Unknown territory for me. I will start on Acalabrutinib in a couple of weeks. 😒
HI! I only joined today. : Unknown territory for... - CLL Support
HI! I only joined today.
Read more about...
72 Replies
•
NewdawnAdministrator
Hi Frank and a warm welcome to your new community for your first post at a pivotal time in your CLL journey. Lots of people on here will be able to share their Acalabrutinib experiences with you and offer advice and support.
Are you able to share why your doctors feel treatment is necessary at this stage. Has your CLL progressed more quickly and are you symptomatic?
Looking forward to hearing your updates.
Best wishes,
Newdawn
• in reply toNewdawn
Thank you very much for your nice welcome. I can't give you too many details. Not because I don't want to, but because I'm pretty ignorant about my condition, even though I was diagnosed in 2016 and was told I most likely had CLL at least 2 years prior. The lymph nodes have been swelling faster recently, the spleen is enlarged and the platelet count is falling. Extreme fatigue is my main problem and of course I'm worried about infections. I feel unwell all the time and can't shake it. My concern now is what effect the chemo will have on me. I have never responded well to medication.
Walkingtall62• in reply to
Hi, welcome. I have been taking Acalabrutinib for a good three years now (I forget the exact time). It is just two tablets a day, 12 hours apart. If I have had a problem it was because my subconscious clicked in. But that soon righted. I started the medication just when Covid started, so chemo was out as no new patients were being invited to hospital. I feel very lucky. Occasionally, recently I have some fatigue, but I did catch Covid just before Xmas. In all, very happy with my lot. I am sure you will be too
• in reply toWalkingtall62
Thank you 😊
mrsjsmith• in reply to
Frank Acalabrutinib isn’t chemo, and hopefully when you start your fatigue will go 🤞
Colette
• in reply tomrsjsmith
Oops, I blame my Haematologist then but thank you Colette 😊.
• in reply tomrsjsmith
According to Mr. Google: Acalabrutinib (pronounced [a KAL a broo ti nib]) is also known by the brand name, Calquence. It is a type of chemotherapy and an antineoplastic (anticancer) drug that belongs to a class called tyrosine kinase inhibitors (TKI). (Please don't blame the messenger).
neurodervish• in reply to
Hi Frank, Welcome. No one is blaming anyone—we're all here to help. Technically speaking, all medications are chemicals. I believe y'all even refer to pharmacies as chemists. 😀
In the CLL world, we typically refer to "chemo" as the drugs that wipe out a lot of cells, cause nausea, and in some cases, even cause hair to fall out. Targeted therapies (like BTKIs etc.) are a whole different thing. They go after the problem cells and leave most everything else alone. This is next level stuff.
If your disease has been around since 2014 (or even 2016), it's most likely that you have a much less aggressive version of CLL (what we refer to as indolent). The long period of “watch & wait” you had typically corresponds with the 13q / mutated genetic markers. And while none of us ever wanted this disease, we'd all rather have that genetic profile. If you had a more aggressive version of CLL, your symptoms (of fatigue, swollen lymph nodes etc.) would likely have shown up 6 to 8 years ago.
• in reply toneurodervish
You are very kind. Your reply is a big help and I appreciate it. Thank you. 😊
MovingForward4423• in reply to
Do your self a favour and stop googling. Loads of information, and much is outdated. So were you on Watch and Wait? Have you been monitored from 2016?
• in reply toMovingForward4423
I don't Google things. I only did it in this case about the medication I'm about to take. Yes, I've been on W&W and regularly monitored since 2016.
MovingForward4423• in reply to
Excellent, I wasn’t sure where you are located. Acalabrutinib is a good drug was less chance of AF than Ibrutinib. Acala comes with side effects, they have them. Hypertension is just one risk. Zanabrutinib is the latest BTK and it might be worth mentioning to your consultant. If you are on the NHS, Zanabrutinib may not yet be an options. CLL is very treatable, so the outlook is positive. Once you start the BTK inhibitor, things will turn around quickly. Hang in there!
