Firstly, just going to be starting FCR next week and having read through this site have found it very informative. What for the actual treatment should I do? - I am going to be in a ward and overnight stay for the first cycle of "R" and then I get out the next day - I think for day one, two and three I take the tabs form of F&C - for the next 5 cycles I will be in as a day patient - think the first one is precautionary to see how I will react with "R" - hopefully ok!! I am looking on the bright side anyway!! My head has gone a bit of a shed as time is coming closing in so have a bit of brain overload - I just want some pointers for the first week once I have started the treatment - any bits of advice from the morning of going in to going home etc - I know everybody is different and everybody can react differently but just want some basic pointers - thank you
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Strong-happy2
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Welcome to the community. Possibly not a place you'd prefer to be but that's probably true for all of us and a warm welcome anyway.
I went through FCR in July12-Dec12. Here are a few comments based on my experience, your experience and that of others may/will be different.
Retuximab is the thing you are most likely to react to that will need a quick response so they will monitor you closely. I'd not worry about this too much as they start the dose of slowly and gradually increase it as they look for side-effects.
I was given a carrier bag of different pills, mainly to help with possible side effects of FCR, I was surprised by the amount I ended up with. Take notes or listen intently.
When taking the Fludaribine and Cyclophosphamide be very very careful. They are tiny (the smallest drugs I think I've ever seen). Chasing one around the floor is not a good result.
Due to the number of drugs (looked a lot to me) I made a simple spreadsheet so I could tick of which I'd taken on a daily basis.
I kept a diary (I'm not very good at this) for the first month because my consultant said the first couple of months are the worst and will set the scene for the rest. I thought if I have a list of what happens I can review it in future months.
Keep away from anybody who appears ill or says they have a problem. Just use simple avoidance tactics.
When you read the leaflets in the pill boxes you'll find a plethora of side-effects. Don't scare yourself by looking for them all, just listen to the medical team, they'll tell you the most likely ones. My six months was uneventful in general. I found I could nod off mid afternoon in the first few days but I was off work then and sat watching afternoon TV which I blame much of that on.
Two own-goals by me during treatment:
1: I took my temperature daily using a digital thermometer. I like keeping stats and the one thing they tell you to watch out for is a rise in temperature. So, as I said I did it daily. What I didn't know was that it was reading 1C high. So, when I broke the barrier they set I called it in. Ended up being monitored in hospital overnight. The 1C error cause this, one of the nurses and I checked my thermometer with four in the hospital. New thermometer acquired.
2: I was warned about constipation as a side-effect of one of the management drugs and advised to take sennacot if I had a problem. I thought someone said take one anyway to save risk of the problem. I did .... the rest I'll leave to your imagination.
If you have any specific questions please come back.
Thanks very much for your reply - I am going to be getting a thermometer and monitoring what I take on a daily basis - the spreadsheet is a good idea as maybe head might be a bit fuzzy - so that will keep my right to a point with my consumption. When did you find yourself feeling at your worst? and did you feel better as the month went on? Thank you
I'm waiting for my 4th round of FCR bloods not quite recovered from round 3.
My experience was .
Given a trial batch of Rituximab on day one. In hospital overnight given full dose to make up 700ml second day. You will be given other meds to stop any side effects also.
The first round went without any problems and you will be given anti viral, antibiotics and anti sickness medicine to take home with you. Listen carefully to the instructions given and make sure you understand them. You will also be given advice on diet should you become neutropenic after treatment if you don't get this info ask for it as certain foods eg yoghurt soft eggs uncooked fish eg. Smoked salmon can cause problems if you do become nuetropenic.
I had no side effects with round one!
I would also advise you discuss any medication you may take normally with the consultant as many can react with the chemo drugs. Rituximab makes your blood pressure fall so if you are taking drugs for hypertension you should leave these off on the day of your infusion. My team forgot to inform me of this and my pressure caused them some concern.
Also make sure you take your temperature at least twice daily or when you feel shivery you will be told at what temperature you should call the specialist nurse in case of infection or sepsis. I was hospitalised with nuetropenic sepsis after round 2 as my Nuets fell to 0.02 and temperature was 39.4.
I have found that I have experienced differing side effects as the treatment progresses this is probably due to the cumulative effects of the treatment. Plus the fact it's working!
I was told by my specialist nurse that I am now a member of the club and I should contact them directly should I feel unwell or get a temperature as I have direct access to their specialist services. I do not contact the GP if I have problems and have benefited from the specialist care on several occasions.
Unfortunately I have been hospitalised on several occasions due to differing side effects. So have been unlucky.
