Thankyou to everyone – family and friends who have wished me well after the 100 day mark (and for our 30th wedding anniversary wishes). It might seem strange but the comments and feedback we get are very encouraging and helpful in managing the recovery process (now I am feeling like a social media junkie!).
Today was unexpectedly one of good news – I have spent the whole day (10.00am to 4.30pm) going through the routine – blood tests, two units of blood, new dressing for my PICC line and a review by the doctors.
During the review my doctor, Emma announced the ‘preliminary’ results from my Bone Marrow Biopsy (only taken on Tuesday) indicated I am still clear of Leukaemia. There is still a more detailed result to come but for me this is a great relief.
This is my 4th biopsy and (apart from the first one) all have shown me to be in remission (clear of leukaemia) so far. It is looking good that I might be able to beat this nasty disease!
The other news from today’s visit is a radical change in my drug program. The medical team have been worried about my poor kidney function – the creatinine level is now 190 which is considered high – normally this would be less than 100.
The main drug affecting my kidney function is the cyclosporin which is a highly toxic drug and I am only now starting my weaning process from a high rate (150mg/day).
To overcome this they have advised no cyclosporin for a day and then back to 125mg/day dropping by 25mg each week until it is all gone. I asked why they were not happy to drop it altogether – the answer being is may well trigger another round of Graft vs Host disease – not something we need at this stage as it would involve more setbacks.
The doctors are also concerned about my low neutrophil count (now down to 0.7) and as a result have prescribed a series of G-CSF (Granulocyte- Colony Stimulating Factor) injections to stimulate the stem cell growth. Jan will be administering these to me at home.
These injections are effective in increasing the neutrophil count which helps my immune system recover (at the moment I am considered neutropenic and at high risk of infection).
I will know more next week after the blood tests on Monday so here’s hoping the medical team’s latest suggestions will have a positive result.