FCR or BR?

[TOFK]

Hi all,

My dad is 69 years old and he has CLL. His blood values are oke but his lymphs are very big so he needs to be treated. His IGHV is unmutated and tp53 also unmutated. We visited two hospitals, one says FCR and the other one says BR. We really don’t know what to do. Any advice is welcome!

Thanks.

[Justasheet1]

As you can see, opinions vary. Not knowing your fathers specifics, make sure you are getting good advice. He must see a Cll specialist not just an oncologist or hematologist.

I would avoid chemo if possible and ask about Imbruvica or ibrutinib as it’s commonly called.

Jeff

[TOFK in reply to Justasheet1]

Hi Jeff,

Thanks for your reply. We are living in the Netherlands and we can’t get ibrutinib if we don’t participate to a study and since the dutch language of my dad is not good he can’t participate. So the first treatment is FCR or BR. Oh so hard to make decisions

[GMa27]

Mutated is usually FCR 66 years old and younger not unmutated. I had FCR 3 cycles and reached remission. 13 q mutated 64. Very uneventful. Port was a huge help. Some on our site have had BR with great success.

I didn't want to take a pill every day since I had a choice. Ibrutinib is a daily pill and very successful with most...there are side effects. Most tolerate it. Very expensive drug. If ur insurance does not cover there are organizations that can help.

CLL expert is important to have. Second opinions !

Are you in the USA? Lots of experts to choose from. 💕

[TOFK in reply to GMa27]

Thanks for your reply. We are living in the Netherlands. He is unmutated and we are making huge concern about that. Very hard time.

[GMa27 in reply to TOFK]

Sounds like he is candidate for BR for his markers. Can u get a third opinion?

If he gets BR make sure Rituxin is administered very slowly 5-7 hrs. Port saves veins and keeps hands free. 💕

[TOFK in reply to GMa27]

You’re right. I am afraid that BR is less strong then FCR and that the disease is coming back very soon. Or am I thinking wrong? I can maybe ask for a third opinion. In Amsterdam, there are cll specialists.

[GMa27 in reply to TOFK]

No it's not like that. It's not one is stronger or better. Each deletion and mutation status is different. Your choice of treatment depends on the markers. A simple example is how to treat a cold compared to a stomach virus. You do not treat them the same, right? Same with CLL....I would not be offered BR. It would not work on me.

The R is the same drug... immunotherapy Rituxin. I had it administered slowly. Body tolerates it better.

BR and FCR are not usually offered to the same person. FCR or Ibrutinib is possible. Or BR or Ibrutinib. Does that help?

So the concern is that for your Dad he was offered 2 completely different chemos. Of course out of USA things are different. For example some countries FCR the FC are pills. In USA they are IV chemo.

[TOFK in reply to GMa27]

Thank you very much for your clear explanation.

[AdrianUK in reply to TOFK]

I would go get that opinion from a CLL specialist and see if you can get him into a trial after all perhaps? Interested that you say he doesn’t speak great Dutch was he born elsewhere in Europe might he be able to move to a country that might have other options and still be entitled to health care?

[TOFK in reply to AdrianUK]

Thanks adrian! He is born in iraq. I will go to the CLL specialists in Amsterdam (prof. Arnon Kater). Lets see what he says.

[AdrianUK in reply to TOFK]

Sounds good. Maybe a crash course in Dutch so he can do a study??

[schmitthj007]

Hi TOFK

Although not knowing the specific markers of your dad FCR does not work as well in unmutated patients. Furthermore it is recommended in patients younger than 65. Not far from the Netherlands the study center coordinating The CLL13 study is located (university Cologne Germany). They are still enrolling and centers all over Europe are participating. I wonder if there is a center close by where you live. This would give him a chance to get one of the newer medication. At his age if he were randomized to chemo he would get BR and not FCR.

[TOFK in reply to schmitthj007]

Hi,

Thanks for your reply. I will try a CLL specialist in Amsterdam. Do you think unmutated CLL is very bad or are there good medicines to life long even with unmutated CLL?

[schmitthj007 in reply to TOFK]

Prognosis depends on many markers but truly everyone is different. I experienced this myself. My sister in law has the same markers I have and was watch and wait for 30 years while I needed therapy after 4 years. Mutated patients with low risk genetic mutations respond much better to FCR and in general and can achieve long term remission and some of them might be even considered cured. Unmutated patients in general do not respond to FCR as well. Again everyone is different. The biggest progress in the last couple of years has been made in the patient group that is considered high risk with the newer medication being a true blessing.

[TOFK in reply to schmitthj007]

You’re totally right. Thank you very much!