Caring for a loved one, my valued experience
Caring for a loved one, my valued experience
By Ruba Ghabar
- Please provide a summary including age, sex, year of diagnosis of the patient, treatment received, duration of treatment and any genetic information known about the type of leukemia:
My sister in law Christina was diagnosed with AML (FLT3 mutation) in September 2017 at the age of 41. She was eligible for a stem cell/bone marrow transplant and her sister was a perfect match. She received induction chemo in September 2017 which consisted of cytarabine and idarubicin. This treatment ran for 24 hours a day for seven days. A bone marrow biopsy was done after the treatment and confirmed remission.
While she was waiting for a bed (for three months), two consolidation treatments of cytarabine was given in November and December to try and keep her into remission until she got a bed. Finally, a date was booked in for the transplant on 14 Feb 2018. Unfortunately, Christina relapsed in late January and another induction chemo was given which consisted of cytarabine, idarubicin and flag-Ida.
In mid March, Christina was advised that she only had two to three weeks to live. We become desperate and after our own research we privately funded Midostaurin from Switzerland to try and prolong her life to make it to the clinical trial at Westmead.
Unfortunately, Christina never went into remission again after the second induction chemo. She was no longer eligible for a bone marrow transplant. She became eligible for a medical trial at Westmead hospital and was booked in to start treatment on Tuesday 3rd of April 2018 (From memory that trial was connected to Dr. Andrew Wei). Christina passed away on 31st March 2018, a few days before she was to go in for the trial. Her lungs filled with fluid and around the heart as well. She was taken to ICU to drain the fluid but her heart failed and she passed away from a heart attack.
- What was your involvement and experience like as a carer for an AML patient?
I was Christina’s main carer. It was a tough journey! The treatment was just horrendous. Seeing what patients go through day to day was so sad, upsetting and mentally exhausting. You feel helpless and useless. All you can do is support them, make them feel as comfortable and loved as you can. I will never forget the fear on Christina’s face when her haematologist told us that there was nothing else they can do and that she only had a couple of weeks to live…. She left behind two children…
- Did the patient face any barriers to reaching a diagnosis or was the experience relatively straight forward?
Reaching a diagnosis was easy. It’s the barriers you have through the journey that are extremely disappointing.
We were never told about Midostaurin even though we asked about treatments available overseas. If Christina had taken that with her first induction chemo she could have been here with us today. It was too late when I found it through my own research but we wanted to ensure that we did everything we could to try and save her life... I did not want any regrets.
Doctors, pharmacists, Novartis, the office of the Health minister, her local MP… They all told me how difficult it is to import the medication and that the process was going to take 12 – 18 months… Let me tell you I had the medication here in Australia in 3 days!!!
Novartis would not give it to me under compassionate access because she had already received induction chemo. When I asked them, they gave me a trusted pharmacy in Switzerland to purchase it from. I paid almost $30,000 for one month supply in March 2018 and in July 2018 it became available on our PBS… How unfair is that? This was already tested and approved in Australia, it just hadn’t been passed through PBS yet.
The Haematology team at the hospital gave me a script but once the medication arrived they did not want to administer the drug in hospital. Christina was really weak and could not go home. They insisted that she needed to go home and do it herself. I did not accept that so I had to escalate it so high to get it approved… Just too many barriers. Its like you had a constantly advocate for your loved one. Exhausting! You are emotionally drained and on top of that people are just lazy and don’t want to go out of their way and make everything seem so difficult.
- Did you have to seek more than one opinion?
I reached out to many haematologist interstate and overseas. Unfortunately, they all said the same thing. I also asked my husband to contact Dr. Andrew Wei who was just wonderful.
- Were you made aware of potential novel treatment options (such as clinical trials) and were there barriers and or difficulties in accessing this information?
We were advised of the medical trials once we did own research and asked them about the one at Westmead (this is after Chris was advised that there was nothing else they could do for her). I contacted the person in charge of the trial who was lovely and understood the urgency so she fast tracked her appointment.
- What was the treatment course like for the patient and for you as a carer?
Exhausting and scary. You just did not know what to expect everyday day and what it was going to be like. You could be ok one day and in ICU the next… Just unpredictable. The high temperature over 40 degrees were the most concerning days. We had to take it one day at a time.
- Did you have any concerns with the communication between the patient and the clinician/Dr providing the treatment plan? Could the medical literacy be more simplified?
Absolutely! A bit more compassion would be nice. Doctors just have to empathy or compassion. Every time a doctor came in with bad news it was just like you’re just another patient, just a number…
- What would you describe to be the most overwhelming part of being a carer?
Staying faithful! Feeling overwhelmed, anxious and helpless. Trying to focus on the positives while you know deep down that its nearing the end. Just not being able to accept it and letting go.
- Do you believe post treatment, that there is adequate support for the patient, family and caregiver? If not, in what way do you think it could be improved?
Patients and their families need to be made aware of all treatment options. Especially when they ask for it.
The wards need to be more flexible with the families. There were nights were Christina would have fever of 42 degrees and nothing would bring it down. We kept putting cold packs of her forehead and body to keep it under control. While the haematologists were happy with that to continue, the nurses were quite aggressive about one of us staying there for those bad nights.
- What made you decide to become a consumer representative?
I wanted to raise awareness and be a voice for those vulnerable patients who have no option but to go with what they are told. For me it’s about supporting those in need and a way to give back.
- As a consumer representative, what changes and/or improvements would you like to see in the medical sector between patients and their doctor/clinician?
Better communication skills, this is so important to the patient and their families. Also, doctors being accessible to those close family members who cannot be there during the day as they need to work. Being able to have a chat to the doctor and discuss progress/issues.
Advise people of all options and it’s then up to them to choose their treatment.
I know patients would appreciate more therapeutical and targeted therapy. Also, another way to test bone marrow. Those bone marrow biopsies are just distressing and excruciating.