FCR Round 2 Uncontrolled Sickness

FCR Round 2 Uncontrolled Sickness

As I reported in recent post about my bloods for the start of round 2, I got into problems with the anti-sickness medication for round 2, and despite trying to analyse what I did wrong in round 1 actually managed to make things worse and ended up in my local hospital to get sorted out. I've been back at home for about a week, and feeling pretty good now.

My fundamental mistake I think was to over analyse the limited information I had from round 1.

Anyhow, this is what happened in round 2:

I started being sick at the end of day 3, this becoming uncontrollable at the end of day 4, then admission to my local hospital on the morning of day 5.

I was probably unable at any time to drink the 2.5 L of water per day minimum, due to the feelings of sickness, and the feeling of backing up in the stomach (We have heard a figure of 4 L recommended but don’t think I could ever get near that while on the chemotherapy. I would have to be physically working hard to be able to drink that much.)

If you remember from round 1 my two anti-sickness meds were Ondansetron and Metoclopramide. My first mistake I think was to stop taking Ondansetron after being sick for the first time (as I incorrectly associated the requirement for Ondansetron to be just to control the Nausea inducing side effect of the day 1 Rituximab). The last dose of Ondansetron I took at 18:30 was just 10 mins before that first sickness episode, which would not have given time for it to act. So I should perhaps take my second Ondansetron dose of the day earlier at say around 16:00.

On day 4 the uncontrolled sickness started 1.5 hours after the 4th set of Fludarabine and Cyclophosphamide. With hindsight I think I made the following mistakes:

a) I only took Metoclopramide that day, no Ondansetron at all having stopped the day before

b) I only drank x1 glass ~200ml of water to take both sets of the Chemotherapy tablets (should have been one glass each)

c) In the 1.5 hours after taking the Chemotherapy I failed to drink any further (feeling sick) but sat there looking at a cold cup of tea, and trying to distract myself writing an email (which did work for a while, but I never managed to press the send button)

Before admission to hospital I did go to see the GP for an emergency appointment. I was given a subcutaneous shot of Metoclopramide, and prescribed a new medication Cyclizine. The hope was if the shot of Metoclopramide could stop me being sick for a few hours then I might be able to switch to the oral Cyclizine. It was a good try but unfortunately I kept being sick so wasn’t able to try the Cyclizine before I was admitted to the local hospital the next day as an emergency case.

During the period of repeated sickness before admission:

a) I didn't make any attempt to take the Cyclizine tablets I had from the GP (as in my mind the 1 off subcutaneous dose of Metoclpramide failed to get me in a position to do that)

b) I was only able to drink small amounts of water to ease the repeated sickness process so was probably becoming more dehydrated

c) I failed to attempt to eat anything e.g. plain biscuit to see if that would settle the stomach (I won't forget that trick again)

Once in hospital taking the anti-sickness meds one at a time by IV, with Cyclizine in the morning, and then Ondansetron in the afternoon when the greatest issue seems to occur, I was able to more clearly understand & learn the effects of the meds with the faster acting nature of IV and with only one anti-sickness agent taken at a time.

So the evidence from round 2 seems to indicate that Metoclopramide does not work sufficiently well for me in oral (or subcutaneous) form, even taking x4 doses per day orally. That could still be to do with absorption levels and rates though. I note I've never taken it by IV so can't clearly identify my issue with Metoclopramide, but I have to move on.

In my case Cyclizine seems to be a reasonable substitute for the failed Metoclopramide, although the action may be different and I haven't proved it yet when taken only orally through a whole cycle. I have noticed (for the first doses) side effects such as stammering (did not get that with later doses - oral or IV so could have been my state of health at the time)

One bit of a worry I did have, the cannula went in my best emergency vein in the left elbow. For the antibiotics we have to take as part of the FCR treatment the normal Septrin tablets were switched to IV Tazocin. Now Tazocin is only available in IV and as a 5-day course so I did have concern that I would be kept in to finish the course, and the same cannula left in for that time. Fortunately agreement was reached that I had no evidence of any actual infection so the cannula removed, switched back to oral antibiotic Septrin (Co-Trimoxazole), and I was discharged on day 7 of round 2. That was a big relief.

I can report that the local hospital staff were very aware of the compromised immune system nature of CLL patients, and I was rapidly moved to isolation rooms, once the drips were in, so full marks. Neutrophils were measured at 0.34 so I think I do have to be careful.

I've always worried about long emergency admissions via A+E (from experiences in the past with the tonsils) but this time my city CLL specialist hospital I was in touch with throughout all the above arranged my admission to the local hospital via an Emergency Assessment Unit special ward, so no need for A+E worries which was a great relief.

