A few people have kindly messaged or posted to ask how things are going with the FCR, so I thought I'd do a general post in response.
Well - I'm on day 7 now, and feeling a bit beaten up due to a debilitating nausea starting on day 3, and only just beginning to wear off. I'm going to see my consultant next week, for first set of bloods so will ask him to change my anti-emetic provision, as it didn't seem man for the job in my case. I took metoclopramide and ondansetron, but had constant nausea and some break-through vomiting during treatment, so I need to get that sorted before the next cycle. Might try acupuncture as well - anyone out there had any success with that for nausea?
On the positive side, my spleen has shrunk right back from 8cm palpable to barely palpable, and my constant companions for the past two years, the motley collection of lumps and bumps in my neck, are also all but gone. I also handled the rituximab without any infusion problems at all. In fact, on day 2 I was thinking I was just going to take the whole thing in my stride, but then the nausea hit me like a sledgehammer...there's hubris for you!
I'm taking it easy now until next week's consultation. Hats off to all those who say they managed to work through their treatment, or felt very little in the way of side effects...I've never felt so sick since I was pregnant! Apparently though, if you are female, around fifty or below, and experienced significant nausea in pregnancy, you are more likely to experience nausea through chemo, although allegedly just adjusting the anti-emetics to suit each individual based on responses to the first cycle usually works for everyone in the end. What was your experience with nausea Fieldmeadow? Also Lou - I seem to remember you saying that you had felt very sick too - how did you cope?
Haven't noticed any hair thinning as yet - does that happen fairly quickly, or more gradually over the course of cycles?
Also - I want to make the point that I think my insistence on trying to hang on for the ibrutinib trial put me very close to missing the optimum window of opportunity for treatment of any kind. On my final visit to my consultant before giving the go-ahead for FCR, my spleen was so enlarged as to reduce my lung capacity on the left side - I literally couldn't get enough breath in, and felt as if my chest was being constantly squeezed. I asked my consultant to discuss possible options for waiting or bridging therapies to take me to the trial date with a leading UK CLL Professor and Consultant on the trial committee, and he came back to us stating unequivocally that, based on my case history, I should opt for FCR immediately and not attempt to wait any longer. That won't be the case for everyone trying to hang on for a crack at ibrutinib, and you need to be guided by your consultant and what your body is telling you, but it was only when my breathing started to become compromised that I realized what a delicate and very individualized balancing act the decision to start treatment can be, and how quickly things can progress once the CLL reaches critical mass. It isn't my intention to scare people here, just to say be careful and take very well-considered advice and close-monitoring of your progress if you're approaching treatment time and planning to try and hang on for a trial. My consultant told me that he thinks I would have been 'very sick indeed' if I waited until January to start treatment, so just be vigilant, take sound advice, and look after yourselves if you're playing the waiting game.
Right - I'm off to drink more iced water, and take in a couple of episodes of House. My lovely friends have donated their boxed sets to keep me going through chemo, so I'm taking advantage of a rare opportunity for some R & R. Will update on results next week, and feedback on any advice on anti-emetics from my consultant as it may be useful to others experiencing nausea
Finally, I have to say that, despite the nausea, which I hope I can get on top of by being pro-active before the next cycle, to feel the bulky nodes melting away is a kind of magic.
Love and strength to all - currently managing without, making decisions about, facing imminent, going through, or out on the other side of treatment of any description.
Jxxx
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Hi J so good to read your story so hard to do it without reacting. Thanks for taking the time to share, I am sure our recent treatment travelers will be in touch to share their knowledge.
I also struggled with nausea and vomiting for the first couple of cycles, but thereafter it became more manageable. I can't say the nausea went away completely during any of the 6 cycles but it did diminish to a level where I was able to go about my daily business as usual. I tried Cyclizine as an alternative to Ondansetron and Metoclopramide but to be honest the latter two, particularly Ondansetron were the most effective. Key for me, was to make sure I continued to eat, even when I didn't feel like it, and take the Metoclopramide religiously even when the nausea was low level. Better to keep it at bay than try to stop it once you already feel ill.
