Hello fellow CLLERS,
I have just finished round 2 of FCR. First round I had horrendous nausea so bad I couldn't sleep for days. This round they gave me Emend but the unfortunate side effect was severe constipation. I ended up extremely distressed and having to have two enemas and I was still nauseous.
Has anyone had severe nausea and how were they treated? Desperate for advice as can't bear the thought of going through this again.
Thank you all for your support.
Kenn
Ask for an alternative anti sickness drug.
It may take time to find the right one.
Nausea is common with FCR so you need to get it sorted the treatment is bad enough without side effects !
Take control of your med team they are there to make life easier.
So with you..A & E twice because of nausea and vomiting. I learned quickly to try to manage it with a variety of drugs.. I take aprepodent days 1 to 3 but top up with ondansetron. I can honestly say that I feel wiped out but as soon as nausea comes on I take something. Each round I have always been a bit sicky . Take your laxatives too . ..If you can get them down .
Go back to your nurse/ consultant and infirm them .. They need to assess your anti sickness .
Goodluck x
Thanks Bethan. Have an appointment with my haematologist. Biggest problem for me is getting help when I need it. I'm told to phone haematology ward if I have problems but they're not interested if your temperature is in normal range. Then you end up with Nhs 24 and absolutely no consistency of care.
Sorry to hear of the sickness, cannot help with the FCR part, but had two family members who had it. See if you can get a change of tablets.
My Dad fount that if he took his anti sickness before treatment and did so he never felt sick or was sick. If he waited for the feeling, took forever to go away, was more tired etc. So he never suffered doing it this way.
Another refused more meds as they didn't believe in it, they used ginger, from biscuits, tea, in food, ginger piece etc they had it every day for over 8 months. What works for one, doesn't work for another. However, hope you manage to get something or find something, as you don't need additional things to deal with.
(p.s I am travel sick and always carry ginger biscuits lol )
Take care
Sounds to me like you are not consuming enough water... and Emend can cause dehydration...
Ask to switch to Odansetron, I found it to be the most effective in chemo but it didn't touch radiation induced nausea, but you need to stay ahead of the nausea... once nausea starts there is little you can do but ride it out...
At one point I was on 4 different antiemetics... but anticipation is key...
~chris
Im having chemo in tablet form. Does anyone know if it's better as regards nausea if administered intravenously?
Yes Fludabarin and Cytoxan. Wondered if having these via iv (pharmacist suggested it) would help with nausea. Wondered if anyone has experience of this?
Yes I had severe nausea. It's dibilitating. Hospitalised twice during 6 sessions of chemo FCR. " The team "got together with the pharmacists to advise on several different meds lorazepam and ondansetron being the ones I remember. But you do have to stay ahead of the nausea so at the slightest hint take the anti emetics.
Ginger is very good I got sushi ginger from the Japanese shelf in Smarket. Hydrating icey poles from the chemist too.
It will pass with time and a little help with the meds etc but it's a bloody awful feeling.
Sending you a hug
Sheila in Fremantle
So sorry you've been so unwell. I was also sick for two rounds. From the third round they gave me a single Akynzeo tablet before chemo. I then took Odanastron from day 5. I had little nausea and wasn't sick once after that.
Have you tried travel bands? they worked for me, I wore them for the six FCR months and only took them off for baths. They're wrist bands that press on the acupuncture point for nausea - chemo, sea sickness, pregnancy. The Navy give them out to new sailors as standard issue so they must work. Ginger also works and avoid all acid food or drink like coffee, orange juice or tomatoes. Good luck, we know how you feel.
Thank you all for your helpful comments. It can seem so lonely when your locked away from everyone and feeling unwell. Will bring up your ideas with haematologist on Thursday.
Travel bands are called Sea Bands here (California). I have seen them work for children who have terrible issues with car sickness. They are also often used by pregnant women for morning sickness, as well as for chemo induced nausea. Whatever you are given to take, use it on schedule, not when you feel the nausea coming on. It's important to stay ahead of it. I hope your next round goes better.
Took all medication on time but still was terribly nauseous and was vomiting. Will try the sea bands.
Thanks.
