How long does it take to recover from Calquence

[Mackiec1108]

I have been off Calquence for a month but still can’t get over weakness, fatigue or in general feel like doing anything. I have been checked out by cardiology and PC physician. Is this normal for CLL? The oncologists say my cancer is well under control. I was treated with Calquence for 4 months.

[AussieNeil Administrator]

Hi Mackie,

First off, are you still taking any antivirals, antibiotics, etc prescribed with your Calquence? They can have their own side effects. Second, allow yourself a few months for your body to recover from your treatment.

Neil

[Mackiec1108 in reply to AussieNeil]

Thank you!

[MrMidnight]

Hi Mackie, It's difficult to know what drugs cause fatigue and how much is due to CLL. I've had serious fatigue on the three treatments (Obinutuzumab, Brukinsa and Venetoclax) I've been on for the past six years. I've accepted it's my lot in life after struggling for the first few years. It just seems to be how my disease rolls.

[SLLJOHN]

I’ve been on Ibrutinib for 4 years and Calquence for 8 months both eventually on reduced dosages to limit tiredness and joint pain. I think the Calquence is better but some days I feel very tired….I am accepting this as my lot with the SLL as I don’t think you can stop taking these drugs for too long without the SLL returning.

[onu1tadi2]

Good to know you are confident about going off it. I went off of Ibrutinib for 7 months and stayed in remission. Side effects disappeared quicky but i am very interested to know what your ongoing plan is? I went onto acalabrutinib (Calquence) in 7th month although i was still in remission but do not like the side effects in the 4th month. It is causing occasional short-duration A fib whenever i am stressed. Ibrutinib did too. How long do you plan to wait before starting another drug regime?

[Tchapman in reply to onu1tadi2]

I went of imbruvica because of nasty side effects my white count is in normal range as well. I've started doing so many natural things to keep it gone. My doctor told me to get on a plant based diet no sugar or anything made of white flour. I've lost a lot of weight doing the diet. Are you doing anything at all to stay in remission? Oh and imbruvica caused anxiety high blood pressure and many other things that's why I came off still dealing it but I don't have fatigue anymore. I've been off the drug since 8-2-21.

[Mackiec1108 in reply to Tchapman]

Thank you. I have been thoroughly checked out by cardiologist, primary care and regular checks with oncologist who says my cancer is well under control. I am on no other treatment except eating a healthy diet and exercising as my fatigue will allow. I walk 1-2 miles a day and do light strength exercises which is down from Pilates 3xs a week and golfing. Golfing is totally impossible now. Thank you for your encouragement and the best to you.

[onu1tadi2 in reply to Tchapman]

Well i often get heartburn from flour and sugar especially when eaten in evening. I am thinking of taking break from Calquence after 4 months. I have been in remission for a couple of years. I would like to ask if a scientist can explain dormant cll cells. Is it possible they will stay dormant with healthy living i wonder.

[Mackiec1108 in reply to onu1tadi2]

Sorry I’ve taken so long to respond. This week I have not been as fatigued and felt better. I don’t have a plan as to when I will resume treatment. I see oncologist in December. Was there a reason you went on Calquence while in remission? Thank you for your reply and my best to you.

[Hidden]

It took me the better part of 5 weeks to rid my body of Calquence. I'm also off allapurinal. I feel the best I've felt in 1 and 1/2 years. My hemoglobin was at 7 and now 9. Eat as healthily as you can and hydrate. Hopefully, you will feel as well as I now feel.

[Mackiec1108 in reply to Hidden]

Thank you. That is encouraging.

[onu1tadi2 in reply to Hidden]

That sounds great. I wonder if it is possible to test to see how many dormant cll cells there are.

[lankisterguy Volunteer]

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.

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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. 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.

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See Dr. Terry Hamblin’s blog on immunodeficiency

mutated-unmuated.blogspot.c...

and his comments on fatigue:

mutated-unmuated.blogspot.c...

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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...

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The Mayo Clinic has this text explanation of Cancer related fatigue: mayoclinic.org/diseases-con...

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From Patient Power Video: patientpower.info/video/im-...

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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 I 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.

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Len

[SofiaDeo in reply to lankisterguy]

Also note, an atypical AFB infection with Nocardia also grows in soil and contaminates water. It can be opportunistic in us immune compromised folk. It generally starts in the lungs, but can affect the skin and central nervous system. Although rare, it's something to keep in mind because it's extremely difficult to get a positive bacterial culture, AFB organisms are slow growing.

medlineplus.gov/ency/articl...

In this patient discussed last year, they couldn't definitely ascertain his infection was Nocardia until autopsy. My pulmonologist told me that he hasn't seen it outside of ICU level sickness, so I would think only the severely immune suppressed (needing IVIG, on steroids, or constant infections) would need to ask their docs to consider ruling it out earlier if there is a stubborn skin or respiratory infection. Skin, especially, can have a simple AFB stain if there is pus. So even if the culture is hard to grow (it can take 6-8 weeks), if we can ask our docs to do an AFB stain in addition to a Gram stain we can catch it early. I don't recall seeing a lot of AFB stains on skin abscesses my years setting up specimens/doing the stains in a microbiology lab, it was mostly sputum and other respiratory ones. But moving forward, I am keeping this simple, inexpensive test in mind if I get infections.

journals.lww.com/md-cases/F...

I mention this to us CLL folk, because there also is an instance of Nocardia presenting as Richter's Syndrome. The folks at MD Andersen did a full, complete workup including a modified AFB stain, instead of taking the initial Richter's presentation at face value.

ascopubs.org/doi/full/10.12...

I mention this because I had a pseudo-Richter's scare last fall. I was encouraged to go to the hospital & get admitted immediately. Instead, I asked for repeat labwork instead of going to the hospital. If it wasn't for Covid being rampant, and just before Christmas with traditional holiday staffing issues, I might have gone. I was still having pneumonia symptoms and had just seen a pulmonologist recently for initial workup. In researching my lung problems, I ran across not only the Nocardia pseudo Richter's thing, but also a Herpes pseudo Richter thing

pubmed.ncbi.nlm.nih.gov/117...

So when Len reminds us to check every potential oddball cause for our symptoms, IMO he is right on the money! And especially with what appears to be Richter's Transformation, don't jump into treatment. Rule out every other oddball thing. Yes, treatment needs to be sooner rather than later when it IS Richter's, but 72 hours or so could prevent unnecessary treatment. Verify there are TP53/NOTCH1 mutations, and get a CLL specialist to weigh in if you aren't using one for routine care.