For those who may have an interest, I started on the BOVEN clinical trial at Sloan Kettering. Trial aim is to achieve MRD with a long remission. People at Sloan are top notch so far. 37 patients total in the trial.
By background is diagnosed February 2016. On WW until now. 13q deleted, un-mutated. Had two incidents of AIHA and was treated with prednisone ( A devil drug in my opinion due to its side effects if taken longer term).
I started a month ago. Zanubrutinib tabs 160 mg BID with no negative reactions so far. This drug is not FDA approved except experimentally but shows promise as an ibrutinib “replacement”.
At the same time I initially did a ramp up over two days for the Obinutuzmab which was successful leading to 2 more infusions at a step up pace. Monthly infusions on going. So far so good, fingers crossed. I am now starting Cycle 2.
My nodes, biggest were in the groin area and armpits with smaller ones in the neck , are in effect gone. Spleen cannot be felt by the doctor. Fatigue is gone. So all good so far. Blood work looks good with elevated WBC and ALC first increasing and now falling back down, hopefully headed to a good place, an anticipated result I am told. Platelets above 100 which is good got me since those counts are usually low for me.
In a month I start Cycle 3 in which Venetoclax is introduced via a five week ramp-up from 20mg to 400mg. Depending on your risk level you are either hospitalized during the ramp ups or, hopefully, can do them as an out patient.
My biggest complaint so far has been the bone marrow biopsy. It was excruciatingly painful when it was done. My second one hopefully will not be as bad and they may give me something more to cut out the pain. I fear the next one! I’m not a coward, but.........!
That is my story so far. I will update periodically Incase of any interest.
Best to all in your CLL adventures.
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Awksom
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It apparently depends on your bone thickness. Many people have no problems. My first one was also done by a nurse practitioner. My bone type they said was “squashy” with age, I’m 70. The next one will be done by my doctor. Good luck.
Hi Awksom~ thank you so much for posting about your participation in this clinical trial. It's hard to keep up with all the trials that are now happening so your post is very helpful.
My husband has had 4 BMBs - and they have varied regarding how uncomfortable/painful they have been. However, regarding the last one he had, I constantly reminded the doctor up to when they were about to inject him that they needed to give him whatever it required so it wasn't painful. Whatever they gave him, worked.
BeckyLUSA recently posted her experience, where she actually describes what pain medication she was given for her BMB.
All the best to you on this trial - sounds like you're getting very good results. My husband was/is on the I/V fixed cohort and was hospitalized for the Venetoclax ramp up but it was a precautionary measure and he had no side effects.
Please continue to post about your experiences on the trial. It is very helpful.
Thank you for the feedback on your trial and for participating....its much easier said than done going on a trial I'm sure.
Wishing you the very best, it sounds like you are on the latest drug options, its awesome that you've already had a great response and with Venetoclax in a month it seems your CLL is going to be kicked into touch....your badass lymphocytes will be running scared and have nowhere to hide!!
Here's hoping for a very long remission ....please continue to keep us updated.
Thank you for your post and a huge thank you for participating. Hope your next BMB is much less painful. Wishing you all the best. Congratulations on your improvement!
Thanks for sharing your experience, I haven’t heard of any reactions to Venetoclax, apparently it’s extremely well tolerated. They have to ramp it up slowly because Of a rush of Tumor Lysosis , because it kills CLL cells very quickly
Yes you don’t want cancer cells to die off to quickly it raises your Uric acid levels and could effect your kidneys so it needs to be monitored the first 5 weeks
Sorry I missed you post earlier. See below my response re the Venetoclax. You are hospitalized during ramp up IF you are considered high risk (in general WBC higher than 25K and nodes bigger than 5cm ). The trial is at Sloan Kettering in NYC as the primary as well as Mass General in Boston.
Awksom, I may be considered a wimp, but I could not see myself relaxing enough to get the BMB. I told the Dr. who was ordering and scheduling the BMB, I needed a light anesethetic ---that was done and my only feeling around it was the pelvic area was sore for several days.
