Following all my tests and lymph node biopsy, I'm starting FCR on 20th March and feeling very nervous. Any advice out there on things that may help body and mind prior and during chemo? Any advice on reassuring an anxious 13 year old daughter and my husband?
Jules
Hi Jules, I'm pre-treatment so can't help you on specifics but just wanted to wish you well with your treatment and offer some words of support. We all anticipate this time with CLL and I can understand your anxieties.
The one thing you can tell your husband and daughter is that you're strong, in good hands and having a treatment that can be spectacularly successful though often unpleasant at the time. What you don't share with them will frighten them more so let them help you and do the little things that ease discomfort. Our loved ones fear our pain more than their own I feel.
And take music, books, laptop and diversions with you for long treatment periods. And dry skin lotions and mouthwash (those seem to be the things people mention), but others will be more knowledgable. Soothing ice cubes made in advance with refreshing ginger and lemon seem to help from what people have told me.
Will be thinking about you and sending huge positive best wishes.
Newdawn x
Many thanks. I went out and stocked up on body lotion etc yesterday. Will make myself some soothing ice cube treats too. We have been deluged by snow for the past 24 hours and my pre-chemo appointment cancelled for this morning. My daughter's school is closed so we have an unexpected day to spend together which is good.
Best wishes
Julia x
Hi.
I just had my 1st FCR treatment 2 weeks ago.
First and foremost I would say I hope you have a very good hospital. I was at the Marsden in Sutton and they are excellent.
I am 48, not at my fittest and the main concern was about my kidneys as I guess it is with most people as they process the dead cells post treatment. I started drinking 2 litres of fluids, mainly water and squash everyday, it's not enough but it gets you used to starting keeping hydrated and helps in many other ways such as veins are easier to find...I did this 2 weeks before I knew I was starting.
On the day of treatment I was nervous and my wife anxious as you and your family. I assume you have read all the treatment notes? If not I suggest you do. It will make you aware of all the possibilities that may occur during treatment and after and is very accurate from my experience.
The treatment, OK, I'll be honest. It is different for everybody. Some sail through and others get the allergic like reactions that are stated in the notes and frequently on sites like this. I had a bad reaction. I wouldn't describe it as BAD, but unnerving. They give you 20% first dose to see how you re-act. That should take about 30 mins at standard feed if no problems. If you start to re-act then they simply stop the drip, wait for your body to recover from the shock and start again at a slower feed. My reaction was after 15 mins. I started to feel hot though my skin temperature had not changed, then my chest felt like someone was sitting on it. I was never at any point in danger. It is just unsettling and you need to make sure if you experience any discomfort you tell you nurse immediately, don't try to last it out. You will get a 2nd and probably a 3rd chance to adapt to the Rituximab.
On the 2nd time and the 80% dose I sailed through no problem. The amount of urination I managed was world record breaking I would guess, 24 times in 48 hrs? It saves the kidneys though!
2 weeks on the results physically are staggering. I have more energy, my lumpy face is back to the handsome rugged features it had 3 years ago (he exaggerates greatly), but the nodes are simply gone. I feel mentally better prepared to face the future and hope to only need 4 treatments instead of 6 based on the physical reults, however the bloods this Wednesday may tell a different story?
You will leave hospital with a bag of pills. Probably my biggest shock. The rota and planning of taking them was not what I was perpared for. However, after the 5 days of FC the pill count drops dramatically and I am only taking average now 2 every 8 hours. I dropped the anti-sickness ones and another read as optional if not needed after 5 days. They will stop all together if all ends well.
All in all, nothing to be scared of. Be prepared, fingers crossed you have no reaction, and then it's onwards with life and hope that science will bring us the long awaited "cure" before we need treatment again. Good Luck.
Thank you, Mark, for sharing your experience, so recent for you. It really does help. It's good to hear about your bodily reaction, I had a similar reaction to the dye used in my CT scan and that passed quite quickly, my blood pressure dropped too which I always find disconcerting. I should have had my pre chemo meeting in the Unit this morning but we are covered in a blanket of snow and my appointment cancelled until Thursday. I've read a lot about FCR, neutopenia etc. My consultant is excited by future treatment for CLL with Ibrutinin but not ready yet, but the future is looking positive.
Hope you treatment continues to go well.
