Hey Rach
Heh! We’ll make it! Next Monday will be our countdown … Thursday for Paula of course. We’ll have to count ourselves to the end of Epi on this thread!!
Hi Gill, Roll on end of epi for us all. No more bright red liquid in our cannulas
Hi
it is good to hear you all bouncing back after tough bits, a real help to people like me. I am about to join the trial and hope to hear what arm I get on Tuesday. Does anyone know whether I can still go on the trial if I have an implanted port? After a n hour just trying to get 4 tubes of blood by every method they knew and failing to get much, I have been told my veins (when they don’t submerge and disappear altogether) are too thin and won’t cope with even the first epi. Had a big cry about another op so soon but more cheerful today.
X X to you all for helping out
Hi Lily
Have you now heard which arm you’re one? I can’t see that there would be a problem between being on the trial and having an implanted port … they’re two entirely separate things aren’t they?
But anyway, best of luck with it all and let us know how you’re getting on!
Gill
Hi GillianG and everyone else
I got arm one, which was the one I didn’t want as I will go on to half pay before it finishes. Psychologically I want to feel that I will be finished by Christmas but then you don’t always get what you want, or none of us would be in this mess! The port was not a problem for the trial, so I have the operation on Monday and see a vascular surgeon tomorrow, who will explain more. I had really hoped that the surgery bit was done now. However, I have been cheered up by people telling me that once the port is in, I will find chemo much easier. I am talking myself round about being on arm one and have put a new thread out so hope someone on that arm will reply. There must be good and bad points to all of them I guess.
Thanks for asking. They also fitted in a total body bone scan on Friday so I will be radioactive again - how kind!
Take care
Lily x
Thanks for letting us know Lily. I shall write on your new thread about the arm you’re on … but best wishes to you. I didn’t think the port would be a problem and am pleased that’s not the case. I’m sure everything will go well for you.
I had a bone scan - it’s a weird process but perfectly okay. They wouldn’t give me the results at the time but I pestered and was finally greeted with, ‘we’re not repeating anything so it’s okay’. And it was okay.
Good luck!
Gill x
Gilliang, I tried your idea but the guy would not say a word, said they only get hazy images and print them out later. I was really pleased that it was a tiny injection but I could taste metal straight afterwards and then had a burning tongue. Weird. Had to wander round from 11.30 until 3.30 so ate a lot of food in this time.Where are you up to in your treatment?
Next stop the operating theatre for me on Monday.
Have a nice weekend
Lily x
Hi ladies, Last epi done, now tablets. Hooray !!!
Rachy7
well done, hope they are an improvement,
Lily x
Yahooooo Rachy…its such a relief isn’t it?
Pxx
Best of luck Lily. Can’t blame your veins for wanting to hide but the port should make it an awful lot easier.
I finished the first round of Xeloda on Wednesday and it was pretty much ok… a tad ‘loose’ from about day 11 but stopped with immodium. Hope you fare well on it Rachy.
jennifer xx
Lily, sorry you didn’t get the response you wanted after your scan. They know what they’re looking at and can see if anything is questionable … but officially of course they shouldn’t say anything. Hope all’s going well for you now.
Hi Paula, Rachy and Jen! That last epi was tough on me … it absolutely knocked me out for a couple of days and left me feeling very hazy for the whole week. But hey! I’m back in the land of the living now … and no more epi!! Thank goodness!
With the hospital’s permission I’ve awarded myself a ‘chemo holiday’ ie. I’ll start the Xeloda a week later than I should have done. I just wanted a two week gap before anymore chemo so that I can build up my resources again. It’s already made me feel better knowing I’ve done that.
Hi Ladies, I am in the land of the living again too. But as like you Gill the last epi was tough. I feel very weak still and faint sometimes. I was told it could be anaemia. A chemo holiday sounds great !! I f I still fell weak on Friday and my bloods say this I think I will do the same (hospital on friday to discuss xeloda). Think this xeloda sounds more ‘humane’ to me. Did any of you get bad constipation on epi ?
Hi Rach
You poor thing! I hope you recover enough so that you can enjoy some time away from chemo. For me, having a chemo holiday has done wonders for my morale … I feel human again! Given that with this trial everything’s been so quick ie. a week on, a week off … to have an extra week is just wonderful. I’m suddenly feeling more energetic which I think is a purely psychological response. Let us know how you get on.
Regards the constipation … no. I suffered the other way which I hadn’t expected. Our systems are so messed up with this stuff.
I still have the mouth ulcers, foot blisters etc., but it’s good to know that all of this will change. Just hoping not to get hand/foot syndrome which knowing my luck will come my way!
Take care Rach
Gill x
Hi all, day 2 of xeloda and … I feel absolutely fine. Hope it carries on like this as feel almost human again. Hope you all have few problems on xeloda like me.
Rach xx
i’m an arm three person but on second bout of xeloda and doing ok… hey kids… this bit is a doddle (i hope!) for all of us. chemo hol sounds a good idea - maybe accelration is not all it is cracked up to be!
take care
thinking of you
Jennifer xxx
Hi All
Good to hear everyone is doing ok. I am now on day 6 on tabs and so far so good. I have not had any of the D word, just the usual free flowing as I like to call it. I have not had to have any anti-sickness tabs either except for the first 2 days and that was just to be on safe side. My Onc said by the time I have radiotherpay I should have a nice covering of hair on my head…whooo hooo
Gill…I will email soon my little boy not been well again.!!Hope you have had a good chemo free holiday week!!!
Rachy…how are you doing?
Jennifer…great to hear your doing well.
Take care ladies
Love P xxxx
Still no nasty side effects from xeloda. i am pleased !!!
Good luck everyone
Rach xx
Hey everyone
Rach, Paula and Jen, I’m pleased to hear you’re all doing okay on the Xeloda. After my chemo holiday I shall be joining you all next week. I’m really encouraged to hear that it really does seem different to the epi - phew! I hope you continue to have few side effects.
I’ve finally got rid of some of the side effects I was suffering from - they feel like they’ve really gone now as opposed to waiting in the shadows to leap out at me during the second week of the epi!! For the first time in weeks, my tongue feels normal again.
Hope your little boy is getting better Paula.
Take care all!
Gill x