aliftus yrial

[Lookingahead]

hi , Is anyone on the Aliftus trial ? If so , how are you getting on ?

x x

[doodoolatrice]

Hi, yes im on the Aliftus Trial under the Royal Marsden in Chelsea. Im on 3 weeekly taxol and im also receiving the trial drug 2 weeks on and 1 week off. I started the trial in July and a recent scan showed some encouraging results. Im just on my way to london today for my 9th infusion so its long days as i leave home at 7.20 and often dont get home until 23.00. Not helped by me having to have the infusion done very slowly (my body doesnt like taxol) and constant train cancellations. I can often be seen running backwards and forwards from Kings Cross to St Pancras trying to find a train home 😆. Please feel free to ask me anything, Kerry x

[Lookingahead in reply to doodoolatrice]

great to hear from you . It’s so good to hear your experience. I may be on this trial . How do you find it affects you? Are you very tired? How far away do you live ? Sorry for all the questions !!! Good luck on the trial and I’m praying you get a really good response . I’VE had all the usual treatment so far but still left with tiny tumours scattered around the abdomen and a spot on the liver and on the spleen plus my CA-125 is really high !!

I have coped well done far but a bit panicky now ! I know I need to relax but I will feel better about all this once treatment starts . Sending you love and hugs 🥰

[doodoolatrice in reply to Lookingahead]

I'll be honest i didnt start off in a good place as i had a pleural effusion and had a semi-permanent drain in place. The drain was causing me a lot of problems as it was pressing on a nerve and it also became infected so i was very run down and in a lot of pain (i was under my local hospital for this). Therefore when I started the trial I had lost a lot of weight, I was mentally drained and my body was really struggling. Some people cope very well with weekly chemo, ive struggled but I'm convinced thats because of what ive mentioned above. Thankfully I've now had the drain removed, so im feeling much more comfortable and the infection has cleared so im no longer on antibiotics. Yes it does involve a bit of travelling as im in London 3 weeks out of 4 which made it daunting at the beginning, but im used to it now. Ive been signed off work so i can concentrate on my health only. Im focus daily on eating well and trying to refuel my body and get my weight back up. Ive learnt to take each day as it comes and despite not starting off in a good place i actually do feel stronger than i did. Like you i have bits and pieces scattered all over my abdomen. I know starting a new treatment is scary but you get looked after extremely well. My Trials Team are brilliant and are always at the end of the phone. Where are you going to be receiving your treatment ? Kerry x

[Lookingahead in reply to doodoolatrice]

the Royal Marsden — like you ! I think you are amazing to cope so well after being so ill at the beginning . That train journey is tiring on a good day. Please Look after yourself and keep eating well . Do you have any help at home ? Sending you hugs 🥰

[doodoolatrice in reply to Lookingahead]

I knew what i was signing up for so i just got on with it and they are all so supportive which really helps a lot. Are you under Dr Banerjees Team and where will you travel from. I have a wonderful husband at home who has been fantastic. Hugs right back and please keep me posted as to what you decide to do 🤗 xx

[Flute_7 in reply to doodoolatrice]

hello, doodoolatrice, I wondered if you might know what the new Aliftus trial drug is called that you are on as I’m also going to start on a trial at the Royal Marsden. I was told I may be on the trial drug but it may also be a placebo alongside Taxol, is this the same for you or were you told you would definitely be on the new trial drug - sorry for all the questions just very keen to be on the trial drug. Many thanks, and best of luck in your journey xx

[doodoolatrice in reply to Flute_7]

Morning Flute_7, I was told when i signed up that the computer would pick at random which treatment I would be offered and i was lucky enough to be offered the trial drug called Catequentinib. I have 3 weeks on, 1 week off taxol and I take the trial drug for 2 weeks on, 1 week off. Good luck, I hope you get offered it as well. Feel free to ask me any questions, Kerry

[Flute_7 in reply to doodoolatrice]

Thank you Kerry, yes that’s what I was told too, so I may find out in time then if I will be one of the lucky ones. 🤞🏼🤞🏼 I hope you go from strength to strength and if you don’t mind may contact you again to see how it’s all going. I don’t know the name of the trial drug being used in the trial I will be going on at this stage, so may possibly be the same one as you. Thank you for your reply and all the best xx

[doodoolatrice in reply to Flute_7]

I will keep everything crossed for you that you also get the trial drug as well. Yes of course feel free to contact me at any time, Kerry x

[Lookingahead]

I will be under Dr Banajee . Luckily we have family in London and can stay over x x

[doodoolatrice in reply to Lookingahead]

Having family in London will be massive help. Good luck, Kerry