Just finished FIRST round FCR - what ... - CLL Support Assoc...

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Just finished FIRST round FCR - what will happen next?

Marie-54
Marie-54
30 Replies

I just finished three days of FCR infusion. They waited for the third day to infuse the Rituximab, but I had Cyclophosphamide and Fludarabine all three days. I had only one tiny issue with a scratchy throat and itchy tongue with the Rituximad which they knocked back quickly with Benadryl.

My Question is - when will I start to feel the effects of all this? As of this moment (just home from the 3rd day infusion) I feel perfectly normal. What have those of you who have had FCR encountered when starting the regimine?

30 Replies
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cllady01
cllady01Volunteer

Marie, if you are on a computer, look to the right of this post, you will see Related Posts and the posts showing are FCR related. You can read what others have posted up to now.

Here's hoping you continue to feel perfectly normal and when finished with the treatment, you have a long remission.

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Marie-54
Marie-54
in reply to cllady01

Thank You.

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Cllcanada
CllcanadaTop Poster CURE Hero

I can't emphasize how important it is to stay well hydrated...

How was room 5333?

A tip... it gets chilly by the windows in winter... ask for a blanket...

Glad it went well, it takes a few days to get rolling, usually

some toilet issues...

~chris

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Marie-54
Marie-54
in reply to Cllcanada

Room 5333 MDCU was very friendly and I was far from any windows. Got 2 beds and one seat very close to the washrooms over the three days, which is handy because as you said, I am pushing a LOT of fluids.

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Cllcanada
CllcanadaTop Poster CURE Hero
in reply to Marie-54

Treatment is accumlative... the rituxan Chinese Hamsters usually cause diarrhea or constipate... or both... 🙄

Round one and two are quite easy, 3/4 harder and 5/6 are usually a rebirth...

I felt 20 years younger... it is amazing how insideous CLL is.. .

~chris

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Marie-54
Marie-54
in reply to Cllcanada

I have SLL though it is treated exactly like CLL. My bloodwork never ever was out of whack. With normal white blood counts I wonder what it will do, but I guess I will have to just wait and see what happens. Lymph nodes are already starting to shrink. I feel no effects whatsoever at this time (day 4 of the monthly cycle).

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Lola69
Lola69
in reply to Cllcanada

I was constipated for 6 days then all hell broke loose. I love rituxin and it’s a pity they won’t give it with imbruvica

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seoul

I experienced no side effects during the complere course of FCR. After first round , four days, i thought, now everything will happen and I would feel unpleasent. Went to bed and waited bit nothing happened and therefore after one hour git up again. Few times i needed a granicyte injection to increase leucocytes, this is little harmfull in backbone, but nothing that hurd me.

So, keep fit and go on with normal life.

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Marie-54
Marie-54
in reply to seoul

You made me giggle. I got a picture in my mind of you lying in bed with your covers up to your chin waiting for something to happen very suddenly. It was cute. No matter what does come up, I believe it will be a slow insidious creep into awareness so monitoring will be the key. Thanks for the acknowledgement that we might not feel anything.

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holly2
holly2
in reply to Marie-54

Marie, I had my F&C by tablets over 5 days after having Rituximab on the first day. My first FCR was not too bad, but each treatment made me feel a bit worse until the 4th when I was dreading taking the tablets. Maybe having all by infusion is better and causes less nausea.

Anyway, I wish you all the best with your treatment and hope it continues to go well, and you get great results at the end of it!

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whitelily22
whitelily22
in reply to holly2

holly, where are you from? :)

In my country (Iceland) we have the same procedure, that is R iv but F and C in tablets. Can anyone here explain to me why this difference?

You also mention that you believe injections may cause less nausea.

- Anyone else here who had F and C orally?

I have not had my chemo yet so I would really like to know!

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holly2
holly2
in reply to seoul

All I can say is "lucky you" !

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holly2
holly2
in reply to holly2

Oh, my message above was intended for Seoul !

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seoul
seoul
in reply to holly2

Thank you holly2 and all the best to you. I would appreciate talking to you in this context again in 10Years after long remissions. Take care

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holly2
holly2
in reply to seoul

Oh, lets hope we both get long remissions! All the best.

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AGreenwoods

Hubby is getting ready for round 2 on Monday. He did fine during the infusions (Ritux on Day 1 with some reaction - Benadryl helped), then the next day he got up and attempted to drink some coffee - BIG MISTAKE! He threw up all day and was unable to eat or drink anything. After a trip to the ER that night he recovered slowly. Stay away from anything that may make you nauseous. After week one, he has done pretty well. Pace yourself. I appreciate everyone's contribution to this site. It has been very helpful in getting up to this point.

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whitelily22

But how do we know in advance what will make us nausious?? 🤔

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Cllcanada
CllcanadaTop Poster CURE Hero
in reply to whitelily22

Some treatments ments cause more nausea than others, and your doctor may prescribe antinausea pills. The trick is to anticipate nausea and take the anstinausea meds well in advance on the event... not easy to do however.

Some people also have triggers... for me standing in the checkout line in the foodstore is a trigger... if feel very very nauseous every time...

~chris 🇨🇦

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whitelily22

thank you Chris!

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whitelily22

... Chris, by the way, what does "well in advance" stand for? :)

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MilliePerth

As my husband's haematologist says - you are a unique human being and each person responds differently. My husband was very sensitive to FCR and the six cycles were progressively more grueling. He also had an anaphylactic reaction to the drug they give you, to stop the allergic reaction to Rituximab. He struggled with Rituximab and infusions were hard, temperature spikes, with Rituximab being given slowly over many hours. Main side effects were nausea, fatigue, chemo brain, joint pain. Strangely, he felt best after cycle 3 but then investigations re stomach issues, set him back a long way. I think one of the things we have learnt, is that CLL is a chronic disease; and this presents a lifetime of learning. Thank goodness for this community.

