I am 68 and untreated and been on W&W for 5 years. I have an enlarged lymph node on neck and one smaller to side of face. They don't hurt but are bothersome. My doctor has recommended chlorambucil and obinutuzumba as treatment for 6 months. Has anyone had experience with this combination?
Also considering clinical trials with ibrutinib+obintuzumab+venetoclax as one arm and second arm is ibrutinib+obintuzumab. Max time on these drugs is 2 years.
Any comments as to choosing one over the other.
Chlorambucil is the chemo backbone of this treatment, it is an old nitrogen mustard drug from the late 1960's. Coupled with the cutting edge monoclonal antibody Gazyva (obinutuzumab) it is a very good treatment, but if you want a non-chemo option, then perhaps either arm of your clinical trial would be a better alternative.
~chris
Thanks Cllcanada. Cancer runs in my family (father and mother) so heard one of the side effects is second cancer. Ugh!!
Yes, trying to make the best choice I can with the given information today. Thanks for your comments.
Hi Chris
Just wondering whether the genetic aberration (FISH & flow cytometry results) & mutational status play a part in choosing chemo or non chemo treatment?
Seok
(Replying while Chris is hopefully asleep). Most definitely genetic aberrations play a part in treatment type - which is why it is common outside of the USA to only do FISH testing prior to starting treatment and why it is repeated in the USA. The newer, more expensive non-chemo drugs are frequently only approved for patients for their first treatment if they have a 17p/p53 deletion, where chemo treatments generally work poorly or perhaps not at all.
Flow cytometry (in particular the CD38 and (if reported ZAP-70 results), can be used as a rough surrogate test for IGHV mutation status (which is difficult to do outside of specialist centres/laboratories), and those with this mutation may have a very long remission time, perhaps even be cured, from FCR treatment, as I recently covered in a reply to this post: healthunlocked.com/cllsuppo...
Neil
Thanks Neil for "digesting" the article for me; am I correct to interpret that remission will be short for unmutated IGHV if I go for chemo?
I've just started IB for > 2 weeks, diarrhea was over within days but muscle n bone aches seemed to be intensifying gradually. Bruises n petechia don't bother me.
Have been wondering whether there were instances of CLLers reverting to chemo after starting IB?
This paper Fludarabine, cyclophosphamide, and rituximab treatment achieves long-term disease-free survival in IGHV-mutated chronic lymphocytic leukemia, clearly shows via the Kaplan Meier curve in Figure 1, graph B, the difference in progression free survival for those with mutated vs unmutated IGHV: ncbi.nlm.nih.gov/pmc/articl...
As you can see, only about 25% of those that were unmutated had progression free survival beyond 7 years on FCR, compared to around 60% of those with a mutated status.
After Ibrutinib treatment stops working, the standard path is to try Idelalisib or venetoclax, but you aren't the only one asking about reverting to chemo. Offhand, I don't know of anyone who has done that.
Neil
Eoravillo
Greetings from India.
I am 66 dx 10 months ago. CLL expertise here is minimal and costs of ibrutinib etc are unaffordable.
I am banking on my luck, that like u and others in this forum, I will also have a long WnW!! I wish that I am in those 30%,who never need treatment.
I am not sure why wud u want to get into any treatment, if it is not essential as mandated in CLL manual?
om shanti
vinnet
You might becable to receive Obinutuzumab alone...ask doc.
Diagnosed 3 years when a lymph node in my neck grew suddenly large. It was removed and found only CLL cells in it, not large B cells. However, my oncologist started me on ibrutinib. Within a short time, all my blood count numbers came into the standard range and have been good for the last 16 months. I am currently off the Rx for 6 weeks due to an extensive rash. Will find out this week whether I go back on ibrutinib.
Hi eoravillo
I had this treatment last year,I managed 4 full cycles and started a 5th but they stopped that one before it finished as I was showing signs of a heart problem.
The results were very promising,or have been up to now,although my immune system was depleted and I am now on monthly IvIg.
I'm back on monthly visits with my haematologist now as she is concerned about markers in my bloods again.
I may just be unlucky,most people have had good remission from this treatment
regards
John
In the US doctors can prescribe obinutuzumab (aka Gazyva) without chlorambucil, and many do (mine did). The trial should have been Gazyva with or without chlorambucil, but was set up as chlorambucil with or without Gazyva to insure Gazyva approval. I wish doctors would join together to compare the results they are seeing, now that they aren't restricted by trial rules, using Gazyva alone or in combination with chlorambucil. There are a few studies using Gazyva in combination with other drugs.
Dear Pkenn,
How was your treatment with just Gazyva? What was your reason to not do the combo? Was it just as successful?
Yes, I was in the same condition as you were. I was treated two and half years ago with combination of Chlorambucil and obinutuzumab. For the treatment no major side effect, and two and half years later my lymphocite is within the normal range and very good. If that can make you more comfortable, I would not hesitate. Good luck with your treatment. Keep in mind it can vary from patient to patient.
Long time DX,SORT TIME TMT
Follow up to static dilemma 
CLL and abdominal pain or digestive issues
Remission should be the holy grail 
Side Effects of Bendamustine?
