Happy Birthday 🥳 and Oncologist update.....

[CallmeMum]

Hi my lovelies,

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

[Yoshbosh]

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...

Vicki xxx

[CallmeMum in reply to Yoshbosh]

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

[Hidden in reply to Yoshbosh]

I know what you mean ... I'm going to beat that 5 year statistic if it kills me ... errr probably not a good aphorism. Keep smiling.

[CallmeMum in reply to Hidden]

She’s a stubborn old cow anyway 🤣 xxx

[Caroles1 in reply to CallmeMum]

Stubborn is good! My friend calls me a stubborn little f....r and she doesn’t swear 😳xx

[CallmeMum in reply to Caroles1]

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

[Caroles1 in reply to CallmeMum]

Yes, but you are a good, supportive daughter and so obvious you care.

Keep doing what you do and well

Carole xxx

[CallmeMum in reply to Caroles1]

She’s not the easiest person in the world but I keep her in line 🤣 xxx

[Hidden in reply to CallmeMum]

when my mum had bowel cancer, her consultant called her a tough old bird! sounds like you mum comes from the same mould xxx

[CallmeMum in reply to Hidden]

Not sure what mould she comes from she’s very random 🤣 xxx

[Lindaura]

That’s so great that you have a plan AND a back up plan.

I hope all goes well in the nest weeks and you both get a little respite.

Happy Birthday!

Hugs,

Laura

[CallmeMum in reply to Lindaura]

I hope so too xxx

[Juleswhee]

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

[CallmeMum in reply to Juleswhee]

It’s just the waiting game to see where we go first either trial or straight treatment depending on what the cancer does xxx

[Petrolhead]

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.

Best wishes to you both.

Fay

[CallmeMum in reply to Petrolhead]

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

[Grace-53]

Congratulations on 4 years.

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.

Love

Grace

[CallmeMum in reply to Grace-53]

Thank you and we will do hopefully they’ll be able to tell us xxx

[Hidden]

Hope it goes well. I've just "celebrated" (?) my 4th anniversary since diagnosis too. At least we've got this far ... and many more to come xxx

[CallmeMum in reply to Hidden]

That’s our theory, we see it as a Birthday because it made her realise life is too short and for living rather than being a recluse xxx

[Manchesterlady]

Happy 4th Birthday 🎂 Hope all goes well .

Love Sheila 🙏🙏🙏🙏

[CallmeMum in reply to Manchesterlady]

Thank you xxx

[Lyndy]

Glad you have a plan- fingers crossed her cancer is the good sort! XX

[CallmeMum in reply to Lyndy]

Thank you xxx

[Maxjor]

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

[CallmeMum in reply to Maxjor]

She’s worried as she’s had Taxol twice already but never weekly so hopefully it’ll work better for her xxx

[Maus123]

A way forward. And some rest to start with. Good.

Hope her sickness is better now. xx. Maus

[CallmeMum in reply to Maus123]

She’s better than she was but is realising with food it now needs to be little but often xxx

[ellseybellsey]

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.

Ellsey xx

[CallmeMum in reply to ellseybellsey]

That’s all that we can hope but we have that horrible Sod’s law feeling about it! Xxx

[Juleswhee]

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

[CallmeMum in reply to Juleswhee]

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

[Juleswhee]

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

[CallmeMum in reply to Juleswhee]

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