My advice therefore is go with the flow, understand completely what is expected of you as an expert patient and don't worry about contacting your specialist team about anything that is concerning you. They will insist you communicate well with them about anything that concerns you.nothing is silly so ask that question!
I wish you a successful and side effect free treatment and do keep us all informed of your progress.
By the way drink plenty of fluids with the FC tablets as this will help them distribute correctly and help stop side effects.
Thanks for your reply Geoff!! I know that I will have to drink plently water - albeit I don't particularly LIKE drinking water but a small price to pay I suppose - is about 3 litres the daily recommendation? I have another question to ask but will put it in a separate question - in case I start getting muddled! Thanks again
The effects of FCR creep up during the 4 week cycle as the medications begin to work so in general week two and three are normally when they reach their peak. You may not feel ill!
I normally find I'm a bit tired in those weeks and get back to something like normal in week four just in time to start again - although this time marrow didn't respond as quickly. Obviously the treatment is working so needed a week or so to recuperate.
Hi Cammie - so potentially week 2 and 3 could be weeks you could be at your tiredest?? And any reaction could be in week one? and week four is getting back to normal? - in a general kind of way? Thank you
Obviously all the previous replies by others should be considered / monitored.
However on a more positive note I received 6 No. FC Chemotherapy with 3 No. Rituximab – completion Jan 2011.
Then in between July - Dec 2013 - six rounds of B + R chemotherapy.
BOTH of these were all done on an out-patient department basis (with close monitoring of the first days treatments.)
Also on the first treatment - I was driven to the hospital - But for all other treatment days I was able to drive myself to and from the hospital AND still continue full time work.
I did try to "manage" my out-patient treatment appointments to Thursday & Friday -- to give me the weekend in case of reactions / problems. (Also in my hospital it was advantageous to make early morning appointments - there are always "delays" through the day.)
Importantly my hospital provided me with a 24/7 - emergency number. ANY and I repeat ANY thing that concerns you like a raised temperature, sickness, etc could be discussed with a knowledgeable person - and if necessary go to hospital !!
I hope that your FCR journey - will be similar to mine and I pray that your God will be with you.
Marty thank you so much for your reply!! I know that everybody is not the same but I am hoping that all will go ok with me - I don't catch any colds/flus or bugs as a rule - and in good health apart from THIS chronic disease I now have to contend with - so my fingers are crossed that all WILL go ok but you just never know - and as time is nearing - I am getting a bit anxious and I feel that everything is a rush to my head and although I have read up on a LOT - I now feel like I cant remember!!! which I know is daft but probably just trying to take too much in and brain overload!!! Probably I'm getting a bit scared as well - just of the unknown!! but I am optimistic that I will be ok with it!!! Thank you
I don't remember feeling bad ever. Maybe a bit dopey in the early part of the month but nothing I could say impeded what I did.
I did find myself in a positive relaxed place when I was at the hospital having the Retuximab. I think first time I was quite nervous but by the end of that day I'd got my mind round the whole situation. That allowed me to approach the start of each cycle with a 'lets get on a destroy another bit of this stuff' attitude and was quite keen to get on each time. Hope that doesn't sound too crazy.
Rob - thanks for that!! No that doesn't sound crazy at all - just my way of thinking too!!
That is my attitude - well that's the attitude I want to have and am hoping TO have - I think with it drawing near - just getting a little bit more anxious than I would normally be but yes lets get this kicked into touch!! Onwards and Upwards - and fingers crossed!!! I'll be on top of it NOT the other way around!! No room for being pessimistic!!! Thank you!! HA!HA!
Guys I have been going into a hyperbaric chamber this past month to see IF its going to make any difference to my bloods - taken before and after - has anybody ever heard of this? or any comments on it? Thank you
I know the feeling as I am on round 2 of my FCR treatment here in th US and as you hear replies everyone is going to be different. For me, the first day was FCR and days 2 and 3 was just FC. All were infusion. The first day I was certainly filled with anxiety and fear somewhat. Sort of the fear of what to come. This is not a club I wanted to join. The first day I was given a lot of premeds such as Benedryl, steroids, anti nausea, and Tylenol. All are given to combat side effects. But other than feeling a little loopy from the Benedryl , drifting in and out of little naps, I went home that evening and slept in my own bed. Sleeping was a little difficult cause of the steroids and I was given Antivan to help take the edge off which was helpful. Day 2 was the same as day 1 and day 3 I drove myself for the FC and then went to work that afternoon. On the weekend following the kidneys start working OT to flush everything out and I was drinking a lot of water too so as to prevent TLS in your kidneys which can be serious. You'll probably be given a mini pharmacy to take home to prevent TLS, naseau, pneumonia, shingles which are all temporary items. On the weekend when you come down from the steroids you'll probably have a crash and feel very lethargic. Eat well with lots of greens, fruits and other vegetables, whole grains and stay away from sugars, sweets (for a while) and alcohol. You will feel better and actually have good energy level. I was back at work on Monday. And get some exercise each day. Good luck. You'll be fine an the results will be great.
