Meeting with Pharmaceutical Company Eisai
On Tuesday 16 September I represented BCNA as a Consumer Representative as a guest speaker at a luncheon being part of an internal conference run by Eisia, Eisai is a global research orientated pharmaceutical company committed to improving the health and all individuals worldwide regardless of wealth or geography. A drug called Eribulin is soon to be added to the PBS. It’s a monotherapy for advanced disease in patients with locally advanced or metastatic breast cancer who have progressed after at least two chemotherapeutic regimens. To qualify for its use, prior therapy should have included an anthracycline and a taxane, unless patients were not suitable for these treatments. Eisai is new to Australia and approached BCNA to send someone who has advanced breast cancer to share their journey. I was honoured to be asked to represent BCNA and myself. I addressed a group of 20 people, some local, some from the UK. The group included Doctor (researcher), Brand and Marketing Managers and Medical Detailers (sales reps to doctors). I have metastatic bone disease in the sacrum and spine as well as metastatic brain disease and have lived with cancer for 8 years. Eisai were keen to understand my relationship with my Oncologist. I said that over time it had changed. When I had early breast cancer, it was a formal doctor/patient relationship. Now that I have Advanced Breast Cancer for a long time, its more of a collaborative relationship as I understand my disease, body and do my homework. Always looking for something that will continue to give me quality fo life. Fortunately I paid $15K for Kadcyla, That combined with stero radio surgery to the brain, my disease is in check and its the first time in ages that I feel I'm not a tightrope. It maybe a honeymoon, but I'll take it. They wanted to know if I had treatment options. I am a private patient and I have always been given options. Another question was navigating the hospital system. Overall I have not had too much trouble except for the Austin Hospital when I had radiotherapy on my spinal cord. Radiotherapy had only moved from the Repatriation Hospital in Heldelberg and their staff were less than satisfactory. I would suggest that its probably better now but first and foremost patient care comes first, not massages and painting classes. I am now at Peter Mac for radiotherapy. Question was asked re Breast Care Nurse and oncology nurse support. I for one have never met a Breast Care Nurse. I have a wonderful relationship with my oncology nurses who are very helpful and supportive people. They also wanted to know who else I relied on. I have two wonderful friends who have been my chemo buddies for 8 years. I love them dearly. Being a pharmaceutical company, they were keen to learn about my side effects and how I deal with them. They have been numerous side effects over the years and depending the medical regime, sometimes I felt overwhelmed by side effects. These included chronic pain, chronic fatigue, irritable bowel (diarrhoea and gastric reflux), peripheral neuropathy, hand and foot syndrome and migraine. Today I have peripheral neuropathy, dry mouth and a runny nose. Kadcyla is a much gentler drug. They also wanted to know other therapies, support groups to cope with the disease. I have and now will do again Palliates to increase my core strength in conjunction with exercise in water. I have always walked and have a very balanced diet. For support I spoke about BCNA and the online network. They wanted to know what the emotional game changers were throughout my journey. From the outset I told the audience that living with cancer for a long time, I have totally accepted it and taken ownership of my disease but early days I treated cancer as an alien and I was going to defeat it. Hereunder is the list. Game Changers over journey 1. Being diagnosed with breast cancer 2. Being well and taking poison making you feel sick 3. Losing hair 4. Being thrown into menopause 5. Being diagnosed with Metastatic bone disease - morality really kicks in 6. Your life is now in a holding pattern as it’s dictated by “cancer” which is king. 7. Giving up work 8. Cashing in my superannuation 9. Being diagnosed with metastatic brain disease and terrified what this would mean to my quality of life. 10. Going on a disability pension. In summary, I really enjoyed interacting with people in a work environment again and didn't feel awkward telling my story. Eisai were very welcoming and thanks to Carlyn Villani, Brand Director fo Eisai for thinking of BCNA. Feedback was that they got a good insight from the patient's perspective which had not been previously considered. They are now more empathetic and hopefully gives them a more rounded approach in their work. Karen Cowley BCNA Consumer Rep
1 week
This time last week I was writting a little ditty about chocolate and chemo. What a week its been since then. So last monday I had my first chemo treatment. Breezed through the process with no allergic affects which the pharmacist was happy about as I can't have phenergan as I have a anaphylaxis reaction to and have generally spent most of my life avoiding anti-hystamines. 5 hours later I'm home thinking this is pretty cruisy I am going to be one of the lucky ones and even had a burst of energy and cleared the coffee table of paperwork (I only moved it to the dinner table - but it was the thought that counted). I wandered of to work the next 2 days feeling ok. Well after a long day of interviewing on the Wednesday I crashed that night and pretty much woke up to find it was Friday and getting out of bed was not achievable. I didn't just hit the proverbial brick wall I also fell under it with it collapsing on top of me. Fast forward and its Sunday. Achievement for the day was I made it to the shower after 4 days cause I was starting to pong. Have to say it was hard work getting dried and dressed after it but at least I smelt good again. My taste buds are wonky, my mouth is slothing skin, I'm shaky and weak, my bones feel like they are going through the blender, I have ulcers in my throat but I still have my hair :-). Well at least for another 7 days or so I'm told. Being the eternal optimist or just plain stubborn I will be getting up in the morning to go to work. I may only make it for a few hours but for me thats normality and I desperately need some normality. In this day an age the fact that the treatment is so much awful than the illness defies logic. I understand the procress as I have a scientist's brain but geez I have had to spend the week telling my brain I have to be this sick so that I can be healthy again. Then I explain to my brain I was actually quite healthy up until a week ago. Pfft my brain and I have some interesting conversations at times lol. Anyway I know this is a journey of stamina not speed so I figure I will probably have quite a few more debates with myself until this particular phase is over. My mum is a breast cancer survivor and I will be to but god its bloody hard work but I will take the achievements as they happen and celebrate that today I am clean, jarmies changed, moved from the bed to the couch and enjoying some cooling and soothing orange jelly. Happy mother's day
Day 7 after 3rd Chemo-half way to where???
Day 7 after third chemo, looking back I am emotional again. Slept almost all weekend, well on and off. Just when I thought I knew what was going on my meds will be changed for the next three cycles. So goodbye FEC100 thanks for what (hmm). Yeah whatever you did to kill this tumour. Hello taxotere for next cycle. My oncologist likened it to a boxing match, constantly being punched by the left hand, the tumour knows what to expect, so lets change strategy and change to right punch. I have heard the 'Half way there - living on a prayer' song from Bon Jovi. Many people have used it as their half way thru. chemo song. But I am not living on a prayer. I am fighting to find my new path in life, using all my emotions and strength. Life will not be the same as it was, that is not what this journey is about. I haven't quite worked it out yet. But belive me I will share it with all of you as soon as i get it. My thoughts and emotions are scatty today. Considering my body is filled with chemicals and toxins I have a pretty good excuse. Tomorrow my friend is taking me to the 'Look Good Feel Well' workshop. For the first time ever, I am not looking forward to school holidays and sharing time with the children, well certainly not for a whole two weeks. I just find their abundant energy so draining. So hubby will take the second week off and keep them entertained. As that is when I start my taxotere so I have no idea how I will come out of that. Oh unless there is a change of plan and i have surgery to remove the tumour that week instead of at the end of chemo. Oh well thats it for me ladies, feeling nauseas got to go eat something.