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Marie-54

I am sorry to hear of your husband's issues. As of today (day 5) I have only ice cold feet as an issue and some mild fatigue. No reaction at all post infusion. I am one of the lucky ones I guess.

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Lola69
Lola69
in reply to MilliePerth

I did not like FCR Did the 6 cycles

Only got a 20 month remission but won’t complain as I am still here and thriving. It’s my 6th Christmas since diagnosis.

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Sheelin

Hi Marie, I had the recommended six rounds of FCR (over eight months). My neutrophils were not happy which is why some of the treatments were delayed until they had recovered enough to administer the next round. Mine was rituximab by infusion for the first day, then tablets of cyclophosomide and fludarabine for the following five days (and I had an instant reaction to them) together with sickness tablets and antibiotics. I was given to understand that they no longer gave the FC part by infusion! Honestly, my system has always negatively reacted to drugs so it was not happy, especially as the months passed, but it saved my life. Fludarabine takes some time to leave your system, but if you wish you can read all about it online. There is plenty of material, in medical detail and simpler information, but you may neither take it in properly, nor wish to do so. There was also some thinning in hair from the cyclophosomide.

On a positive note, the FCR regime is highly successful, although as you will have been advised these drugs hammer your system, to different degrees with different individuals, depending on your general health, stress levels, and stage of the cancer on diagnosis, especially the fludarabine which has a strong impact. Nevertheless, you are the age I was when I received mine and it has been three years already in remission. Being aware of my physical decline and various health issues for a considerable time that I had prior to diagnosis at Stage 3 (mine originates in the lymphatic system and does not show in blood results), there also is no reason for me to consider that a relapse is due anytime in the near future. Ibrutinib is the new wonder drug for those when relapse becomes an issue but hang tight, the FCR will do the business this time around and given you plenty of time.

My only advice is that if you have family and friends that wish to support you, share how you feel, acknowledge their fear, and be grateful that they are there for you. Enjoy them and remember that it does not define you unless you allow it. My family were 12 hours away and friends apart from two ran for the hills as soon as "cancer" was mentioned, presumably not knowing how to react, and/or being afraid of it. If you are someone who can accept any support and help that is on offer, do it!!

Don't be afraid, but if you are, as they say, feel the fear and do it anyway!

You're worth it.

Sheelin.

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Marie-54
Marie-54
in reply to Sheelin

Thanks Sheelin.

Mine too is SLL instead of CLL (Lymph instead of Blood) so it did not show up in bloodwork either. First round and subsequent rounds will all be by infusion, so I had a port installed so I do not have to blow out my veins. I had no issues with the first round at all unless you call continuously ice cold feet a problem. Given what could have transpired I consider myself lucky. Round two starts on the 20th for three days. The lymph nodes have responded very well already to the first round. I was amazed at how quickly they shrank.

I am lucky that my family is in town and my friends have not run for the hills. Between immediate family and closest friends I have 2 doctors (one is an oncologist) 4 nurses, 1 pharmacy technician and a solicitous husband. I am truly lucky in that regard.

One question for you, since our version of this disease manifested in lymph nodes instead of the blood, how do they monitor you after the FCR rounds have been completed? I presume bloodwork is not the deciding factor.

Thanks for your note and support.

Marie

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Lola69
Lola69
in reply to Marie-54

I have SLL. Was diagnosed in 2013 November. Neck was so swollen. At first they thought I had a tooth abscess :(

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Sheelin

HI Marie,

I am glad for you that so many caring people are in your orbit.

They do follow up checks every 3 to 4 months, and are relying on being able to feel when the lymph nodes come up. It was a bone of contention for me at first, especially as on diagnosis my blood work was normal, and no one believed that I had a problem for so long, hence the late diagnosis.

My haemotologist is still focused on my bloodwork, although it was never an issue and is in fact worse than when I started. Whatever they may think going forward, I remember clearly my descent last time and will make them aware of any repetition. You are the only person that I have heard to have SLL also, and for me, there are clear differences to those with CLL only diagnosis.

Infusions would have been my choice if offered as I struggled more and more with taking the tablets for five days of each passing round, but found it was much easier to sit all day the first day having the infusion of rituximab. I do agree with comments above. Everyone is so different no one can say for definite about the impact. Plus if you are having 3 days infused FC, perhaps it will all be over sooner. Either way the time will fly and remission is waiting for you. Get some nice fluffy socks though. It was the only time in my life that I felt cold, much to the amusement of my family.

Wishing you everything you wish for yourself going forward.

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Marie-54

Seems strange that the only way they can monitor is to 'feel' for the affected lyphm nodes to start growing again. And I agree with you 100%. Even though CLL and SLL are treated the same way, since the WBC and Leukocytes have never gone out of whack, to me it is an entirely different process and I wish the specialists out there would print a post treatment protocol for we few SLL sufferers.

May you be in remission for a long long time.

Marie

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MsLockYourPosts

Marie - you are the only person I have seen mention ice cold feet since I got rituxan monotherapy in 2003. At the time I was very ill and didn't make the connection. I was sleeping under an electric blanket with heating pads on both feet and lower legs and nothing. In 2015 I got Gazyva (related) and had the same reaction, though not as bad.

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Marie-54

MS - my feet are still ice cold after a year - but I wear socks to bed, and after about an hour they warm up enough that I can kick them off. For the most part, FCR was uneventful until the end when the levels dropped too low to do the 6th round. I finished in Feb 2018 and here we are in Dec 2018 and all is good. Merry Christmas everyone.

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