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Nausea with FCR

Daisy1993 profile image
28 Replies

Hi all was just looking for some advice. I have just finished day 5 of my first cycle of fcr. The first day I felt fine but every day since I have had terrible nausea and also physically been sick. Does anyone know if this stops now i have finished the 5 days oral chemo and any advice on how they coped with it.

Thanks x

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Daisy1993 profile image
Daisy1993
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28 Replies
GMa27 profile image
GMa27

I had IV FCR and had a few days of nausea here & there. They gave me Zofran (Ondansetron) 8mg under the tongue (sublingual) that melted immediately and took care of it. Sorry u are going thru that and frustrating they didn't give you those meds before your treatment to have on hand. 💕💊

Daisy1993 profile image
Daisy1993 in reply to GMa27

Hi thanks for replying. Sorry i forgot to mention i was given the anti sick tabs (actually the same ones u mention but just normal tabs) to be taken 2 x day and also some back up anti sick for in between. I did ring up the hospital and told them i had been physically sick and they have noted it down. I will just have to hope it eases off. Hope u well take care x

GMa27 profile image
GMa27 in reply to Daisy1993

Sublingual are faster than tablet form. Can you ask for those?

Daisy1993 profile image
Daisy1993 in reply to GMa27

I will do if i feel there is no improvement by monday. Thank you x

Luap001 profile image
Luap001 in reply to GMa27

I just posted in reply to nausea experienced by a Venetoclax patient. Nausea is terrible so it bears repeating. We have had a good experience with a wrist worn device called Relief Band which manages nausea with electrical stimulation.

Jm954 profile image
Jm954Administrator

Hi Daisy, it's really important that you let your medical team know about your dreadful nausea and vomiting immediately. There are lots of really effective treatments for it and you shouldn't be suffering like this.

Please let us know what they say

Jackie

Daisy1993 profile image
Daisy1993 in reply to Jm954

Hi jackie i did ring up the hospital and they did note it down. I was just hoping now i had finished the chemo tablet part the nausea would subside. Will see how it goes over the weekend and if no better i will ring the team on monday. Hope u r well take care x

Wheatkings profile image
Wheatkings

Hi Daisy - I've just finished by 3rd FCR cycle this past week and I agree with the others that you should work with your treatment team to find strategies to alleviate the nausea.

I had quite a bit of sickness with Cycle 1 and they changed my anti-nausea meds which helped for Cycle 2. During Cycle 2, I still had quite a bit of nausea on Days 3 and 4 and was sick only once. They tweaked my meds again and this past Cycle 3 was much better with no sickness and nausea rating only 3-4 out of 10 on Days 3 and 4. The other days were good.

My Cycle 3 anti-nausea med routine was Ondansetron morning and evening and Olanzapine as needed (which I took a couple of times). For me, what I learned was that constipation (from the anti-nausea meds) also contributed to my nausea due to toxin build-up in my body and so I took 2 tablets of Senokot (laxative) morning and evening. All of this helped immensely and my Cycle 3 was much better.

Hope this helps and that you can get relief from the nausea. As my doctor and nurse told me, you shouldn't have to deal with the nausea but it might just take some changes to the meds to deal with it. Best of luck...

Daisy1993 profile image
Daisy1993 in reply to Wheatkings

Hi wheatkings thanks for yr advice and i will speak to my nurses on Monday if i feel no better. Glad u finally feeling better on yr 3rd cycle it makes the next 3 not seem so daunting when u know the side effects can be reduced. Good luck with the rest of yr treatment take care x

bennevisplace profile image
bennevisplace in reply to Daisy1993

Hi Daisy, nausea is a common side effect of chemo ☹️ For me it didn't get better with each cycle, the reverse if anything, despite taking Ondansetron and various other take-aways from the haematology unit.

Subject to your doc OK-ing it, try anti sea sickness patches which you can wear behind the ear for the nauseous days each cycle - herbal etc available online. They worked for me. Others have had success with CBD oil.

It's a tough few months, but once its over you'll feel so much better.

SofiaDeo profile image
SofiaDeo

I like prochlorperazine suppositories at night for long lasting nausea relief, and since they cause drowsiness this helps at bedtime. Also helps ease stools out if they tend to be hard (I have hemorrhoids, so not aggravating them is always a plus). I agree the ODT (oral dissolving tablet) form of ondansetron works much, much faster than the oral tablet. It's not actually a strict "sublingual"...you can put in a cheek next to teeth as well as under your tongue, if you dislike putting things under your tongue. As long as you don't have arrhythmias or other cardiac conduction issues, it's very safe. So consider asking your team for an ODT add-on to supplement the scheduled regular tablet. And possibly the suppository if you have trouble sleeping, and theres no other medication or disease contraindication.

