The Leukemia & Lymphoma Society - Fighting Blood Cancers
15 Replies Latest reply: May 14, 2012 11:04 PM by mivkz RSS

Anyone out there gone through FCR for CLL?

elce Registered Users
Currently Being Moderated

I am going to start FCR tomorrow for CLL. I am pretty scared as I even hate to take any medication, though now I will be on several. I will be taking all three meds for three days, off 25 days, continuing for 6 months.  I had a port placed in my upper right chest last Tuesday and it is still a bit sore so am not looking forward to being poked there so soon. Anyone have a comment on their similar FCR experience.

  • Re: Anyone out there gone through FCR for CLL?
    kevinmac Registered Users
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    Hi I went thru fcr from may to oct in 2007 I'm still in remission. I didn't have any real issues with the tx other than feeling more tired after the three day tx each week.I had no issues with the rituxan at all. I was given nausea meds and benadryl before each tx but never felt nauseous.

    • Re: Anyone out there gone through FCR for CLL?
      mivkz Registered Users
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      I was glad to read your post.  My Dr and I talked about FCR as my WBC is climbing and at 171 now, was 134 a month ago.   Going for a CT Scan first and then probably a bone marrow biopsy.  I am glad you did so well, it makes me feel a little more comfortable. Were you able to function after the 3 days or was it severe fatigue?   Just asking as I hope I can still work.  Thanks for your post.

  • Anyone out there gone through FCR for CLL?
    TMSCLL55 Registered Users
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    Hi.  I am new to this website and start FCR on March 12th for 5 days in a row.  I, too, wonder about the experiences of others who have taken FCR, especially side effects and recovery time before returning to work.  How was your experience?

    • Re: Anyone out there gone through FCR for CLL?
      rjmeistro Registered Users
      Currently Being Moderated

      TMSCLL55       Hello!

      I went through 6 rounds of FCR last February.  I came in for 3 days every month.  Honestly, I never felt ANY side effects.

      My WBC was very high so my Doctor was concerned that all the cells that were going to be killed off would present a problem (clogging things up, I guess) so for the first 3 days I was admitted to the hospital.  When I received the Rituxon ( The R in FCR) it was usually on the 1st day and took almost an hour just to get that plus another couple of hours for the other chemicals so bring alot of reading material or a MP3 or portable DVD.  When your administered the "R" a nurse will be there with you and take your vitals every 15 minuets to make sure your not having a reaction to it      Good luck TMSCLL55         I hope your experience is as smooth as mine was.

      • Re: Anyone out there gone through FCR for CLL?
        mivkz Registered Users
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        Hi - thanks for posting this info.  My Dr and I talked about FCR treatment today and she told me exactly what you are saying, 3 days every month.  It is so nice to hear you did not have any side effects, makes me a little more comfortable.   She also said they do monitor you a lot with the Rituxon to make sure you are tolerating it well.  What was your WBC when you had treatment?   I am at 171.  Did this treatment bring your counts back to the normal range?  She said I am now in the "gray" area in whether to treat or still wait so I am going to get a CT Scan and probably a bone marrow biopsy to determine the best treatment.  The CT Scan will probably tell us more as I have not had one for over 2 years.  I am glad everything went smooth for you. 

        • Re: Anyone out there gone through FCR for CLL?
          rjmeistro Registered Users
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          mivkz:

          Hello

          I am more than happy to share my experiences with you and anyone else.  The wait and anxiety of whats to come is very worrysome, I know.  My count was up around 240 when I went in for chemo. It was amazing how quickly the chemo reduced my swollen nodes and dropped my WBC below 4.0.  I don't know if I mentioned it but my Hematologist was concerned about the amount of cells that he knew would be killed off, clogging up the works so he put me into the hospital so I could be monitered closely.  It did kill them off but I had no problems

          I rmember thinking that I would be sick, throwing-up and miserable when I got chemo... the nurse told me that in the two years she had been on the cancer ward No one had gotten sick.  They give you anti- nausia med ( a "drip") as part of your chemo treatment.  I felt fine!  I asked if they by mistake gave me a salin solution instead of the chemo.  All the drugs are given intravenously ( usually in a vein in the back of your hand,  again, no big deal) and the "port" is left in for the 3 days of treatment). You just sit there and relax for a long time.  I brought a CD player a MP3  and a book.