Best wishes to you
Julia
I echo MarkTC's answer. Yes, you're bound to be feeling nervous about an experience which is unknown to you. But you'll be in excellent hands and I've no doubt you'll receive the best of care from the nurse specialists looking after you. People react differently to FCR. The allergic reaction to Rituximab, which MarkTC describes is well understood and watched for. I would only add that I was physically exhausted on day 1 and struggled somewhat with the hour and a half journey home. If you can, I'd recommend having someone with you, if only for day 1. Do expect the first day to be quite long - I think I was on the day ward for around 7 hours. Subsequent treatments were much quicker and I spent much of the time dozing as a result of the antihistamine they give you as prophylaxis!
Nausea was an issue for me particularly during the first cycle. It doesn't mean it will be for you. While still present in subsequent cycles it was more manageable as I learned how best to use the anti nausea medication prescribed, but didn't go away.
I too was astounded by the rapid disappearance of swollen lymph nodes, and quick drop in lymphocytes - mine dropped from 97 to 3.5 after one cycle.
For me, two years on, I can say the treatment is eminently manageable. Do read all the information you're given, and do take particular note of who to contact should you need to, while treatment is under way. My only recommendation, from my experience, would be to make sure you're told about what to expect after treatment and how to manage the effects of blood counts which may be low for a period.
Good luck and don't hesitate to post your experiences, and any questions that may arise.
Thank you David. I've been encouraged by everyone's replies. It helps so much to 'talk' to others in the same boat. Those I have spoken to on the team at the hospital are reassuring and caring, I was due to go in this morning to see the Day Unit but we have been hit by snow which has left the City in chaos! So Thursday's the day now.
I let you know how I get on.
Best wishes, Julia
My advice is stay very very well hydrated...drink lots of water before and after treatment. It helps the kidney flush B cells and toxins like uric acid.
Monitor your temperature after treatment. Any spike lasting longer than an hour call the hospital. Undertand taking tylenol/Paracetamol etc can mask a fever... What the concern is, is a condition called febrile neutropena. This is rare ....but can occur.
Febrile neutropenia occurs when a patient has a fever and a significant reduction in their white blood cells (neutropenia) that are needed to fight infections. Many patients when undergoing cancer treatment will have a reduction in their white blood cells that may be temporary or may persist for some time. The fever may be caused by an infectious agent, and when it is rapid treatment is required. A patient with febrile neutropenia needs assessment for the possible source and type of infection and treatment until the cause is found or it subsides.
I had a bout of rigor about 6 hours after my first infusion. This is a spike in temperature, you feel cold and your teeth chatter... it usually passes, but don't be afraid to call the hospital.
You will be given anti nausia pills...take them at the first sign of nausia, best to catch it early.
Exercise...take short walks...
HTH
~chris
Thank you Chris, It does help to know how others have experienced it. No one has said if they lost their hair or it thinned .. that is what everyone is asking me. I do have very thick, long and I guess striking hair. Guess I will still be on "watch and wait" for that one!
I've got myself a new thermometer, we live within 5 mins of the hospital which is reassuring.
What a way to spend the summer! At least we have a nice garden (with shade) and a fine park within 5 mins.
Best wishes
Julia
Good morning Jules33x,
I started my FCR in Feb and have just finished my second course this weekend, and I have to say that I have just started to experience a small amount of hair loss, certainly nothing to be worried about and only really noticable when I washed my hair last wednesday prior to starting my second treatment.
Good luck to you
Hello, thank you for replying. I hope the rest of your treatment goes well. Best wishes, Julia x
Hi Jules,
Most has been said by others, I'll add a very short summary.
I was diagnosed in early June 2012, my first FCR cycle started in July 2012. Personally, I like to get on with things, not hang around so despite being a bit alarmed by the rapidity I had an element of comfort from knowing my situation was getting tackled.
Most obvious thing for me was my swollen neck. My consultant at Christie told me this would go quickly so I set myself a target of being back to normal during second two cycle. That happened in about two weeks! (still first cycle)
I was quite worried about going to hospital, 56 years and all I'd done was be a visitor before apart from one torn ligament and a visit to A&E.
Put me in a good frame of mind. I did not suffer any real side effects, other than concern based on what I'd read about potential side effects (born worrier), I felt a little lethargic during first couple of weeks of the first two cycles however by third I'd got the hang of it and had a short nap if need be, that happened only a few times.
Follow the guidance of the staff at your hospital. They have been through it a lot of times and have the answers.
