I appear to be back as Lyndy not Lyndy 2 … not sure how this happened except that my Facebook stopped loading and I had to clear everything and log back in.
I am on the Module 4 trial at the Marsden of Olaparib and AZD. However some very adverse side effects including pneumonitis last cycle means that the trial hangs in the balance for me. It may be considered too risky to continue.
Which is a shame as in 6 weeks my ca125 is down 100 points and my lymph nodes are in normal range again.
I go back to RMH on 17th to find out the decision.
I hope you are all having a lovely Easter weekend xx
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Lyndy
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Hi Lyndy,Keeping my fingers crossed for you on the 17th at RMH. I hope that you are enjoying this sunshine during the Easter break and not worrying to much about your appointment. Take care.x
Hi Lyndy. I hope you can stay on the trial and the side effects lessen for you! Seems like sometimes the treatment is harder than what it’s treating! I hope a positive decision is made to figure out how to safely continue since it’s obviously working for you.
I wish you a Happy Easter and plenty of sunshine. I’m across the pond and expect all egg hunts to be held indoors this year. ☹️ Our weather has been a seesaw this Spring!
Hi lyndy 👋, I hope they sort the trail out for you and maybe adjust the dosage as it sounds like it's working for you. Have a lovely Easter 🐣 I will be thinking of you on the 17th x
Hi Lyndy. Really hope they can sort out the trial for you. I think I'm on the same only just a week in. Wishing you a peaceful Easter- enjoy the sunshine and sending all best wishes xxx
Hope it’s going well for you? I think my reaction was really bad luck so hopefully you’ll be fine and it’s definitely had a positive effect on my cancer markers! xx
Thank you Lyndy. I've definitely been a lot more tired. My neck lymph nodes had started to give me head/neck aches which today, day 5 are not quite so bad- so I'm just hoping it's started to work a bit. They thought my nodes were aggrevating my nerves xx
Hi Lyndy,I really hope that the side effects reduce and you can stay on the trial, it's such a fine balance.
Hope you're feeling well enough to enjoy the Easter weekend. Our Easter egg hunt here in Spain will have to be quick to avoid a big melty mess on the patio!!
Hello original Lyndy! 👋 Who knows the mysteries of technology!So glad your numbers are coming down, maybe they can continue the trial on a slightly reduced dose or something to mitigate the adverse effects? Keeping my fingers crossed for the 17th for you 🤞xx
Hi Lyndy, that’s too bad that you had to take a break in your trial. It sounds like that was working well for you. Hoping that you will be alright when the 17th comes. Sending my best wishes, Donna xx
hi Lyndy. It may be possible they will tweek your treatment. I’ve been on ATARI 14 months now. Have had a few delays and transfusions due to my HB and platelets. It looks like my next cycle they will reduce ceralasertib from 7 days to 4 and I will stay at that. I’m not sure what your dose and treatment is but I’m sure they will do their best to keep you on it . It’s early days . I’ll keep my fingers crossed for you. X
Sorry to hear about your pneumonitis that must have been very tiring for you, hope you’re able to continue on the trial and that you get good news on 17th. Maybe they will be able to slightly tweak the meds for you if you are getting good results, best wishes,
Hi Lyndy SO glad to hear from you I was wondering why we hadn’t heard from you lately. The trial is really good news and I’m sure they will tweak it so that it continues to work without causing you too much grief. Onwards and upwards and good luck on 17th. X
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