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
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thanks Vicki.....good luck with your decision making on Tuesday...forgot to say NHS locally and the private care at the Marsden worked really well together over my blood issues.....love C x
Vicki i rang the Marsden as it is 10 miles from me and since moving, southend is 50. As all my family are in Essex chemo visits mean me spending time away from home to accomodate. Anyway i was told i can just be referred by my oncologist as it is my hospital. I was under the impression i couldnt do this. I want to talk to my oncologist first out of redpect as i have had excellent care at southend. So i hope i get my second line treatment at the Marsden. I hope you are feeling ok . Tracey x
That sounds great, Tracey. I don't think I can move there directly as I'm out of catchment area (so to speak). However, the private patient option would be unrestricted in this respect. Good luck with your referral.
Sounds like good news. I hope that the reduced dose means that you are feeling better & side effects are more manageable. You are a pioneer on this drug! - but that can't be easy,. Thank you for sharing your experience so far, have a wonderful time on your cruise.
thanks Elizabeth.....will let you all know how it progresses in the future...C x
Hi. Chris, what fabulous news. Was thinking of you last night and was going to message today to see if the cruise was going ahead. Have a wonderful time. I am having my scan on 30th August and hoping my onc gives me the good ahead for our holiday in September. Will catch up when we both return. 😘😘😘😘
Wow sorry to hear that you have needed blood transfusions but So pleased that they seem to have got the side effects under control . I can't believe they didn't warn you about the possibility but I suppose are still gathering info. Thanks for sharing and persevering with the trial , lots of us hoping and praying that it is successful for you and the other lovely ladies on the trial .
Have a great cruise , remember to send a photo😎 Love and best wishes Kim x
Hi Kim, actually, its not a trial but immediately post trial and to be fair I did have written info.
Have a fantastic cruise with your children. Yes dogs mine wouldn't survive in kennels so we work around a dog sitter and weekends when our daughter is not off to some concert or other. You will have a nice Hall when you come back as a bonus.
sorry this got sent early by mistake(!) Its just that I don't t think I quite took in how significant the blood effects could be and I did get a bit fed up ...and maybe a little frightened ....by the blood transfusions. Kept thinking other people may need it more!
Think there are emotional symptoms too on occasions which may feed in to this. However, all seemed better when I reduced the dose...was probably too confident as had not had any bad side effects from chemo...compared to others anyway! love C xx,
It's funny how our experience informs what we take in. I've had lots of blood problems, including transfusions, on different chemos, so I spotted the risk right from the off as potential problems with the Niraparib. But I still hope to get it. Should know next week.
could not agree more...I certainly would not want to put anyone off...haven't thrown it in the bin yet...and in fact think am beginning to feel some good effects...unless that's a psychological effect of course..
All the best of luck...fingers crossed for you!!!! let us know, Chris xx
thanks....just felt almost obliged to let people on this site know....was really quite shocked to hanve the effects after an initial very good seeming response, and did not want anyone else to worry too much if a similar thing happened.
Somehow, when you know a drug is expensive you feel more obliged for it to work perfectly I think. Previously, my treatment has been bog standard but I gather caelyx is more expensive than some as my centre always used to ring to make sure I was fit enough to have i before they made it up.
Comes from having worked my whole life with people with very little money I think...hey ho!
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