I tried all the anti nausea drugs above, ginger and travel/sea bands, but nothing worked. Throughout FCR treatment I felt wretched and lost 7lbs each cycle because I couldn’t eat anything without being sick. The doctor on call even had to come to my home twice to inject me to stop the vomiting.
A friend who is a district nurse urged me to request a syringe driver which administers anti nausea drugs. In spite of pleading with my consultant though, it wasn’t until he had tried all other options that he finally said okay to the syringe driver for my 5th cycle, and it was like a miracle - no nausea!
I was really annoyed that he'd allowed me to suffer for the 4 previous cycles, but at least I knew it worked, and last year when I needed 6 cycles of BR, and the anti nausea tablets didn’t work again, he immediately set up a syringe driver for me to use from the 2nd cycle on. The drugs administered were cyclizine and haloperidol I think.
Good luck with the FCR, and I do hope the nausea is sorted.
I can not give any comfort as my nausea was never really dealt with! But I would speak out loudly and try and get your care team to listen and address the nausea asap. Wishing you a better time for the next round!
Not exactly what you asked as I never really had bad nausea, however I took Ondansetron for the first 10 days of each FCR cycle. You can never be sure as I had no version of me nit taking it but it seemed to control nausea. I'd be careful with the laxatives, I was told that some of the drugs I was getting could cause constipation. I decided to be proactive and took some in anticipation .... not a great idea I discovered ... multiple times (no laughing in the back rows).
All the best, rob
They admitted me for round three , got chemo iv which seems to have helped. Half way there now. This disease is like an endurance test!
Hi all
I have just completed my first FCR cycle and am in complete despair...I have never felt so sick in my life and don't know if I can cope with going through this again. I thought I was a tough old girl who at 53 could handle just about anything! I'm also an RN so well aware of meds, and usage of antiemetics. I feel like I'm going out of my mind! Can someone please give me some encouragement? Many thanks. Warmest regards, Sue from NZ xx
Hi Sue,
Sorry to hear you've had a difficult start to your FCR treatment. As you will have read from earlier replies, those in your situation have shared how critical it is to take your anti-nausea meds well before you anticipate needing them and how making changes to what you use can help.
Only 5 more cycles to go - and you WILL do better next time, knowing what didn't work this time...
Neil
Thank you Neil. I appreciate you taking the time to reply. It's a tough road and this is the best forum I came across with discussion, so thank you for that. Warmest regards, Sue
Hi Sue,
I empathise. After two horrendous rounds they admitted me to hospital for all subsequent treatments. I received chemo over three days by iv and got anti sickness meds via a syringe driver. I stayed each time 5 nights in hospital but it was worth it. I wouldn't have made it through all six if I hadn't been admitted. The nausea was unbearable so I really feel for you. I'm on the other side of it all now and feeling much better. It really passed very quickly once I got on the hospital path. 5 days in . 23 days recovering at home. You need to insist on better treatment. I wrote a letter complaining I wasn't receiving adequate treatment at home and had to rely on call out doctors over the weekend. My haematologist was happy I did this as she agreed I wasn't getting the treatment I needed. Good luck. You will get through it.
Hi Sue. I had two rounds where I was really sick. Then I got a single Akynzeo tablet right before the first load of chemo for round 3, then Ondanestron from day 4. It was a complete game changer. I'm so sorry you felt so sick, I completely sympathise. It seems some of us do get clobbered but it can be helped. x
Thank you BellaBee10. The replies and support from this site has really helped me - I was feeling so alone and frightened at what I was experiencing. It's so comforting to hear and learn from others own experiences. I will get through this! Hugs, Sue xx
I have not seen anyone post about using medicinal marijuana for the nausea, I found it extremely helpful, I had never used it before, but I do use it whever I feel nauseous. I have it in candy form, I cut the hard candy in fourths and suck on it. It truly helps!
Why not use Sativax.. its an oral spray and almost instantaneous.. I have been offered it for radiation nausea, but never used it... although a number of other patients say it works very well. It is commonly used in MS for peripheral neuropathy, but used off label for nausea.
Its a measured dose of known purity...
Nausea and Imbruvica
CLL 11q del, CD38+ unmutated and my bumpy ride during the FCR treatment.
Severe reaction to FCR
FCR Round 2 Uncontrolled Sickness