          You mentioned a biopsy.  The number one terror !! Again...  it was surprisingly nothing.  I've had worse flu shots.

          If you look at where it all takes place ( your hip bone) there really is nothing there.  A thin layer of fat and muscle and then bone.  There are no nerve endings in bone or in the marrow all I felt was some pressure in the area which felt very strange but did not hurt, at all!  All my concerns were for naught.  I have been getting steroid injections in my hips to relieve some problems in that area and its the same concept    there really isn't much there that will hurt you.  I went back for a second round so believe me if I went back ... there is nothing to fret about.

          • Re: Anyone out there gone through FCR for CLL?
            mivkz Registered Users
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            Thanks rjmeistro, lots of good info!    I did hear that no one really gets sick and that it works pretty fast.   When your counts and nodes were normal, did you notice any difference?  Did you feel better?   I really don't feel that ill right now.  I just want to hold off as long as I can.  Do not want to loose my hair!   I will probably get the CT Scan in about 2 weeks so I will know more then if I need to get treatments or can still wait.  Having some abdomen pain that comes and goes and hoping it is not my gall bladder.  This should show up on the CT if it is.  Hope it is nothing worse.

            • Re: Anyone out there gone through FCR for CLL?
              rjmeistro Registered Users
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              mivkz:

              Hello       I have not had a CT scan.  It has never been mentioned (?)

              I never felt sick before treatment (chemo).  yes,  I did have swollen nodes below my jaw but they did not bother me except that they were a reminder everytime I looked in the mirror.  Swollen nodes under my arm did tend to shut off the blood flow so my arm would "fall asleep" on occassion or feel like I had a golf ball in my arm pit other than that I felt normal.  Could be I was getting winded more or tired, I don't know.  After treatment, the nodes are normal and it is as if there is nothing going on... I go in for a blood count every 3 months now and life goes on.  My count never really got back to a normal range ( it's 3.7 now and 4.0 is the low end normal) so I am concerned around sick people and especially kids ( huge germ carriers)  anyway.... I made it though the winter and feel great!

              • Re: Anyone out there gone through FCR for CLL?
                mivkz Registered Users
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                Hi all,  I had a CT Scan last week and met the Dr today.  Nodes are enlarged everywhere but the main problem is my spleen is enlarged.  Should be about 13cm and it is about 22cm.   Pushing on other organs.  WCC was 169 so same as it was about a month ago.  Another problem is my platelets fell to 98.   So, I am getting the bone marrow biopsy next to see how aggressive the disease is becoming.  Then will come the dreaded FCR treatments.   Question - did anyone still keep working during the months of treatment?  I would like to keep working ( on the non-treatment days) but not sure about that cause she did say I should stay away from anyone / crowds where I could catch something.  Not sure how I will take the treatment - fatigue, nausea, maybe hair loss etc   . I asked about side effects but her response was a little vague.   I have to make a decision on working or not within the next month.   

                • Re: Anyone out there gone through FCR for CLL?
                  rjmeistro Registered Users
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                  mivkz:  Hello.....sorry to read about your current situation.  I hope I can answer some of your questions.  1st off: the FCR treatments had NO side effects (none)  no throwing up  no nausea  NO hair loss.  I felt normal.  I felt normal but thats me.  I asked the attending nurse if anyone got sick and I was told not in the two years she was there.  I'd go in, get the treatment and drive home.  The bone marrow biopsy... I've had worse flu shots!  All I felt was pressure (no pain).  I've said this before but there really is not much in the hip area and that is numbed there is no nerve endings in bone or marrow so nothing there to hurt you.  OK, now I have a question for you.  You mentioned your spleen.  I suspect mine is swollen.  Stomach aches, If I am sitting and cross my arm across my lower rib area I get a sick feeling. Anything you or anyone else has noticed to describe a swollen spleen would help.  mivkz,  good luck