• in reply toMovingForward4423
I will. I appreciate you saying that. Could you elaborate on the side effects? I know not all might apply to different individuals but the info I have us rather vague. I believe it's always best to hear it from patients themselves.
Sorry to hijack your post. You say Acalabrutinib affects your hypertension. I'm on Acalabrutinib and my BP is bouncing around. Hospital says it's nothing to do with Acalabrutinib. Can you point me to some information please. Have GP appointment tomorrow. Many thanks
Kate
I spoke to my haematologist in this and he said in all BTK hypertension is there. It does depend on the individual so speak to a CLL specialist. ashpublications.org/blood/a...
Kate slightly different because I am ( or was because paused recently ) on Ibrutinib and my blood pressure also bounces around. Current thinking is possible AFib. I am on low dose meds and my GP sent me for echocardiogram. Certainly worth discussing. And my GP was more proactive than my consultant.
Colette
• in reply tomrsjsmith
I should mention that I have apart from other ailments, two autoimmune diseases, CLL and psoriasis arthritis, which means I am particularly concerned about stroke and heart attacks. My heart us not in the best of shape. Since I have been diagnosed with anxiety and clinical depression, since my youth, you can imagine that I am worried on a daily basis.
mrsjsmith• in reply to
Frank as you have a pre-existing heart condition you should ask your consultant if they think Acalabrutinib is the best treatment for you. Are they a general haematologist or a CLL specialist. There is also Zanubrutinib that is a second generation BTK. And Venetoclax and Obinutuzumab. But try not to worry because whatever treatment you start with you will be carefully monitored.
Colette
• in reply tomrsjsmith
Thank you Colette. I believe he is a general haematologist. CLL specialists are hard to come by. I heard this morning that a junior doctor strike may delay my appointment for next week. I will mention it though when I get to see him. I'm just worried because he seems very laid back about everything and possibly plays the condition down.
mrsjsmith• in reply to
Frank if you mention where in the country you live someone here may be able to suggest a CLL specialist. It is easy to switch I did, you just get your GP to do it.
I wouldn’t take heed of a laidback doctor, in my experience they don’t hold back, so please don’t think they are hiding anything.
You should also have a clinical nurse specialist. Ask for their contact details. They are also great for answering questions. Do you have anyone that can go with you, if not write your questions down ahead of your appointment.
Colette
• in reply tomrsjsmith
Thank you. I appreciate that. I remembered that I did see a specialist years ago when I was first diagnosed. I did get a referral from my GP, had to wait forever for an appointment to sit then 2 hours in the waiting room to get seen by a friendly but overworked doctor and dispensed off after a few minutes. I just want treatment to start asap. The W&W has been going on tok long. I don't have any support but that said, there are haematology nurses I can contact. I will write questions down but knowing me, I probably forget to ask the important ones. 🙄
mrsjsmith• in reply to
A two hour wait is common in my hospital. Good luck 🤞
Thanks Colette.
SofiaDeo• in reply to
Well, I am sure at least some of your fears may be lessened as you learn more about your condition! We have a section here of Pinned Posts that explain a lot of concepts and things in a more "non medical" way. So you can learn things that are more or less "normal" as you go through treatment, or when something is going on to notify a doc sooner rather than later.
A US non profit site, CLL Society cllsociety.org has a bunch of information too. Plus a template of lab values to track; you download the thing onto your computer, then save it and you can start seeing how your results change over time, if this interests you.
And of course, now that you have found this site, you have a place to speak with people who actually have gone through, or are going through now, the same thing.
Here's a Search of acalabrutinib from this group, if you want to check out discussions where the drug came up.
healthunlocked.com/search/p...
Another thing. We now have a number of drugs, and people do react differently to them, and doctors do adjust doses. So even though you are "generally sensitive", your docs likely will adjust things to you. Our medications aren't like antibiotics, where everyone more or less gets the same dose. The key is to note any side effects, and report them. If for some reason any side affects are intolerable, there are other options.
• in reply toSofiaDeo
Great stuff and a big help. Thank you 😊.
