massive fatigue with ventoclax

[lisakc1]

My husband’s specialist told him that fatigue is a side effect of his venetoclax medication, he is still ramping up, will get to 200 mg next week. Two hour naps, after being up 3 or 4 hours is his new normal, just wondering if anyone else has experienced this? Many thanks to all!

[lankisterguy Volunteer]

Hi lisakc1,

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It's tough to deal with all the side effects of CLL and the targeted drugs like Venetoclax. Fatigue was the bane of my existence during progression and the first weeks of treatments.

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It sometimes took me 6 weeks or more to feel better, but like most things with CLL and treatment we have wildly varying reactions and experiences. I assumed that it took that long for the treatment to clear the CLL cells out of my bone marrow and for the marrow to recover completely so it was making a balanced set of new red and white cells.

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I suggest that you and your husband keep reporting the fatigue in specific detail during each appointment with the specialist, and if it does not decline after a few weeks on full dose, then you may need to push for a more thorough investigation.

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I recently discussed fatigue and dizziness on standing with my GP (he works closely with my CLL expert doctor) and he admitted that those two symptoms were his least favorite to address, since they had so many possible causes and were some of the toughest things for him to diagnose the cause.

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I hope your husband improves over the next 4-6 weeks and he recovers his full energy and lifestyle.

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Len

[lisakc1 in reply to lankisterguy]

This was a constant problem before treatment and we were hoping it would get better with treatment... will follow your lead! Thank you so much!

[Gman2 in reply to lankisterguy]

Hi Len, I am in the process of completing 1 year of the O and V therapy. My fatigue has improved but for about the past month or so I have started to experience dizziness when I get up or lay down but it goes away after about 15 seconds. I also have a little shortness of breath as well as some arthritic type of stiffness and pain in the pinky and ring fingers in both hands although the pain is most prominent in my left hand. Is this common? Have you encountered this? Thanks, Gerry

[lankisterguy Volunteer in reply to Gman2]

Hi Gman2,

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I have a very similar intermittent issue of dizziness, especially when I bend over to work on something at ankle level (gardening, cleaning the floor, etc.), and sometimes when I stand up from sitting in my recliner chair. I had some breathlessness in the last two weeks after rushing up one flight of stairs, but just 15 minutes ago I mowed, string trimmed and leaf blew my entire yard with no issues.

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I had two EKGs one with an expert cardiologist, a Echocardiogram last week, and each test showed some irregularities but nothing that fits a "smoking gun" for the issues.

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So my GP is ready to throw up his hands, but he offered to keep digging, but warned me that it could be time consuming and somewhat unpleasant. He and I have lots of quips and jokes back & forth, so I laughed and then asked if he was trying to wear me down and discourage me, he was reluctant to deny that.

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Len

[Gman2 in reply to lankisterguy]

Thanks Len! I recall that we shared some similar somatic issues so I figured you might be the one to provide some insight. Now I am waiting for some skin biopsy results. Thanks again, Gerry

[prbs2707]

Hi,

I am 6 months post treatment with Obinutuzumab and Venetoclax. Yes, fatigue was a side effect. Its weird because you feel so tired but a good sleep does not seem to make a difference!

But the good news is that the drugs work amazingly well and once you are through the period of treatment things get better, I feel better now than I have for years! I have just had my regular monthly blood tests and everything is getting back to the normal ranges and, best of all, the tiredness has almost gone. One tip I found helpful is to continue to exercise even when you don't really feel like it. I don't mean working out but just a good walk really helps when the tiredness comes on.

Mine usually came on around midday (I took V at 08.00 daily) when it did I took off with the dog for a good walk and it really helped.

Now I feel fantastic and so grateful for Venetoclax. So tell your husband to hang in there, keep taking these wonder pills and in a few months when they are over, life will begin to feel so much better. I know its tough but there is light at the end of the tunnel.

Sending you both lots of luck and best wishes

Patrick

[Onmytime in reply to prbs2707]

I could have written this myself! Same experience. However, I did take my Venetoclax at night - it seemed to help.

[Ladylin151]

My hubby is the one on V. When he first started, he was amazed how well he felt and started to "overdo". He spent one week slowing down to the point of total exhaustion. Slept almost constantly and barely had energy to do self care. He refused meals and went back to sleep. Finally, I was mean wife and "forced" him to stay home and be nursed. When he contacted his team to report ( or tell them how mean I was??) he was told that he MUST eat his meals (2000 calories per day), he MUST drink 2 liters of water per day and he MUST "get some movement in". It was explained to him that this was to efficiently use his waste systems to move dead cll cells out of his body. He changed his ways and it made all the difference. He is doing very very well now and nearly half way done. I wish you to have such a good outcome!

