Hi I have read that cyclophosphamide and fludarabine can be given orally instead of IV. Is oral better tolerated in terms side effects? I guess oral
formulation avoids need to attend hospital more frequently for infusions too.
Is there anything else I should consider if needing tx with FCR? Thanks
In USA FCR is only IV. I had a port and the treatment was uneventful. Reached remission in 3 cycles.
Interesting question.
In Canada and the UK the F and C Are usually given in pill form. I’m sure that is true in other countries as well.
It’s true in NZ too. However, I had issues with taking Cyclophosphamide and couldn’t complete the 6th cycle of FCR. The second time round (a few years later) I discovered that C was available via infusion, so I only had to take F orally.
Thanks for advice. Please can you tell me how to lock my posts. I am not familiar with using this forum. Couldn’t see how to do this. Is it best to use a laptop rather than smartphone? Thanks.
Go to the "more v" which will bring up edit. Click on that, then scroll to the very bottom of your original post (not a reply) and change the setting to community only. Your setting controls your post and all replies to it. In the future when you post just scroll to the bottom and change the setting before posting. Let me know if you have a problem.
Hi GMa27, can you tell me how the all-IV treatment is scheduled please, and the labs to confirm UMRD. Just curious.
Sure! It's 3 days of IV, every 28 days. Usually FCR first day. FC second and third. But my hematologist wanted the Rituxin split so I had FCR, FCR, FC. Also due to national holiday my second round was 5 weeks later. Then my third was 5 weeks later due to a small family reunion (2018). The extra week didnt matter. For my first round I was admitted in the hospital. Stayed for 4 days. So comforting to know I was being monitored the first round 24/7. No issues. Port was great.
As far as tests- I had BMB, scan and Fish/Flow blood work.
Thanks, sounds good. In UK it is usually R-IV day 1, F&C-tablets days 1-5 or 2-6. I was in a trial so had 6 cycles. Maybe nausea is less with all IV. By cycle 6 the pills take on mountainous proportions.
I took them in tablet form for me sickness was the issue I sometimes struggled to keep them down. I spent many days at the hospital on a drip to control
The sickness. I did think that maybe I would have done better if it had been given in IV.
My FCR was iv... ..rituximab ,then cyclophosphamide and fludarabine tablets until my next IV. I finished my IV in December and tablets at the same time... my B12 was a bit low so I have tablets for that but otherwise I am feeling very well.
FCR orally is a lot of pills to swallow. around 25 a day for about a weak each cycle, (F, C, anti-emetics, drugs for Tumour Lysis protection, antibiotics in addition to any regular meds aleady on)
I was gagging on the R and C towards the end of 6 cycles. I dont have problems swallowing pills normally. Jig
I had fcr in 2010 and had the same problem. The water wanted to bubble up. I checked with the consultant and it was ok to take the tablets with milk. The milk worked. It went down easily and settled my stomach. Anne uk
I was gagging on the F & C pills, and anti sickness pills, too! In fact I was gagging just drinking the water and even just thinking about the tablets! Seeing the names of the F &C tablets still make me feel sick 3 years after taking them. I suspect everyone is different though so I hope you will be fine. Ginger is good for sickness and I even put it in my porage!
Hey!
I have still got some of the little paper pill pots I was given by the hospital at the time of FCR. Looking at them 2 years on makes me feel nausea.
But all ok swallowing other pills again. Still on Aciclovir and Co-trimox.
Jig.
Hell Jig, That is interesting. I am still on Aciclovir after 3.5 years because my Lymphocyte and CD4 counts are still low. But I stopped taking Co-trim back in June after asking my consultant if I could stop it. I was borderline so decided to stop. I hate taking tablets.
What’s rather worrying is the huge variation in what people are told regarding prophylaxis. 16 months after stopping FCR I am still on cotrimoxazole aciclovir and azithromycin and still get infections. My lymphocyte count remains under 1 so the assumption is my CD4 is also low. But some People are not given prophylaxis at all even after getting a PCP infection and being treated for it!
My lymphocyte count in June was 0.9. My CD4 count was 216 (reduced from February when it was 300) when it should be at least 400. That is 3.5 years after FCR so does not look like it will improve anytime soon if at all. Still, I am still breathing so must be grateful I suppose!
I would agree - BUT I would not use the word worrying! Interesting maybe, and worth speaking to our Dream Haem Teams or sure.
My L count is either 0.5 or 0.6 for the last 2.5 yrs, since the onset of FCR. (Lowest I got was L 0.0 and N 0.3)
My Ns are still around 1.8
Since FCR my wife and daughter have had 6 full on Upper Resp Infections. We share the same home!! I have had no infections as all. Including the one brought back from Australia and Doha just before lockdown.
I have put this to a couple of our great trusted loved and wonderful CLL experts - asking how come I am not getting infected. The thoughts go to competent CD4 T cells. My Igs are low - I am not on Ig stimulation - as I have had no infection and have not earned the right.
Further I have been told KNOWING my CD4 numbers will not saying anything about infection risk in the future. So never tested.
I welcome thoughts on this.
Jig
I say worrying as it shows there’s a lack of consistency and planning about how to manage the risk. I was gobsmacked recently to hear the story if someone in hospital being treated in hospital for a preventable fungal pneumonia having not had the prophylaxis who had been told that despite continuing the anti cll treatment they wouldn’t now be asked to continue treatment once discharged. It just seems to me me they need to come up with a consensus and also do some kind of research eg a registry where we track the number of infections with certain interventions and get a better picture for example of when we actually benefit from IVIG. I suspect we’d potenalkt save lives with that intervention being more readily available especially in the covid era since there are already anti covid antibodies in IVIG!
All of this is relative risk stuff.
When my lymphocytes exceeds 1.0 I am to stop the A and Co-T. I am approaching 2 years since cessation of FCR with persistent sub 1.0 L count.
What is your Lymphocyte count?
Remember the Acyclovir is for Herpes virus infection protection and the Co-Trimox for PJP protection.
All the while I worry about lung fungal infection, as a cyclist I am hoovering up loads of Aspergillous panting and gasping up the local hills. Then I am reassured, while the risk is there its v low.
... and Covid being just another infection to dodge!
Jig
Nausea with FCR 
FCR and Bladder irritation 
pins and needles after IV
Severe reaction to FCR
Advice with starting FCR
