sister. I have realised just what a wonderul life I have had so far and I plan on having more wonderful years too! I go for more scans in a couple of weeks and I am hoping that they will show that the mets in my bones have stablised and nothing new has spread anywhere else. I have been feeling pretty good the last few weeks so hopefully that's a sign that things are going well. Today has been an emotional day for me - I've been close to tears quite a few times - I just hope that I am here to celebrate quite a few more anniversaries. Thanks to all of you who have supported me so far. I couldn't have got through the dark moments without you. xxxthe plan to get over the hurdle
Hi wonderful ladies Firstly let me thank you all so much for your messages of support. I haven't been able to reply individually but know they are gold to me. Devastated, shell shocked, angry, frightened, sad, desperate, hopeful, empty, bereft... there are so many words to describe the gamut of emotions I have been through since Friday's test results. I still cannot believe that I have developed metastases while on the gold standard treatment for my form of cancer. I'm not sure my treatment team does either (they they obviously do and are not emotionally attached). I haven't even noticed the effect of the taxotere this cycle because the pain in my heart is so much more than any pain in my bones or tingling in my fingers. The sick feeling in my stomach is fear not nausea, the shaking has been from my uncontrollable sobbing - when I finally let it out - it was a physical release - who says emotion is all in the head? After a very, very hard weekend Monday saw us visit the Gawler Foundation shop which is near our home. I saw a counsellor there and found it immensely helpful - she let me cry and scream and showed me that releasing my emotion actually provided me with some peace and space to be hopeful, that holding the fear and sadness down was actually more harmful to me. I have felt better since then - I am able to brush my daughters' hair without tears slipping down my face, watch my son kick his foot ball without wondering if I will ever see him play an actual game, listen to my other daughter sing without it tearing me apart. I'm not saying I don't feel anything anymore, I'm just managing it better. I have tears now as I write this - I'm bloody frightened. So, the plan... Today we saw my oncologist who has spent the weekend and yesterday discussing my case with colleagues and she has recommended that a clinical trial is my best chance to try and suppress the cancer - it will give me access to cutting edge drugs and is, she and her colleagues think my best chance. There are a number of trials with pros and cons - we have decided on a trial at Monash that ensures that even in the control group I am getting a combination of drugs that she feels will still be worth trying - if I get the experimental drug even better (perhaps). I have to go through a whole battery of tests and depending on my bloods will start as soon as possible. The treatment will involve weekly chemotherapy - indefinitely... It is herceptin and navelbine (IV form) + the experimental drug/placebo (daily tabet) We cannot cure the cancer - it will always be there. We have to hope that we can suppress it and hopefully shrink the tumors and that I can live with the disease and it's treatment as a chronic disease state. It is a lot to come to terms with but I have a lot to live for. Amanda xx