One other interesting point I noted whilst in hospital on IV fluids my normal level of Nocturia of ~4 -> 7 times per night was well controlled to just one visit to the bathroom, of large volume. So perhaps I should drink through the night :-) (but not sure if the stomach would agree with that). I will also have to see first how I am with that issue after the FCR treatment.

So I am now hoping I should now be able to perform the next round of treatment with a mix of Cyclizine and Ondansetron taken orally, and I note the words on the Ondansetron packet that it is for both Nausea and Sickness.

I'm also now confident that if I do get an actual infection in one of the later rounds of FCR that my local hospital is as competent as anywhere to sort me out.

Fingers crossed for FCR round 3 then.

So time now to enjoy myself first, and get back a little fitness.

Best Wishes to All,

Ernest.

P.S. Haven't generally had frogs in the pond for years, it having been taken over by newts. Friends came to see us with small children hoping to see the newts, but surprise surprise, Jeremy Fisher also popped up and had his photo taken.

22 Replies

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  • Ernest - Love your frog!

    What a miserable experience with the nausea and all. Could it possibly be that you are reacting to the anti nausea meds? One friend found that that was his issue. New meds - no further problems. I know everyone always says to take the meds before you feel any nausea, but he didn't expect that the meds themselves would do him in. If you still have trouble getting fluids in could you get IV fluids at the local hospital to stay hydrated. Hopefully your next round will be much less eventful!

    Pat

  • Thanks Pat - interesting thought on reactions to meds.

    I think I've found x2 meds though that hopefully work for me, so fingers crossed for round 3.

    IV would be a nice idea for the fluids but don't expect to get admitted to hospital unless I've got a serious problem, and guess my Neutrophils will be very low again, so risks there to avoid if possible.

    My hydration strategy for round 3 is not to over-face myself and try lots of different drinks to keep the motivation going. I noted in hospital that drinks were regular and varied but always small mugs/glasses, so try that while I'm on the chemotherapy drugs. Later in the 28 day cycle I can drink large volumes ok once not feeling sick.

    Ernest.

  • Hi Ernest, First I have to say that like Pat, I love the frog. Such a lovely portrait of him\her. Seems very early for frogs though. Was it taken this year? Our pond is still frozen over, with a layer of snow over the ice, so no frogs yet... They usually appear in March here, as do the newts. Beautiful little creatures..

    I also wanted to sympathise re the nausea... Hopefully it will be better next time, as you have worked out some strategies for preventing\dealing with it .

    Best wishes

    Paula

  • Hi Paula, good to hear from you.

    Yes it is a summer picture, one I've been saving for an HU post. I was surprised when I looked it up to find it was 2013, not 2014 as my memory. How time flies when you enjoy yourself on W+W.

    I feel sure I must do a little better on the Nausea for round 3.

    Ernest.

  • Hi Ernest,

    Sorry to hear that side effects resulted in your second treatment being tough to swallow and keep down. Hopefully from what you've learnt, future treatments will go much much more smoothly.

    Very pleased to hear that your hospital gets it about the importance of keeping you away from the risk of infection with your neutropenia; you don't want to have to be worrying about that.

    I too loved your frog picture and was impressed at how you were able to catch the legs under the water. That's not easy to do. This picture definitely gets my vote for the cover of the CLL fund raising photo album or table top :)

    Neil

  • agreed! the frog is definitely our pin-up.

  • Many thanks Neil and Chris.

    The picture just involved a lot of luck, and digital cameras where you can have as many goes as you like (about x3 for the frog). I probably wouldn't have done that back in the good old days of film. Hard to say then if digital makes you a better photographer, but the results are I think more interesting.

    Ernest.

  • Hi

    I had FCR six times in 2007 and five in 2012. Round 1 2007 very very sick day four taking drugs orally. Thereafter I always. Had it intravenously and take ondansetron and domperidone to maximum dosage at minimum recommended gaps without fail. Works best for me. Take anti sickness drugs before you feel sick! Vomiting is too late.

    I always felt terrible for a week or two and half the time relatively great unless I acquired an infection, occasionally, eg pneumonia.

    I'm now 46 male.

    Corin

  • Many thanks Corin, see you are an expert at FCR. I think they only allow one course of treatment now which perhaps seems a shame if you are young and fit enough.

    Agree with taking the anti-sickness meds preventively before the feeling of sickness. As you say once you are into being sick it is too late. Best thing after FCR sickeness if it does occur is to eat something I think e.g plain biscuit.

    Ernest.

  • Hi Ernest,

    So sorry to hear about the nausea and as a fellow sufferer I really feel for you.

