Have just returned from the Marsden where for the first time recently, everything seems to be good.(!) Including CA125
Didn't want to tell you too much earlier as thought it might discourage some of you but have had three two unit blood transfusions since starting this at the end of June, nearly collapsed in the street whilst taking my dog out just prior to the last b/t, had the drug stopped for a few days and am now on a reduced dose.
On a positive note, everybody very happy today...nurses said quite a few people have had similar side effects to me,except I think the need to hang on to a lamp post(!) and they are now compiling a data base to monitor. Why this was not talked about much in the trial info am not sure, but reading between the lines they do require frequent blood monitoring at the beginning of treatment so suspect they had an inkling(!)
Anyway am going on a cruise on Sunday and onc. did not seem phased by the fact that I am going on my own with the kids, whilst my husband stays at home to look after the dogs and paint the hall!
May increase the dose on my return.
Anyway, you lovely ladies please don't be put of this drug but equally recognise that so far, unfortunately, nothing is perfect for everyone. However, if you do go on it stick with it through the initial period. I was tempted not to at times.
Keep on keeping on everybody, whatever your treatment or"watch and wait' enjoy the rest of the summer. Will be thinking of and sending positive vibes to you all
With love, Chris xxx