The thing I did, again as someone said, it is personal. I tracked temp, weight, blood pressure daily throughout the whole six months, but that's just me. Finally, keep all your paperwork, I have a small red bag that contains everything filed (letters, results, useful docs), that makes me happy, I know if anyone asks me it'll be there if I have it. I always take that to my GP and the hospital.
I wish you well, rob
I forgot, my hospital gave me two types of nausia pills, one to take daily and one to take if the first didn't work. I never took the second type. The first type I took for the six days of the F and C pills plus a couple of extras. This was agreed with the hospital.
Thank you Rob, we are the same age! I was diagnosed 18 months ago. My cll is concentrating itself in the lymphs (biopsy confirmed this) and my neck is particularly uncomfortable now. Guess as the months went by I realised that it was inevitable that I would need treatment.
It sounds like you're doing well ... thank you for sharing your experience. I have rarely taken anything other that the odd paracetamol - the quantity of medication is daunting.
Keep well
Best wishes, Julia
Hi Julia
I wish you all the very best with your treatment. I'm 48 and diagnosed Feb 2012. Though my Lymphocyte & WBC counts are both really low, the fatigue at times reduces me to tears. I've got slower and lost interest in so much in the past few years. I try to get into the gym at least twice weekly and still trying to work a full week where possible. I look forward to some feedback as you go through your treatment and fingers crossed you won't have any nasty side effects from such.
I always try to be positive and think l'll put off treatment for as many years as l can, but at the moment l'm missing out on so much life, due to the lack of energy and find it extremely frustrating.
Best Wishes Netty x x
Hi Netty, I must say my 18 months on watch and wait haven't been easy, treatment is always in your mind. Enlarged lymphs have been there since diagnosis but increased quite suddenly in January and haven't gone down at all. So the treatment will definitely help and my neck and arms should begin to feel much more comfortable.
Think you have to find a balance between exercise and rest as your body needs both. I find walking in the fresh air the best for me.
Take care, Julia x
Hello Jules33x,
I cannot give you any advice because i am still in watch and wait,but i can give you my best wishes,and regarding family,as always, Newdawn has given you good advice on that,i wish mark,david,chris and rob all the best,mark done well out of it,turned him into a handsome prince,i guess mark,should i need treatment,i would go to Marsden,i live in surrey
Take care all
Brian
Thank you. Don't think I will turn into a handsome prince, but hopefully my neck will return to its former glory and the ping pong balls I have under my skin in various locations will be no more!! If you need treatment in the future think you should definitely go to the Marsden if you can.
Best wishes
Julia
Hi Jules,
Sorry to hear your time has come for treatment. I am also queued up for this year.
I agree with Chris above. I have read papers that recommend drinking plenty of water after to flush out the toxins and B cells. Also, lots of cruciferous vegetables are recommended, broccoli, cabbage, spinach, sprouts, greens etc.. Apparently it's the isothiocyanates derived from the glucosinolates in cruciferous veg. supposed to help overcome resistance to chemo. The more raw the better.
Did you enquire about non-chemo options? or trials? (CLL11?)
Anyway, Brian's blog 'say no to chemo' is very worth reading if you haven't read it. Made me feel better about FCR.
Best Wishes,
Mikey
Hello, I was on watch and wait for 18 months and I guess its always at the back of your mind. I do eat a lot of raw foods and green stuff, so that's good news. I did look at Brian's blog and have discussed with Consultant but as I am a first time chemo person he didnt recommend it for my case. He is excited about the future and thinks if I require treatment in future their will be non toxic drugs available once the license has been granted, but its a slow process. I also have a brother in law who is a consultant dr in NZ, he too has same concerns about trials for my situation.
Good luck for your treatment too. Everyone's comments help me feel more positive about chemo.
Best wishes
Julia
Hi Jules,
I am still on Watch and Wait, but I read all the comments on this site with great interest. Thank you to everyone who contributes.
Do let us know how you get on, Jules. It's an enormous thing - facing FCR for the first time. I think everyone on this site will be wishing you well.
