Starting FCR for CLL

[Fbarcia]

Has anyone done an FCR treatment and if so how were the side effects? Any warnings about FCR that should steer away from going through with treatment?

[bantamsheffield]

Good luck with the FCR. If you are not aware of the "neutropenic diet' I would look it up and stick with it during the FCR. Also be highly aware of others around you with coughs and infections, you will be very susceptible at times. I would also monitor my temperature and if there are any problems then make contact with your GP or Care Team as a matter of urgency.

[ThreeWs]

Hi Fbarcia,

FCR is comprised of 2 chemo agents and 1 monoclonal antibody. This is a toxic brew primarily aimed at killing off fast growing cells both healthy and malignant. The 2 chemo agents F (Fludarabine) & C (Cyclophosphamide) both run risk of causing other cancers down the road as well as damaging the immune response that could lead to serious infections in the short term.

In spite of these downsides in certain truly indolent cases of CLL as mostly determined by a FISH (Fluorescence In Situ Hybridization) testng, where a patient is in actual need of treatment, FCR can produce a long remission and some speculate that the term "cure" might even apply.

No doctor can know enough at this time to tell an individual patient how FCR is going to work for them however an individual patient's profile can be compared to a statistical data base to IMPLY a hoped for outcome.

If your treating physician is recommending FCR without at least a FISH test you have no rationale to accept the toxicity of FCR. An example would be if you have the FISH test result of 17p or 11q deletions or Complex Karyotype (CK) which is three or more chromosomes with defects FCR will give you all of its toxicity without anything therapeutic other than a brief remission.

There are less toxic alternative therapies to explore but you must get a good molecular picture of what your CLL looks like before understanding what FCR or any other therapy has to offer. I am proof that a Kinase inhibitor like Ibrutinib can produce a durable controlled response to relapsed CLL for over 6 years and without the toxicity of chemo agents. Kinase inhibitors work well on difficult cases with high risk FISH test results.

May your path be well chosen!

WWW

[MattGGibson]

Hi there - I am a couple of days away from my 6th round of FCR since being diagnosed in February. I have a cycle every 4 weeks, with Rituximab at hospital and Cycolphosphamide and Fludarabin at home. I've found it debilitating in varying degrees but really only for a few days, typically Tuesday to Friday of the week immediately after the visit to hospital (I go on a Friday). Watch your temperature for the first two weeks or so and be careful what you eat. I work in a school so I've been having two weeks off each time, working for two weeks and then having two weeks off again. I wish you luck.

Matt

[casanova]

I can't add too much to the other respondents other than to ensure you drink lots of water to flush out the toxins. Not always easy but really essential. Good luck.

Maureen UK

[Oleboyredw-uk]

Good summaries already. I had six cycles if FCR in 2012. Had a bit of tiredness in some cycles but nothing too bad. Other than this it seemed to go pretty well.

I had a lot of meds to manage side effects, plus the Fludarabine and Cyclophosphomide to take daily. Drew myself up a simple plan for each 28 day cycle and ticked off as I took each pill daily. Just saves the brain for something more interesting.

Hope it goes well for you,

best, rob

[Hoffy]

FCR does long term damage to the bone marrow. Many doctors use target therapies , UC San Diego, City of Hope, Dr. Furman at Cornell. I am on Imbruvica plus Ventoclax and doing well so far. Have you got a 2nd opinion from a CLL Specialist?

Study all long term side effects before starting FCR.

[AussieNeil Administrator in reply to Hoffy]

Perhaps that could be better phrased to say FCR may cause long term damage to the bone marrow. We could also say Ibrutinib causes atrial fibrillation, (or more accurately it does that in about 10% of patients). I think it is fairer to say that all drugs used to treat CLL can cause some patients long term damage and if we wish to be informed patients, we should study the known side effects and the degree of risk of any drug available to us. Problem is - we've been studying FCR for around 15 years, so we know the long term effects. We don't yet know these for the newer, non-chemo drugs, which unlike 6 months and done FCR, require patients to generally be on them permanently.

Also please remember that for many of us, FCR or other chemo based treatments are the only choice available, perhaps unless as ThreeWs touched on above, we have genetic damage that makes FCR a bad choice AND that is recognised where we live and only then are alternatives available to us (which sadly isn't generally the case).

Neil

[Hoffy]

True. Side effects need to be studied from all drugs. Afib and bleeding is a risk with imbruvica.

What do you think about BR vs. FCR. UC San Diego has told me they use BR if someone wants traditional chemo.

[AussieNeil Administrator in reply to Hoffy]

BR is accepted as a gentler treatment than FCR which is more appropriate for those less fit and older than 65, based on the German CLL10 comparative study reported in 2014.