So, today, arrived early, and was called in early – that’s unusual!!! I thought by the time I left the appointment with the oncologist today I would know what was happening, but there’s still a few questions but
- The FISH test has come back confirming that the original cancer was HER2-, and the metastasised cancer has mutated to HER2+.
- The full body scan I had the other day has come back showing just that one area of bone cancer.
- The scan did also show that there’s something that needs to be checked on my thyroid, so waiting for appointment for a scan for that, probably at Stepping Hill Hospital.
- I will have to have one of those full body scans about every 6 months, at the Christie.
- I remembered to hand in my dental form (dentist has to sign off that no obvious problems, as fillings, etc. need to be avoided for 3+ years), so plans for Denosumab can be made.
- A request to put my port back in is being made – this time it’s a plan for life, so awaiting an appointment for that, probably at the Christie (so glad I live close to both hospitals!)
- An appointment to check my heart has gone into the system – assume echocardiogram, at the Christie (probably have frequent ones of those too).
- There are still mixed feelings amongst the doctors about exact plan of treatment, but docetaxol chemotherapy, which is needed alongside pertuzumab and Herceptin will be happening. I was hoping I could refuse more chemo after one treatment, and continue with the other drugs, but apparently the balance between the toxic effects of the chemotherapy, and the effectiveness of the drugs, means that I will probably end up with a 60% load of the chemo drug for four cycles (at 3 weekly intervals). I’ve been told I shouldn’t drive back from chemo (again), so will be looking out for lifts/company again.
- At present, we are working on the basis that I will have had heart scan, and port implanted, and therefore a seat has been booked on the Laurel Suite chemotherapy suite (at Stepping Hill Hospital) for 11th March (afternoon, to have the pertuzumab), and the 12th March (morning, for docetaxol, and Herceptin), otherwise it may be delayed for a week. Either way, I have a ‘new patient’ talk on afternoon of 5th March. They know that I will likely put the cold cap on again, and woo-hoo, got another parking pass for next 6 months – just need to remember to actually go to the parking office and pick it up!
(1 April, 22/23 April, 13 May OR 18/19 Mar, 8 April, 29 April, 20 May – this second set of dates messes up many things including my tickets to Hamilton, so let’s hope it’s not then)
- I’ll be back to see the oncologist again in 2 weeks (4th March), after he has spoke to Dr Colaco about the stereotactic radiotherapy (at the Christie), as advice from Dr Misra was to start the systemic treatment, and fit in the radiotherapy at an appropriate point, but Dr Chittalia wants to double check this fits with the NHS funding processes before we confirm chemo.
- I think I’ll be seeing a lot more of Dr Chittalia (oncologist), but still see Mr Dimopolos (surgeon) around every six months.
- All of the aches/pains in shoulders/knees, etc. that make stairs difficult, and hands very stiff (particularly first thing in the morning) are likely down to the Exemastane (aromatase inhibitor)
Asked about the size again, and again, ended up with so many other things to think about, left before answer was given! Thanks to Aspa for taking notes, and offering to accompany to more! 🙂
Dr Bex Lewis is passionate about helping people engage with the digital world in a positive way, where she has more than 20 years’ experience. She is Senior Lecturer in Digital Marketing at Manchester Metropolitan University and Visiting Research Fellow at St John’s College, Durham University, with a particular interest in digital culture, persuasion and attitudinal change, especially how this affects the third sector, including faith organisations, and, after her breast cancer diagnosis in 2017, has started to research social media and cancer. Trained as a mass communications historian, she has written the original history of the poster Keep Calm and Carry On: The Truth Behind the Poster (Imperial War Museum, 2017), drawing upon her PhD research. She is Director of social media consultancy Digital Fingerprint, and author of Raising Children in a Digital Age: Enjoying the Best, Avoiding the Worst (Lion Hudson, 2014) as well as a number of book chapters, and regularly judges digital awards. She has a strong media presence, with her expertise featured in a wide range of publications and programmes, including national, international and specialist TV, radio and press, and can be found all over social media, typically as @drbexl.