Venetoclax Clinical Trials
Hello everyone, I heard about this research on Friday last week and have posted some information below. It sounds like a very interesting clinical trial, in the very early stages and aimed at assessing safety. We will keep our members updated about any other developments regarding this research. If you would like more information about the clinical trial, please speak with your medical oncologist. See link below to the article https://www.news.com.au/national/breaking-news/melbourne-researchers-breast-cancer-leap/news-story/bb8aad8401fe2e765a7ecce530698314.
Triple negative metastatic breast cancer in brain
Hi all My Mum is currently living with mTNBC which is in her bones and late last year moved to her brain. She has had one treatment of whole brain radiation therapy and continues to be treated with chemotherapy also for the rest of her body. Is anyone familiar with any trials or new treatment options available to women in a similar situation? Mum is based in Melbourne, but we are open to looking whenever is needed. I would appreciate only positive stories to be shared in response to the question, as you can appreciate it is a very specific diagnosis and a difficult one at that so we are trying to remain hopeful. Can anyone relate to a similar diagnosis and have any suggestions? Thanks
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
Proper Introduction
It occurred to me I hadn't done a proper introduction on here yet so here goes. I'm the mother of soon to be two year old Amelia and the wife of my very own Magic Mike ( not a stripper of course but magical for all the very right reasons). We started on this detour late August after I had some lumps we discovered investigated which lead to immediate mastectomy and axillary dissection with 6 nodes removed, 3 positive. Staging scans resulted in our subsequent and horrifying diagnosis of lesions in the liver, ribs possibly lungs and pelvis. We have an amazing oncologist who promptly signed us up for the Peggy clinical trial which involves paclitaxel weekly and either a trial or placebo tablet. We are two months in now and feeling pretty good really. My hair loss has been the most obvious side effect for me. No nausea to speak of but feel pretty low and down in the dumps on days 3 and 4 and unfortunately I've started to get pins and needles in my finger tips and toes since my last infusion so that will be something to keep an eye on but otherwise things are going smoothly. I daren't say that out loud however, I feel like every time I get a handle on things and feel positive we get another piece of bad news. Go back to see the oncologist on Tuesday......I imagine our next focus will be scans etc for the trial as we are nearly halfway. I think that will be a nerve racking time. Anyway, love and light to you all, And thank you for creating a safe place to share be supported xxxx
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? AmandaxTDM1
I started the Th3resa clinical trial on Thursday - I was randomised to receive the study drug (thank GOD) which is TDM1. This is a drug for Her2 Positive women - currently it is mainly being researched in women with ABC but I believe there are some adjuvant trials happening in the US. It is being put up for FDA approval toward the end of the year I believe based on the promising results from the Emilia trial. It has been called a "smart bomb" in the press - effectively the Herceptin (T) is combined with the chemo (DM1) in the same drug. The Herceptin seeks out the cancer cells which over-express Her2 and then delivers the "payload - chemo" to the cells. The upside is fewer side effects from the treatment as the drug does little damage to healthy cells. I have had my first does on Thursday - over 90mins first time. My side effects so far are minimal but mainly flu like - mild temp, aches and pains, very mild nausea.low appetite and fatigue. Today is Day4 and I am feeling pretty good just a little achy. I will have my second dose in three weeks - 60 mins this time and then eventually 30 mins. I will be scanned every 6 weeks. Who knows if it will work for me - I can only hope. The disease while I was away decided it quite liked not having a chemo agent in the mix and despite me feeling amazing my pretrial scans showed significant progression but the disease is still confined to my lungs and now my chest nodes. This drug has had amazing results in some and done nothing for others so I am hoping I fit into the former category or at the very worst keep the disease stable for some time. If anyone else reading this is on this trial or other TDM1 trials I would be interested in hearing of your experiences. Much love to you all, Amanda xxStable - schmable...
Hi pink ladies, Clinic today - basically the disease is stable - schmable. I'm pretty down about it. I have had all of my hopes pinned on remission. It is unlikely that this will happen. So I have to get my head in the space that stable is a good result. The CT cannot tell what is active and what is scar tissue but basically since I started my weekly treatment 19 weeks ago, the lung mets have barely changed and none of them are gone - yes they are small but they are very numerous and even the tiny ones are still there. The axilla node is 50% reduced in size and the skin met is about 50% smaller too. I still wonder if the lung "things" are actually mets - especially as they do not seem to be reducing but am not willing to have the invasive surgery to biopsy them. We just have to assume that they are as the skin met was positive. So I keep going on the treatment as so far nothing is growing and that is a good thing. I've decided that I need to take a break from the cancer world a little - disengage from it as much as I can despite having advanced cancer and weekly treatment. I need to get on with life. I don't want to talk about cancer anymore, I don't want to read about cancer anymore (hell I don't even want to have it anymore - can anyone arrange that?). I am getting back into exercise - yoga, pilates and bike riding; back into my photography; very into xmas and new year and life with my beautiful little family while I feel extremely well. Who knows - miracles happen - so one might just happen to me - but it is not worth sitting around waiting - I just have get on with living. Love and light to all of you. You are angels. Amanda xxthe 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