[lisakc1 in reply to Ladylin151]

Thank you! I'm also the household meanie, reminding him to drink his water, and eat healthily but he hasn't had the energy or ambition to move as much as he needs to. Working on that! Thank you for your support! It feels good knowing that I'm not the only "taskmaster" out there! lol🤣

[Poodle2]

What is his Hb like? Mine kept dropping during the ramp up to the point I needed a blood transfusion.

[lisakc1 in reply to Poodle2]

Hemoglobin, a little low at 14.9

RDW high at 14.6

RBC low at 4.17

Absolute Lymphocytes low at .53

His specialist want to wait until a month or so after he gets to full dosage (next week) and see if his body adjusts. He checked his thyroid, which is normal.

We will just have to wait and see how this all works out!

[AussieNeil Partner Administrator in reply to lisakc1]

Your lab must have tighter reference ranges for his red blood cell and haemoglobin results. They are reasonably good. The RDW probably reflects bone marrow stress from the CLL infiltration and clean out. Due to the long red blood cell life, it can take 4 months for this to find its new norm.

He will need to be careful about infections with his low lymphocyte count. I would hope that he has been assessed for antiviral prophylaxis requirements.

Neil

[lisakc1 in reply to AussieNeil]

Thank you so much! We have taken the advice learned through this forum, and gotten every available vaccine prior to treatment, that said, he is on antibiotics for a Bladder infection. I had him ask his Dr. if a prophylactic med would be appropriate, since he is so susceptible to infection. They really don’t want to address anything until about 2 weeks after the ramp up, but I tend to be persistent. My guess is that it will take some time for his bone marrow to produce sufficient healthy red, white and platelet cells for him to truly feel energized. However, if there is a way to bridge the gap until he gets there, I’d love to explore the options. We are both so grateful that these amazing treatments are available for him. These side effects pale in comparison to what CLL patients endured years ago. I can’t thank you and the wonderful people in this forum for their knowledge and support. Understanding the science helps me feel in control of a uncontrollable disease. Knowing we are not alone, has brought us both great comfort and eased our anxiety and stress. Thank you!

[AussieNeil Partner Administrator in reply to lisakc1]

Your husband's body is now dealing with processing the recycling task of a massive CLL cell die off. The CLL cell membranes fail, (tumour lysis) releasing the cell contents into the blood. The recycling work mainly falls to the liver, which with other bodily systems, recycles nearly everything released, with the kidneys transferring to the urine the little that can't be reused. Hence the requirement to drink more during ramp up. The ramp up slows the process so the body, with the assistance of allopurinol, can manage the task without Tumour Lysis Syndrome occurring.

Meanwhile, there's remodelling of the bone marrow, the spleen and other nodes and other places where CLL cells may have taken up residence and are no more. There's also the processing and elimination of the venetoclax and its breakdown products. No wonder your husband needs some extra sleep.

I commend you asking his medical team about your husband's need for antibiotic and antiviral prophylaxis. Our immune system isn't able to destroy all invaders. With some, it establishes an uneasy truce, but without prophylactic assistance at times when it is under stress, the truce can end and we get opportunistic infections.

Neil

[spi3]

The followingprotocal has really helped my husband's fatigue - I make sure my hubby has a fat included (a pat of butter or coconut oil)breakfast right before he takes his Venetoclax (400 mg) and he was instructed to drink 3 full liters of water during the day day. After breakfast he does his daily exercise and chores. On a typical day he plays golf - 4 to 5 hours and then comes home to cut the grass another 2 hours. If course everyone is different on how they respond to venetoclax. Some people take it at night after their dinner because they become nauseated and are also tired. Good luck to finding the right protocol for your hubby.

[The-Man-with-a-Plan]

Hi Lisa

I just started Venetoclax on September 5th. I've been ramping up the dose fairly quickly at the direction of my CLL Specialist, Richard Furman, MD. Last Saturday, Sept 24th, I started taking 200mg. That's when I noticed the fatigue. A poem by Robert Frost, the American Poet Emeritus, entitled THE FOG, captures how I feel 1-2 hours after I take Venetoclax:

The fog comes on little cat feet.

It sits looking over harbor and city on silent haunches

and then moves on.

It's a struggle. Even though I know the fatigue will pass, it takes the wind out of my sails for about 4 hours. Then, voila!, I feel like myself again.

I see Dr. Furman in a week. I will ask him if there is anything I can do to minimize the fatigue. I suspect it will only get worse once I get to 300mg and 400mg.

In spite of this (and other) debilitating side effects, we are truly blessed to have so many effective options to fight a disease that 10-15 years ago had a much higher mortality rate.

Man w/Plan

[lisakc1]

Thank you so much! Please let me know what your specialist says and I will share with you any info we get from ours! Thanks again!

Lisa