I'm writing this for my dad he's had CLL 8 years and in the past year he's started developing symptoms (swollen nodes in the neck) his spleen and everything is fine, he was told 6 months ago he needed to start treatment, his bone marrow and bloods came back ok and he's diagnosed as stage 2 , he's starting FCR tomorrow and I'm so worried about possible side effects but also he went the hospital today and they said he can't start Rituximab as his WBC is high, so he's got to take the chemo tablets to lower them for next month so he's starting fludarabine and cyclophosphamide tomorrow morning via tablet at home, I was just wondering if this is normal that his Rituximab is delayed until next month? The dr said everything is fine but I lost my mum unexpectedly last October and I'm so worried about my dad, I've read this disease is very manageable and can be controlled with treatment for a very long time? He was told he should get about 5 years remission off FCR before needing any more I'm just so worried about him, he's fine in himself except the enlarged nodes in his neck, but I'm worried about what to expect in relation to side effects, and the high WBC and why his Rituximab has been delayed? And was hoping for some info about it, sorry and thank you
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Chelseaxx
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I haven't had treatment yet but will need it soon. I am 71 so it will be BR. The consultant told me that he will delay the Rituximab until the Bendamustine gets WBC's down to below 50. Currently about 300.
He also said that whereas the Bendamustine needs to be given every month, that is not so for the Rituximab and at the end they can speed that up to every 2/3 weeks. Also, the WBC's will come down very quickly. Also, i will get a drug to help with tumour lysis. Can't remember the name of it but it is in my previous post.
Although I can't give you any answers to the questions you've asked in your post as I haven't needed treatment yet myself, I can appreciate how worried you must be about your Dad. Hopefully one of our experts will pick up your post soon and help you.
In the meantime, I wish you and your Dad all the best and that his treatment goes really well. Sounds like he is a lucky man to have you at his side ☺
I'm sure your Dad will be in safe, kind hands. I had a course of FCR in 2015 - because of a variety of adverse blood levels it actually took almost 10 months.
The side effects were pretty much as had been outlined in the Macmillan literature and other advice from the medics and nursing staff. None, on their own, were too bad - but sometimes a combination made life a bit unpleasant for a few days. Top of the list was shingles which struck me a couple of times during the treatment. we had to be pretty assertive with my GP to ensure that I got timely treatment for that.
He should drink plenty of water as constipation became an issue a couple of times. He should keep up with exercise where possible and get out and about (being careful of other people's infections) because it's easy to get "disabled and isolated".
I found the psychological side-effects to be worse, on the whole, than the physical. The shock of diagnosis and the change out routine, fear and anxiety etc knocked me for six for the first few months. I tried doing nice things and giving myself a good talking to every now and again. All worked out in the end. The steroids made me a bit tense and hyper.
I found that my tastebuds changed and some things I used to like I became turned off. Small meals and often were generally more palatable.
After my first two cycles of F and C my white blood and lymphocytes went right down to "normal" they have remained low.
My last Ritux was cancelled as I was effectively in remission and there was still a residual risk of shingles or infections.
My consultant said the treatment would produce a sort of ebb and flow sequence in how I would feel and that was how it was. From day 1 of the cycle I would gradually feel moor poorly which lasted for about 5 to 7 day at which point I began to feel b bit better each day until about day 12 - 14 where I was pretty much back to normal. I did get struck with "chemo-brain" which seemed to effect my brain-activity - memory, processing etc. that gradually eased and a couple of months after the whole treatment I was as dull-brained as I had been before.
I hope all goes well for you Dad - he's fortunate to have a family who are caring and seekers of knowledge.
Thank you so much for your reply it's so informative and helpful thank you very much for taking the time to write it, I'm glad to hear your FCR went well, my dad is on the last day now of the FC tablets, not sure if it's a good thing but he has had no side effects at all, slight stomach ache on day 1 and 2 but otherwise fine and going about as normal, do you know if we should expect his nodes to reduce soon or would that happen after the R transfusion next month? He's on day 5 of F and C now thank you once again for your kind helpful words x
I had 6 sessions of FCR( started Feb and finished in July) .
My first dose of Rituximab was also delayed because my counts were too high. I think it might be to avoid a bad reaction to it. This is quite common apparently. I did have a severe reaction to it despite delay , but the hospital staff reacted quickly and got me back on track. I had to stay overnight to complete the infusion at a lower pace but I tolerated it ok after that. The remaining sessions I didn't react , but again they gave it to me slowly .
In regards to your Dad I would have the following advice for you:
1.Try not to worry . Hard as it is you have to try to keep upbeat and normal . It will help him too.
