Met onc today who talked about my case with my old onc at MDA, they both recommended it’s time for Calquence because of the CLL being SLL now and the flareups not really subsiding like they used to (I would swell about twice a year, do methylprednisolone, and be fine for about 9 months). Now I’m fine for barely 3 weeks. I have an allergist appointment (at last) and want to wait and see if the shots help within 2-3 weeks or so, but hearing it’s “time” today when I was initially told 8-10 years before anything and only due to lymphadenopathy is kind of sad. Thankful it’s just Calquence, but still want to see if it’s another immune issue. It’s not right away, but I guess I needed to vent. Thanks for listening. This has always been a great forum.
Any side effect management I can do in advance from anyone who is on it? Do they go away within weeks? Thanks
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schmooth97
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I am Sue others will contact you as there are many on Calquence/Acalabrutinib. I am just finishing my7th month and it has really done a number on my labs. Yes, I have had a few side effects but they seem to come and go and only one at a time. This is a third line treatment for me in the 33+ years that I have been diagnosed with CLL. I also receive IVIG evert 4 weeks and I have never felt better.
I was told by the pharmacist that I could expect headaches but just 4 sips of coffee with caffeine would take it away and yes it does. I have always enjoyed my coffee but I now love my coffee. However, he told me if I didn’t drink coffee they would send caffeine pills.
I fully understand your concerns but you should be fine. Please stay in touch…..I am here for you!
I read your response to schmooth97 with interest. I just started ACALABRUTINIB on July 8th, was scared to have the headaches start but so far as of July 16th nothing. I do drink one coffee a day but will happily increase to more if the headaches start. Are you experiencing other side effects, I find fatigue and frequent bowel movements, is it the same for you? I would appreciate you taking the time to respond to me.
Thank you, I received your private message, unfortunately I am not really that great on the computer and how to continue to private message. I recently gave an update to the CLL community and my experience with Covid where I was hospitalized for 40 days. I am now on Acalabrutinib, so far after a week no headaches but fatigue and frequent bowel movements. How do you deal with these or how did you deal with these? I was on Ibrutinib since 2019 but my oncologist decided to switch me to Acalabrutinib which is much better to tolerate. I so appreciate any advice you can give me.
If you haven't experienced the onset of headaches with acalabrutinib/Calquence by now, then you are highly unlikely to have them. If they occur, that happens immediately you start treatment and they nearly always go away within 2 to 3 weeks. Caffeine, sometimes with a bit more help from Tylenol/APAP/Panadol/paracetamol/acetaminophen usually works to banish the headaches.
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Hey Schmooth! I started Acalabrutinib back in March 2022 and it has worked out well for me. I also had enlarged nodes and my spleen was bothering me as well. My nodes and spleen went back to normal size within a few weeks and I hope that happens to you. The only side effect I had was a headache on day 3,4 and 5. It was toughest right at wakeup but some coffee did help. That eventually passed and I haven't had any other issues since. I am now on month 5 with A. Good luck!!
Howdy- I have been taking Calquence since August of last year. When I started taking it, I had swollen lymph nodes all over as well as an enlarged spleen. Within a few days of starting Calquence, all swelling completely disappeared. It seemed miraculous. Also, in the beginning, I was concerned about side effects, but have had zero. I hope you are fortunate to have no side effects as well. After 10 months on Calquence, I feel back to normal and don’t really think about CLL every day. As I understand it is a very well tolerated medication for most people. I wish you well in your treatment!
HiI have been through Obinutuzumab and Ibrutinib at diagnosis , 18 months ago. I moved to acalabrutinib 12 months ago no noticeable side effects, my monthly bloods must be OK as no one has called from my oncology team. Living a full pre covid pre stage 4 CLL lifestyle. Keep safe.
My hubby is on a different treatment and doing well, but I noted your allergist comment and wanted to mention one thing. There is much lymph tissue in the nose and sinus area as well as tonsils and adenoids. If there are swollen lymph nodes in the neck area they can affect breathing and hearing and swallowing. My husband's were not terribly apparent to see....but internally they were affecting him strongly. The ENT didn't realize until doing surgery ( even after a CT scan) how extensively the SLL was involved. I would encourage your two specialists to consult. This all developed for him within 3-6 months but cll treatment made a difference IN ONE DAY, and has resolved most things within 6 weeks. He feels better than he has in years. May you have equally good reports in the near future!
So you’re saying to tell the allergist about the treatment and see if the pills work first? I have noticed I stop breathing sleeping when swollen but am fine when on prednisone.
Yes, your allergist should be alerted to the fact that your SLL may be a factor and that treatment may be immanent. Your oncologist should be told that surgery ( oops! Shots!) is being considered and treatment needs to be coordinated. One or both of them should have a thought about putting the cart before the horse!.. Edited to add; Cll and SLL are relatively rare. It is entirely possible that your allergist has never seen a case before.
I agree that schmooth97's allergist needs to be informed that one symptom of CLL/SLL is swollen lymphoid tissue, of which there is a great deal in our head and neck. The SLL presentation of CLL/SLL is where you see the lymphadenopathy with little to no presence of the cancerous B cells in the blood. Treatment could indeed reduce the swelling if it's due to the CLL/SLL cells and not allergy. There's an arbitrary threshold of 5.0 (5,000 in the USA) lymphocytes that was set as the threshold between 'CLL' and 'SLL' presentation. Of interest, that threshold was arrived at over a dinner discussion between the CLL/SLL specialists Kanti Rai (of RAI staging fame and from NYC), Thomas Kipps (from USC San Diego) and Terry Hamblin (from the UK).
After my latest relapse, post splenectomy etc, my nodes erupted with one the size of half of a tennis ball under my arm, I was started on Calquence. Within four days, the nodes were almost back to normal. I had the headache for a while, but coffee worked immediately to end them. Great drug and a tribute to modern medicine and the people willing to risk billions to bring drugs like this to market.
I started Calquence 3 weeks ago due to large lymphs. 2 weeks almost back to normal in size. Had a few headaches but they decreased in intensity and frequency over first 2 weeks. Mug of coffee cured them. I didn’t use the headache meds I was given. Slight headache in the morning now but again goes away with 1/2 cup of coffee. 2 very minor bouts of muscle cramps.
That’s it
I feel better and have more energy than I have in years! Pretty amazing
Oh and I do bruise more easily but nothing to worry about .
I do drink at least 64 ounces of water each day as directed and don’t have urinary urgency anymore as my spleen and nodes shrank it gave my bladder more room
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