Good luck. I'm sure the blood results will reflect the reduced lymph nodes.
I had terrible vomiting with my first 2 cycles, to the point of needing intravenous fluids. (I'm on a clinical trial rather than FCR) . The protocol called for the 3 anti-emetics already mentioned, (together) which clearly didn't cut it for me. They have now added in Nozinam which has worked a treat, and I sailed through cycle 3 with no nausea or vomiting. Might be worth asking if you can try it.
Not sure whether crystallised ginger will help you but it is supposed to be good for nausea. I have just made a batch - as it makes a nice snack - passes the time. Not sure if this would interfere with your medications.
Good to hear from you Jules. Here's hoping you have a similarly good outcome as Louise has had. She says of her good results, 'It makes feeling so sick for the 5 rounds well worth it'. For others, it seems, the sickness abates after 2 or 3 rounds.
Good that your lymph nodes have gone down so quickly
Not much to say about the Ibrutinib study yet, lymph nodes down as well, which is great! but until month 5 when I have another CT scan and bone marrow biopsy, I don't know how much the Ibrutinib has impacted the extensive lymph in abdomen and on my spine and in the bone marrow. I certainly feel better although blood counts have not improved greatly.
However, it's early days still and it's going well with no side effects so far.
Thanks so much, J, for letting us know how things are. You write so clearly - I almost felt I was going through it all with you. I do hope you get anti-emetics that work better for you next time.
Jules so glad to hear from you!! Really pleased your spleen is deflating and you are battling through the nausea. did you have to stay in hospital for the first couple of infusions? I find out next week whether I am going "over the top" shortly as well. take care Dave x
Hi Dave - been thinking about you and your situation, and wondering how things were going for you. How are you feeling? I have it on the best authority that the trial should be starting in January all being well, but definitely no later than February, although it may not roll out into all trial centres that early apparently...I'm thinking the RM will probably be at the vanguard though. Let me know how you get on with hanging in there for a roll of the dice...
I didn't have to stay in hospital for the first ritux cycle, but I did have to go in over two days due to the day unit running late on the first day, and me not getting my entire dose on board before they closed. I honestly had no problems with that element of it, despite warnings that it was likely that I would have a primary infusion reaction.
Keep us updated with your treatment decisions.
Thanks to everyone else for all of your top nausea tips, and general good will and support. I feel much less of a chemo 'wimp' for feeling so sick now I know that many others had the same experience, and your advice will help me prepare for the next round.
Looking forward to hearing from others with their experiences too.
So sorry to hear that you are suffering, it's horrible. But it's all worth it in the end. Like you I had a very enlarged spleen and chest nodes that made me very breathless, and I was amazed that they disappeared so fast. All I can say is I tried to stay busy - I managed to work from home. Also like you say in your title, 1 down- 5 to go, although it sounds a long time - 6 months- it goes quicker than you think, next time you'll be a third of the way through it all.
I did find it better to try an eat as your anti-sickness pills will work better if you do.
Stay positive - each time you have a blood test during treatment and see the results and feel better in yourself - it's all the encouragement you need.
Thanks for sharing your experiences - I hope tips from others will help you get that beastly nausea under control.
I've heard of other cases where people have endangered themeselves by going past the optimum window for treatment; that's where having a CLL specialist is really invaluable in guiding that decision on whether to wait for a trial or go with a proven treatment. It really is an art, not a science, so experience from treating lots of other patients really does benefit you.
Re hair loss, you may escape this side effect - most do. Reminds me of the old joke of being able to play the piano/violin after surgery when you can't before. Some of us don't have a full head of hair before treatment!
Hi Jules... first round is the rough one, and that's behind you...
sounds counter intuitive but try going for a walk... I had terrible nausea after radiotherapy, and walking helped tremendously and simulated my appetite.
