Hello everybody . i have no 17p / 11q or 13 q deletions , but i am igVH unmutated , waiting for results on mutation of gen p53 in about two weeks.
WBC are in 130.000 ( always growing and more than doubling in the last 6 months ) and some lymnph nodes are close to bladder and maybe an urethra .
All my l other labs are quite good ( RBC ,plateleles ,inmunoglobulines , no sweat .
I have been on W&W for two years ,doing normal life .
My Dr told me about Imbruvica, she wants to treat me due to the high WBC and risk of lymph nodes .
She also talked about FCR but i understand that would not be the best choice . Any thought ?
I don´t know if my health insurance in Argentina will aprove it...in about to weeks i will have it clear .In the meanwhile will like to hear about people that experinced Imbruvica .
Thanks !!
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antonb
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Hi antonb-I to am unmutated. The CLL specialist told me chemo was not my best choice. I started Imbruvica/Ibrutinib 2 months ago. There have been a couple of small bumps in the road but I’m feeling so much better it’s worth it.
Hi anton. I have been on ibrutinib 10 months now. No problems with it. I am currently on a reduced dose of just 1 pill a day. But even on full dose (3 pills) I didn't have any significant problems. For me it's been a life-saver since I was very sick from CLL before starting, and the ibrutinib corrected my problems quite quickly. So it's been a positive experience in my case. Every body responds a little differently.
kim
antonb
I am generic 13Q so my choice currently is FCR. I have not had any treatment as of yet but given the choice I would take IB over FCR any day of the year. Not that FCR won't help me but the long term effects are serious (prone to other cancers, etc) which do not occur with IB.
Also with your strange unmutated/no standard chromosomes involved I would look at FCR highly suspiciously.
Scott
Hi antonb
I’m currently taking Ibrutinib as a first line therapy and I’m also unmutated. I was randomised it thankfully thru a trial between that and FCR and if I hadn’t of got it I’d probably of tried to locate another specialist team to get it as I definitely didn’t want the full chemo route.
There are a few cases of unmutated patients around the world and some on this site who have achieved remissions of up to two years or more but a majority only tend to get a few months to a year and with the long term possibility of damage caused by FCR the landscape of your disease can alter getting more aggressive and developing worse mutations.
Personally the only way I’d take FCR out of choice would be if I had the desired criteria being mutated and 13q as there is the possibility of a very long remission of up to 20 years or more.
The Ibrutinib has served me very well and all my levels are normal now after 22 months.
My doctor here has a preference to use B/R. It likely has a shorter remission time, but the therapy itself is not "ongoing for life". It gives time for more research. It is a question that I will ask the doctors at NIH about on my next visit. My labs seem quite similar to yours so far. Still in W&W, but not sure for how much longer.
I started Ibrutinib about 6 weeks ago after 8.5yr on w&w. Don't know my ivhg status but FISH came back with TP53 mutation so ruled out FCR. By 4wks my lymphocytes were back to where they were at diagnosis with all other blood stats within normal range, lymph nodes gone, feeling shed loads better and no significant side effects. Personally I believe Ibrutinib is much more preferable to FCR for all the reasons others have given. Good luck.
I too am unmutated and started ibrutinib in Oct 2016. It was rough at first while my body was discarding the CLL cells. At that time my WBC was 170,000. Experienced some bad joint pain so the dose was reduced to 2 pills, then down to one. My CT now shows no enlarged nodes or spleen and recently had my first lab in 8 years where all numbers were in normal range. For me it has been a life saver.
Lymph nodes melted away every quickly. Blood work is now trending into the normal range. HGB at 122 is the highest it has been in 10 years. It has not been an easy ride as I had some very significant side-effects at the start. I am now on 1 pill a day for the next 10 days as I am on antibiotics because of a nasty chest infection Hoping I can get back to full strength magic bullet..wonder drug!
Imbruvica was not too bad over all. I had some fatigue, stomach issues and tender finger tips. The issue with FCR is the possible permanent long term issues. Research it closely. Look up dr Furman and dr Kipps discussion on FCR or BR.
You asked about people’s experiences with Imbruvica (Ibrutinib) and I see that most of the responses you’ve had, are very positive about it. However, not everyone has good experiences.
When I started Imbruvica last autumn I assumed I'd be amongst the lucky majority of people who have no problems. But it didn't turn out that way. I've had a stream of difficult side effects, and not all of them have gone away with time.
You say you may not be able to get Imbruvica on your insurance in Argentina, so if that turns out to be the case, I hope you won't be too disappointed. I realise you are igVH unmutated so are less likely to get a good response from FCR, but some unmutated people DO get good responses from FCR. You may be one of those.
Hola Antonb. Veo que vivis en Argentina...yo tambien y tengo CLL hace 9 años . Mi primer tratamiento comenzo hace 14 meses con Ibrutinib. Mi prepaga me autorizo este remedio en primera linea porque tengo la deleccion del 17 p. Creo que el protocolo solo lo autoriza en estos casos o como tratamiento despues de haber fallado con otros. Ibrutinib es una buena droga . Tiene eefectos secundarios a veces leves a veces no tanto. Depende de cada uno. En mi caso tengo un evento cardiaco anterior al tratamiento , lo cual , seme hace mas dificil.
Ojala te aprueben esta droga , es efectiva , facil de tomar. Me alegra encontrar un compatriota en el grupo...aunque no me alegra que estes transcurriendo por esta enfermedad.
Hola espero que swiss lo autorice ¨de ser necesario¨ ...estoy cerca de ser tratado , pero por ahora tengo que volver a ver a la dra en mes y medio.... que prepaga tenes ?
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Hoping I can get back to full strength magic bullet..wonder drug!
Awful mouth sores, lip blister from Imbruvica
To start treatment or not? Please. 
How do they decide which treatment?
watch and wait (!?)
Newly diagnosed with CLL
