When bowel cancer returns

1234annie

Folfiri hell...

Hi all, had my 3rd round thurs. I was chucking up in the chair and that was after they gave iv omdamsatron. I was sick again when I got home, took all the pills and more but got to 4am and had to go to a&e for iv cyclizine. This is sheer hell! My hair is still coming out in clumps too. I'm am seriously starting to wonder if this is worth it. I feel like a total burden to my friends and family and I wonder if all this treatment is actually going to work or just going though the mill. So so hard, kids have been passed from pillar to post. I hate to say it but today feels like I'd be better off dead.
Sorry for being so miserable.
Annie :x: :x: :x: :x:

Lirio345

Try asking for Aprepitant @1234annie which is the pharmaceutical name; Emend is the trade name, Kim :x::x::x:

Clancy

Hi @1234annie, I too struggle with Irinotecan, it really is tough going.i did much better on Oxaliplatin but had to come off that. Christie’s give me Rolapitant prior to treatment. I take Cyclizine prescribed by them. I get my Ondansatron from my GP. It’s really difficult getting the balance right, and no two drugs work the same for say you and I.
And the hair, good G-d I look like Bill Bailey, a sort of receding hairline. I do hope you get this misery sorted soon, take care.:x::x:

Clancy

No I take it back not Bill Bailey, I really like him, I look more like Beetlejuice especially with my new white Epaderm face cream.:x::x:

1234annie
Quote from @Clancy:
No I take it back not Bill Bailey, I really like him, I look more like Beetlejuice especially with my new white Epaderm face cream.

Oh @Clancy, the crap we go though! You made me laugh with the bill bailey 😂
They reallt need to get some new drugs that don't have all these awful side effects. I really hope and pray they do very soon! :x:

1234annie
Quote from @Sasa:
Hi @1234annie Marks not great I am afraid, he has had a stent in his liver and is struggling to recover well. He has also lost a lot of weight and is lethargic with less of an appetite. Keep as fit as you are able is my advice, once you stop it’s hard to get back on track!

Sounds like you are managing this.... once the few days around chemo are over you should bounce back quickly enough my lovely 😊

Sarah

I'm sorry to hear this Sarah. I'm sure you are taking special care of him and he's showered with love ❤ it's not fair, there is no other way to describe this hell. Annie :x: :x:

terri m

Hello dear @1234annie .. So sorry to hear you are struggling with sickness.. I cant really add to the great advice you already have had, but once you have sorted out a reduction in treatment or a different anti sickness, things will improve.. I totally understand your feelings at the moment, but I am rooting for you, & sending you lots of love & hugs dear Annie.. Tomorrow is another day , & you will get lots more brighter ones shead👍💕💗:x::x::x:

kdan

Hi, FYI Im on FOLFIRI
I take Emend, steroids, omdansetron/zofran, stemetil and valoid.
Take Emend Day1, day2, day3 (special pack), steroids IV Day1, oral day2 and day3.
Other 3 oral drugs throughout the days as required.

jj

@1234annie you have been so incredibly strong so it’s ok to have off days. Yes I can only imagine how much this chemo is taking a toll on your body, but maybe it’s a positive sign, it’s killing the cells as well. I have no advice to give as my hubby hasn’t had to have chemo, but everyone has already given you all their tips to combat all the side effects. Praying that it will improve and you will feel more like yourself.
Sending you lots of hugs and best wishes
Jane

Aisling00

You will get through it @1234annie I know I can see the exact same in my father, it’s so tough I don’t know how he is coping, I will keep you in my thoughts and prayers Annie, to help ease these sufferings, and to help give you strength to get through this 💕 sending much love :x::x::x:

Lawsey

Dear @1234annie out of all I for me sickness was the worse and bless oncologist and nurse for Emend
A range if other stuff which since I have gone nuts gratefully forgotten. Wish puking stays away in the bucket

