Sleepless night

I didn't sleep very well last night, silly thoughts kept going around in my head and I can't get this question out of my head which I think is probably just ignorance on my part, but I'm going to ask anyway because someone on here will be able to help me!

I understand with FCR that rituximab is the infusion which literally marks in advance the bad cells that the chemo needs to kill. So after my 1st session and follow up blood test my count is 149 to 1.9, brilliant but my neutrophils are 1. So what happens when I have my 2nd infusion and chemo, what will be marked if my count is 1.9 and what will the chemo kill? I'm sorry if this stupid but I can't get out of my head.

21 Replies

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  • My guess is the FC ,try to get some rest it will get better. Hoping for the best.

  • Somebody technical will answer this but first of all stop worrying the medics know what they are doing.

    I was technically in remission after cycle 2 but they continued until cycle 5 with the reason that they had to make sure all trouble was gone.

    I thought that rituximab found the cells and stopped them dividing and the chemo killed them off more easily but I'm unsure of that statement. Rituximab is the magic for longer remission times.

    Cycle 2 will not make you ill it will probably take the lympocyctes down again to below 1 and that is what is wanted during treatment. The neutrophils may not be affected much next time. If not there are fixes.

    You have just had blood taken at their lowest point the figure will be higher next week.

    At cycle 5 when I was stopped the treatment my wbc was a little below normal but recovered without extra help but I'll say it again that there are simple fixes

    First 2 cycles of FCR can bring up problems and then for most the rest is plain sailing.

    You are on the way to a new lease of life have faith in the treatment.

  • Thank you again and I do have faith in the medics but I like to understand the procedure and how it works. I feel ok now.

  • With CLL, the tumour load is only partially in the blood stream. There can be considerably more of the tumour load in hundreds of lymph nodes, the spleen, possibly other organs and the bone marrow. It takes time for these to shrink and even more time for FCR to penetrate the bone marrow and kill CLL cells there.

    Rituximab works via multiple processes; marking the cells for destruction by our immune system and also triggering apoptosis (cell self destruction). See the Mechanisms of Action section of the Wikipedia article: en.wikipedia.org/wiki/Ritux...

    The FC chemo part of FCR impacts dividing CLL cells, corrupting the CLL cell DNA during the duplication process, so that when the DNA is internally checked for an accurate copy and errors are found, the cell's apoptosis mechanism is triggered and the cell self destructs. This is why chemo doesn't work well for TP53/del(17p) CLL. These are the areas that normally contain the checking/apoptosis triggering genes. Without them, chemo damaged cells are more likely to survive.

    Neil

  • Thanks for this explanation Neil; I also was not sure of the mechanism and interaction between Rituximab and the FC chemo treatment. Excellent well explained answer.(as usual):-)

    Take care

    Kevin - Essex, UK

  • Thanks Neil.

  • Thanks Neil just what I was hoping for, a full explanation of what happens. I knew there was more to it and somebody would enlighten me. I feel much better now and ready for the next one.

  • Hugs to you sallyplest! Thinking of you!

  • Thank you I always get such a lot of comfort on this site.

  • " The hour of the wolf is that hour around 3 a.m. when you can't sleep because you're worried about one thing or another. "

    We've all spent time there!

  • I too an new to this forum....and its 01:30 and I can't sleep. I started reading about about CLL because I rarely do. I was a 49 yr old single mom with two teenage boys, whose father lives overseas in New Zealand when I was diagnosed two years ago.

    As far as I could think....through the shock, was that my life was over and what will happen to my poor kids, who would not want to move overseas.

    After getting over the terminal thoughts, I had another visit to the specialist where my mind was much clearer. I am on a W and W as well with no real changes to my blood count.

    I wonder if it is normal to be tired at the W and W early stage as I was told by the Dr.. that you will only be tired when you progress to level 1 or 2?

    Any insight to being tired by anyone out there who is in early stages?

    Judy

  • Hi Judy, welcome to the site. It's normal to have those terminal thoughts when diagnosed especially when you feel isolated and don't know anything about CLL and unfortunately neither do some doctors. On here you will learn invaluable info and advice from people who have been on W&W for many years. I felt tired from diagnosis 3 1/2 yrs ago and was one of the reasons I sought help. Everyone is different and another reason to ask any questions here where there are so many people waiting to help you. Best wishes.

  • Thank you, Sally.

  • Ah! The hour of the wolf! Sally, when I got Gazyva alone (Jan to June 2015) my labs were pretty normal - HGB slightly low, but the CLL was attacking my kidneys. My ALC started in range and went down. Neuts were OK, so there was no interruption in treatment. My ALC still hasn't fully recovered, and I have been told that it might never get all the way back up. My hematologists is not worried. Her comment - "You were taking a drug designed to lower your ALC." My nephrologist, at my last appointment, was absolutely gushing - not his style. He kept pulling up numbers and charts of my kidney related counts, etc. and pointing out all of the good things that Gazyva had done for me. CLL is so complicated. Just when you think you are beginning to understand what to look at, you find out that there is a lot more to it.

  • So relate to your need to understand. Thinking of you and wishing you well

  • We have been on this journey for nearly twelve months and learning more and more. Great question to ask. all the best.

  • Thank you, I've learnt everything I need to know from this site it's invaluable.

  • Agreed. Take care.

  • Hi! I just had my round one of FCR at OSU James Cancer Center Wed. -Fri. I was told that your bone marrow will make more and by the next round you will be OK. Or if your labs done before you return arent up, they will have you wait another week. Good luck! I felt good 1st and 2nd day but 3rd day developed nausea which does quite want to go away completely. So still on anti-nausea meds.

  • I have another blood test tomorrow and I really hope my neutrophils are sufficient to start session 2. I am so tired everything is an effort and I really enjoy fruit and salads which I'm unable to eat while neutrophils so low. I don't like moaning but sometimes it just gets to you. Good luck with your treatment and I hope your nausea improves.

  • Thanks! I have pretty much stayed on the sofa since I came home. Tired, sleepy, weak, lower chest discomfort I had before treatment and nausea. Ick!

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