Hi! As an 80 year old guy living (happily) in a rural backwater, I’m 100 miles of slow unpredictable travel away from my haematologist and the associated treatment centre. I have CLL with 17p deletion. I’m soon going to start acalabrutinib medication along with prophylactics etc. Does anyone know what percentage of folk being treated with acalabrutinib (Calquence) live nice undisturbed lives without side effects which require emergency hospitalisation during their treatment period? In my case, bloods, scans etc can be done locally and my communication with the distant haematologist will primarily be by video link. Obviously, in my perfect world, I would like to be simply adding a few more daily pills to my normal statins and blood pressure medication and having no need for emergency long-distance travel to my consultant and her hospital. Are there any data on what percentage of acal treatments are trouble-free or does anyone have an educated guess? Am I being naive or super-optimistic in hoping for a quiet future life?! Obviously the internet and medical notes focus heavily on potential side-effects and harms but is there a decent fraction of patients living quietly and smoothly without these? My local GP told me that, if I want high quality effective care for this chronic condition, I should consider moving house to the city. That somehow doesn’t appeal to this particular old hick from the sticks!
A simple life with Acalabrutinib?: Hi! As an 8... - CLL Support
A simple life with Acalabrutinib?
Fogey,
Acalabrutinib has been as easy for me as a multi vitamin but in the beginning they like to keep an eye on you and with any luck you can see the Doc every 6 months.
It can be a easy regimen.
Good luck!
Jeff
Thanks, Jeff. The perfect answer! But will that good vibe last?! Best wishes. Onwards and upwards!
Hi Fogey, Because none of us has the exact same version of CLL, you may want to include more info about your genetic markers. Four months ago, you mentioned having a 17p deletion. healthunlocked.com/cllsuppo... There have been many encouraging posts here about people with 17p doing very well on BTKis, and I sincerely hope that is the case for you.
I can understand not wanting to uproot your happy life. I wouldn't want to either. But it may be important to add 17p to the discussion.
Wishing you the very best
Thanks, neurodervish. You’re right. I’ll edit the original. Good luck to you and thanks again.
Acalabrutinib is better in terms of heart issues than earlier BTKs and many, many people do well with no heart issues. If it were me, I would develop a relationship with a heart doctor in case an issue does arise, such as Afib.
That’s sound advice. Thanks. There are no cardiac consultants near here but I’ll take my chances!
I'm the exception that proves the rule:healthunlocked.com/cllsuppo... I developed febrile neutropenia and severe pain within a week of starting acalabrutinib. There was no haematological expertise in the local hospital and they wanted to take me off acalabrutinib. Australia was burning with out of control bushfires (wildfires), so there were no hospital beds in my clinical trial hospital, some 400+km (about 250 miles) away. Smoke inhalation and heat stress patients were being observed by nurses in motels! It also didn't help that I ended up in hospital over the Christmas/New Year period when many hospital staff take annual leave, so it was difficult to contact my trial haematologist. My wife had to advocate hard to get me moved to the clinical trial hospital.
In retrospect, I was borderline for joining my clinical trial - my chronic neutropenia was being kept out of stage 4 by up to daily G-CSF shots. (I needed to wait a couple of months to start treatment, because the trial was on hold for a while, then I needed to wait a further month for verification that my blood test results didn't fall foul of the trial inclusion and exclusion criteria. By that stage my platelets were just barely above the >50 requirement, so I was falling out of the optimum treatment window.) I suspect starting the acalabrutinib triggered a rare, rashless occurrence of shingles which affected my trigeminal nerve. (I had another outbreak of shingles 18 months ago and the rash took 10 days to appear when I wasn't on an antiviral).
My turning point was the CLL debulking with Gazyva/obinutuzumab infusions. I sailed through the venetoclax ramp up, then went on to achieve uMRD4 (no CLL cells found in 10,000 white blood cells from a bone marrow biopsy). My blood counts other than my platelets, are now the best since prior to 2006, 3 years before I was diagnosed with CLL/SLL.
