To start with my special person is 4 tomorrow (4 years since diagnosis) 4 years we didn’t think we’d see so Happy Birthday to her 🎉🥳🎉🥳
Oncologist update: she’s having a 6 week break from all chemo and everything a permanent drain will be installed when ascities builds up next (probably in 2/3 weeks) The trial is the DICE 🎲 trial so it’s weekly Taxol and an autoimmune drug TAG229 or something like that however you don’t know if you have the actual drug or not, so to a degree we’re at crossroads on that score but it also depends on what the cancer does if it plays ball or not if the cancer is a good cancer and doesn’t go everywhere in the meantime then we’re all systems go for DICE 🎲 if not then likely intense chemo and see what she wants to do I think with a permanent drain she’ll feel more comfortable and be in a better place to know what she does and doesn’t want. Xxx
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CallmeMum
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Well that sounds like a plan! I also considered a permanent drain for the ascites, so I would be interested to hear how your special person fares with hers. I hope the break from treatment gives her a nice breather and a chance to re-group. The trial sounds interesting, but it's a shame you won't know if she is on the actual drug or not.
Thanks for the update, and happy 4 year cancerversary to her! My 3 year one is just around the corner...3/5 of the way through the survival stats...
It’s definitely a plan as I said we just have to hope the cancer doesn’t decide to go everywhere in the next 6 weeks. I’ll update as soon as I know about the drain and how she gets on with it xxx
I often call her a stubborn cow, I’ve said it in the oncologist office and they’re so used to us nothing surprises her as to what comes out of my mouth 🤣 xxx
Hi , A plan is good, having a back up plan even better .I hope she regains some strength and feels better during the next six weeks and can then move forward with the next treatment whatever that might be .xxJuliaxx
Definitely a plan. Happy 4th birthday and the present is a break from chemo. I hope the insert of the drain goes well and the trial starts ok. We will all be willing her to do well on the trial. I shall await your updates with interest.
For the drain she has to be full of ascities first hopefully it’ll happen within the time frame they like to do it at the hospital. As for the trial I hope it works out! I’d love for her to have a break from everything! Xxx
With trial drugs, you can sometimes say whether you’re on it or not, based on the body’s reaction or some side effects. Ask the oncologist when your mum is at that point.
Fingers crossed the 6 week break does a lot of good and then onward to the next. So much unknown and how hard that must feel but it sounds quite positive in terms of next steps...even if not on the secondary drug, I hear weekly taxol works well for many. oxox
Thankfully you’re special person has a plan, I do hope the drain helps with the fluid, She will need this break from chemo to gain some strength, I hope the beast behaves and she gets on the trial.
Hi Lovely ,hope you and your special person are doing OK .I have had a bit of a set back this last week and have now been offered the Dice trial too , is your SP going to go ahead with it ,have you had any thoughts , seems to be quite new so not a lot of experience to glean ? .xxJulia
Hi lovely, until the 23rd we have absolutely no idea as that’s when she sees her oncologist so we’ll know more then, she’d have been 6 weeks without treatment so goodness knows what the cancer is doing and if it’s worst case scenario will she be eligible for it? As soon as I can I will update further on that she’s had a permanent drain fitted now so that should make life easier for now xxx
Ascites isn’t fun hope she is better with the drain, I haven’t got that just a gut load of poo which prompted a CT yesterday, it is just poo but aggravated by new cancer cells as confirmed growth .Seeing Consultant again Tuesday .Will Let you know how I get on .Supposed to be going on a cruise Tuesday so just cancelled that , hopefully will still make Glastonbury , but I will be bald again , think I will have to rock it out lol.xx
That sucks that you have to miss your cruise hopefully you can book one for later in the year? I’d rock the bald at Glastonbury 😊. Definitely let me know how you get on and I’ll update you when we’ve seen my special person’s oncologist. Hopefully she’ll get on the DICE trial and get the actual stuff rather than the placebo, same for you I hope it’s the actual autoimmune drug and not the placebo xxx
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