I am supposed to have finished my 4th round of FCR last week but the start of it was delayed for a week because my ANC was .5 (2-7.5 is normal). Blood was checked again last week and it actually dropped to .4. Here we are now two weeks after I was supposed to start round 4 and my neutrophils now read 0. I'm expecting a call from my specialist any time to discuss what to do about this but has anyone else experienced this? My red's are perfect and I feel 100%! I feel like I can run a marathon! Unfortunately the emotional side of all this is starting to get to me, too many unexpected delays in treatment.
Edit: My specialist put me on Filgrastim and is giving it two weeks for the neuts to come back up and we will revisit at that time.
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CallmeT
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Your main concern is infection of any kind, so stay safe as the Dr. gets back to you with what is next. lankisterguy has given you good information to read for more detail.
we spoke about this possible situation when you did your first post. It's not unusual for the neutrophils to struggle with FCR as the number of courses progresses. I see you've had three courses now and with your neutrophils at 0 I would expect your fourth to be deferred until they increase. It is possible to have injections (GCSF) to increase your neutrophils but sometimes it's only a temporary effect.
Your doctor will have to make a decision about your possible future courses of FCR and that may depend on how your neutrophils come back. It's an uncommon but unfortunate side effect of FCR that the bone marrow can be permanently damaged. Sometimes the recovery is just delayed but it can persist.
You would be wise to adopt all the precautions necessary to cope with severe neutropenia to protect yourself from infection including being careful about what you eat. AussieNeil had many years of coping with this and may have some advice for you.
I hope GCSF does the trick for you and you are able to continue your treatment.
I was tested after 3 rounds of FCR & was able to stop. I had reached remission. Maybe you can get tested & stop as well. You do not need all 6 rounds in some cases. 🙏💕
I was given a Nuelasta shot after each of my 6 months of chemo. I had Treanda Bendumstine. I go tomorrow for 9 month checkup and bloodwork. I hope that your doctor gets you back to your treatment soon and safely.🙏🙏🙏🙏
Yes, the uncertainty is wearing, but just take appropriate precautions and you'll get through this. I've summarised tips on managing neutropenia towards the end of this post:
Keep a reliable thermometer with you. I would recommend an oral thermometer or an infrared ear thermometer, not one that measures your forehead via infrared as I've found that method to be unreliable.
Don't forget to continue to take precautions against infections for a year after you finish FCR, more so if you are prescribed G-CSF injections, as that increases your risk of developing late onset neutropenia. (LON)
I averaged an absolute neutrophil count of 1. 0 in the decade prior to my first treatment, but only got to lows of around 0.2. I had a 1 in 3 chance of FCR on my clinical trial, but ended up on the AVO arm. I initially needed to continue daily G-CSF shots and I developed LoN earlier this year, but have since recovered (Obinutuzumab is a second generation version of Rituximab and LON is common with anti-CD20 monoclonal antibodies).
I hope you can resume treatment with the support of G-CSF and achieve a long remission. You are halfway there and may not need the remaining cycles.
Hi T - sorry to hear of your neutrophils difficulties. As others have said, it’s not unusual but I can imagine how frustrating it can be. Hang in there and know that we are sending positives thoughts your way. Please keep us posted if you are up to it.
Thanks all the good info and reassurance, it is appreciated. The doc put me on Filgrastim and is giving it two weeks for the ANC to come back up. Let's hope we can pick up the treatment regime again after this time. Cheers!
Exactly the same thing happened to me. I finished FCR nearly 2 years ago and had to have regular Zarzio injections to boost neutrophils. They aren't pleasant but did the job. Good luck to you. X
Hi there CallmeT - I can see that you are getting good advice from the community, Whilst you are waiting to hear from your Dr, you could do worse than google what you can/shouldn't eat if you are neutropenic. I've been there several times, and the whole object is to avoid infection. For example, unwashed/poorly washed salads and bought sandwiches can carry bacteria.....It won't last forever, but you need to be very careful until your numbers improve. Good luck - Handley
I have just had my last IV of Obutumazab and the venetoclax is due to go on til Jan or Feb next year ..my neuts fell off after the previous Ob infusion and I was given syringes to inject myself with once a week ..these seem to have elevated the neuts but I am to continue doing them for another two months to lift them a bit further ...maybe your consultant will recommend the same if its suitable for you..I havent had any side effects and as you say normal level red cells certainly lift the energy levels and the spirits keep on keeping on
Hi Rosetta my situation is identical to yours .my neuts fell off before cycle 5 and now having filgrastim until they improve. I am also on Venetoclax until early next year . A bit disappointed with the delays, but as long as it works then I'm happy.
I was in a clinical trial and had the same with FCR: neuts below 1 after the first round and at one stage down to 0.1. Also low platelets. These are par for the course.
Solutions? The study doctor reduced doses to 80 pct and delayed the second round by a week. I also had GCSF (Filgrastim) a few times. I completed the six rounds, but some folk reach uMRD on three or four. So there are your options.
My husband's neutrophils fell to 0 after his first infusion of B&R...he has struggled with this side effect with Ibrutinib and O &V.....so frustrating and scary....
I had this happen when I was on Rituxan + Imbruvica. Fortunately I went into remission. I also felt fine and continued to work out while my ANC was 0. It took my ANC months to recover. I was fortunate that this was during Covid so I wasn't leaving the house anyway. I'm still in remission, my ANC is normal and I've returned to the office after being fully vaccinated.
That us a typical treatment. I va had to take one everydey for a week. I have CLL and other problems. My opinion is learn to take it easy with the staff. A lot of yhis stuff is hiy or miss or in beween. Patience. Learn for yourself it makes easier yo accept.
I am on week 3 of the Venetoclax ramp up (towards 400mg daily) and my Neutrophils dropped to 0.6 prior to the last increase. The consultant is reluctant to proceed if the level is 0.5 or lower, so they went ahead. Blood test following this showed 0.4 but 1 shot of Filgrastim brought it back to 1.9 within 24 hours. I now have a supply of injectors to self-administer every 2 days for a week or so. I thought this might be useful having read some of the comments as a very rapid response (improvement) is possible.
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