First consultation after one month on Acalabrutinib which I started at the same time my husband became seriously ill.

[JEEA]

I finally took the plunge and agreed to start acalabrutinib on October 7th. Comments from many of you were most useful in helping me make this decision, especially about finding oneself at the "sweet spot" to start.

Sadly, about 4 days before I began, my fit, healthy, active 84 year old husband was admitted to hospital after a month when he had been having pains in his back and legs and not feeling well. Hepatitis A had been diagnosed but this was a red herring. Our local hospital (Watford General) has been excellent and thorough. After 4 days of culturing his blood, they found the bacterium, Granulicatella aviacens, which had infected the discs of his spine (discitis) and also the mitral valve of his heart --endocarditis, and they are still checking the cause of hip pain. He's now on 3 different antibiotics of which two are IV, but is slowly improving. They've been describing him as unique and complex. I've been going 2 x a day. Today they finally told us that the endocarditis is mostly gone.

With great good fortune, throughout all this, I have had no side effects from my acalabrutinib. I initially lost weight, but think most of this was because of worry about my husband and not sleeping well. Both have settled now.

I remember Sushibruno's heartfelt post 'When things go wrong' --about her husband's Parkinsons. What was interesting for me was our sudden change of roles. I had been the 'ill' one and he the strong one, and now it was reversed. To my relief, I was able to tap into reserves, and had huge support from our daughters, sons-in-law and grandchildren and friends.

I had my one month Haematology review yesterday. My lymphocytes have soared up to 283, which I understand from others is normal to happen at the beginning of treatment. My haematologist said that the acalabrutinib would be flushing out lymphocytes from my bone marrow, etc There were no new nodes. My blood test results are above.

Apparently my liver function is not good, so I have been told not to drink alcohol and to get my tests redone in 4 weeks by my GP. As I mentioned once before, I have been told not to have live yoghurt, kefir etc. as well as the usual grapefruit, etc. Sadly I love my fermented kefir and yoghurt. I am also on acyclovir 200mg 3x /day and Co-trimaxazole 160 mg 2x a day on Mondays, Wednesdays and Fridays. Allopurinol has now been stopped.

Any comments / observations greatly appreciated . Eleanor

[mrsjsmith]

Eleanor so sorry to hear about your husband, but do hope he is improving.

Are you not having your bloods checked monthly as you have just started treatment, I would have expected that for the first three months. With regards to the liver function there are a number of things that can affect numbers apart from alcohol, have you looked back on your previous readings to see if the figures have suddenly escalated.

Regards

Colette

[JEEA in reply to mrsjsmith]

Thanks Colette. They checked my bloods before I began, then after the first month, and will again in two months, but they have now asked for my liver to be tested in a month by my GP, so speaking to her tomorrow.

Yes the readings have suddenly escalated when I look back on them, but both before and after the meds began. Interesting enough, Fogey mentions lansoprazole causing him liver problems. I, too, now take this, so this may be the culprit. My husband also had hepatitis A so I'm also going to be ask for a test for this just in case that I have also caught it somehow.

Interestingly enough, when I had the appointment with the consultant, she not only checked nodes, spleen as usual, but also listened to my heart because of the Afib risk. I asked her how would I know if I were having afib and she said 'you wouldn't'. I know that you had this and had to come off Acalabrutinib. Did you have symptoms or was it only picked up because you were doing exercise research?

Eleanor

[mrsjsmith in reply to JEEA]

Eleanor there are many reasons for raised liver function tests. When mine went up I was asked if I was on any different medication or supplements and I have recently started on meds for a toenail fungal infection and my GP asked me to keep an eye on my liver results. Interesting they will test for hepatitis because a fellow patient and friend has hepatitis E and that results in high liver function.

I was on Ibrutinib and yes I was doing the research in Surrey and the Afib was picked up during the CPET test. I am now on blood thinners, but I have also wondered about how I would know. Cardiology suggested getting a small monitor, like the one they use in Surrey but I don’t want to get too paranoid about the whole thing.

Hope you get some answers soon.

Colette

[Fogey]

Hi JEEA. Glad your husband is on the mend. You’ve had a tough time. Please don’t panic about the liver data. I’m on Acalabrutinib too and suddenly was told I had liver dysfunction. I panicked too and cut down on alcohol only to thereafter be told it was probably the result of me being prescribed lansoprazole to protect my stomach from internal bleeding. As soon as I stopped taking the drug my liver recovered. That’s the good thing about the liver - it recovers fast. So get your docs to look at the time plot of your liver data to see if the abnormal results started at the same time as a new medication or other lifestyle change. I also have never been told to stop eating yoghurt or kefir. Indeed I specifically asked my consultant. I’d look into that a bit more.

Keep up the good work. We 80-year olds are hardy! Onwards and upwards!

[JEEA in reply to Fogey]

Thanks so much for this reply Fogey. Gosh, I too, am taking lansoprazole so that may be the culprit. My husband also had hepatitis A so I'm also going to be ask for a test for this just in case that I have also caught it somehow. And it doesn't sound like anyone has been told to stay of yoghurt or kefir!