HH79

Hope you’re feeling better @1234annie? All allowed bad days! But look at the positives you have a few cycles, hipec? Possibly some more and done! When I feel low🙁 I remember things can always be worse and just focus on getting through and enjoy quiet activities on low energy days with your kids. You can and will do it. And take anti depressants if that’ll help too. And all the anti sickness you need. Lots love cx

justhope

@1234annie I can’t offer any help or suggestions I just want to connect and say I really feel for you and so hope that you are feeling a little better today it’s sounds so hard but love that so many have give you their experiences of this drug and effects on the body and what helped them, I really hope you get ALL the right help you need for you too, kind thoughts and prayers are all I can offer and I send them to you :x::x::x:

1234annie
Quote from @HH79:
Hope you’re feeling better @1234annie? All allowed bad days! But look at the positives you have a few cycles, hipec? Possibly some more and done! When I feel low🙁 I remember things can always be worse and just focus on getting through and enjoy quiet activities on low energy days with your kids. You can and will do it. And take anti depressants if that’ll help too. And all the anti sickness you need. Lots love cx

Thanks everyone, the sickness is just gently bubbling in the background now and feels more manageable. I think this heat makes it harder as we get exhausted quicker. Another 3 rounds to do, 5 weeks of radio, hipec and another 6 rounds of chemo 😔 atm it feels an impossible task and I'm still concerned they may find peri mets with the tummy camera but what can I do to change it.....nothing!
I am in total awe of you guys who do on going chemo, I really don't think I could hack it! I'm still researching and clutching at straws, taking probiotics and eating saurkraut with every sodding meal. I can feel the 5fu burning my hands on the inside like it did b4 😔.
Anyone read this? Lots of love to u all Annie x x

Sasa

Hi @1234annie , I have read this book, and frankly recommend that if you have cancer just to read the second half of the book as Jane has to ‘big up’ the hopelessness of stage 4 cancer in order to make her story even more remarkable. I told Mark not to read it!

Just as an aside .... if you’re not enjoying the sauerkraut.... if it is shop bought see if it’s pasteurised as if it is there aren’t any live anything’s growing there so don’t bother! Either make home made or buy it live.... unpasteurised.... 😘

Take care

Sarah :x:

1234annie
Quote from @Sasa:
Hi @1234annie , I have read this book, and frankly recommend that if you have cancer just to read the second half of the book as Jane has to ‘big up’ the hopelessness of stage 4 cancer in order to make her story even more remarkable. I told Mark not to read it!

Just as an aside .... if you’re not enjoying the sauerkraut.... if it is shop bought see if it’s pasteurised as if it is there aren’t any live anything’s growing there so don’t bother! Either make home made or buy it live.... unpasteurised.... 😘

Take care

Sarah

The first bit has been really lovely to read, maybe it's because I'm a woman but it made me so greatful I've had my kids and how bloody awful it must be for those who haven't. Thank God I met my hubby at 17 and had my 1st baby at 24 and second at 27!! The saukraut is from Amazon, very much live and unpasteurised. I tried supermarket ones which were rank 😁 Kombucha is yummy too😀. Thank u lovely, I feel well supported thank u all. :x: :x: :x: :x:

cyclingjohnny

hi, i have no right to comment on anything to do with your condition, but i would just like to wish you all the luck in the world and hope that things get a lot easier for you in the future, all the best to you and your family, big hugs, xx john.

lisa7

Thinking of you Annie @1234annie
Hope that your team will control your sickness with a stronger drug. Request a stronger anti sickness from oncologist. Sending you hugs :x::x::x:

Gypsy

I too am thinking of you @1234annie. Love and hugs. :x::x::x::x:

sarahz

@1234annie . Oh sweetheart you're allowed bad days. You may feel like a burden but your family and friends will not describe you as that ,never in a million years . Ask for drugs! There are lots of anti emetics and its a case of finding the right ones for you. Lots of love positive stuff and a big hug :x::x::x::x::x::x:

determinedjoan

Sooo saddened to read that you’ve been hving such an awful time; I am thinking of you & sending love, hugs & healing, soothing vibes & wish u all the v best for treatments. Pls try & hang on in there. My daughter was v poorly & constantly in & out of hospital but I can tell u for certain that I would do it all again in a heartbeat to hv her here with us now, so no - it would defo NOT be better for ur family if u were dead. The treatments are hideous but they WILL come to an end & then hopefully you will feel much better. Sending u strength & courage :x: