I've been on Venclexta 4.5 years and while my platelets are low (98-120) suddenly they are 34. I'm waiting for a lab re-do, but wondering if anyone else has ended up with a rapid drop (last labs 3+ months ago had platelets at 110.
Anyone experienced this? And if so, did a holidy correct the problem and were you able to return to the drug.
Thanks
Lynn
When you said 'did a holiday solve the problem' my mind immediately went to a beach holiday and then realised, of course, that you meant a Venetoclax holiday! 
There is a chance that you've developed immune thrombocytopenia if they've dropped very quickly but did your previous counts show a downward trend? If there was a downward trend then a holiday might be helpful.
There is also the possibility that there was a problem with the sample and there was a small clot in it. This is more likely if the venepunture was a difficult one, it took a long time to get the sample or it wasn't mixed adequately immediately after sampling.
I hope your doctor has arranged for a repeat test as soon as possible to confirm this result. and then decisions and a plan can be put in place.
Jackie
Lab was re-run and now 36 which is about the same. I'm waiting to hear from Dr. Coutre at Stanford, my hema/onc but will stop my magic Venclexta for the moment. Again, has anyone else fallen into this place while on V?
Platelets fell below 50 after one month on V, but have rebounded to 90 now, three months later. V is new to me and I also get glyzyva once a month. ‘ numbers are all at normal levels now and I am supposed to cease treatment at twelve months. I have not heard of someone on V for 4.5 years. No need to respond but I am curious as to the reason for 4.5 years?
I'm still on because it continues to work, and got it way before the trend to stop after a year. I've been MRD- since year 1. I also have NSCLC (non-small cell lung cancer) that has been quiet while I am on V, so that it might help my lung cancer as well is in the back of my mind. But it could be that it is time to leave V. I'm waiting to hear from my CLL expert at Stanford.
Heard from Stanford and I'll stop for a week and then get re-tested.
Is your Stanford person Stephen Coutre by any chance?
Yes .. Coutre is my doc.
My platelets crashed 6 years ago, and I was diagnosed ITP, a rare autoimmune complication to CLL. I have tried many different meds to keep them up or at least over 30, which is regarded ”safe” Now since February I am on Venetoclax, and my faint hope is that it will help me control my platelets eventually....So I got a little stunned to hear that in your case V might decrease platelets...Anyway I have noticed that when I have a virus infection, my platelets go down, fast. If I have a bacterial infection, they generally go way up! Sometimes to almost normal.
So if I have high CRP from a bacterial infection, or like right now, from a heart procedure, PCI, my platelets increase. If you are starting getting troubble with your platelets, it might be good to know these connections with virus and infection.
Best wishes, hope it is just a temporary dip in platelets!
Christina
Christina - Hope V works well for you, and thanks so much for passing on your knowledge, won the hard way. My platelets have almost always been below the 150 bottom of "normal range", before treatment, during Ibrutinib, and now Venclexta.
Can you share how your ITP was dx: by observation or were there particular tests done, such as BMB? I can see that I need to read up on ITP. I have had a nice quiet spell where my CLL behaved (Thank you Venclexta) and my lung cancer has been quiet.
Now it's time to head off to the virtual library and do some reading. I do remember hearing that platelets were "sticky" and clung to the walls of the tubes through which they traveled and that it was good to do some exercise before having a draw. I've been very inactive while sheltering these last months, but I don't think that explains the drop of almost 100 points from April.
thanks
Lynn
Hi Lynn!There are no specific tests of my knowledge that can really dx that you have ITP. I was so scared over my very low platelets since it is considered a bad sign for CLL. The fact that the debut of the low platelets was sudden, + me at that time had good markers for leucocytes meaning that the bone marrow was probably not packed,+ I responded fairly well first to treatment with prednisolone and later rituxan , all pointed towards ITP. So they decided it is ITP.
In ITP your body produces platelets but eat them too quickly in the inflammatory process. Platelet transfusion doesnt help more than momentarily (never had). This spring I had IVIG, helps for a couple of weeks, at least.
The other cause for low platelets can be too much CLL in the bone marrow, making no room for your body to produce any platelets. I had a couple of BMB done after the debut and I guess they saw not so much CLL at the time. They considered my CLL as quiet. But the ITP is tricky enough, and the platelets are very unpredictable.
Not fun to play with at times.
I read that exercise decreases the platelets for the moment, so I always took it easy in the morning, before blood tests...
I have also been gluten free, tried dairy free, a diet of low salicylates and you name it different tricks to try to make the inflammation behave. It is always better psycologically, to have some hope that you can do something on your own.
Hope that halting Venetoclax will do the trick for you!
Best wishes
Christina
And another thought based on Christina's input. I am HepB core antibody positive, meaning I had HepB at some point in my life (but I was unaware). I'm asking my doc for a lab request to run the HepB viral load test to see if something, like the mRNA vaccine Moderna, has re-activated my HepB. I suspect there were not any people like myself in the original clinical trials or those vaccines. The test would be a safety play.
Hi! Interesting thought that the vaccine could reactivate your HepB.....My Dr, after much consideration, decided to not let me be vaccinated, yet. My ITP has been hard to treat lately, and he thought it was risky to play with my immune system. Venetoclax is my hope for the big fix.....Before starting treatment with Venetoclax in February they took a lot of tests. I was surprisingly positive for antibodies to HepB too! They thought the antibodies ( not HepB) came with my recent immuneglobuline IVIGs I had to take (for almost zero platelets), in beginning of this year....Never had HepB of my knowledge and never had blood transfusion.
Oh, all these considerations!
Right now I am having a day by day beautiful summer week holiday!
Warm greetings and good luck
Christina
Just an update. My HepB is not active, so that was good news. I'm now off Venclexta while doing weekly labs. Two weeks of 34-36 so tomorrow will test again.
And now my platelets are down to 20. Last week they were 34. I confess that I'm scared. Hoping to hear from various docs soon.
My platelets are now 20, sigh. Anyone been that low: If so, what helped bring them back up? It is probably ITP but was hoping stopping Venclexta would help. Now my husband thinks he has seen that dark chocolate can cause lower platelets: I have three squares each night. 
Two IVIG infusions brought my platelets from 20 to 113, but a week later down to 99 and now 84.. More weekly labs next week.
Hi E-Lynn. As an update I’ve been on V for nine months now, and after seeing platelets drop below 50 a month or so free starting V, they have steadily climbed to 147. ‘ hoping you are seeing similar results. All the best.
Just joined the group so here we go with my question
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