It doesn't make sense to me to go into a procedure that has to go into muscle and bone and expect a person to take it on the (rump) in this case with ease.
You are brave--you are in a trial for which we are all grateful. Thank you for the report.
Great trial, thank you for participating! Do you know if they have already accrued all 37 patients or do they still have space available? The status shows 'Recruiting' but hasn't been updated since July. clinicaltrials.gov/ct2/show...
As of last Friday, two days ago, they were full per my MD. Dont ask me how they come up with the number 37, it some sort of a actuarial number agreed to by the clinicians and the pharmas supplying the drugs.
BMB per my protocol is pre trial (done), next one pre Venetoclax in 4 weeks then on a 3 month basis it appears.
It’s good to hear your treatment and results so far are going in the right direction. I’ve no experience of prednisone but I do have experience if BMB! I have now had 3 and this most recent time I had hoped to have some kind of meds in addition to the local anaesthetic to help me through it, but I couldn’t. I found the whole experience very unpleasant and painful. Everyone’sexperience is very different but I’m with you. I also don’t feel I’m a coward but really I think additional drugs could be offered to help it be a more comfortable experience. Good luck with any future ones you have !
For what it’s worth, my MD is to do my next BMB himself and not an NP. He said he uses a drill and not just the needle. The drill method, apparently, is less painful and easier to extract. Also said he would give me something more than just the novocaine.
avzuclav Had a tele-video with my MD this morning, he's leading the trial at Sloan Kettering, and he is quite excited.
It looks like they are going to expand the BOVEN trial to an additional 13 CLL and 25 MCL patients. I was UMRD negative on my peripheral blood (FLOW) 5 weeks ago but unfortunately 0.48% on my BMB. Approximately 15-20 % patients show such discordant results, so I keep at it.
I also started and completed this same trial at MSK. Started in May 2019 and finished all treatment in April 2020 with uMRD in the blood and bone marrow. How are you feeling these days and have your counts continued to stay low/normal?
Thanks for reaching out. Are you with Dr. Z and out of NYC or Westchester ? I'm in Cycle 14 and if my final Peripheral Blood Flow (PBF) next month is still uMRD then I come off the trial. I was most recently 0.00% on PBF (last 3 times) and 0.0055% on latest BMB (0.012% being the current definition of uMRD under the BOVEN trial).
I am still quite fatigued, bruise easy at times etc. so I hope when I come off the trial that those issues go away. My numbers remain generally very good except with platelets being 110 or so.
FYI, my dosage of both Z and V was cut back by half a few months ago due to severe diarrhea. Despite the cut back PBF and BMB numbers improved. I'll post something more once I finish the trial.
Did you see an improvement in how you feel after completing the trial?
I also started a trial Sept 1, 2020, of I+O+V. I’m in 2nd cycle of I+O, will start 3rd cycle end of month with I + O+ V. I’m 11q del , unmutated, been W+W for last 5 years.
Wish you well on trial, keep in touch on you progress!
Best of luck. It seems that these "triplet" trials are showing very good results. See my reply to Eagles95 above. Most important advice you will hear is that during ramp up on Venetoclax DRINK lots of water, then drink some more! Keep us informed in how you are doing. Where is your trial located?
Yes...I’ve been a patient of Dr Z since 2016 when I was diagnosed and started W+W. If fact, I’m seeing Dr Z this morning for my 6 month “check up” (bloodwork and CT scan). I finished the trial in April and honestly felt no different after the trial than during the trial. That said, I had no side effects at all during the trial and maintained a very high quality of life. In my new post trial world, I give blood every 3 months, with scans every 6 months.
The trial has really been amazing and I was very happy to see that we got FDA approval to turn on Venetoclax and Zanubrutinib as need if it were to come back. Also, happy to hear that these immunotherapy agents are being used to combat COVID!
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