Hello,
I’m appr. 6 weeks into the teatment.
- Is it normal to feel very tired and weak during treatment? I am at a point where even sittings with ‘m’y legs down is tiring. Cannot do normal House hold chores anymore.
- Also, how often should the blood be checked?
Your input is much appreciated.
Hi Mumu,
I presume you're following this schedule venclexta.com/previously-un... in which case you are now in the venetoclax ramp up period. You possibly shouldn't be feeling this tired, but without more information, it's hard to know, even before taking into account how different we all are. Two factors that could be contributing, before even considering how your body is reacting to the treatment drugs, are your tumour burden and your anaemia - if you have any.
1) You may have a high tumour burden (it would help knowing why your specialist started you on V+O), your body will be currently dealing with the reduction in that, which understandably involves a lot of work, breaking down and eliminating the deceased CLL cells and remodelling your nodes, spleen and bone marrow.
2) You may be anaemic, which is quite likely, given it's one trigger for starting treatment and a reasonably common initial response to treatment. Do you know your haemoglobin count?
You mentioned previously that your oncologist isn't a CLL specialist, but he should be well aware of the above.
You might also be fighting off opportunistic infections; the list of possible CLL/treatment causes is considerable, even before considering totally unrelated causes!
With respect to how often blood tests should be done, there's no one answer. It depends on your tumour burden, whether you are anaemic, thrombocytopenic (low platelets) or neutropenic or in danger of becoming so, etc. Importantly, you should have been assessed for Tumour Lysis Syndrome risk and your blood testing schedule adjusted accordingly, particularly during this ramp up phase.
I note that you've built up a fair history in your CLL journey, so It would help others help you better if you noted the essential information in your bio, such as what past treatments you've had and when as well as your current situation. This link takes you to your bio page:- healthunlocked.com/profile/...
I hope you soon feel more energetic,
Neil
Thank you so much for replying with so much detail. It is much appreciated.
After 2 1/2 years WW, I received 6 rounds of BR (ended 6/2014), then a) Ibrutinib (11/2018-5/2021) and then b) Alcalibrutinib (5/2021-11/2022). Both discontinued due to side effects (a) severe otostoxicity), b) GI Tract issues). The oncologist then put me on V+O in December. And yes, I am
Thanks for this additional information and for also including it in your bio. This really helps more experienced/knowledgeable members better help you.
Did you mean severe ototoxicity, hearing loss was the side effect from the ibrutinib and acalabrutinib?
With respect to my earlier reply, you would be most unlikely to be at risk of Tumour Lysis Syndrome, given your near continuity of treatment since November 2018. I'm not sure what you meant by your last sentence.
Do you know if you are anaemic? What's your most recent haemoglobin count? I'm also curious why your oncologist didn't give you a drug holiday; there must have been some sign of CLL progression presumably. Don't forget that because you live in the USA, you can get a free on line second opinion from CLL Society.
Neil
Hello Neil,
I cannot see my complete post above, so I’m not sure if it is there since I had included the haemoglobin level. I also cannot tell which sentence you refer to as last the last one you did not understand. - My Lymph nodes were very swollen before treatment got started, so swollen, that I had a hard time moving around. Before treatment started, I got some Steroids for relief. The scan at the emergency room in December also showed increases and substantial size. All the oncologist ever looked at were the blood values, and they apparently looked ok to him.
What is a “drug holiday”?
Thank you for the information on the second opinion.
Hello Neil,
There seems to be an issue with the formatting (cannot post the entire text). I now attached the message from 2 hours ago as a Screen Shot. Hope that’s ok.
Hi Mumu,
Your white blood count is not that high for someone starting treatment. We have members with counts 10 to 30 times higher, still in watch and wait.
(You should be monitoring the lymphocyte count, particularly when you have an infection, as more than half that WBC count of 20.4 could be neutrophils in such a situation).
Importantly, your tumour marker dropped, though I don't know what that test was. Do you have more information on that test?
"Drug holiday" is a colloquial term our community uses for a treatment break. That wouldn't have been possible in your case.
It's not unusual to experience infusion reactions, often sudden and severe, with your first obinutuzumab infusion. It happened to me and many others have shared similar experiences. Good news is that it is very rare to have them in the remaining infusions. Importantly, you are on your way to eliminating your CLL, at least for a while.
I suspect that your reply was truncated when you posted it into your reply, because this site can't handle colour fonts. While it's good practice to write out your posts and replies in a text editor, sticking to plain text works best.
Neil
Thank you, Neil.
The ‘tumor marker’ was the LDH measurement.
So, would you say the severe fatigue/weakness is normal under the circumstances or is there anything that can be done about it? I cannot just sit for another 4 1/2 months until the end of treatment, unable to do anything. I am loosing strength (muscle) and energy, loose appetite and weight.
Thank you.
I thought the tumour marker might have been LDH, but as the upper reference limit is around 250, wasn't certain.
The first few obinutuzumab infusions will have dealt with the bulk of your tumour burden, but you haven't yet reached the maximum venetoclax dose. Both are very effective drugs, particularly the venetoclax, killing CLL cells very rapidly compared to BTKi drugs, so your body is currently dealing with the CLL kill off as I mentioned in point (1) of my first reply to you. That's reflected in your high LDH measurement.
You might like to experiment with shifting when you take your venetoclax to the evening, so any tiredness from that coincides your normal sleeping cycle. Just shift it forward by about 4 to 6 hours each day until you reach your new time. (You are allowed up to 8 hours after your normal time - venclexta.com/previously-un... ) Your anaemia likely isn't severe enough to be responsible, unless it has worsened since your last blood test.
Hopefully you'll see a reduction to your tiredness not long after you get through your ramp up, when your LDH should also drop into the normal range. I got to the point of feeling most tired for a day or so after the infusions. As you hopefully get less tired, you might find that doing some exercise (I'd go for a walk), can help with the fatigue. Otherwise, talk to your specialist about reducing your venetoclax dose if no other cause can be found.
Neil
Thank you very much, Neil, also for bearing with me.
I will follow your suggestions. Makes now perfect sense to me which is already helpful. Also the more general remarks about how venetoclax works in comparison to BTKis are very helpful
All of this puts a more positive spin on “things”.
Again, all your help is much appreciated.
Thank you and Good Night!
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