    My FCR was 4 years ago, and by day 3 the nausea would kick in, and I’d get myself home from work and then not move or eat for five days, recovering in time for work the following week. I lost half a stone in weight each cycle from my normal weight of just over 8 stone, and although I begged my consultant for an anti-emetic syringe driver (my friend who is a district nurse had urged me to get one when she heard how sick I was each month) he insisted I wasn’t taking the anti-emetics properly and so it was my own fault that I suffered so much with nausea.

    Finally on my fifth (and final cycle of FCR) my consultant agreed to the syringe driver, and I basically sailed through the treatment that month with not even a hint of nausea! His response when I saw him a couple of weeks later was ‘What a shame we didn’t try that sooner’.

    The ingredients of the syringe driver which are pumped into the tummy at a regular rate over a 24 hour period for days 3 - 7 were: Haloperidol 2.5mg and Cyclizine 150mg.

    If you’re a sufferer it might be the way forward, but you need to fight your corner!

    All the very best on Round 3,

    Ruhi9

  • Many thanks Ruhi - interesting ideas.

    Not heard of syringe drivers before, but found:

    macmillan.org.uk/Cancerinfo...

    So would need a canula putting in.

    Think I will discuss that one if I have no luck on round 3, but I am hoping to do better with what I think I've worked out.

    I can appreciate that some of the meds work ok, but via the oral method for some patients the absorption rate is too slow.

    So fingers crossed.

    Ernest

  • So sorry to hear of your experience. I've mentioned before that it seems to me that here in US FCR is usually given IV with premeds of steroids ( 30mg)and Ondansetron (20mg) on the FC days. Rituxin day includes Tylenol and Benadryl in addition to the other meds. I was then told to take ondansetron 8 mg twice daily for at least 2 days after treatment as cytoxin can cause nausea for a few days post treatment. It seems in UK the oral forms of FC are used and several people have mentioned severe nausea. I was quite nervous about suffering from nausea but have experienced none with the above treatment regimen. Is this nausea common with the oral FC tablets? While doing the iv form does require trips to cancer center, I don't mind if it means I suffer no nausea. I hope that those in the UK could be offered an alternative so they don't have to suffer such side effects of treatment. Good luck on your next round. Joan

  • Thanks Joan, and very good to hear from you.

    I think sickness is common with the oral FC and you are also right I think that the Ondansetron is the key thing I have to get right (as well as the switch to Cyclizine)

    If the IV route were an option in the UK I would be nervous (with such low Netrophils) about having a canula in for so long, so if a method can be found with the pills then I think it is the safest choice.

    Ernest

  • Hi Ernie,

    You have a great point with the low neutrophils and a catheter in long term. At my cancer center they actually don't recommend Picc lines. They use an implanted port a cath. It is a surgical procedure for placement in the chest wall with the catheter threaded to the primary blood vessel. The port is then accessed daily with a specialized needle to provide chemo or get blood which lessens risk of infection as the needle is removed daily. Just wanted to mention in case you ever are in need of Iv therapy and are worried about infection. Good luck and yes the antinausea meds are very helpful if taken prior to the nausea.

  • Many thanks for all that information . I've heard of some of that but didn't fully understand. If the sickness is controlled on round 3 and I don't get an infection then I think the cannulas used so far for the Rituximab (which are always put in the forearm and not the elbow) should be fine. A bit harder to insert (that the normal emergency cannulas in the elbow) but damage afterwards negligible.

    Best Regards,

    Ernest

  • Good luck with the next round Ernie.

    Love the frog too :)

  • Thanks Mikey.

  • I too love the frog. Ernie I hope things are on the up for you now. You take care.

    Best wishes

    Sue:)

  • Many thanks Sue.

    Hope I might see another frog this summer. You usually hear them first if you go outside on a summer evening (I look forward to that)

  • I too had problems with sickness. Yes the anti sickness drugs do work to some degree but if as I did start being sick when you first wake up you do not have time to take the tablets orally. Someone recommended supporities which helped but in the end I was given a very expensive anti sickness drug as well as the FCR being given at 75% dose. I found although these helped with the actual sickness nothing helped with the nausa. This took a long time to wear off ( several wks) after the chemo stopped. Please request more help forrcefully if you have to. Best wishes

  • Many thanks Jan. I've heard of some of those ideas, and will keep them on the list of things to try if I still haven't cracked it for round 3. I am expecting to feel a little sick at times, but hopefully on round 3 not actually be sick, more than perhaps an odd occasion.

    Best Regards,

    Ernest

  • Ernie I totally feel for you - I had the same problems with FCR only last year and it didn't matter when I took the tablets from day 3 I just couldn't stop being sick and couldn't keep water or anything down. Sickness for me was so bad and tablets just didn't work( even taking them before feeling ill) that I only managed 4 rounds of FCR. Interesting comments about the syringe. Might be worth looking into as if you are like me anti sickness tablets just didn't work.

    Female 47

    Good luck and hugs x

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