Post FCR treatment 3 months blood test just ta... - CLL Support

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Post FCR treatment 3 months blood test just taken results lower then expected

Lindyver profile image
11 Replies

Hi everyone! I am new to this site. I completed a 6 month cycle of FCR and I am now 3 months post treatment. I have been feeling good but have to make sure I do not over do it. Yesterday I went for my 3 month check up and had blood work. It did not go as well as expected. My white count is 1.3 and my neutrophil .5 I will be going back in 2 weeks for another blood test and if this does not get better a neulasta injection. I have to say I was feeling "normal" for a while and this really put me back to reality. I am very scared. I will stay positive and keep up with washing my hands and staying away from sick people. How long has it been for others to see their levels come back after stopping treatment? My oncologist said that it might take 18 months. I tolerated everything during treatment so well that he thought it would be 6mos to a year. What has your experience been? Thank you so much!

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Lindyver
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11 Replies
Fowey2009 profile image
Fowey2009

That is what happened to my husband. Two years later everything apart from ALC back in normal range. ALC almost there.

Lindyver profile image
Lindyver in reply to Fowey2009

Thank you for response that makes me feel better. Did he have to go in for the injections? and if so how many times. Did he get any infections? Thanks so much for your response.

AussieNeil profile image
AussieNeilAdministrator in reply to Lindyver

Welcome Lindver,

What you and Fowey2009 's husband have experienced is known as Late Onset Neutropenia: healthunlocked.com/cllsuppo...

From the graph in the post above, you can see that this sudden drop in neutrophil counts can occur for up to a year after FCR treatment, with the likelihood higher if G-CSF shots like Neulasta have been needed to get you through FCR treatment. (The poster was a report from a small number of patients, so we don't know how representative this is for larger populations.)

Obviously, given the apparent significant risk of this developing post FCR treatment - roughly around 20% with no grade 3 to 4 neutropenia during treatment and around 40% when grade 3 to 4 neutropenia occurs during treatment, anyone having had FCR treatment (or treatment with other CD20 monoclonal antibodies such as Obinutuzumab/Gazyva), needs to be careful about infection control for a year after treatment ceases.

I've needed to live what's termed a 'Neutropenic Lifestyle" since my diagnosis nearly 9 years ago; my last neutrophil count was 0.41 but I have tested as low as 0.26. It's not easy but is doable. You just need to be very vigilant about avoiding people that are ill and taking precautions to avoid infections, including avoiding foods that are likely to have high amounts of bacteria: healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Neil

Lindyver profile image
Lindyver in reply to AussieNeil

Thank you so much Neil this has helped tremendously. This is such a wonderful board. I am so grateful for people who help out through experience. Linda

Jacksc06 profile image
Jacksc06

Hello. Welcome to the family. My treatment was B & R, I have catalogued my journey from start of treatment to present day. Please feel free to browse. Hope it helps.

SunnyCA profile image
SunnyCA

The same thing happened up me after chemo. It eventually resolved with shots. Avoid crowds and wash your hands a lot!

Lindyver profile image
Lindyver in reply to SunnyCA

Thank you for your help!

seoul profile image
seoul

Don't worry at all at this stage. It is normal. aplasia.

I finished FCR in 4 2014 and two months later my Leuco was 1.8 and Granulo 0.5, after three months 2.1 and 0.55. Afterwards they went up continuously, although it went up and down, but in normal range. After 6 months all blood counts were normal and it has been since, 3,5 y!

I guess you take some antibiotic for prophylaxis and take little care, not to get an infection,

until your helper T/cells are higher than 200 better 250. Try to get a t cell analysis to check different kind of t cell and b cells. Did you check your MRD status? If not, you should ask for.

Best regards

Seoul

Lindyver profile image
Lindyver in reply to seoul

Thank you! MRD is the bone Marrow biopsy? I had that and it is complete clean.

lankisterguy profile image
lankisterguyVolunteer in reply to Lindyver

The MRD test is a special test that can be done on a marrow sample or blood sample, but is not part of a standard Bone Marrow Biopsy.

If the MRD test was done the results would be expressed as a 0.0? % CLL cells in the Lymphs.

Len

MattGGibson profile image
MattGGibson

Really interesting - 7 weeks from last chemo, feeling great but tired - I need to remember to keep the hand washing - staying away from the ill people might be harder - there are 1500 students in my school!

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