Hope for the best and plan for the worst - so I agree with your GP. It's good that you have video link contact with your haematologist, but make certain that if you do decide to stay home and end up needing an emergency hospital admission, that your haematologist has a say in your hospital care and can over-ride the hospital doctor with respect to CLL treatment related condition. I ended up staying near the clinical trial hospital for much of 2020, but that was when the pandemic hit and back then, we didn't know much about the risks of combination therapy treatment with targeted therapies.
Neil
Well what a rollercoaster adventure you’ve been on, Neil, but really great that you’re still alive, kicking, even rejuvenating and advising. Thanks for telling your story and for your advice. My local rural hospital has a UK Macmillan cancer support ward and the nurses are said to link well with the distant consultant so I think/hope there will be direct control from the latter. No way am I moving home. In the worst case, making 80 happily has been good enough for me. In the best case, I’ll have a year or two more enjoying nature not enduring urban pollution, noise and crowds. I assume, since you’re an authority on here, that there are no statistics on side-effect-free patients. I’ll take my inspiration from the fact that you’re the exception and Justasheet1 is the rule!
As neurodervish noted, markers are important, more so comorbidities (particularly heart, kidney and liver health, or diabetes) and that also influences the availability of relevant information, because people with less favourable circumstances can be excluded from clinical trials. You can't rely on anecdotal evidence from our community, because people who face more challenges living with their CLL are more likely to be active and post about their treatment difficulties. This trial will give you an indication of the likelihood of encountering serious events;
Head-to-Head Trial Confirms Acalabrutinib’s Noninferiority to Ibrutinib in CLL
ashpublications.org/ashclin...
Overall, side effects with BTKi treatment generally improve over time, with the notable exception of the risk of increasing blood pressure (hypertension). See the attached plots for ibrutinib side effects over 5 years.
I appreciate your wish to enjoy nature and avoid urban pollution, but unfortunately, you may face challenges getting prompt specialist access in a rural setting should you need it. I'd recommend having a plan in place to get you transported to see your specialist if ever needed. Have a bag packed with essentials just in case and the agreement of someone to take you there at short notice. Hopefully you'll never need to activate the plan, but having one in place is a wise insurance. Personally, having the equivalent of a Macmillan cancer support ward with haematological experience locally would have made treatment much easier for me.
Neil
Fogey , At a minimum, wouldn't it be prudent to make sure the Macmillan cancer support ward has G-CSF shots available, and to coordinate with your CLL specialist in advance for its immediate prescription if needed?
Neil, aren't you in your 60s and w/o 17p deletion?
I believe Justasheet1 is 11q unmutated and also younger. But even Jeff was very sick with pneumonia during his treatment (but mentioned being married to "a very good nurse who understands the whole scenario of my CLL").
My point is that comparing Jeff & Neil's experiences with yours may not be the most scientific approach. I'd want to hedge my bets as much as possible, especially given your age and genetic markers.
Thanks for that important advice. I’ll check up about the local G-CSF shot availability. And I do of course understand that we’re all different. That’s why my original question sought statistical data (which apparently don’t exist). Best wishes.
Yes, Neil, I will now create an emergency plan which will include a packed bag and a helicopter (see my final message below). Life is a lottery for every living being and those of us with CLL are amongst the luckiest. Thanks again for the published data and the advice. And good wishes for your future progress.
Did you experience trigeminal nerve pain/neuralgia? If so how long did it last, and how was it treated?
JM
I had extreme trigeminal nerve pain for around a month. I was started on an antiviral and a range of pain medications including panadol and some opiates, including eventually fentanyl. I got the most relief from the panadol and fentanyl, but they couldn't provide pain relief coverage throughout the day.
I can sympathize. When I experienced trigeminal neuralgia I had a couple teeth pulled under the dentist's protest before I figured out what was causing the jaw pain. Fortunately I only had a week of pain rather than a month. Amitriptyline was prescribed to shut down the nerve aggravation.
