My husband Gary’s CLL was found October 2017 and we were hoping he could go many years without treatment. Unfortunately he got really sick in the spring and his lymphocytes shot up and hemoglobin dropped leading to extreme fatigue. He started on Ibrutinib three weeks ago.
He hasn’t had many side effects that he can tell and actually pretty much stopped having night sweats after day two and has a bit of insomnia.
Since he has been feeling better, he overdid it on a few days and had to rest next days to recover. I am also encouraging him to drink more water.
We returned from a road trip that he was mostly feeling pretty good on and was taking it easy, but he insisted on doing all the driving. The next day him he began feeling terribly woozy and he described being unsteady on his feet. The next day was worse, in fact he said his worst day.
Now I am insisting on more water ???, and he is a bit better, can drive but doesn’t feel great.
Does anyone have any experience like this?
Thank you.
Written by
Shalom33
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Your husband is getting off lightly compared to my experience on a second-generation ibrutinib (Zanubrutinib)! I was housebound for the first year on the drug and had to use a wheelchair for the long trip down hospital corridors. In my second year I could only manage 300m walking a day.
Nearly four years later, I'm doing a lot better and can walk 8km a day. But I'm still not able to drive (or travel) long distances.
The way CLL affects all of us is highly idiosyncratic but your husband may feel a lot better as the drug continues its work...
Lots of possible causes including low blood counts, low blood pressure and inner ear issues. May be totally unrelated the Ibrutinib or even the CLL. Stay strong. We are all in this together. Brian CLLSociety.org
Like what? Can you give some examples? please .Unfortunatelly we can't discusses tete a tete with famous oncologist about our condition. That is why we relay on people like you. Thank God for your experience and as a chosen MAIN SCIENCE GUY here ,for going all over the world to learn about new acomplischents in B cell malignancy. Sometimes we have very simple question like the one about neutropenia.I personaly will not call my doctor over the weekend to see what could be a reason for my neutropenia. I will be seeig her on Monday but until then, I will be a nervous wreck.(Did my Lymphoma returned?, is Ibrutinib wiping off my neuthrophiles ? What are other possibilities ???Thank you.
It is important to confirm that the low neutrophil count is consistent and not just a spurious and transient finding. If it is constantly low, it could be from several different meds, the CLL itself, a rare auto-immune complication of the CLL, or some types of infections such as EBV or hepatitis. Your doctor can work it up . Hope is just goes up and you are left wondering but not worrying. Stay strong Brian (CLLSociety.org)
Hi Sue, Sorry to hear that hubby is still struggling. I remember your post about him suffering from having too much water - very interesting and not what we tend to think of. I hope he feels better soon,
So glad he's feeling better, Shalom. Thanks for letting us know.
I seem to have got off lightly from the possible side effects of Imbruvica. The night sweats disappeared almost immediately after I started taking it and ten weeks on I hsve a lot more energy and am sleeping better. One downside my last bloods showed a high level of liver enzymes so wondering if this is a common side effect.
Thank you this is good to hear. May you continue feeling better. I’m not familiar with the liver enzymes rising. I’ll have to go back and check his results.
I think Brian has it right, it may bento thing to do with the medication.
I am on round eighty seven of my Ibrutinib course with little in the way of symptoms since I started. A lot will depend on your variety of CLL as to symptoms and previous treatments. I am not unusual but grateful, there are those that do have symptoms.
What you describe is familiar to me. Prior to my diagnosis in 2008, I was accustomed to being able to ignore fatigue and just keep working/traveling/living and like a young athlete, I expected to get my "second wind". en.wikipedia.org/wiki/Secon...
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But with CLL, I found that fatigue was now different, and pushing on, ignoring my symptoms no longer worked. And if I failed to slow down and conserve my energy, I would pay for it dearly the next two days. I not only had to retrain my body to sustain a lower level of effort (regular moderate exercise) I also had to retrain my mind to accept that I was past 70 and had a serious medical condition.
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It has been a while since I posted my very long fatigue story, so here it is again:
The regular readers here and on other CLL sites know that any mention of fatigue gets a post from me about testing for re-activation of common childhood diseases, so here it is again. Don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue.
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We have CLL a cancer of the immune system, it allows many diseases to affect us that don't bother most people, but our hard working, intelligent doctors often forget those potential complications.
Why do CLL patients experience fatigue? Dr. John Burke and Dr. William Wierda, renowned CLL experts, explain the potential causes of fatigue in CLL patients in this video: patientpower.info/video/wha...
Joseph writes in this question about fatigue. He says, “I sometimes have days where I’m extremely tired. Mornings are okay, so I’m able to shower and take care of myself and my home. But by noon, I’m exhausted. I feel I have no quality of life. Just walking across the room, I feel unsteady. Is this fatigue all about my CLL?“
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Dr. Thompson:
This is a really good question. Fatigue is, by far, the most common symptom that patients with CLL have, and the reason for this is that the CLL cells themselves are producing these chemicals called cytokines, and also, they induce the immune system to produce these chemicals called cytokines that are the same chemicals that you make when you’ve got an infection, like the flu. The symptoms that you have when you have the flu, the exhaustion, the fatigue, not being able to get out of bed, this is a common complaints that patients with CLL have. This can happen even when the CLL is, what we call, early stage and doesn’t need to have specific treatment for the CLL.