Daisy1993 profile image
Daisy1993 in reply to SofiaDeo

Thanks for all yr advice. I will ask about the ODT form of anti sickness when i speak to them on Monday. So far not had any trouble sleeping which is a plus. Hope going well with you take care x

Wheatkings profile image
Wheatkings in reply to SofiaDeo

I agree Sofia. I switched to the dissolving film version of the anti-nausea med for Cycle 3 and it worked much, much better.

devonrr profile image
devonrr

Tip:

Take the 2 anti sickness pills like this.

1. First thing in the morning to be an hour before your first chemo tablets.

2. Last thing at night as you get into bed.

As people have stated you do not need to suffer from nausea and yes once the first 5 days per cycle have gone you will not have nausea.

Persist. FCR can have such good results.

Best wishes.

Daisy1993 profile image
Daisy1993 in reply to devonrr

Thank you for the tip. I will definitely try that. Take care x

AnneHill profile image
AnneHill in reply to Daisy1993

Hi, Please be assertive and tell them how awful you have been. I was told that if the tablets didnt help that I was to tell them and they would change them.I had mine changed and I was a lot better. Take them even when you feel ok.

I didnt feel bad all the time. I hope you get help. Anne uk

AussieNeil profile image
AussieNeilAdministrator in reply to AnneHill

Daisy, I agree with Anne and many others that have encouraged you to be assertive in achieving changes in your nausea management. Your medical team should know that there is no one anti-nausea solution that suits everyone and that a simple change can make a world of difference to your treatment experience. It's so very important to do what you can to maintain good nutrition while your body is dealing with the side effects of treatment and dying CLL cells. Being proactive is the key to successful nausea management; once you develop nausea and have difficulty keeping things down it becomes far more challenging unless you are still connected to an IV. I hope to hear of a major turn-around next cycle.

Neil

Daisy1993 profile image
Daisy1993 in reply to AnneHill

Thank you for replying i am going to let them know. With it being my first cycle i was just wondering if it got better with the next cycles. Fingers crossed. Take care x

AnneHill profile image
AnneHill in reply to Daisy1993

Its 10 years since I had FCR. Strangely I didnt have Rituximab on the first month. I didnt have any symptoms on that month. I felt unwell as each cycle went by but not really awful after the sickness meds were changed. Only for 4 days. The rest of the month I was a bit tired. It was the2nd or 3rd month after the Rituximab that I came home from the hospital that I felt really awful but not physically sick. I rang the 24 hour helpdesk and went back to the hospital. They changed my meds and were very kind. I never felt that awful again. It is always a good idea to drink lots of water and take the maximum meds. Take it easy and rest.

Dont be brave. Nobody knows how bad you are unless you tell them. Its no fun but 6 months and it will be over. Good luck. Anne uk

Daisy1993 profile image
Daisy1993 in reply to AnneHill

Wow 10 yrs anne thats brilliant news. Am glad yr doing so well 😀i found some anti sick that i had from the hos before my treatment a month or so ago and i have taken them. I don't know if its them or because its day 7 and i heard thats a good day but don't feel as sick. So fingers crossed. U take care x

AnneHill profile image
AnneHill in reply to Daisy1993

I have just remembered that I started taking the tablets with milk. I couldnt get the water down. It seemed like it was bubbling up. I checked with the hospital and they said it was fine. One day when I was in the waiting room I heard someone else saying they couldnt swallow the tablets. Maybe milk lines your stomach and protects it. That is what my mother would say.

I am taking Ibrutinib now and it is affecting my muscles and joints. It works but there is no end in sight. FCR has an end to look forward to. 1 down and 5 to go. Anne uk

Daisy1993 profile image
Daisy1993 in reply to AnneHill

Thank you anne i did read this somewhere 😀thats another side effect i think my memory is frazzled 🙄 i will start taking them with milk. Anything is worth a try. I was offered the flair trail but decided to try fcr first. Sorry yr suffering on the ibruitinib 😔 u take care and thank you for taking the time to reply. X

Floxxy profile image
Floxxy

I had FCR 2 years ago. I had the Rituximab IV on day 1 at the hospital with the rest in tablet form daily for 5 days. I always felt fine days 1,2 and 3 then very tired and lacking energy day 4 and 5 with sickness and severe tiredness day 5,6 and 7. I then gradually got energy back and week 4 was generally ok. I hope it goes well for you. X

Daisy1993 profile image
Daisy1993 in reply to Floxxy

Thank you and i hope everything is well with you x

Floxxy profile image
Floxxy in reply to Daisy1993

I've been in remission for 18 months. I hope you do well. X

Daisy1993 profile image
Daisy1993 in reply to Floxxy

Thats great news and i hope u remain like that for many many more. 👍😊

Anthonymac profile image
Anthonymac

Try Ondanestron ( not sure spelling is correct!) it worked for me after FCR

Daisy1993 profile image
Daisy1993 in reply to Anthonymac

Hi thats what i was given. But just saying to anne previous post that I had some other anti sick tabs which i have taken and don't feel as bad today. Keep well x

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