Thank you CClaver27 for your positive narrative!!! Yes I am aware that everybody is different etc etc which really makes for a stupid question in the first place BUT I think I just need a bit of positive words (although I know its a bit of kidd-ology to an extent on my part - but you know what I mean) I think its just the R that is going to be infusion with me and OR maybe I have that wrong - it maybe FCR on the first day on infusion and then day two and three with FC in tablet form - I must double check on that actually - I may have picked it up wrong - anyway I am well aware of my water intake - which I struggle with at the best of times BUT I can handle that - I am not a sweet tooth and I think I have it in my head to do lots of homemade soups - alcohol doesn't bother me at all - although do like a glass of red with a nice meal BUT that will be replaced with a glass of water!! I am a tea drinker but read somewhere not too many cups of tea - just wonder if decaff tea would be ok?? Thank you again CClaver27 for taking the time to respond
Oh a glass of wine about a week after is fine. I am more of a craft beer and scotch guy and actually had a hard time drinking a beer for some reason but your taste buds may change for many items. If you like to cook, take the opportunity to create dishes that are new and healthy. My wife found a recipe for a vegan dish called Ikrainian stew which is from an island off Greece that was really good!! You can add some chicken or fish to it as well if you want a little more protein. Green tea is known to help slow CLL according to a Mayo study done a few years ago but in high amounts. EGCG the active ingredient in Green Tea can be bought as an extract in health and vitamin shops but needs to be taken at a higher dosage than what's on the label. Check with your doctor as EGCG also acts as a blood thinner and should not be taken during any treatment.
Hi CClaver - yes I am bracing myself a bit for change of taste - I am a lover of haddock so can see me eating a lof of that IF I still love it of course!! plus I like spicey foods so will not have a problem there!! I know a little Chinese place that is good for selling boxed loose green tea as opposed to teabags - maybe do a bit of research into that - thank you again - I know there are some foods I need to keep clear of - mayonnaise/pate/shellfish etc - but I just have to look at it that its just for the short term - any other pointers on what to avoid?
If/while you are very neutropenic from your FCR (ANC under 0.5), you do need to avoid foods with a higher risk of bacterial contamination or with a high bacterial load that could cause gastric upsets or worse.
- 1 x week where he was nauseous and away with the fairies (1st cycle was worse until they got the anti sickness meds right), 1 week medium, 2 good weeks (even when he was neutropenic)
- Open the F & C over a bowl so if they drop you aren't scrabbling around on the floor
- see the 2litre bottle of water as your best friend which will help you
- get the anti constipation tablets in advance
- He downloaded an app which helped him remember when to take his tablet. I am usually quite good with spreadsheets, but the sheer volume and different times/days to take tablets was a nightmare to keep track of. App much better.
- Expect the pattern to change - after the 1st cycle my husband decided he could work in week 3 & 4. However after cycle 2 he was neutropenic so cycle 3 delayed which has has knocked his proposed work pattern off schedule
- if you have a partner, it can be tough for them seeing their loved one going through this. I have been very lucky that my husband understands this
Finally good luck. Husband is showing very good results, and last cycle was best of them all so far
Thanks for your reply Fowey2009! I hope that your husband goes on to make a good recovery! I must see if I can find that app - do you have the name of it - I am excellent with spreadsheets too BUT who knows going forth!! Its sounds a bit daunting the tablet scenario although I suppose the simplest of things can turn into difficult things at this time!! I am quite optimistic as a rule but just now I am up and down - I THINK once treatment starts I will be ok - mentally!!! - its just this waiting and then overthinking things - where normally I would laugh something off I am finding myself getting annoyed over what normally would be nothing!! Thanks for taking your time to respond!
Hello, I believe you correctly understand your FCR schedule. It's seems its only over here in US where FCR is given IV. I just finished 6 cycles of FCR-had some neutropenia but overall did very well. I did continue to work although I did cut back to part-time weeks of chemo and following week. I did get tired about 2 days afterwards-I also think it was coming off the steroids I was given and my body just recovering from the drugs.
Like everyone has said-follow the doctors instructions. Especially drinking and taking anti-nausea meds as prescribed before nausea sets in. I had Rituxin on da1 then FC on days2-4. We are also given iv antinausea meds and I was told to continue taking my Zofran twice daily for 3 days after chemo. I lost my appetite for a few days but no nausea! I felt the most uneasy with the first round but I was nervous. Overall, it went very well and I feel better than I have in years.
