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CLL Support Association
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First Cycle of FCR (IV)

I am writing this to document what I am going through and maybe compare with others experiences with FCR treatment for CLL. Intro: USA Male Diagnosed 2 years ago (age 50) with routine CBC labs and small swollen lymph nodes. CLL recently went from slow to rapid growth (Last 6 months). Hemo Dr. decided clinically it was time to treat before I had major symptoms. I agreed. Because of my age the Hemo Dr. decided FCR would get me the best outcome for the longest period of the time in remission. I have read up on this and decided ok. Started First FCR Cycle last Wednesday and Day 1 was rough. I went into Chemo shock with the Rituxan drug FC drugs went ok. It scared the heck out of me but the nursing staff handled it well and they stated this happens to most patients on their first cycle. I wasn't sure about that but I made it through it. Day 2 and 3 were the FC drugs and I tolerated it ok. Day 3 also included the neutrophils auto injector system. Yesterday, I was wiped out tired not sure if it was from the chemo or the neutrophils or maybe both? Today, I am at work and experiencing the typical tiredness with headaches that everyone reads about. I have an office job so getting through the work day ok. My question is do the FCR cycles get easier or stay the same or worst as the more I do of them? The nursing staff states most people have some symptoms after each cycle but they claim the recovery time is faster. I am not sure to believe them or not. I guess we will see. Cycle 2 in mid Dec 2018. There will be some anxiety about Rituxan Day 1 of Cycle 2.

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Good advice... I think I changed everything.

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Gosh...my experience was opposite. I started cycle 1 in June and after 3 cycles, reached remission. No problems during chemo or with Neulasta shots. I did get tired 2-4 days after chemo. And lost my appetite for a few days after each cycle.

Bounced back 1 week after each chemo.

It did feel accumulative by cycle 3. Little more tired.

I hope rest of your journey to be uneventful. Rest when you are tired... don't fight it. And when you feel good, then just enjoy your life. 💕

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Thanks for replying and sharing your experience

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Hi 👋

I did FCR in 2014 was only bedridden for 2 days a month.

5th cycle spent 5 days in New York. Each person reacts differently but it’s a good treatment.

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Great to hear! I'm assuming your are still in remission? If so that is wonderful.

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Hi. I’ve done one cycle of FCR orally and one IV so far. There’s a bunch of us over in the uk sharing our stories of taking FCR as part of the FLAIR trial.

You can read mine by clicking on my name to get to my old posts. This includes one that I had written prior to starting about tips I had found from others.

Or you can find the rest at this “index” post: healthunlocked.com/cllsuppo...

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Thanks UK for the link. I will look at it. Lets hope these trials finally find a cure!

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My (sons) experience is this: first cycle of Rituxan required small dose of steroids due to reaction. Given every subsequent cycle without recurrence. However with each subsequent cycle side effects and recovery time were worse, onset of side efffects was earlier, and lasted longer. He was in remission after cycle 3 and did not complete cycle 6 due to risks outweighing benefits due to falling platelets, wbc, hematocrit etc. just had labs done so we will see how his recovery is coming along after completing FCR 6 weeks ago. He is still taking antibiotics, antivirals and anti fungal medications.

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Ok well that is the confusing factor. Once in remission why go on I wonder? I would be ok with less than 6 cycles if possible. I know everything depends on labs. I really hope your son recovers quickly. Thanks for sharing.

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The issue is we are trying to destroy as much of the CLL as possible to Have a really long remission. Some patients just can’t take the full six cycles because of chemo effects on bone marrow (eg counts taking a long time to come back). And then there’s the controversy about those who reach early remission. Most UK doctors argue that if you possibly can cope with the remaining cycles you will almost certainly be increasing your odds of a nice long remission....

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As was posted earlier each one of us reacts differently to the cocktail bar.

Your experience with the first session will be taken into account during the following sessions and the treatment with rituximab will be slowed to ensure you don’t react so aggressively.

In normal circumstances it is possible that side effects of FCR are cumulative as you progress through the sessions. This is because the drugs continue to work through the 4 week cycle and each session tops them up. Rituximab is commonly believed to continue to work for up to 12 months after treatment is completed although the effect is less dramatic as the metabolism slowly gets the drug out of the system. However, everyone is different. Many sail through treatment without many side effects or problems but most suffer some side effects ranging from severe to mild.

