CLL Support Association
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Advice with starting FCR

After two years of wait and watch, I have to start treatment this week. Besides drinking lots of fluids what else do you recommend? What should I bring with me for these long treatments? I will be taking anti nausea and other medications to help reduce side effects. I am looking forward to saying goodbye to my bulky lymph nodes and getting back my life. Please keep me in your prayers!

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In our prayers.

Hubby started treatment 2 weeks ago. Take plenty to do. Books, ipad etc. Some lemon sweets or mints to help mouth taste better.

Some company is good. I stayed with him throughout treatment.

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Hello Jemisavs5, I have just finished FCR on 20th July. I had 5 full treatments but the last one was just Rituximab. To be honest, I have had quite an easy time of it apart from the strong feelings of nausea (even with the anti-sickness tablets) and much tiredness. Funnily enough, I found that strong tasting foods like ginger and curries, were more palatable for the nausea than bland foods. The fatigue does increase as you have more treatments as they build up in your system.

The tablets are quite small and it is advisable to dispense them into a big bowl to avoid them shooting out of the packet and onto the floor (and then be hard to find!).

My biggest issue was very swollen, painful and sore legs which hospitalised me for a couple of days. It turned out to be varicose eczema with some infection. The answer is to keep legs moisturised (every day) which provides a barrier against bacteria. The treatment can dry skin a lot so you might find the need for more moisturiser elsewhere as well.

Keeping safe and away from people with germs/viruses and crowded places after treatment is important as your white blood cell count will obviously plummet and you will be open to infections. Also following a neutropenic diet and good hand hygiene is essential in order to keep well.

Do keep using this wonderful forum to answer your questions you will find heaps of help and support here. For example use the search facility to look for more advice previously posted on things like the neutropenic diet, etc.

Now I look back, the time has gone quite quickly for me and I cannot believe I am now finished with the treatment. It is a wonderful feeling.

Try to keep positive and I wish you all the luck in the world for your FCR journey.

Holly

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Thank you. May I ask if you worked during your treatment? I am concerned about the fatigue but taking 6 months off is not an option.

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Week 1 is tough. You will have fatigue, nausea and overall not feel very good. Week 2,3 and 4, you can easily work but avoid crowded places. Stay away from infections.

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I am retired so did not have to worry about work. I felt quite good two weeks after the first treatment but as the treatments built up, fatigue was definitely an issue. As Mag1309 says, you have to be so careful in regard to infections which may be more difficult at work. I hope you have understanding work colleagues/manager as I think you will have to pace yourself and allow your body to have rest after the treatments. FCR has an enormous impact on the bone marrow and it needs a chance to recover and I do not think overworking or lack of rest will help matters very much. All the best, Holly.

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Jemisaves5, of course we will keep you in our thoughts and prayers. Keep us posted on progress. I may have to start FCR in the next year. God Bless Marc

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Best wishes!

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Don't be frightened many are there to help.

First cycle is a learning experience as you will find out the procedure and experience the tablets. You need to establish a routine in week one.

Time to listen to your body. Take your temperature everyday and also if you feel a bit off colour.

Keep activities simple the first week of every cycle. The steroids they give you at time of infusion make you eat day 1&2 but by day 4&5 the appetite goes. Doesn't matter it's back by day 7. So eat what you want but try and keep healthy foods on the agenda. Each cycle have a sin!

No alcohol in the first 2 weeks of every cycle and best to abstain all together. The nurse advised against red wine.

Weeks 3&4 of each cycle can be normal in activities. Try to exercise but don't over do it. Have a special day out or a special evening. Treat yourself.

The consultants say that life can be normal for many during FCR . Keep the chemo contact card by the phone and ask if you are worried or unsure.

In cycle 5 I got so fed up of taking the tablets by day 5 and it was a chore but routine was important. No cycle 6 for me.

Best wishes. You can do it.

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I am getting the treatment through IV. Do I take tablets too?

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I'm in the UK. Here we have day 1 Rituximab infusion. Day 2 we start the tablets F and C. and anti sickness. When those finish in the first week we continue to take tablets to prevent shingles and a type of pneumonia. First cycle only we take tablets to help avoid gout and help our kidneys.

Many pills that is why you need a routine. I actually sat down in cycle one and wrote a pill timetable to fit in with my lifestyle.

Don't panic it will become routine.

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FCR in the U.S. is all by IV, in other countries the Rituxan is by IV, but the fludarabine and cyclophosphamide are by pill.

Its because most states do not have oral drug parity, or as my friend calls it oral drug parody...

Irregardless of delivery, the results are the same.

~chris

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If you are doing it through IV, which is what I did then prepare for LOOOONG days. I would bring a variety of things to do. Most centers (at least from what I hear, and mine most certainly was) are great about getting you water, crackers, warm blankets, they have comfortable chairs. HOWEVER, they also are busy...I got bored quickly so I'd switch between my iPad; reading and attempting to sleep then when my friend was there talking to her. She came with but often would go "wander" because she'd get tired of watching me sleep LOL

I brought snacks but never really ate anything; I brought mints which sometimes I did suck on.

