I started V& O in the Royal Marsden, London back in June, and the first few days which I spent as an inpatient were pretty tough. I have had about 4 O infusions and six weeks of the V but the V has now been suspended (about 10-14 days ago) because of low platelets (last at 35-have been as low as 14 after I was an inpatient). I am going back to the Marsden on the 26th for a review.
The treatment has been very successful in some respects-Lymphocytes now hovering about 1, and I am no longer anaemic. My spleen though is still enlarged (6 inches below ribcage) but has reduced substantially.
I was feeling very optimistic about the treatment but now have come back to earth with a bump. I would, if the choice was open to me, quite like to discontinue the O infusions as it seems that these are having the most destructive effect on my platelets, but resume the V as soon as possible maybe on a low dose intially. Clearly, I need to discuss this on the 26th. But I am very worried (perhaps prematurely) that I am going to end up having to abandon V & O altogether. I am afraid of being transferred to a BTK inhibitor because a cardiologist has warned me that because of the structure of my heart (Atrial enlargement) I would be at significant risk of Atrial Fibrillation even on Acalabrutinib. Possibly the answer might be (if I actually did have to abandon V & O) transferring to V and Rituximab on the basis that Rituximab should be less potent than Obinutuzumab. Clearly, I need to raise all these other points as well with my consultant.
Sorry to be so pessimistic particularly in the preceding paragraph. Probably I am thinking too far ahead in a pessimistic way. I suppose I made this post partly to show that sometimes V & O can be a problematic treatment even after the first infusion.
Any comments on any aspect whatsoever welcome. I perhaps should say that I have been referred to the Psychological Support Team
Antony
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ornstin
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It appears you have a good basis for a in depth discussion with your medical team. I suggest you write out the points and be prepared to be a full participant in the decision.
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I was on Venetoclax for 6 years with wonderful results, and opted to ramp up V without Obinutuzumab or Rituxan.
I recall some trial results that showed a very minor difference between V alone and V + O and I suspect the O is used to reduce the risk of TLS (Tumor Lysis Syndrome) so as you imply your need for the O may be past, and moving ahead with V only seems logical.
I think it's possible they will modify the induction, instead of abandon it. Perhaps after your platelets come up a bit, you can do a lower dose venetoclax, or at least a longer period in between dose increases. There are a number of people here on less than the full dose of V doing very well. They had problems during ramp up, and their docs just held the dose at some point that worked without the adverse reactions. With your cardiac concerns, it seems reasonable to modify the V&O protocol to find one that works well for you without awful side effects, instead of jumping to a BTKi.
I am on a V monotherapy. My doc wanted V&O but I refused the O, so solo V it is. I didn't want V&R.
Since R can help platelets, V&R may be discussed. But R can also have its own set of side effects.
I don't think there is a "right" answer overall, every patient is unique. Some people take longer for their spleen to go down, some people take longer for platelets to recover during induction. Some never get through induction up to full 400mg Venclexta. Some have stopped the O after a few infusions, others have finished them.
It must be hard to have this uncertainty going on! But I think you will get through it. Fingers crossed for smooth sailing!
Many thanks for your reply .It's given me plenty to think about and thank you for your encouragement!
I've tried to cover some a few additional issues in my reply to Roger Pinner (see below).
I would just add that what makes me additionally apprehensive about the platelets is that I have a history of low platelets-I was diagnosed with CLL in the year 2000. Platelets were then 130 and they have been lower than that ever since then usually much lower. So I am concerned about the potential for them to recover. And I am very wary of continuing with O on any dosage as even after the first 100 mg infusion the count reduced from 100 to 59. Antony
My platelets have hovered around 100K since this disease. So running at 100, or lower, is not necessarily a problem They dipped to 80 during ramp up. As long as you aren't bleeding/oozing, like when brushing teeth or when you get a small cut, and aren't getting painful bruising, "running low" in itself generally isn't a problem. It's not so much the absolute number, but what may occur when platelet numbers are low. If you have concerns about your low numbers might cause an internal bleeding, consider getting some fecal occult blood tests to do every few months, for peace of mind. They are easy to do. But if you aren't symptomatic, a dip from the low norm of 150 shouldn't be a great concern, unless there is a reason for you specifically, like other disease states affected by low platelets, or if you are having symptoms.
