Little update

Hi jane19, I'm sorry to read your post...I'm sending you and your partner all the best wishes in the world. How frustrating to be going through this recurrence and the waiting game again! I've not heard of xeliri but it sounds rough. My hubby (also stage 4 but spread to liver) is on xelox which is knocking him about. Current side effect is debilitating dizzyness.. Not nice. There's only a 4 day break in his cycle too. We're earlier in our journey, he hasn't even had surgery yet...He's got his scans and last round chemo next week. Anyway just wanted to say I hear you! Fellow passengers on this wild and *not* wonderful ride. Hope you guys get your new treatment plan soon.. Big hugs xx

Fingers crossed the scan results are good and surgery can go ahead with your partner. This certainly is a bit of a crappy ride. Everytime we reach a new normal things change again. It's hard when you just can't even plan a day out in advance. Yesterday was a rough day for him. Sickness, pain and his temperature was creeping up. Luckily we avoided hospital and he feels better today. Hospital was on the ball and rang him a couple of hours later with the new treatment plan which surprised us as we've had to previously chase every appointment. The picc line goes back in Tuesday ready for chemo to begin again Wednesday. Hopefully he will start feeling less rubbish xx

Hi

That sounds rough . I had to look that combination up too . That’s a lot of chemo in the one go . I think I have seen that used in America but to be honest my mum was knocked sideways with the two agents . He did well for trying and I can get his reasoning . I have noticed different protocols now being used quite a bit  or maybe found better ways to administer it . 

Hope he is feeling a bit better today and it’s clears out his system quickly . Glad he avoided hospital and hope he turns a corner soon . 

Take care ,

Court 

It was a tough combination and usually given 1 week on then 1 off or 2 weeks on and 1 off but our health authority set the guidelines of 9 on and 5 off but the way he had the doses meant he only had 4 whole days off it. Was just too much. 2 cycles in, he lost his hair and looks pale and drawn. Even.the dr yesterday said he actually looked ill for the first time .

Court I though your mum had the same combination or was it just the capecitabine she had? 

It was a tough combination and usually given 1 week on then 1 off or 2 weeks on and 1 off but our health authority set the guidelines of 9 on and 5 off but the way he had the doses meant he only had 4 whole days off it. Was just too much. 2 cycles in, he lost his hair and looks pale and drawn. Even.the dr yesterday said he actually looked ill for the first time .

Court I though your mum had the same combination or was it just the capecitabine she had? 

Oh I don’t think my mum would have tolerated that to be honest . She just had the capecitabine . She has actually never had anything else . She was suitable for a biological agent but was not funded here at the time . I think I read that Capecitabine is more toxic orally and she certainly had a rough time but had the full week off treatment and that was by far her worst week for side effects . Looking back she was really ill with it but I have to say it did an amazing job at Shrinkage. She really did not the biological agent added anyway as she felt she had enough .

I can totally understand why four days was not sufficient time to start again . It was only the two days before her next infusion that she felt able to go through it all again . Such a shame it’s policy though As an  extra few days might have been helpful . However looking back I do wish we had acted at the time and had her dose reduced . We did it the second year and what a difference it made . I am firmly on the side of quality of life too and I think we made some mistakes along the way .

Glad they are moving quickly though at least he can get back onto a more suitable treatment quickly .

Did it knock his CEA back ? 

Take care ,

Court 

His CEA hasn't been checked since his last lot of chemo which finished back in March but his has never been a hugely reliable indicator...always between 1 and 3 before and during treatment. He's due to have it done next week. 

Hi,

I've been on Xeliri for the past year, I started my current cycle today. 

I feel after reading your post that I have been very lucky in terms of side effects.

I have Irinotecan by iv on day 1 (I have this over 30 minutes) then I have Capecitabine tablets for the next 2 weeks (1800mg twice a day).

I get some nausea on day 1 but apart from that the only side effect I have had is complete hair loss! Head, body, everywhere!

We're all very different and so are our cancers and our reactions to chemotherapy,

Hopefully your new regime has the desired effect.

Take care

Pete

Hey , good to hear from you. Hope it is working. Good luck.

Sorry guys I completely misread the xeliri , my mum had Xelox and the second year was much easier when her dose of oxaliplatin was reduced by 20% . I thought he were having oxaliplatin along with the xeliri and thought that was quite a hit . But I went back and read again and see there no oxalipatin in the mix . 

My mum liked the fact she could take it at home and was free from all lines etc . So I can totally understand why he wanted to pursue that . 

She did have a full week off though and needed that both years . 

Glad you are doing well with it Big Pete . 

I wonder why they have reduced the cycle to four days off ? 

There used to be some research saying that the xelox achieved a lot within the first four cycles so hopefully the capecitabine was at work despite making him so poorly . 

It continues to confuse me how two people with the exact same cell type can respond so differently to the same drug but I guess that’s also where the hope lies .

Sorry for the confusion and I will get my glasses on the next time .

take care ,

Court