My consultant said she preferred to not recommend Fludarabine because of it's high toxicity and resultant long term side effects and particularly because she considered me to be "young" and fit. I am 64. The treatment regime is 2 days per month for 6 months.
A trial called RIAltO comparing the use of Ofatumumab + Chlorambucil and Ofatumumab + Bendamustine was offered but I declined at this time. I was diagnosed in July 2013 and had a CT scan 3 weeks ago which showed my spleen to be bigger than my liver. Thus the beginning of treatment.
Maureen
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maureenmckeown
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Are you referring to bendamustine/rituxan BR , or bendamustine as a single agent, monotherapy?
I opted for FR over FCR and found it to be fairly easy to tolerate, however it never gave me a very deep remission and I became refractory to fludarabine in the process. At the time, bendamustine was not available first line for CLL in Canada...but it is now in some provinces.
Hi Maureen, I'm sorry to hear you need treatment soon, specially as you were only diagnosed a few months ago. It's a lot to get used to, when you were probably expecting several years of watch and wait.
Your post was specially interesting for me, because I too have been told I'll need treatment soon, and that the recommended treatment will be either Bendamustine with Rituxamab, or FCR (fludarabine + cyclophosphamide + rituximab). I've found it all rather confusing, and have tried to find out all the pros and cons of those two options, but different individuals react differently to things, and it's hard to weigh everything up. Did they not offer you the option of FCR? Interesting that you were told that Fludarabine was the more toxic thing to be avoided, yet Cllcanada didn't have the "C" in FCR, presumably for similar reasons, but he did have the Fludarabine and was OK with it.
Also interesting that you were offered a trial with Ofat umumab. From what I've read, Ofatumumab (what a name!) sounds good, but not so good in a trial where you wouldn't know what else you were getting. So I can understand your going for the Bendamustine with R. I expect I will do the same, so I'll be very interested to hear how you get on.
Nice to know your consultant called you "young" at 64. I have just had my 65th birthday, and still feel young in many ways. Not always, but I try to look on the bright side.
Anyway, I hope you''ll keep us all in touch. When does your treatment actually start?
Hi Maureen, Hi - I have been diagnosed with CLL since 2001. To some extent, because I have had good remissions, my CLL has been at the back of my mind
Treatment History
Chlorambucil in 2001 & 2003
Relapsed for several years until further treatment FCR in July 2010 – 6 No. FC Chemotherapy with 3 No. Rituximab – completion Jan 2011.
Early this year my consultant recommended further treatment and whilst I was offered three options - I chose B + R as part of a clinical trial with Idelasib / placebo.
I have now completed three rounds of treatment - as you say two consecutive days on a 28 day cycle. I found that I could just take days out from work to receive my treatment in the Day Care Unit - and then drive myself home ( What does also help is arranging the second treatments on a Friday - to give me the weekend to recover - but I never seem to need it! )
Today was my Consultant Appointment and he has remarked about my body's excellent response to three rounds of chemo treatment and CAL 101 / Placebo. ALSO we compared two CT Scans - one before treatment and the other two days ago - 7/10/13 - Consultant 's view (not a trained radiologist .) was that over 80% Lymph node reduction AND during my physical examination he could not feel any Lymph nodes to report.
Whilst it is a "double blind" clinical study - my doctor suspects that I have been receiving the Idelalisib tablets AND these are producing the good response!
Obviously everybody is unique - but being a "young" 60 - I find that the B + R over four hours (ish) is manageable - and to date I have not had any of the side effects!
If there is anything further you would like to know - just ask !
I think you have a very wise doc. You will see a lot of people make the statement that FCR is the "gold standard" for CLL. My doc would not use it on me either for the reasons you stated and also there are some drugs you will not be able to use in the future if you have used FCR. This is very important because I have 17p deletion, 13q and zap 70 positive. I have been treated three different times. My deletions make my cll nasty and it generally returns less than a year after treatment stops. This last time they used Treanda and Rituxan and I got 2 years of remission. I am back on watch and wait and numbers are growing again. Treanda and Rituxan was very effective and I did not have any major side effects.
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Richters update
CT scan of abdomen pelvis and chest is that a basis for starting treatment?