As for work- I was a teacher so I had no choice but to take the 6 months off because I couldn't pop in and out and didn't want to call at the last minute if I didn't feel well (and there were days when I woke up feeling great then 10-10:30am crashed and burned and just wanted my bed!). It really depends on your job and how flexible they are. I know it was extremely hard for me to take the time off and I felt like a failure because I would hear of other teachers who worked through it (I knew of a couple!). But I know deep down, I would have been miserable at school which would not have been good for my students.

Overall, I had "1" issue each month but nothings compared to what others go through so I feel like I got off easy. One month I was super fatigued, one month I had an upset stomach for a solid week etc.

Good luck and if you have any questions, please feel free to ask.

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How are you feeling now. How long ago did you go through this? Is your life back to normal? Did you lose your hair?

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Well unfortunately I have some pretty bad markers and so I went through FCR for 6 months then had a year 'off' my levels slowly returned to normal; I never really had my energy back but there could be other reasons for that. After a year, my blood work started to go crazy again and the lymph nodes returned.

After a couple months of tests, it was determined that my CLL is very aggressive so I'm now on imbrubica. Just started a week ago so I'm not sure how well it's working yet.

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FCR makes your hair thin. None notice.

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Our prayers go with you on your journey. Best wishes.

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Take a book or I pad with you. I'm in UK and took tablets for 5 days at home. Sickness was an issue, let your care team know soon, it can be resolved.

My neck returned after one round of treatment, I hadn't realised how swollen I was, just thought middle aged fat! That's the good bit. Week 1-2 tired and not great. Weeks 3-4 better. I didn't work as I worked in a hospital setting, lots of sick people and I couldn't guarantee consistency.

I wish I'd taken up Macmillan exercise programme weeks 3-4. I think it would have helped my mood.

It seemed endless at the time, but looking back it was a quick 6 months.

All the best.

Mags

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First off - best of luck and try not to worry - it is not as bad as you think!

I have just finished my 6th round of FCR two weeks ago.

It causes hair thinnning but not hair loss, so that is good. I used Bioxsine shampoo and conditioner also ( it is a herbal shampoo for hair loss)

It does take a toll on your body and mind but if you listen to your body, rest when you need to ,the fatigue is manageable. I wanted to keep working throughout treatment but my consultant advised against it , and I am so glad I listened to him now. If you can at all take the time off to allow yourself to deal with the treatment and rest as you need to.

The anti sickness meds worked for me, I had a few bad days but overall good. I found that strong flavoured food smells made me nauseous.

The worse thing for me was that I got a serious fungal infection in my mouth, took months to sort and really made me miserable. The nurses and consultant were great though , they kept trying new treatments til they found one that worked. It seems alot of people get some symptons , so my advice is always tell them and ask for help to sort it.

For the medication , I had Rituximab as infusion, and the FC as tablets. Make sure you drink around 3 litres of water on the days you take them. It helps . Also make yourself eat everyday no matter how much you feel you don't want to . At the start I was on Allopurinol to prevent gout / uric acid build up in joints, but once counts went down I was able to stop that. I am still on antibiotics and anti viral tablets and understand that I will be for three months.

You need to tell visitors/ friends etc to stay away if they are sick or in contact with anyone who is sick. You have to avoid infections etc . Be vigilant about hand hygiene and make everyone use antibacterial gel .

Hope this helps , best of luck and remember to be kind to yourself and have patience when you feel bad, it does pass. As someone else said , the last six months in hindsight have gone by very fast, even though there were some tough days in there .

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Thank you so much for the wonderful advice

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hi, so not over eat, just eat enough and we'll but do not overeat. Do not eat fatty and fried food in order not to overload your liver. Isolate yourself from overcrowded places in order to avoid viruses.

good luck!!!!!

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Best wishes and you are in my prayers. I also had FCR (IV-in USA) Did ok except for some loss of appetite. I drank lots of fluids as instructed and took meds for anti-nausea. Overall I did fine. Went to work except for days of Rituxan (which was a long IV infusion plus Benadryl which made me sleepy).

JoMary

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Hi, I have a question, is FCR the only first treatment for someone going off of W&W? Or does it depend on which mutation you have and other factors? What is the most common first treatment with Trisomy 12?

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I think your age and mutation status play a role in this decision. I look forward to hearing other replies.

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Trisomy 12 isn't singled out for special treatment like say 17p deleted or TP53 mutated.

There are a number of first line treatments, depends a bit on your country and drug funding availability.

Other options would be Imbruvica (ibrutinib), FR a reduced form of FCR, Gazyva and chlorambucil, for patients unsuitable for FCR.

FCR is the gold standard treatment for younger fit patients, and FR, is used sometimes on patients with comorbidities.

In the U.S. Imbruvica (ibrutinib) is used in about 22% of firstline according to Abbvie

~chris

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Thanks.

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My thoughts and prayers will be with you. I'm still in watch and wait so I am unable to give any advise but I definitely can remember you. Good luck just stay positive. Keep in touch.

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