                  • Re: Anyone out there gone through FCR for CLL?
                    mivkz Registered Users
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                    Hi - glad to hear you did so well.  I was told I could drive myself to the treatments.  I know that FCR is 3 days every 28 days for about 6 months.   How long did he treatment take per day for you?   I would like to keep working so I hope I feel OK and I do not want to have to get a wig.  Dr said that it is common for people to lose their hair during this treatment - you were really lucky and I hope I am too!  I am not afraid of the bone marrow biopsy.  She said it will only take about 1/2 hour and most people say it does not hurt so I should be out of there in an hour.  My CT scan showed a lot of enlarged lymph nodes which I expected.   I thought I had a gall bladder problem cause I had mild pain in the mid section.  She said the report shows my gall bladder is fine but my spleen is very enlarged.  She said it is under your left rib cage and my spleen is falling about 2" below my ribs now and she can feel it, I can't seem to feel anything when I press on that area.  She said my spleen is pressing on other organs, mostly the stomach and one of the symptoms is when you eat you feel full really fast.  I don't have that symptom.  But after I do eat, I am bloated as my slacks get really tight around the waist.  My pain is very mild, comes and goes.   Mostly when I get up in the morning, I feel a pain/pressure in my midsection.  After I move around some, it seems to go away.  If I twist and turn a lot, I feel the mild pain. It seems to navigate its way to my mid-back area at times too.   It is more annoying than painful, but it was scaring me as to what it was.  I can't believe you never had a CT scan.  This is my 3rd one in the 7 years I have been on watch and wait.  The last one was Dec 2009 and this new one shows a lot more nodes enlarged now.  Having my platelets at 98 is also a big concern.  I will post another update after I get the bone marrow biopsy results.  Thanks for your input!

                    • Re: Anyone out there gone through FCR for CLL?
                      rjmeistro Registered Users
                      Currently Being Moderated

                      Good Morning mivkz:    Yes, my treatments were the same length of time.  Usually I was given the (R) Rituxun on the first day and that alone took over 4 hours the (C) was40 minuets and the (F) 30.  There are also anti-nausea meds and anti- something else that took about 20 min. each    so it is a long first day!   the following two days there is no Rituxan.  I wish you the best with the Hair thing...    I didn't, and others reported to me that they had no real noticable loss ( my Hematologist told be that next time will more than likely be different)..  I hope that this helps take off some of the anxiety.

                      From what you have written I think I have the spleen thing going on.  I have been in remission for about 7 months. I have noticed some nodes swollen in my neck and underarm areas lately.  Here we go again      

                                                                                      Have a great day

  • Re: Anyone out there gone through FCR for CLL?
    don47 Registered Users
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    i just got done with FCR in March after doing 6 cycles of 3 days every month.  My first experience with Rituxan was bad.  I had a severe reaction so they had to stop it for an hour and wait for me to recover from that and then after that the Rituxan has to start slow.  First my day usually lasted 6-7 hours.  Needless to say the FCR did not work for my CLL.  My cancer cells doubled while on FCR so now I am starting BR today for another 6 cycles.  The only real side effects I had were fatigue but I was able to work.  I own my own business so taking time off work is not very easy.  I would have my FCR on Tues, Wed and Thurs.  By Friday at noon I would have to go home, recover over the weekend and then I was good until the next treatment.  I had no hair loss or vomiting.  I did after 4 cycles have the metallic taste in my  mouth by Jolly Ranchers worked great for that.  I hope your treatment works better than mine did.  On to course 2 of chemo hoping it works and puts me in remission.  My doc said that 90% of people who had FCR first are in remission.  I guess I am just the lucky one it didn't do anything for.

    Don

  • Re: Anyone out there gone through FCR for CLL?
    bernie64 Registered Users
    Currently Being Moderated

    Yes I've done the FCR treatment,just finished in feb, 6 months, didnt get to sick at all, a lil nausea, but alot of fatigue, that was my biggest side effect. I took time off from work, because i work with the public on a daily basis, and out in the elements, and with a suppressed immune system not good idea to be around alot of people, you never know who has a cold or not.  Just did petscan and my nodes look good have shrunk down, and the only problem i'm having now is my RBC is running low, and high ANC. and a little fatigue. but trying to take less naps these days and get some walking in for exercise.

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