But we are all different... the standard CLL caveat...
Sorry to hear you are suffering sickeness I was one of those lucky ones that had min side effects and did go back to work mid cycles. Keep string and positive. I am now nearly 3 years post FCR and at present no signs of the CLL returning
my husband starts his 3rd cycle of FCR next wk and so far has not suffered any sickness, he is on Domperidone and so far has only needed the 2 tabs before each chemo dose, we hope that you continue to improve.
I was on domperidone too and it made the nausea bearable as long as I ate regular tasty, spicy, savoury food - lots of garlic, chilli, ginger, lemongrass etc in food. Used lots of recipes from The Plant Programme which has special recipes for chemo patients. Not sure if you are on a neutropenic diet? Lots of fresh air and short walks kept my mind off the nausea too. Best of all were some comedy programmes and major sports events on TV - athletes surviving intense training programmes have some parallels with surviving a chemo regime!
I had nausea throughout my six cycles. It was always on day 3 it started and lasted for around a week, most times i also had some vomiting for a day or two but not always. The docs tried a few different anti emetic protocols but they didn't have any effect and eventually they said that sometimes its just the individual and i may just need to put up with it, at this point i was on cycle 5 and had already had indications i was getting good result so it was an acceptable part of it for me.
I have a friend who is an acupuncturist and at one point i tried this on one of the nausea days, i have to say i did think it helped. I also tried ginger tea which took the edge off it also.
The one thing they did give me which was a nightmare was steroids. On cycle 4 because the sickness was so bad they tried steroids along with the anti emetics, I was fully awake for 4 days and nights, with no let up of the sickness.
I did get a good result from my treatment and for me this made the sickness just a necessary evil
I hope you find a combination for the sickness but more importantly get a good result.
Take care and good luck to everyone in out or even contemplating treatment.
To answer your specific questions to me...firstly I am on metoclopramide 10mg tablets for my nausea which started on day 2 and ceased on day 8. Fortunately it wasn't severe enough to prevent me eating though I did eat less and lost half a stone in that first week. And I was more nauseous if I took a tablet when I hadn't eated for a few hours.
Secondly, the every-other-day injections I am having are Zarzio.
Like you my cll specialist said that despite my bloods being so very low he wanted me to start treatment without delay and not wait for a course of steroids to boost them like one or two other doctors had suggested. He's the top man and I latched on to the slight urgent tone in his voice. So we took the risk which, as expected, resulted in my bloods crashing further after round 1 - hence the Zarzio (which should bring them up sufficiently to commence the second cycle of chemo.
However, despite the urgency to commence treatment, I did want to feel I had a choice so weighed up FCR against Bendamustine and Rituximab. I opted to FCR - and given my case history - the top man agreed without any hesitation. And like you, I could not have waited until December/January for further trail results on B + R.
Am aware I'm only a week ahead of you treatment-wise, but I haven't noticed any hair loss yet, though the Zarzio may cause some if used longer term.
Hope your 2nd round is better for you.
Hi J
Thank you so much for taking time to share with us although your nausea must be making you feel rotten.
So pleased that already you are seeing some benefit and good signs, and being able to read what you are going through and the decisions you made, help to keep us informed for when many of us will face the same challenge.
I hope the comments of those who travelled this road before you give you strength to keep on coping.
To you and fieldmeadow and all those in treatment very best wishes for a good outcome.
I am overwhelmed (in a really good way) by all of this advice and support ...big thanks again to all of you ...I simply can't tell you how much it has helped to feel part of this community, particularly over the past few weeks.
Glad to hear you hadn't felt sick today - hope it stays away now and I wish you as smooth a run as possible, through the rest of your treatment and of course, a good outcome.
Hi jibs60.....I am starting fcr for the first time on Jan 9th. I was wondering how it is going for you. Did you get your nausea in check? Are you seeing some positive results yet? I pray all is going well for you
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