Almost a year has past

About a year ago my body started failing. My eye sight became sensitive to the sun. I was wearing sunglasses. I was not active moment to moment. I stopped to rest if no one was looking. The less I did the better. My nose and gums bleed some. I would be ill most of the time in my sinuses. July 13 Found me just stopped. Went to the clinic then three days in the hospital. Blood transfusion with four months of FCR treatments. These are my numbers:

7/13/15 11/2/15 2/8/16

Start Month 4 Month 7

WBC. 1253.9................ 2.4..................4.7

RBC. 2.75................... 3.27...............4.03

PLT. 36...................181...................132

LYP(A). 233.1..................(.6 )................... 1

This week is another Doctor visit. Watch and watch for me now it seems. What would you folks say? Is this typical as the Doc said. But I wonder what to make of where I am at. I would had liked to go six months of treatment, the Doc said after four months of treatment, " more treatment is not recommended". It had be rough enough my body did not argue. This is my post. I enjoy not being by myself. My door is open if you come around.

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  • Good morning from gloomy UK. But don't let the weather ever get you down!

    I'm not qualified to comment on your numbers - I think mine were similar. I was let go after six cycles of F and C and 4 of the R. I'm now on the watch and wait three monthly inspections!

    It's important to remain positive that the treatment has performed well even though our bodies feel like we are beaten up. In many ways the psychological effects have a greater effect on our lives - worry, lack of confidence, fear of the disease redeveloping etc.

    Meeting with friends and family, if possible can help. Perhaps join a support group.

    Setting goals - no matter how small - and rewarding yourself with something nice as you achieve them.

    Starting gently with some physical exercise can improve your confidence and sense of well-being.

    Get the brain occupied by trying something new - even distracting the brain by getting occupied with something else can help - e.g. reading up on a different subject - probably not CLL - as that can add to the worry sometimes.

    Enjoy the Spring - it's a time of new growth - let it signify your journey into the new normal you.

    Keep posting and making friends on this blessed forum.

    Thinking of you,

    R

  • What a wonderful uplifting response, something for us all to be aware of,

    Thank you.

  • Madgefrau

    You've had a bit of a rough ride!

    Looks like the treatment you had has done a pretty good job to me and your bloods are recovering slowly.

    I wouldn't worry about only having 4 cycles of FCR it is common to stop if bloods are not recovering. I only had 3 cycles before my Nuets struggled to recover and concern was expressed about the possibility of bone marrow failure. We waited 8 weeks for them to get back up but everyone decided it would better to stop treatment.

    What you have to remember is we all react to treatment differently and whilst 6 cycles are the normal treatment regime if you react quicker then you will have less.

    It sounds like your symptoms were pretty bad and your original bloods confirm that treatment was required. Your platelets are up and down just like mine! Mine have varied throughout my journey with cll from 75 to around 130 and they are still moving up and down a little even though I'm in remission.

    You should also remember that it is possible that rituximab can continue to work for several months after you stop treatment. I'm told it's possible to continue up to 12 months in some patients.

    Overall it looks pretty good and hopefully this will be confirmed when you visit your medics .

    Keep us informed of your journey and best wishes for the future.

    Geoff

  • Dear Magdefrau,

    Auf Deutsch sie sint sehr gut!

    I think many of us would be very happy with your results, it appears your neuts are recovering - est. ANC 3.7, your Red Blood is good, platelets are OK.

    The key question is how do your feel? Have your problems with eye sight, infections and fatigue improved? Hopefully they are all resolved completely.

    If your next few check ups show similar good results, you likely will have a long remission, and the decision to stop after 4 treatments will be exactly correct for you.

    We all hope that you can enjoy life and learn to love your new normal.

    Please tell us more about how you feel, and post in German if that is more comfortable, Google can translate for us.

    Len

  • Thanks for posting and sharing. Please write your questions down and bring them to your doctor. I felt your exhaustion, reading your post. I wish I had magic words. I am off Meds because of side effects and back on watch and wait. I am. Trying to rename it to "don't watch and live" in my mind. Hoping you can do that. Holding you in care and hope.

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