Started 2 months ago already feeling better and blood count is looking very good!
• in reply toxv750
Wow. Brilliant. You guys are great. I was a bit pessimistic until now. 😃
Walkingtall62• in reply to
One thing I have learned is that ‘this club’ is certainly not pessimistic. They are a joy to belong to. From the serious to the funny, it’s amazing how words can help. I feel privileged to belong. Far more help, certainly on more minor things, than doctors and the guidance we couldn’t do without. Enjoy your journey
• in reply toWalkingtall62
I'm grateful for your message. If I have forgotten to respond to anyone, it's not out of ignorance but I'm trying to find my way around the site. 😁
Walkingtall62• in reply to
Hi, don’t worry about that either. It happens
I took Acalabrutinib/Calquence for about 5 years. I had to stop due to an acid reflux condition but my remission is holding at 28 months and counting! My CLL/SLL responded well to Acalabrutinib - lymph nodes shrunk away in weeks. Best of luck to you on your treatment journey. Ask us any questions at all - that what we do here - support each other with our experiences.
• in reply toDoriZett
Thank you. That's lovely. 😃 x
Dori,
May I pry a little bit? I have acid reflux and I am also on Acalabrutinib without any issues. What happened?
Jeff
Hi Jeff -
Not prying at all - I just don't want to bore folks with repeating the story too often! 😄
I had been on PPI (Prilosec) for several years prior to my SLL/CLL diagnosis. I tried to do the short term treatment as is recommended but always had to go back to taking it daily. It is not ideal to take it forever because I believe it contributes to osteopenia/osteoporosis (bone loss - which I was diagnosed with 3 years ago). There may be some studies that say it contributes to mental decline (Alzheimer's, dementia, don't quote me....). I stopped looking at the negatives of taking PPI's because I need it - so we pick our lesser evil and just keep living.
When it came time to treat the CLL/SLL with Acalabrutinib/Calquence in a clinical trial in 2017 - and PPI's were contraindicated - my CLL Specialist and I thought maybe the acid reflux/GERD could be controlled with "lesser means" - famotidine, TUMS, and I tried some awful tasting liquid medication, too. I can't recall the name (would know it if I heard it) but that did a number on my digestion causing diarrhea and terrible stomach cramps and did not help the reflux. I stuck with the famotidine and TUMS and dramatically changed my diet (lost weight from cleaning up my diet, along with cancer stress, and digestive discomforts when I didn't eat "clean"). I continued to belch, and have stomach upset from time to time but the Acalabrutinib was working wonders on my CLL/SLL so I just accepted it as they way it would be.
About 5 years in to successful treatment in the Acalabrutinib clinical trial, I started getting hoarse when speaking, and had a frequent, dry cough. ENT said acid was showering my vocal cords and causing vocal cord paralysis (paresis). The ENT suggested seeing a gastroenterologist and having an endoscopy. She saw erosion damage down my esophagus and found 2 bleeding ulcers in my stomach. The Acalabrutinib/Calquence was immediately stopped. I was declared in partial remission (SLL'ers often do not get complete remission - separate discussion) and was put back in Watch & Wait for CLL/SLL. I went back on the PPI and things were better until recently.
Please let me be clear - it WAS NOT THE ACALABRUTINIB CAPSULES that caused the ulcers - it was NOT TAKING THE PPI. Now there are Acalabrutinib TABLETS with which a PPI may be taken. PPI's may also be taken with the 3rd generation BTK inhibitor - Zanubrutinib.
When it comes time to re-treat my CLL/SLL - I will have options which allow PPI. I will be revisiting what will be a 30 month remission by April/May 2024 with a CT scan, physical exam and labs - to see if the partial remission is still holding.
Unfortunately, within the last 6 months or so - I started getting hoarse again and having a dry cough. The ENT saw redness and irritation on my vocal cords even with my regular 40 mg capsule of Prilosec (PPI) in the morning.
Until I could get an appointment with the gastroenterologist (months long waiting list!!!), my primary care physician added a 20mg famotidine OTC in the evening, just to keep the acid under control.