Hi Fogey - I did about 5 years on Calquence/Acalabrutnib (to remission - had to come off for a digestive reason) with no drama that was treatment related. I was in a clinical trial (Elevate-TN) so they watched me closely but other than petechiae (little red dots of skin bruising), occasional mouth sores, ripped up finger and toe nails (annoying but not dangerous - just keep them trimmed short), I had no issues with Calquence/Acalabrutinib. I would consider re-treating with the same medication when the time comes (I am just 62 so the time will probably come for treatment again) but this time - I would try the new tablet (vs capsule) form which can be taking with a PPI (proton pump inhibitor) for acid reflux. All the best to you on your treatment journey.
Hi DoriZett
Hope you don’t mind me asking if you are treatment free at the moment?
I was told by my consultant that Acalabrutinib has to be taken for as long as it works and you can tolerate and should the occasion arise that it can you longer be used then an alternative treatment would need to be started.
My bloods were all within the normal rage on last check but if any signs in future of treatment not working then onto another treatment according to hospital you don’t get time off these meds and you don’t get retreated with them
I had to stop because the Acala capsules cannot be taken with Prilosec (for acid reflux). I developed ulcers due to the reflux and needed the Prilosec. They were just developing the Acala tablets which CAN be taken with PPI (proton pump inhibitors) but I was in a clinical trial with the capsules and you can't "change horses mid-race" in a clinical trial. The 5 years of Acala capsules put me in partial remission (partial remission is is common especially for SLLers and BTK inhibitor monotherapy) so I am back in Watch & Wait. I am due for retesting in April/May so we will see if the the remission is still holding from November 2021. By the time I need treatment again - there are other options besides Acla but since Acala was still working for me and I was responding to treatment - theoretically - I still have the option of Acala when time to treat comes again.
That’s extremely encouraging, DoriZett. Just what I wanted to hear. All the best for your continuing positive journey.
About 1 in 5 quit Acalabrutinib due to intolerance by year 6/7. About 1 in 6 progressed by year 6/7. Then it's 2 years Venetoclax or Venetoclax + Rituximab (VenR). VenR is preferable with monthly infusions of Rituximab for first 6 months.
This says your target should be 89. It's a moving target, when you make it to 89, it moves on to 94. (It also says a 120 year old can expect to reach 121!)
Just to show how different we CLLers are - I was diagnosed with CLL in 1997 and also have a 17p deletion as well as grade 3a chronic kidney disease and bouts of mild atrial fibrillation but no enlarged lymph glands. I'm on BTK inhibitor Ibrutinib rather than acalabrutinib since late 2016, now at a low 140 mg dose and have not seen my haematologist in person for nearly two years - just a quick phone consultation to tick a box .I'm lucky to have been in a 'steady state' so far- blood tests within a reasonable range though not normal in all areas.
Hello Fogey one of side affects when you start is sickness so make sure you are prescribed anti sickness tablets. A suggestion to me on this site was to take my first tablet during my breakfast rather than before. It worked for me. I wish you well, try not to worry, everyone is different how their body copes with it.
live in London so haematologist only 30 minutes but appointments gone from monthly to 3 monthly as acalabrutinib did its job. apart from bruising and the occasional nose bleed no other side effects (although being on blood thinners does not help) now within a year I am in remission. just stay out of the sun to avoid secondary cancer- apparently fairly commonplace
Thanks. Good advice. Pleased to hear your positive story. Keep it up!
I want to thank all my new friends on here who took the time to give advice and describe their experiences. I’m even more aware now that everyone’s different and that therefore each of us experiences different kinds and degrees of side effects. There are enough positive messages above to encourage me to be generally optimistic. There are also enough warnings for me to be prepared for the worst. I will raise all these bits of advice with my wonderful CLL specialist. I will think about having an emergency bag packed and a helicopter on standby (this is available from the local hospital in emergency for transport to my consultant’s hospital). Also will investigate the nearest cardiac specialist, growth factor shots locally, taking the newer tablet form with a proton pump inhibitor, anti-sickness tablets and caffeine for headaches. All sounds like a big adventure but I’m up for it! And I want this forum as a big part of my support group. I really do appreciate your expertise, help and good wishes. Many thanks again.
I live a very undisturbed life. In the beginning I had frequent blood work, now going on 4 years I have blood work every 3 months. Bruising my only side effect. a slight headache in the beginning easily gotten rid of.
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