Should I join STATIC trial after being on Ibrutinib for almost 6 years. I did talk to my consultant. She tells me that in UK you can go off Ibrutinib no more than 6 weeks without joining the trial. Should then CLL come back after 6 weeks, NICE will not permit you to go back on Ibrutinib. You will need to start on some other treatment. However, if I do join the trial you may be lucky to be on the intermittent team. However, if you are chosen on the continuous team, you will still have the chance to refuse the trial and come back continuing on your regular course.
What to do? I have postponed my decision for now, and I am continuing on my regular course of 140mg a day until further decision.
If acceptable, after 2 months of treatment, I would like to stop the one tablet a day for the last month of the three month treatment and see if it makes any difference. If acceptable.
Any suggestions? Please. My blood numbers are very good. But I feel tired, depressed? and have continjuous muscle weekness and back ache. And recentlhy feel out of breath when walking fast. Of coiurse I need to mention that I am 81.5, but don't feel it. But it is slowly creaping at on me.
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jkl700
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Dear jkl700, I don't have any advice, except to focus on the fact that your blood numbers are very good. Do you know why depression is following you around? How are your other blood tests (Vitamin D, anemia markers)? I also get winded more easily, but I have become anemic. Another question: Have you had a sleep study? Any chance that you have sleep apnea or require a C-pap machine? Are there any hobbies or interests that would help lift your mood? With regard to entering a trial and changing medication, I don't have any experience or expertise to comment.
thanks. here are my numbers again, I am passing them around.Vit D and B are ok. I don't get enough sleep due to my prostate, getting up few times a night and am on medication for it but it surely harms your sex life, so now I am taking it intermittently.
Hi I am in the same position as you and have signed up to Static. My reasons are:
1 Your first treatment, I am told is always the one that gives you the longest remission.
2 I am informed that if I go onto NHS waiting list and need to be treated again with ibrutinib I won’t get it until my disease progresses. If I am on Static I will get on initial signs blood etc are regressing.
3 I like and trust my haematologist and his team and prefer to stick with them.
4 I like to be in a trial as you are well cared for.
5 I am told it is the best way forward for me clinically.
6 Going on any trial adds to our knowledge and understanding of our condition and how treatments work best for us.
I hope this helps?
You need to discuss your own clinical position with your haematologist and ask what he/her feel is best for your clinical needs.
Thanks. I rather stop the Ibrutinib, but won't have a choice when on trial. I am currently sticking with the old plan 140 mg/day. here are my blood numbers WBC 5.7 Haemoglobin 126 Platelet 111 Lymphocytes 1.9 Neutrophil 3.4 GFR 55
TL:DR uCLL that don't reach uMRD4 on V+I should stay on BTKi. mCLL have good results on short duration treatment without need to reach uMRD4, stopping is a reasonable choice.
Doesn't seem much point to testing for MRD after 3 years on FLAIR trial as anyone that wasn't uMRD4 at that time would be on the drugs until the end at 6 years. When did they last test you for MRD?
Do you know your IgHV mutation status, are you mCLL or uCLL?
mCLL on FLAIR show a resistance to reaching the stopping point of uMRD4. Short duration trial CAPTIVATE FD and GLOW V+I for 60 weeks have shown that mCLL patients have a long drug free remission, GLOW found this was regardless of being uMRD4. FLAIR for mCLL was/is effectively "maintenance" treatment for a median of 4 years and mean of 3.9 years (50% were still on drugs at cutoff for results reporting), shows no appreciable benefit over short duration V+I for the high cost (+30% on BTKi monotherapy, 330% of 60 week V+I) and may be slightly worse due to AE's from extended time on Ibrutinib.
uCLL reach uMRD4 more readily but progress faster. GLOW found those that don't reach uMRD4 have a shorter remission and should stay on treatment. FLAIR median time on treatment was 2 years and mean was 2.9 years (similar cost at list prices to a 6 year BTKi monotherapy, 250% of 60 week V+I). Results were very significantly better for FLAIR than 60 week V+I.
I take it your not in the 17p/TP53 arm? Stay on the drugs.
wow...many thanks, these terms are new to me. looked up MRD. No I have not been tested on that. nore do I know about m or u CLL. But I will discuss it with my consultant for sure. I will also go into my old notes and see re 17p/TP53. Here are some of my numbers. Most recent Feb 7, 2024
WBC 5.7 Haemoglobin 126 Platelet 111 Lymphocytes 1.9 Neutrophil 3.4 GFR 55 Many thanks, Please tell me more
You have been tested for MRD every three months. As you are still on treatment at 6 years you weren't at uMRD4 by 3 years but may have reached it since.
85% of uCLL stopped before 6 years, 50% mCLL.
12months 47.5% uMRD4 - stopped at 2 years.
24mo 70.5% uMRD4 - stopped at 3 (18mo to uMRD4) or 4 years (24mo to uMRD4)
36mo 83.2% uMRD4 - some may have stopped at 5 years (30mo uMRD4), everyone reaching uMRD4 after 30 months continued on treatment for full 6 years.
48mo 89.2% uMRD4
60mo 92.7% uMRD4
There has been a further 12 months on treatment, you may be among those that have reached uMRD4 after the last stopping test point at 30 months.
There was a separate arm for TP53 so you would know if you were on that and it's only been running 3 years as it started Q1 2021.
after being on Ibrutinib c. 5 yrs I became tired of the intermittent side effect of upset stomach and read some papers on trials held on reduced dosages. The results of these trials in the USA were positive, so I ask my Consultant whether I could reduce my dosage………I entered a test with her and eventually settled on c. 1280 mgs per week. I have been on this reduced dosage for 2 yrs and my results are good . Jhs
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