Today, the gastroenterologist ordered another endoscopy, scheduled for 5/15/24, to see what is going on in my esophagus and stomach.
I am disappointed to be sure but I will not borrow "trouble" until we see what is happening down my esophagus, and in my stomach, and if CLL/SLL needs retreatment. You know what they say - it's always something! 🙄
I hope that helps inform you - and that you are not dealing with any of the above - and are just enjoying successful Acalabrutinib treatment. All the best to you.
Dori,
Wow, that’s been tough going. I asked because I’m having an upper and lower endoscopy/colonoscopy next week and also wasn’t sure that you knew about the tablets not being contraindicated with PPI’s now.
Thanks for the info and good luck with your decision.
Jeff
welcome
Welcome and I wish you luck.
Hi Frank
I have taken Acalabrutinib twice daily for four years next month. I am delighted to let you know that all my markers have fallen to normal CLL levels for the past several months. And I feel great!
My life pre Acalabrutinib was extremely grim and not fun at all. Now that life is a distant memory.
During my first three months on Acalabrutinib my side effect symptoms were headaches, mild nausea from time to time and occasional loose bowels. That was it for me.
My Haematologist recommended medication to deal with those minor issues.
I admit that I almost didn't start the treatment due to unfounded fear. I am eternally glad I did.
All the best with your Acalabrutinib treatment.
Cheers
Ross
• in reply tospanish36
Thank you so very much Ross. That was extremely helpful and I feel much better now starting the treatment. I didn't mention that I have other ailments which crosswire with my CLL but I will bite the bullet sort of speak and hope for the best. Some side effects I expect but the status quo is not something I want to carry on.
spanish36• in reply to
You are welcome Frank. I look forward to hearing of your progress.
Wishing you every success with your Acalabrutinib journey.
Cheers
Ross
• in reply tospanish36
Good man. 👍 I just want to have an acceptable standard of living. I have hardly any energy. Moving around is difficult or doing anything at all really.
I’ve been on Acala for just over a year and luckily suffered very few side effects. My swollen nodes disappeared within weeks and the fatigue that had left me knackered just walking round the block improved so much that six months later I walked 16miles in Cancer Research ‘Relay for Life’ event. My bloods are stable and I continue to walk and play golf. I remain cautious around crowds and enclosed spaces but otherwise live pretty much a normal life.
But all us CLLers are different and some have had a completely different experience with Acala.
• in reply toMuddywater
Oh wow. I'm so pleased for you. That's a very positive message and I hope I have a similar experience and get some life back.
Been on acalab for 18 months and now in remission- it works! Only side effects bruising here and there and stay out of the sun. If you are on tablets instead of capsules can continue with PPI tablets. Good luck
• in reply toNucleusman
Haematologist made no mention of acid reflux or ppi tablets but I expect once treatment starts and whatever side effects I might have, he'll advise me. For once, I have actually a consultant I get on with.
Frank, I agree with all of the above. For most, including me, Acalabrutinib has only a few mild side effects which tend to fade away over the first few weeks and months. I notice virtually no side effects now 16 months on treatment. One nearly universal side effect at the beginning of treatment is headache in the morning. This goes away very nicely for most patients by drinking coffee in the morning with and after your morning dose.
This “problem” is only there for the first few days to weeks. I am living with my wife on our boat and feel liberated since taking Acal. You may or may not know that your spleen is likely quite enlarged as many CLL cells go the there to hide. The spleen and your lymph nodes that you can see and those that are visible on a CT scan will rather quickly shrink and recede.
By all means take your time and search around this amazing site and you will find support and quality answers to your questions.
All the best going forward.
Ron
• in reply toCaptRon1976
Great info Ron. I really appreciate it. My spleen is enlarged and my Haematologist is keeping an eye on it. I'm due another scan. Lymph nodes are here there and everywhere. I will take your advice and those of the other lovely people on here.
Good luck with the acalabrutinib. I've been on it nearly 2 years and been good as gold.
