It’s been a while since posting but I seem to have been in hospital having so many tests being poked and prodded - finally have been accepted onto the clinical trial ONX - starts next Thursday! Well I would have started yesterday and I was all set to go with line in and bloods done when a Dr spotted that omaprezole didn’t sit with this trial drug - humph. Good she spotted it but a but cross that Boone had before ( I have given list of meds to so many before!) but the good news is I’m still on it. Meanwhile the pain increases the cancer creeps on and my tummy is swollen and it’s so scary. The pain meds seems to keep being increased to no real success. Well off to the pain clinic today and the lovely doc will sort me out I’m sure! So there you are - never give up hope as someone said last time - I was there with an oncologist who basically said there was nothing else for me and this popped up! You see ladies it’s worth hanging on in sometimes! Mind you how this will make me feel I have no idea - amy precious trial ladies with side effect knowledge gratefully recurved..! Thanks all T xx
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Hopefulgal1
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My mum is on the onx trial. She has just had her 4th infusion this tuesday. It seems to be bringing her ca 125 down slightly so we will see what happens.
She also had to stop medication before she could start but how annoying for you. Are you at royal marston in london?
Ah thank you for that.. And so happy your mums CA 125 is decreasing! I’m at the christie as R Marsden was going to be a bit of a trial for me to get to. We have decided to stay up here as long as it takes as this is quite a difficult phase for me now and the staff at the christie are just lovely. Good luck and hope no horrid side effects for either your mum or I and fingers crossed it works! Sending hope and love ❤️
Such lovely news for you and the family! Well done your mum... and yes fingers crossed the same happens for me. Unfortunately I’ve had a pain episode so in hospital for a couple of nights - just hoping it doesn’t eliminate me from the trial! X much love and hope to you x
So please that you have been accepted onto this trial, hopefully the site effects will be minimal and it does the trick. Everything crossed for you xx Not sure what time you were these yesterday but I was at the Christies from 8 until about 11, we probably passed each other!
Yesterday was the first day in many that I wasn’t there ! Back today.though. Hope your care there is world class and that you are able to keep a lid on this awful disease - sending you love and care too 🙏💕
Hi Bev - we must have crossed over!! Well let me know what future Thursdays may look like..?
I am nervous but happy to go onto a trial : Fingers and toes and anything else that can be crossed from now on...! As for coffee and cake : I seem to be eating enough for us both: where did that “ no sugar” rule go..hmmmm 😂😘💕
I was on this trial for a month last year. I’d been taking lansoprazole and had to move to ranitidine instead. I didn’t have any side effects from the drug, but unfortunately I ended up with a bowel obstruction so had to come off the trial.
So sorry you had to go through that... and bowel obstructions sound so v painful. I hope you’re back on track now? Such a shame you can’t go back onto it after the hoops you need to go thru to get on. Wishing you a good bank holiday... with love T x
Hipefulgal1! First--so nice to see you posting and so glad you will start the trial. The fear is always there with these! First--what side effects, next will it work, and well--all I can say if GOOD for you that you did not give up when they said "nothing else", GOOD that you got in and I hope they can sort out the pain--that's no fun and getting with the pain team is so smart. Wishing you luck and glad to read you will keep us updated. I will also send a gentle hug--bigger one later when you have positive results! (Fingers and toes crossed) oxoxxo
Oh thank you so much - you are always so together and positive : really appreciate your posting and I’ll try to keep you updated - just rather nervous as you said and we shall see. I just so want these tumours to reduce to allow me to take less pain relief! Thank you 🙏 you have been following my “ story” and let’s hope I’ll continue to drop in on many occasions in the future! All the v best to you too - with love and thanks T xx💕
It sounds like you’re going through a tough time with pain and anxiety. I’m glad you’re going to the pain clinic and wish you the best with the trial. Hang in there!
I wish you the very best! Your attitude and strength will carry you through. As you said...they will sort things out. Keep on it and win!!! Hope your pain gets under control.
Thank you so much Marisa - pain is quite a prob I may google in here to see if there are any general good tips on it..I’m fed up with all these pain meds : I’m off to try a meditation!! Thanks again..T x
ok ,so ive just started ist course of 22 using a oxygen therapy chamber no2 tonight,heard good results from people there using it, enter chamber with 5 others and come out a new women lol,felt so fatigue on my last n4 cisplatin , but can honestly say I have more energy,plus all the good it will do for me! research ladies,its £25.00 a session or you can book inadvance and get a discount I believe ,will keep you posted, one more chemo after this week and my consultant has just said maybe rucarparib? my choice next phase!
How are you doing? I hope the pain clinic helped and that the trial is going okay for you.
Hi woolyhat! I’m not good right now as in the christie for pain management- which isn’t working that well but I also seem to be “backed up” so am taking a ton of movicol and another drug that unblocks you..! So all in all not great but still hoping I am going to resume the trial next week without all this palava...🙏
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Chemo not working but starting another trial - anyone tried 6MP?
Update on my misery 😕
Update
Advice Please - UPDATE 
Another 3 months reprieve