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It can be a big frustration for patients, and it can result in a significantly impaired quality of life. Now, that having been said, fatigue is a somewhat vague symptom, and it have many potential causes, so I would strongly encourage any patient for whom they have significant amount of fatigue, like you, where it’s effecting your quality of life to a significant degree that you should go and see your doctor, be thoroughly evaluated to determine whether there are any other causes for the fatigue.
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We see many patients who may have undiagnosed sleep apnea or an undiagnosed endocrine disorder, or any number of other things that can cause fatigue, and treatment of those will make it go away. In many cases, those things are not identified, and it is determined, ultimately, that it was the CLL that’s responsible. Now, in that situation, you have two options. You can take symptomatic treatments.
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Some of our patients take stimulant medications to help them with the fatigue, like Ritalin. We also have a clinical study at MD Anderson with a drug called ruxolitinib or Jakafi that is approved in other types of cancers. This drug actually blocks the production of these cytokines quite effectively in many patients, and we’ve noticed at least half of our patients have a fairly significant improvement in their fatigue levels on this treatment. The other option is to receive treatment that’s designed to kill the CLL itself, and which of those is most appropriate depends on your individual circumstances. I would strongly encourage patients with significant fatigue to talk to their doctor about it, make sure it’s not something else, and then discuss what options might be available to help them with that fatigue, because it’s awful going through life feeling exhausted all the time.
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Now to my (Len's) personal experience:
All 4 times my CLL has progressed I’ve gotten severe fatigue and weakness in my thigh muscles, possibly due to a reactivation of a childhood disease that added to my symptoms. In 2010 before treatment we tested for Iron and D3 and found I was extremely low in both, so supplements helped relieve some of the symptoms. Others in our discussion groups have found Vitamin B 12 to help. Don't just add some random amount of these supplements, get your PCP or Hem/Onc to test you for Iron & Ferritin, Vitamin D3 ( Cholecalciferol, 25-hydroxyvitamin D ), Vitamin B 12 since the correct amount to supplement may be drastically different than non CLL people.
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I also had Whooping Cough (Pertussis) and an antibiotic quickly cured the bacteria infection but the cough lasted a long time. When I was treated in 2010 with Rituxan monotherapy the fatigue problems decreased dramatically.
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In 2012 I had leg cramps and fatigue that primarily occurred when I tried to drive a car, I could walk OK but not drive. A reactivation of HHV-6 (an infant disease called Roseola) was diagnosed along with progressing CLL. Treatment with Valganciclovir (Valcyte not Valtrex) in October relieved the cramps, reduced the fatigue and lowered my ALC, starting Idelalisib in December fixed my fatigue entirely.
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I was on Idelalisib from Dec 2012 to May 2015 and then switched to Ibrutinib until Feb 2016 and had full strength in my legs. I was able to ski like a 40 year old (at 68 years) but after being off the drugs for 8 weeks my ALC was only 43 but the muscle weakness in my thighs returned. We have tested for all the above causes but cannot find a smoking gun beyond a drug resistant HHV-6 at log 4 x normal. I've been on Acyclovir daily since 2012, but that has no effect on the HHV-6.
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I started Venetoclax in June 2016 and within 3 weeks the cramps and fatigue were gone. So for me treating the CLL has solved the fatigue problem 3 times.
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When had a full round of Prednisone and then Venetoclax, Dr Furman had me taking a prophylactic medicine Atovaquone to prevent my contracting Pneumocystis. Here is what Wikipedia says it is: Pneumocystis pneumonia (PCP) is a form of pneumonia, caused by the yeast-like fungus Pneumocystis jirovecii. Pneumocystis pneumonia is not commonly found in the lungs of healthy people, but, being a source of opportunistic infection, it can cause a lung infection in people with a weak immune system. Pneumocystis pneumonia is especially seen in people with cancer undergoing chemotherapy, HIV/AIDS, and the use of medications that suppress the immune system
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So is it CLL and an opportunistic infection? You may need to see an infectious disease doctor, perhaps one that treats other immune compromised conditions like HIV, MS, etc. to get an effective work up for these potential other infections.
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Suggest you get tested for all the HHV viruses like CMV, EBV, etc. i.e.: the entire list of HHV 1 to 8. HHV-4 is EBV also known as mononucleosis, notorious for fatigue. Note that the more common antivirals (Acyclovir and Valacyclovir) are not believed effective against all 8 HHVs, so you must be tested and treated differently if one is found active.
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Most Docs ignore these since many adults have these as dormant, latent viruses controlled by the immune system- we immune-compromised patients see them reactivated. We know about Shingles from Chicken Pox (HHV-3) but the others are difficult to distinguish from CLL symptoms. So don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue.
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And as others have suggested get your Immunoglobulins tested and if needed, get IVIG infusions; many CLLers have had their frequent bacterial infections stopped by that expensive but effective step.
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Since you have a weakened immune system, you should be aware that fungal infections can happen. Learning about fungal infections can help you and your doctor recognize them early. This may help prevent serious complications. Although much progress has been made in the management of opportunistic fungal infections, their diagnosis and treatment remain a challenge.
Thank you for the links! Gary found your words very comforting. He will be 71 this December and is realizing the same thing. And thank you for the tip about other possibilities.
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