• in reply tojonathan7176
That's what I want to be as well. 😀
Good morning Frank. Thanks for sharing. I’ve been on Acalabrutinib for 15 months. My suggestion to you would be to have your “tool box” in place in case of side effects. Have your doctor prescribe a medication for nausea and have something at home for headaches. When I started Acalabrutinib the second night I had both nauseous and a pounding headache. My body had to get use to the medication. My headaches would start in the early evening so coffee was not an option. The way I joined this site was by googling what to take for the headaches. Luckily someone forgot to lock their post and I read about taking “ Excedrin Tension Headache” medicine. I’m in the US so I went out and bought it. It was a life saver for me. It’s just Excedrin with caffeine. Some people take Tylenol with caffeine. Also having coffee in the morning helps. Have patience, be kind to yourself, and you’ll adjust to the medication and be able to live a fairly normal life! Take care!🦋
• in reply toKatie-LMHC-Artist
Thank you very much for that. I'm not sure my consultant will be offering Nausea tablets and I forgot to ask. I see him next week and he wants me to start nearly right away so I'll see what happens. I'm in the UK and we do things a bit differently than you in the US but there is always coffee. 🙂
Katie-LMHC-Artist• in reply to
Ginger helps with nausea. I only had the nausea the second night due to the pounding headache. Ask your provider his thoughts on managing headaches especially if they happen in the evening. Good luck with things!!!
I call my husband's Acalabrutinib his 'Angel" pills. They were really a miracle pill that helped my hubby's health immediately! The only side effect he had was a headache (in the beginning and seldom now), and when that happened, he had a cup of coffee and it went away. So glad you joined this wonderful community of folks and welcome
• in reply tospi3
Awww bless. That's great news and especially for your husband. Drinking coffee won't be a problem, I'm addicted to it. 😁
I’ve been on it 2 years. Weird headache first few weeks which went away with a cup of coffee. I started feeling good very quickly after starting . Labs are normal now.
I bruise now and then but I’m very active so bumps happen ( scuba dive, hunt, fish, walk etc). Drink the recommended water amounts! Ask your MD for nausea and headaches meds if you want them for security ( I never used mine).
This site is a great resource for accurate info from great people. All the best to you!!
• in reply toTeemed
That's lovely. I'll do that. I'm not nearly as active as you. I just want to be able to feel human again. 😃
forgot to mention days of extreme fatigue- not sure because of CLL or Acalab
• in reply toNucleusman
I'm already suffering from extreme fatigue, so I guess it's probably the CLL. I hope Acalab will improve that and from what I've been reading, it should in time.
Frank,
I have just put the 'phone down from speaking to my haematologist. I am on Acal and she said "I'm very happy with all your blood numbers, they are excellent so I'll do the prescription for the next three months' supply". It is a bloody easy medication to take; just two tablets a day, I've had no side effects except for small blood-blisters that come up in my mouth and go away again as quickly. As for fatigue; before treatment I changed the drive belt on my motorbike; it is a 2.5hour job. It took me three days and I struggled to pull up the hub-nut at 160Nm. Post treatment I'd do the job, including the rear brake disc, in 2.5 hours easily and on a recent study of high intensity training in CLL, on the seated row machine I was pulling 50kg in an assessment yesterday so could easily pull 160Nm on the torque wrench with effort to spare. All down to Acalabrutinib. It works for me, I'll just keep taking the tablets as they say.
• in reply toSERVrider
Sounds like you got your life back. That's all we can really hope for. To be honest, you guys have given me a positive feeling about the treatment and I couldn't have asked for more. The blood blisters in your mouth can't have been too pleasant but all things considered, a small price to pay.
Rinse with baking soda after you brush your teeth. That might help!👩🦳
• in reply toKatie-LMHC-Artist
Thank you Katie. 🙌 😊
Katie, thanks for that, I hadn't thought of that and it is well worth a try.