My bloodwork was similar to yours however I had enlarging lymph nodes and an enlarging spleen, I also was unable to eat much. My CLL specialist felt is was time to begin treatment because of the symptoms and also because my bloodwork was beginning to get somewhat off (I did have low platelets ) She explained the chemo would affect by bloodwork even more and it was better to start treatment while my bloodwork was somewhat stable and because of my symptoms.
Good Luck- Your attitude will really help you through this and this site has many educated helpful caring people in your situation to help you through this
Thanks Jomary8505! I was given a CAT scan too which showed a few nodes enlarged - my neck and underarms and spleen as well - nothing in my groin - but I think pretty much the same as what was in my CAT scan done about 8 years ago - not much of a difference - my neck was where the alarm bell rang for me - anyway I think my haematologist was thinking the same way as yours - get at it when you are fit and able - well that is my understanding! Anyhow thank you very much for your upbeat reply!
Cannot add to all the good advice here but just to add be patient. There is a lot of sitting/lying around and waiting!
I am only adding this bit to reassure you (the awful thing is the unknown). I reacted to my first dose of rituxan on Wednesday so this means for me going into hospital every time for future treatments. No big deal and in fact quite reassuring.
Hi Sue - that's not so nice to hear but as you say reassurance for your next doses! I am an avid reader so have got a few crazy autobiographies lined up that will keep me entertained hopefully and keep my mind OFF things - fingers crossed anyway!! Plus have a few good films as well!! I know what you mean about the unknown - i think that's the bit that is just about putting me over the edge!!! be it good OR bad!!! Are you feeling better now or still groggy??
Sorry for leaving a bit of the obvious out - it is waldenstroms I have - which my understanding is a type of CLL - had a biopsy done about 6 weeks ago and this was when they found out - my plasma viscosity has gone up to about 2.48 which I think is coming on for high - kind of woozy/heavy/thick head just about the same time came on as biopsy - hence going into the chamber - and now these past 2.5 weeks - the head has gone completely!! so it will be interesting to see what my new readings are! - To the person that asked about the chamber - its a friend on mines who is a great advocate for it and for O2 - that's why I have decided to give it a bash - and for my symptoms I would definitely say its worked - even for the bit of tiredness too - although it will be interesting to see what the readings say! I know that its a controversial subject though!! Thanks to everybody that has replied - all these bits are good for me to refer to - my brain has gone into a bit of overload trying to get everything organised etc
Waldenström's macroglobulinemia and CLL/SLL are both chronic B cell lymphomas, sub sets of Non-Hodgkin's lymphoma, NHL.
While the are some similarities in symptoms etc., they are actually quite different and should not be confused.... the key difference in WM is high levels of IgM paraprotein... this is not seen in CLL.
However, Waldenström's macroglobulinemia and CLL can co-exist, I have a couple of friends with both...
The new drug ibrutinib has been FDA approved for the treatment of both WM and CLL, which is a great advance...
Hi Chris - there was CLL written on my notes as well?? I read them but I must get clarification what that was written there for?? - plus my haematologist mentioned that too - the rest i have been trying to dig up on the internet and surprisingly enough - there is NOT a lot!! Between telling my partner and trying to juggle NOT telling folk etc - having a head to head with the haematologist and now settling down and getting ready - my head had been very woozy and so treatment for me is obviously starting at the right time albeit I am fine just now since getting o2 - just all been a bit of a rush to the head the whole thing - so now trying to get everything set out in my head methodically! Apologies for missing out what my diagnosis was - I originally just wanted a bit of advice about FCR treatment plus on how my bloods were looking - so sorry for that! This new drug ibrutinib is it better than the FCR?
I know that everyone is different but my experience of the FRC treatment was
"No problem". Naturally I was very apprehensive about my first visit to the chemo
unit but the staff were so kind and attentive that I soon settled down.I was given a
list of possible side effects which I must admit was a bit intimitating but can honestly say that I experienced none except for tiredness for a couple of days but nothing worse than that which was one of my symptoms! I have had two follow up blood tests
since I finished my chemo at rhe end of October and both have been fine. I am really feeling very well and I can only wish you the very best and hope that all goes well for you,
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Onwards and Upwards - and fingers crossed!!! I'll be on top of it NOT the other way around!! No room for being pessimistic!!! Thank you!! HA!HA! 
About to start FCR 
Any advice about starting FCR?
Update: No FCR, we will start Ibrutinib
Update before starting 2nd FCR treatment v
