We received some good news on Friday. The funding for hubby’s round of Avastin therapy has been granted, and preparations are under way for the baseline tests. We’re now waiting for an appointment with the oncologist, and a new MRI scan date. As hubby has an ABI – Auditory Brainstem Implant, he can only have an MRI where his head is wrapped very tightly. This way there’s less of a risk that the magnet in his skull will flip over during the scan. Whenever he emerges from the scan room I can’t help but notice the looks of terror on the faces of other patients in the waiting room. With his head covered in bandages, and sometimes a little bit of blood from the anesthetic needle, he’s quite a sight!
As May is NF (Neurofibromatosis) Awareness Week, I thought I’d take this opportunity to talk a little more about Avastin and NF2. Huge thanks here must go to my wonderful friend Kate – medical librarian extraordinaire, who knows full well that we like to read all the science bits, and went out of her way to track down research papers. We loves you Kate.
You may have heard of Avastin as the ‘postcode lottery’ cancer treatment drug. I won’t go into the ethics of patients being denied treatment because the companies that make the drugs charge so much for them, but needless to say I think it’s abhorrent. Sort it out drug companies. You can still make a profit without forcing doctors to make heart wrenching decisions over who gets to live a little longer. Your CEO’s will just have to lose a yacht. Or two.
Avastin is the brand name for a drug known as Bevacizumab. In NF2 it’s used to try and stop growth or even shrink the benign nerve tumours. Whereas conventional chemotherapy drugs kill dividing cells, even healthy ones, Avastin only targets one particular protein on the surface of a tumour producing cell. This protein is called vascular endothelial growth factor (VEGF). In very simple terms, whilst conventional chemo has a more toxic effect, ‘targeted therapy’ drugs such as Avastin stick to the VEGF protein, and persuade the body’s immune system to attack only the tumour cells. By preventing the tumour from developing new blood vessels, Avastin effectively starves it, meaning that it can’t grow any bigger, and may even shrink. The drug is administered by drip once every two weeks, and whilst this will make every second Friday interesting for a little while, it will at least mean that we get to see mum-and-dad-in-law oop north more often.
We’re not the sort of people to get too hung up on reading about side effects, but these could include nausea, tiredness, weakness, loss of appetite, diarrhoea, high blood pressure, blood clots, and changes in the way the heart and kidneys work. Hubby’s favourite though, is that as Avastin can affect fertility, he’ll be asked if he wants to store some of his sperm. I’ve lost count of the number of times he’s made crude jokes about not needing magazines to help him do the deed, when there are women in nurse’s uniform wandering around! I despair, I really do.
Long term – well who knows. We’ve never really planned more than 6 months ahead. Ill health has that effect. It makes sure that you live in the present. For us it’s all about travel, and the first thing we did this weekend was book a trip to celebrate the funding, and to help us keep our spirits up. It’ll fit in nicely between hubby’s dosings, and won’t be so exhausting that we knacker him even more. It will however allow us to have a little adventure, and it’s these adventures that give us the strength to carry on.