When I started Acalabrutinib I received a grant to pay for the medication. I’m in the US. The pharmacist attached to that grant sent me literature and it included instructions to help manage the mouth blisters using baking soda. I now get my medication directly from Astra Zeneca at no cost because I’m able to keep my income under the financial cap. Let me know if the baking soda helps! Good luck!!!👍👩🦳
• in reply toKatie-LMHC-Artist
I get my medication on the National Health Service (for now anyway) I will let you know. Perhaps I won't even get blisters. There is always hoping. 😊
Katie-LMHC-Artist• in reply to
I did not get them. We are all different!!! Stay well!🦋
Hello FrankEurope
Welcome to the website of hope. Blessings.
• in reply toBig_Dee
Awww bless. Hope indeed. Thank you Dee.
Hello Frank. I've been on Acalabrutinib for 3.5 years and went from unable to walk 100yds to walking 5 miles within a couple of months. As others have said, it's an easy drug to take with few side effects. It's the risk of infections that worries most of us with CLL but you will soon learn to manage that side of the disease.
Now I get monitored every two months are happy to say I'm in the boring department now.
Exercise and a very healthy diet would be my top tip.
Kate
• in reply toEucalyptus22
That's very helpful Kate and good news indeed. Unfortunately for me the walking won't improve much since I have multiple other ailments that would prevent that. The same goes for exercising but I keep it in mind. It is good advice as is healthy eating but I can't eat everything I like.
Traditional chemo disrupts dividing cells by interfering with the copying of DNA. This affects all cells that are dividing, skin, gut lining and hair are all rapid growth with high rates of cell division and badly affected. It also tends to carry a risk of secondary cancers but targeted drugs have some risk as well.
Novel targeted drugs attach to protein receptors to block a signal path that keeps the cell alive. BTKi drugs block the Kinase path of CLL B-cells and the cell dies. To a lesser extent they also match receptors on other cells and this causes off target side effects. BCL-2 drugs target a receptor on mitochondria within the CLL cell preventing it "powering" the B-cell, the cell dies. BCL-2 is found in many other cells but they don't seem to be affected (to the extent of BTKi). Then there are monoclonal antibodies, for CLL these usually target the CD20 receptor. They attach an antibody that signals the cell is to be destroyed.
How are your kidneys? Venetoclax+Obinutuzumab (BCL-2 + CD20mab) is a short duration 12 cycle, 48 weeks treatment, it requires good kidney function. The first 9 weeks are quite intense and requires a lot of hospital visits. 5 days infusions for the CD20mab during the 9 weeks, then its once a month until cycle 6. Lots of waiting for blood test results.
Another short duration treatment is Venetoclax+Ibrutinib (BCL-2 + BKTi) for 15 cycles, 60 weeks. Ibrutinib is the first generation BTKi and has more side effects than 2nd gen Acala/Zanu. This is offset by the short duration of treatment. Tablet only but has an intense 5 weeks for ramp up of Ven and again needs good kidney function.
I'm concerned that the NHS is going for the easy option of BTKi far too often. The future trend will be towards more double or triple combinations as 2nd lines, many will include BTKi and will be denied to those that have exhausted BTKi by progression or intolerance as first line. The answer to "what next" is at present and without additional novel drugs with different targets would continue to be limited to VenR and Ven mono.
• in reply toSkyshark
My kidneys could be better. As for the detailed reply, it is appreciated but it is mostly alien to me. I just hope I won't need to be hospitalised at some point.
Not what you're looking for?
You may also like...
Just joined
Hi, I am about to start treatment with acalabrutinib for my cll, I was originally told I would be...
Just joined group
Was diagnosed in 2014; had chemo & went into remission. Just started in imbruvica today. How long...
Hi! I am Chloe
I am as yet still undiagnosed and suffering from the "frailties" of the NHS with regard to being...
Hi,Just joined! hope to get some good info and chat!
Was diagnosed only last week,so its still a blur in my head what is happening,think every pain is...
Hi
I'm overwhelmed by the CLL diagnosis. Had a gallbladder attack that led to the discovery. It's been...
HI.
hi
Only God knows
Hi everyone, I've just joined up to this site having stumbled across it. I was diagnosed with CLL 2005 aged 45. 
I was diagnosed 8 years ago today
