Update treatment

[Renefaassen]

it’s been about, half a year since i thought i had some options for the treatment i needed

I posted this dilemma here, and got a lot of responce to it. My thanks for this.

But unfortunately, there were no options for me, and the FCR was scheduled.

The first time, about two months ago, they gave me only the chemo pills, because the leukocyten were very high.

The rituximab was then taken along the next time.

After the first time, the leucocytes dropped from 260 to 8.6. The second time to 1,9.

They told me this last thursday, and also that they wait, starting the third time, because i had neutropenia.

Is this known to you, and what should i expext??

Thankss, René

[Renefaassen]

oke

Oke

[Renefaassen in reply to Renefaassen]

oke

Oke

[AussieNeil Administrator]

Hi René,

Neutropenia, low haemoglobin (hemoglobine) and low platelets (trombocyten) are common with all CLL treatments, particularly neutropenia. Your specialist should be well aware of this. The standard approach with FCR treatment and often with other treatments where infusions are used, is to first delay the next infusion by say a week, then if the neutrophil count is still too low, to boost it with occasional G-CSF (such as filgrastim, perfilgrastim, neulasta, neupogen, Zarxio) injections as needed into the skin over the abdomen. The injections use a very fine, fairly short needle and aren't that uncomfortable. I've given myself many of them. Sometimes you can experience a bone pain side effect, in which case an antihistamine and perhaps APAP/Panadol/Tylenol (acetaminophen) usually helps.

Sometimes the neutropenia can worsen with each infusion, but it usually improves as the FCR clears the CLL out of your bone marrow.

I notice that you also have another common (lower immunity related) blood count symptom from your CLL, low IgA, IgG and IgM (hypogammaglobulinemia). They will continue to be low during your treatment and probably won't improve after you have finished FCR. If your IgG falls under typically 4.0 and you have some very serious infections, you might qualify for IVIG, but your IgG is unlikely to drop that far during treatment.

One other thing to keep in mind for the year after your last rituximab infusion - you are at a higher risk of what's called Late Onset Neutropenia occurring. Your neutrophil count can recover nicely after you finish treatment, only to plunge without warning into neutropenia once more. So take excellent care over the next 18 or more months to reduce your risk of infection. I've provided tips on how to live with neutropenia in a section on this topic towards the end of this post: healthunlocked.com/cllsuppo...

Many thousands of people have done well on FCR over the last 20 years or so. For about 55% of those who had IGHV mutated CLL, it was the only treatment that they needed. Some early trial FCR patients are now entering their third decade of remission. If you do need treatment again later, you should be able to access one of the newer, targeted therapies.

Neil

[Renefaassen in reply to AussieNeil]

Thank you much for this detailed explanation Neil

[CoachVera55 in reply to AussieNeil]

Wow Third Decade sounds AMAZING 🤩 Thanks Neil you really put things in prospective!

[DavidDay22]

The trick that makes Rituximab is easier is to be properly premedicated, in my case it was the correct dosage of Solumedrol

[BobbyFour]

I found FCR much, much better than expected. a few days of being tired each month, but otherwise not bad!