Also you should be aware that although the protocol for FCR is six sessions each patient is treated based upon their reaction to the regime. As was posted above many do not complete the six sessions because the drugs work ‘better’ in some people in so much as they succeed in getting rid of those pesky cll cells quicker or affect the bone marrow in such a way that neutrophils or other blood cells take longer to recover. This may cause a delay in the cycle of treatment whilst let’s say nuets recover to around 1 which is normally the measure that treatment is ok to continue or other bloods or the bone marrow recover.

Side effects such as fatigue, stomach problems,sickness and rashes etc can raise their head each session but management of such symptoms should be done between yourself and your medical team.

Should your nuets fall to a stage where you become nuetropenic then there is a specific diet regime that you should have been made aware of. This ensures you don’t consume such things as shellfish, soft cheese and gives advise on not eating the skin of fruit amongst other import things.

No doubt you have also been informed that you should be checking your temperature fairly regularly to ensure you do not become subject to nuetropenic sepsis. Of course we have to remember that all cll sufferers have a weakened immunity but when under treatment with FCR this is exaggerated as the drug treatment continues to zap our immune system so be aware of people with colds or flu etc and in the main take care when in crowded places etc.

Whilst the list above may seem daunting most patients get through FCR without major problems as your body gets used to the regime. However, each one of is unique in our reaction to the treatment.

The main thing is once completed FCR is still one of the successful treatments and sees many reach full MRD remission.

In the majority of cases it allows our bloods to get a rest from cll and control the disease for many years.

Wishing you the best possible outcome.

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Thanks for your detailed post! I am already on that special diet. I guess for preventive purposes. I would be game for less cycles but I know that depends on how my labs are responding. I guess the Hemo Dr. has to tell you 6 cycles in the beginning to not to get your hopes up on finishing early and I understand that.

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I completed my fourth cycle of FCR back in February and had to stop due to all blood counts dropping drastically. Before that I had bad nausia and constipation after each treatment cycle that lasted about 3 or 4 days. I also felt very weak after treatment. On top of that, they gave me steroids to counteract possible side affects with each treatment and those kept me up all night for about three days after treatment. I also have a desk job, but did not work for the whole four months of treatment plus another three months of trying to recover from the very low blood counts. I am fortunate to be in remmision though so at least FCR did what it was suposed to do. My doctor said that he thinks that I had an allergic reaction to one of the drugs and that put me in the hospital for a week after that fourth treatment cycle. Now I'm getting monthly IVIG's while they wait for my blood counts to recover.

Hopefully you will not experience FCR the way that I did and sail through it.

Chris

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Thanks for your post. Sorry to hear you had a problem with one of the drugs. Hey you are in remission! That is so great. I hope you recover fast and get to feeling like pre CLL after all that is all of our goal is to be in remission and feeling good.

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Thanks! I really am feeling better every day. I think that the IVIG's are helping. I haven't gotten sick again since I started them. Yes, I am in remission so I am very happy for that. It's been a long road, but the road seams to be going in the right direction...:)

Chris

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I completed 6 cycles of FCR mid-September. I had nausea and fatigue in the 2 to 3 days after each treatment cycle. During the first 2 cycles, I usually needed to nap every day but I was able to go for a 20Km bicycle ride a few times a week. My energy level increased during cycle 3 and even more during cycle 4. I suffered from fatigue and low energy during Cycle 5, I was not able to get back on the bike. Cycle 6 was even worse. My hemoglobin count had fallen to 80 at the end of October, which explains the fatigue. I was given a blood transfusion, which helped for about a week. At this writing, my hemoglobin level has increased to 93 and I feel better. I also caught at cold and a cough the week after my cycle 6 infusions were completed. It slowly improved and the cold has cleared up, but despite the antibiotics I was prescribed, I still have bronchitis.

Best of luck with your treatment

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I also caught bronchitis and an upper respiratoory infection right after my final treatment cycle. I had been told to stop using a mask and that may have contributed.

Chris

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Sorry Noeagaman that post was for rvles. Interesting on the mask creating issues. I thought we were told to mask up around sick individuals. Thanks for your post and will look into the mask issue.

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My doctor told me to stop wearing the mask after he thought that I had recovered enough. Now I take one everywhere and wear it if someone is sick near me.

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Thank you for your post. It sounds like for the most part you have done well and you completed all cycles. Hopefully your bronchitis clears up quickly and on to normal health and activities for you.

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