Bless you,
Paula
Hi Jules
Just make sure they give you anti-emetics (anti-sickness drugs) when you go home. My nurses forgot and I was so woozy that I did not check. Result? .. sick as a dog. Then the following day, the weekend, couldn't get hold of my GP. Still continued to be sick..... Should have gone to hospital. Anyway, after this horrible experience, I am now unable to tolerate strong drugs. I ended up having FCR by infusion in the hospital. Once I started, I was ok and had no side effects. I am 52, and have had CLL for nearly 8 years. One valuable lesson I learnt was not to expect side effects. In all my treatments, I have had no side effects and my thick hair has remained thick. I would say however, that I have a slight problem with psoriasis on my scalp, but that occurs infrequently.
I wish you every success with your FCR treatment.
The usual advice remains ... Keep away from infected people, as your immunity will be lowered.
Thanks Marisa, my husband is rigorous and will be with me and won't let them forget a thing I hope! Yes, I've asked friends not to visit if they are unwell. Same will apply for my daughter's friends but hard when she brings home a virus from school. Again, Chris will help police that one and I'm sure anyone that enters will be giving the antibacterial gel! Thank you for your advice about not expecting side effects. Keep well, best wishes Julia
I found with my FC treatment, I used anti nausea wrist bands and they really helped. They are used in the Navy against sea sickness but are effective for all nausea including pregnancy sickness. You can buy them from the chemist as travel bands. They put slight pressure on the acupressure point for nausea and I didn't take them off for the six months of the chemo.
You are right to say everyone reacts differently, someone at the last CLL conference in London is a teacher and had sailed through FCR without a day off. On the other hand with FC, I couldnt make it across the room without a huge effort, you never know how you'll be. Good luck!
Thank you, I will investigate, Jx
Hi as you say FCR affects everyone differently. For me it was hell. I was very sick (I ended up on 6 different anti sickness tablets) and had to spend some time in hospital to be stablised. I had very low blood counts which meant I had to have injections to bring them up in order to have the next cycle. The last two cycles were given at 75% because I really couldn't take much more. My immune system has not really gone back to normal two years later. However, even after two years there is still no sign of the cancer. Was it worth all the side effects? for me yes. I'm still around and will hopefully get a non chemo treatment when necessary. I wish you well and hope that I haven't worried you too much. Remember none of this may happen to you. Good Luck.
I just wanted to add...Constipation! Have something around that will 'move you'. I found prune juice worked best, but eat high fiber on a daily basis...
Good comment on constipation. I was given Ondansetron to manage nausea and was told by nurses that they saw a high incidence of constipation with it. First cycle five days of FC and fifteen of Ondansetron. After discusding it with the nurses on the second cycle i dropped it to eleven days and from cycle three onwards seven days.
I had no nausea problem and no constipation problem, although on first cycle i thought i had and took a senakot(i really dont like prunes at all). That wasnt necessary and wasnt such a nice experience and was purely my fault so i dont count it.
Rob
Hi. I would just like to add that I was very sick on my 3rd month of treatment and so I was given 3 days of steriods on the 4th, 5th and 6th month of treatment which was a great help. Also constipation was a problem but lactulose did help but need to start taking it on the first day of treatment.
Julia - you might want to ask about a neutropenic diet, in case your neutrophils drop too low. Basically, it involves eating only well cooked foods. I think it's easier to think ahead than to try to play catch up on things like that.
As for hair, my treatments have involved rituxan alone or cytoxan alone. There was a very slight chance of losing my hair at the dose of cytoxan I was on, but again, I like to think ahead. A friend and I went to the Cancer Center Botique one day and just played around with wigs. I thought that the Jennifer Aniston look would be perfect on me. That was good for a laugh. We had a fun time trying all different hair styles, and when I left, I knew exactly which wig would be right for me if I needed one. If you have been advised that hair loss is a possibility, it is something you could do with your daughter. It's the best way possible to try a new hairdo - you don't have to live with it, and it's a way to prepare her for the possibility without it being a shock if it does happen. Having been a teacher for 34 years and listened to the fears of children about various family issues, I can assure you that Newdawn is right. It is better to involve your daughter on an age appropriate level than to try to protect her from what is going on. I hope things are going well so far!
Pat
Hi Jules, I completed my FCR chemo this last April for CLL stage 3. I have to say I tolerated the chemo fairly well. I wasn't overtly sick. Day 5 was the toughest mainly with fatigue. Get lots of rest, walk when you can, drink lots of water. You'll get through it. I'm in complete remission remission and back to work.
The start for me on FCR. 
Starting FCR
FCR, WHAT IS THE AGE LIMIT FOR FCR OR IS IT MORE ABOUT FITNESS
Starting FCR in 10 days