I dont think I am seriously symptomatic although my lower legs and feet seem to have developed a large number of red and brown spots-presumably petechiae. However, my platelets have been well below 50 on several occasions since starting the treatment. This in itself does seem of concern to the team treating me, who told me that restarting V (which I requested) would be against the treatment "protocols". Antony
Platelets below 50, or 50,000? Grade 4 (the most severe) thrombocytopenia is defined as less than 25,000. If your numbers are 50, you have a severely low level. It's recommended they come back to baseline/Grade 1 before restarting the drug.
The package insert in the US doesn't state an absolute contraindication with repeat Level 4 toxicities, but does say to consider stopping the drug if below a certain threshold (see picture). The NHS may be using this recommendation in their treatment protocols. But the O can also cause low platelets! So I think your rationale of stopping the O then restarting the V at a later date is not unreasonable. IMO a big question would be, do you have large internal nodes besides spleen thus still at risk for TLS when restarting V.
The level is [below] 50,000- sorry for the inaccuracy!. But the Thrombocytopenia has been in the grade 4 toxicity level on a couple of occasions recently-I was specifically told this at the last appointment.
Thank you for going to the trouble to identify the protocol-I'm sure its relevant in the UK as well.
It seems the O is being mostly responsible for the platelet decline in my case but it may be the case that the V is playing a part too. Something I need to discuss with my consultant. I don't think I have enlarged nodes, but my spleen is still v enlarged.
Thank you once again for your interest and input. Antony
I mention the spleen thing, because my specialist told me he likes to hospitalize anyone with an enlarged spleen, regardless of WBC or other internal node size. So I am wondering if this is something other specialists are thinking too. And it's not going to be in an "official package insert" because practitioners didn't realize the significance until the drug got wider use. Like, they are discussing it in the journals and conferences but nothing "official" will be paid for, to edit the package insert official recommendation.
Antony, I have written a few times on this site about my experience with Venetoclax + Rituximab (rather than Obinutuzumab). I'm at UCLH for CLL treatment, but the Marsden for monitoring a hopefully treated melanoma, and the two hospitals talk to each other.
I dropped the Rituximab after one infusion, partly for a similar reason to yours, and partly because I didn't want to keep going up to a hospital during the Covid surges. But also it seemed to me that there was no firm evidence that the monoclonal antibody (R or O), significantly improves the outcome of the venetoclax treatment. Only time will tell of course.
Meanwhile, Len's advice, "It appears you have a good basis for a in depth discussion with your medical team. I suggest you write out the points and be prepared to be a full participant in the decision", seems the most sensible.
Thats most interesting. I have to say I had major misgivings about going ahead with my last Obinutuzumab infusion (the sixth one) and I wish I had voiced them at the time.
I went to UCLH last year for a second opinion re starting treatment. I saw Dr Parag Jasani. My visit made quite an impression on me (entirely favourable!)
As regards the efficacy of adding O or R to Venetoclax:. I remember reading an interview with an American Haematologist (I think it might have been Richard Furman) where he stated that it was the Venetoclax that provided most of the benefit. However, he didn't say that only the Venetoclax provided benefit. The impression I got ( when I looked at some stats some time ago) is that a monoclonal antibody might well provide some benefit when added to V., the extent of which is uncertain.
Anthony, Parag Jasani is my consultant at UCLH, has been for years, and I both like and trust him.
Richard Furman is the oft quoted authority on this conundrum. It's still an unknown because there hasn't been a trial comparing V alone versus V + a mab. We will have to wait for real world data.
Another downside however of both R and O (too late for both of us right now having had them), is that they render the Covid vaccines ineffective. Maybe the flu jab too. It's a lottery but it's better to have the choice than not to have any choice. We're very lucky really in this respect.
hi!! Small point but I had a dip in platelets at one point and they gave me a shot so it didn’t dip lower . I can check my notes if you need name . I recall not liking the shot…. Some aches but it did work .
I'd appreciate it if you checked your notes to see if it was your neutrophils that were dropping and not your platelets? They might have given you a G-CSF injection of neupogen, neulasta, filgrastim, per filgrastim or similar. These can cause bone pain, which can be eased by Tylenol/Panadol/APAP.
There are platelet boosting drugs, but falling platelet counts are more quickly countered by platelet transfusions, which is why I ask.
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