I read your posts about the hard time you have had with acalabrutinib and so hope that things have been continuing to go better. Eleanor

[Fogey in reply to JEEA]

Well obviously you should get your docs to agree that you stop the lansoprazole. My liver data went haywire as soon as I was started on it and recovered within two weeks of stopping it. As my docs said, it was a well-intentioned prescription.

Still on the Acalabrutinib rollercoaster! Mobility issues gone. A bit of cardiac instability is the latest! Bloods improving. Onwards and upwards!

All good wishes for a quick happy resolution of your and hubby’s current problems.

[RamsesII]

After a 24-month treatment with Venetoclax and Rituximab I am now in remission. I take 400 mg Acyclovir daily plus 800+160 mg Bactrimel twice a week since I started treatment.

[LeoPa]

If you were advised to avoid alcohol, it is advisable to avoid fructose too. All forms of it. It's just as poisonous to the liver. Check out "Sugar, the bitter truth" by Robert Lustig, MD, on YT.

[AussieNeil Partner Administrator in reply to LeoPa]

Misconceptions about fructose-containing sugars and their role in the obesity epidemic

Nutr Res Rev. 2014 Jun;27(1):119–130. doi: 10.1017/S0954422414000067

pmc.ncbi.nlm.nih.gov/articl...

A causal role of fructose intake in the aetiology of the global obesity epidemic has been proposed in recent years. This proposition, however, rests on controversial interpretations of two distinct lines of research. On one hand, in mechanistic intervention studies, detrimental metabolic effects have been observed after excessive isolated fructose intakes in animals and human subjects. On the other hand, food disappearance data indicate that fructose consumption from added sugars has increased over the past decades and paralleled the increase in obesity. Both lines of research are presently insufficient to demonstrate a causal role of fructose in metabolic diseases, however. Most mechanistic intervention studies were performed on subjects fed large amounts of pure fructose, while fructose is ordinarily ingested together with glucose. The use of food disappearance data does not accurately reflect food consumption, and hence cannot be used as evidence of a causal link between fructose intake and obesity. Based on a thorough review of the literature, we demonstrate that fructose, as commonly consumed in mixed carbohydrate sources, does not exert specific metabolic effects that can account for an increase in body weight. Consequently, public health recommendations and policies aiming at reducing fructose consumption only, without additional diet and lifestyle targets, would be disputable and impractical. Although the available evidence indicates that the consumption of sugar-sweetened beverages is associated with body-weight gain, and it may be that fructose is among the main constituents of these beverages, energy overconsumption is much more important to consider in terms of the obesity epidemic.

[LeoPa in reply to AussieNeil]

I'll let Dr. Lustig to debunk your source. He did a stellar job at it. This wasn't about obesity but about someone with bad liver numbers already. Fructose is just as toxic to the liver as alcohol is. That's why it causes NAFLD. So for someone in that situation it makes sense to avoid it altogether.

[JEEA in reply to LeoPa]

Thanks Leo Pa and Aussie Neil. Actually, I have very little fructose in my diet, other than very occasionally honey and pears. Interesting enough, Fogey mentions lansoprazole causing him liver problems. I, too, now take this, so this may be the culprit. My husband also had hepatitis A so I'm also going to be ask for a test for this just in case that I have also caught it somehow.

[Quarry]

Sorry to hear about your husband and your trials.

Not sure I can be much help (I have not had any CCL treatment yet), but I to am on aciclovir (in addition to having had the shingles vaccine) - that has caused me no issues at all.

[JEEA in reply to Quarry]

Thanks Quarry. Yes, I too have had the shingles vaccine. Was yours prescribed specifically as a shingles preventative?

[Quarry in reply to JEEA]

I got Shingles and was put on Aciclovirto cure and then which they kept going as a prophylactic. THe vaccine came along later (?couple of years later) and at a regular CLL 6 monthly consultation, I was told to get the jab in addition to the Aciclovir. So, yes, both now as preventative

[Leo71]

Hello Eleanor, I wish both you and your husband all the very best.

I had not heard about avoiding live yogurt? Is this advised for all CLL patients or is this because your liver function is not good?

[CycleWonder]

If you are concerned about Afib, the newer Fitbits are supposed to be able to identify Afib episodes. The FDA recently gave Fitbit clearance to use its algorithm to identify Afib. Apparently, it identifies Afib 98% of the time.

[JEEA in reply to CycleWonder]

Thank you CycleWonder. That's usual to know. What particularly concerned me was not knowing if I did develop it so that I could do something about it; not so much whether I get it or not. Eleanor

[CycleWonder in reply to JEEA]

My brother has had it four times and he had no symptoms. He does not have CLL.

[JEEA in reply to CycleWonder]

Goodness, how did your brother find out that he had it if there were no symptoms? How has it affected him? And what has he done to stop it happening?

[CycleWonder in reply to JEEA]

He went for a regular check up before scheduling his knee replacement (which he still hasn’t had). I think the first two times they put him on a blood thinner. The next two times they performed ablation on his heart to try to stop the Afib. There is one small piece of his heart that is still causing the problem.

He has a big heart so that’s not a problem. He was a competitive cyclist in his younger days so that’s why his heart is enlarged. His resting HR is 48.