My Ibrutrinib/Venetoclax trial was supposed to end in November I’m not complaining I am just a bit disappointed
as once I had a mandatory 2 or 3 week
I/V vacation... it was so glorious that I guess I was mentally counting down the days
TODAY I-was told this trial will go four months past that November date Has anyone ever had their trial extended?
Catnap7
Hi Catnap
Is the extension due to the fact you haven’t achieved MRD- or is everyone on the trial being extended? Either way I can understand your disappointment but you are on an excellent trial that hopefully will give you a deep and long remission.
Best
Mark
Thanks Mark ... no I reached MRD negative at end of 12 months. I am pretty sure they extended everyone so that is why I was wondering about it
Catnap7
Interesting. Maybe with additional experience the trial doctors have determined that patients would benefit from a slightly longer course of treatment? Hopefully someone here has an answer? It is awesome to hear you reached MRD- in a year!
Best,
Mark
I have heard that the I/V trial I am in was just recently given permission to extend from two years to three for patients who didn't reach UMRD in two years.
john
it probably has to do with 4 months of coronavirus. In a trial do you actually meet the other patients? I have no idea how one works. Were some of your meetings postponed. Maybe others in the trial had problems getting their labs done.
Hi No I’ve never met anyone in the trial
Wish that was possible
So glad for Healthunlocked or I would’ve
had anyone to talk to or help me out on solving some of my worst problems
I have only been doing virtual doctor appointments since Covid started and they mail my meds. Getting labs is always easy
I asked my doctor if I could do my last BMB virtual .. He didn’t get it
Catnap7
Hi Catnap7,
I’m on the same trial and reached MRD in the peripheral blood at about 12 months and after my bone marrow test at 18 months was told I was in complete remission. I was expecting to stop medication after 24 months but was recently told they were going to extend it to 36 months.
I was similarly disappointed!
Trish
Why don’t you get off the trial? There seems little benefit in continuing when the goal is already reached. I would ask if there is a chance that you will build resistance to venetoclax by continuing and it may not be effective when you need it three to five years down the road.
Hi. Oh I would never drop out of the trial I am blessed to be in it I DO believe they know far more than I do Maybe they feel they need more time to get me a longer remission... my trial is for relapsers... B and R hardly worked at all for me. 17 p
Catnap7
Hi Catnap 7,
No, i didn’t to be honest. It was via a telephone appointment and I did wonder if the consultant got it wrong. I will see him face to face next time and find out why. I certainly haven’t relapsed as far as I know.
Like you though, I feel very blessed to have been lucky enough to be accepted on the trial and especially to have drawn that particular arm of the trial so I shall certainly not withdraw from the trial.
Trish
It sounds like the study coordinators have decided to extend treatment duration across the board, rather than just picking on you. In any case, one assumes they have good medical reasons, and your consultant should be able to explain.
Although mine was first line treatment, given the choice I would have plumped for the I+V combo.
I was on an I plus V trial in 2018. I reached MRD negative after 15 months(Yay!) and was expected to get randomized to either placebo or ibrutinib. I did not want Ibrutinib and I was already MRD negative. The risk of continuing on Ibrutinib for several years with no apparent benefit convinced me to get off trial and I’m glad I did. I’ve had no remission. At the time my doctor was ambivalent about my decision but later said I did the right thing. Remember the doctors are beholden to the pharma companies (read the doctors disclosures if you don’t believe this). The pharma companies want to sell more drugs and three years is better than one year. You should understand the benefit of continuing and weigh that against the down side (is there a risk of becoming refractory to the drug, continued side effects, etc. ) Look our for your self and your best interests. You can get these drugs outside of trials now (in US) if you need them later.
Hi sorry for late reply. I would love a little sub group of people on Flair / I& V trial! When I was being ramped up on V I asked how the only other patient they had started on the I& V arm of the trial was doing and they were inevitably not keen to divulge, let alone let us communicate and compare notes.
I was disappointed to hear about the possible extension of the drugs after reaching MRD. I have just had my bone marrow biopsy and have the scan and rest of my 9 month check up at end of this month. I expect MRD as my blood tests have been good. However I feel totally exhausted most of the time and would love to know if being free of the drugs might give me a new lease of life. I have ongoing tummy upsets, crumbling finger nails, a weird problem with kind of in growing eye lashes, neuropathy-like symptoms in my feet but most other side effects have subsided. I have been on anti pneumonia anti biotics since starting treatment. Do you know if tjese are standard on the trial?
It is a hard decision to opt out of the trial when the drugs are doing the main job and I do not want to risk getting sick again by throwing it in with the trial in order to get off the drugs but the tiredness is really affecting my quality of life right now. How are you feeling?
In terms of a possible reason and it’s only a possible one. The thought is that if you get to MRDU there may still be a few more cells left. If you could get rid of those cells then you’d be cured. If you could get rid of almost all of those cells then you are probably effectively cured as it will probably take longer than your natural life for them to grow back. So the idea —-might—- have been to give people that bit longer to hopefully increase their chance of having such a long remission we might as well call it a cure. Certainly for example in flair there was the idea that you’d kee taking the drug for as long as it took you to get to MRDU after you got there. Then stop. That is one approach some suggest. But this is just speculation and you should call your doctor and find out the reason in this instance.
Hi Chillsome
I am not on Flair trial but one for relapsers in USA. Yes ... when I would ask my trial nurse if other people had any of my side effects she always answered she hadn’t heard of it. Obviously they don’t want to divulge. They have never prescribed me any antibiotics or anti pneumonia drugs
I take other meds to keep the mouth sores away Most of my side effects have left me
I think I would be tired more if I didn’t push myself to keep moving all the time
I get up at 5AM and by noon I’m pretty tired so I treat myself to a 1 hr nap. When I wake up I force myself to keep going with whatever
Since Covid I’m more tired than before
I think it’s a little depression
My numbers aren’t so great I have 17 p so best I don’t try to cut my treatment short
BUT
I will let you know being off I and V for a few weeks was HEAVEN. !!!!!! Catnap7
Thank you so much for replying. I get up around 6a.m. to feed and clean out various animals, primarily horses. My day remains pretty active, or at least it always did but recently I have even struggled to make myself ride the horses which is normally my most favourite thing to do. It may indeed be depression or lack of pressure during lockdown as I normally run on a lot of adrenalin. I am planning a stricter schedule so I try to do more early morning before the day drags me down as it goes on. It is great to hear you felt so good off the drugs. That thought will spur me on whatever timescale I am given so thank you for letting me in on that cheerful news. I think I will query the need for ongoing anti biotics as I feel they could be causing the stomach problems although, again, not if they feel the pneumonia is a real risk. Great to "chat" and I am so grateful for your news although not that you have 17p. I wish you the very best.
Just wondered do you take your meds at night or morning? In the beginning I had nausea and some tiredness. I was taking my drugs in the morning. Then I started taking them at night and I obviously was sleeping through these side effects
My day was much better at that point
Are you in USA?
I am a Pilates and Gyrotonic trainer
I am not able to see a full load of clients coming and going all day anymore
But ... I still give sessions (not so much now because of Covid) but I workout everyday, swim and fast walk 4 miles I force myself to do it. Like you .. you love riding but you have to push yourself. I swear the absence of meds for 2 or 3 weeks made me feel like the cow who jumped over the moon
Hang in there... it was the greatest I and V vacation I am hoping for a long remission even with my 17p. That’s why I am staying on I and V until the trial is over
If you should change your meds time let me know how it works for you
Take care Catnap7 🐈
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