2.There may be days when your Dad seems down / very quiet/ subdued. Of course ask if he is ok / needs anything, but try not to ask too much . I found I was feeling guilty when people kept asking me if I was sure I was ok. I just sometimes didn't have the energy for conversation.
3. Your Dad needs to drink lots of fluids when taking the FC tablets . This will help to avoid stomach issues etc. They really are quite potent!
4 There may be days where your Dad has no appetite or feels nauseous , but explain to him that he has to try to eat, however small the amount.
And maybe he will sail through without any of the above - some people seem to - and I hope he is one of the lucky ones .
I wish him the best of luck and to you also - he is already lucky to have a caring daughter like you!
Thank you so much for your kind words and for being so helpful it means a lot to me, I'm sorry to hear of your bad reaction but glad to hear you have finished FCR, he is on day 5 of the F and C tablets and thankfully has had no side effects and has been living his normal life in hoping his bloods have gone down by next month so they don't have to delay the R infusion. Thank you once again for your kind words x
You've had some helpful responses already and there are many patients who have previously shared their treatment experiences with FCR, which you can search for and read.
FCR has been the gold standard treatment for CLL for many years now - it's a very common treatment and we have people doing well after being treated with it up to 15 years or so ago. About 30% of patients treated with it have lengthy remission times. It seems that with the right CLL genetics, if you can make it to 7 years without a relapse, you are effectively cured. Even if your Dad's remission doesn't last that long, there are lots of gentler (including non-chemo) treatments either already approved or in the process of being approved.
Some patients like your Dad are assessed as having a high tumour CLL burden, from the large quantity of CLL cells in the nodes, spleen, bone marrow and blood. In your Dad's case, I gather it's mostly in his blood and neck nodes (and probably internal nodes not detectable without a CT scan, but which will melt away during treatment just as his neck nodes do - and fairly quickly with FCR). Therein lies the possible danger, from what's termed Tumour Lysis Syndrome. Powerful treatments like FCR can kill so many CLL cells so rapidly that when the internal contents of the dying CLL cells leak (or pour) out into the blood stream, they can overwhelm the body's organs, in particular the kidneys and heart. Excessive levels of potassium can even stop the heart from beating. Hence in some patients, the initial treatment is staged for a more gradual effect which the patient can manage safely, with Allopurinol (the same treatment used to manage gout) often given to protect the kidneys.
Thank you so much for taking the time to reply with a very helpful response I'm so grateful. He has been given allopurinol to take daily, he is a n day 5 of the F and C tablets now and has tolerated them really well, no side effects, should we expect his nodes to reduce with just the F and C tablets and when would that happen? He's on day 5 now and they are just as bulky, I'm not sure if the R infusion plays a part in that which hopefully he will be having next month if the F and C tablets help in reducing his wbc. Thank you so much for your kind and helpful words x
Rituximab will increase the effectiveness of FCR treatment - which is why it has been held off. There is a fair bit of variation on how people respond to treatment and it is still early days for your husband. You can search for posts where others have shared their FCR experiences here: healthunlocked.com/search/f... , though you may find it difficult to find posts from someone that has had the delayed start to the R in FCR. Perhaps a separate post will encourage someone to share their experience?
This post on a report on FC vs FCR also shows how imortant the Rituximab is in enhancing the effectiveness of treatment with FC: healthunlocked.com/cllsuppo...
You can see why FCR is still considered the gold standard treatment for CLL for many patients.
Every time someone mentions getting the F and C in pill form a warning of Chris's (CLL Canada) comes back to open the pills over a large bowl so you aren't left crawling on the floor searching for any that have escaped.
Is your father being given allopurinol to protect the kidneys at the start? Ask what you should have available for constapation, should it become an issue. Also ask if your father will be given an anti viral to help prevent shingles or if he should have a script for it just in case. Do some reading about shingles and the many ways it can present initially, so you have some familiarity should your father have trouble with it. It is essential to get immediate care for shingles. That being said, these are precautions. Your father will probably sail through without a shingles episode.
Your father's doctor should tell you what to do in case of a fever - usually don't take fever reducers unless specifically advised to before he is seen by a doctor and get to a doctor or ER right away when the fever goes over a certain point - varies a little from doctor to doctor.
If you are going to treatments with your father have him take a couple of things to do if he feels like it - I found that the premeds made it hard to concentrate on one thing for long and I often just felt like sleeping. Take things for yourself also so your father doesn't feel like he has to stay engaged with you and he can just doze off when he wants to.
I hope you are soon posting about your father's progress. You will find several posts here about FCR experiences.
Thank you so much for taking the time to reply with such helpful tips, he is on the gout medication which he takes daily, he is on day 5 of the F and C tablets now and has had no side effects so far, thank you so much for your helpful advice and kind words x
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