I've been on Acalabrutinib (Calquence) for 10 days now. I did allopurinol for a week prior and told to continue with allopurinol for another 20 days and Calquence forever or until it doesn't work anymore. I went in with platelets slightly less than 100 and RBC almost in the anemic range. ANC not much of a problem at this point. Not having blood work for another week. Is it normal not have blood checked until 2 weeks after starting Acala ? is it normal that I feel a bit anemic? hands and feet cold, heart beating 3 to 4x times normal speed and noticing some bruising. Was told things would get worse before better. Don't have huge tumor burden but many lymph nodes swollen in crotch, arm pits, neck etc. ALC was around 200 when I started 10 days ago. I don't feel horrible, just very lethargic and lack of any kind of energy. How long (days, weeks, months) on Acalabrutinib before some of you folks started seeing improved blood #'s and how long/severe did things go backwards before blood started going in the right direction?
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A recent 2021 Pharmacy Times article mentions patients with cardiac problems are monitored weekly at start of therapy. So if you don't have this or other comorbidities, I can see where a doc might start with a 2 week testing. When I started ibrutinib, I didn't have a followup appointment the next week, it was weeks out. I did have side effects (nosebleeds), the docs responded promptly and got me seen sooner. So unless you are one of the low percentage of people having a severe reaction, IMO this seems reasonable for an initial followup. Acalabrutinib seems to have less, and less severe, side effects overall compared to ibrutinib. If you are otherwise stable, I don't think more aggressive monitoring is needed. If the lethargy gets to a severe level where it really impacts your ability to do ADL's like bathing, making/getting meals, dressing, or other daily life activities, please let your doc know. In addition to any potentially more severe side effect like bleeding.
YW! That's why I respond to posts that may not 100% involve me, if I think I have some baseline information to help someone, I post it. Because doctors or pharmacist or nurses can't always call back right away, even though they say "call or email if you have concerns".
While what Sofia has said is most likely the usual situation, I would be calling my Dr. in regard to what you are feeling--esp. feeling the heart racing.
While Acalabrutinib has a record of fewer and lesser heart-related incidents, it is not without such symptoms. Your best care for yourself is to report what you are experiencing. We are not all the same in many regards and reactions are individual to your specific system.
Also, it is very important that you drink all the fluids that are suggested--that will help to keep your kidneys and liver process the medications in an expeditious manner.
Checking with your Dr. can relieve the possible anxiety you are feeling around this new and unsettling experience of having treatment.
I started Acalabrutinib last August. At the start, I had very swollen lymph nodes and spleen. Within a few days all of the swelling completely disappeared. My platelets were in the 80s and after 6 months have never been over 100. All other blood numbers in normal ranges after about 3-4 months. At 8 months I had a PET scan and all lymph nodes and spleen were in normal ranges. I haven’t had any negative side effects. It seems to be working well. I wish you well in your treatment.
I’m not quite sure what you’re asking with “kicking in”. I’m about 90 days into Alcabruitnib and it seems the CLL is responding. Lymphocytes are up, but that’s due to them being released from marrow as they flush out of my system (or so I’m told). Side effects are higher fatigue ( which is a problem), bruising and some rash. Recheck due in about 60 days, but overall it seems to be working as intended. Best wishes
Thank you allCalled Nurse,I expected to feel worse before feeling better with Leukocytosis flush as you say. She said I'm likely more anemic than I was but won't know until CBC next week. As this flush happens she said expect fewer healthy normal RBC's as well due to crowding and that this likely is accounting for feeling so tired/anemic. My heart only seems to palpitate strong and fast at night, it's not constant. My platelets were 70 when I started BG years ago and plummeted to the teens before coming back to the low 100's after a couple years where they stayed for many years. Sure hope they come back when marrow get's cleaned out. By kicking in I meant at what point does the ALC start going down instead of increasing from the flush
In recommending commencing starting treatment when haemoglobin drops below 100 (healthy reference range about 120 to 150 for women in the USA), CLL treatment guidelines allow a buffer for the anticipated initial drop in haemoglobin when you start treatment. That should minimise the likelihood of needing a packed red cell blood transfusion if they drop below 80. From personal experience, keeping fit helps you manage a lower haemoglobin count without getting as tired or breathless on exertion.
I've been back on acalabrutinib for 7 days now, following a week off due to fever spike. I lasted a mere 6 days before that, so 13 in total.
I'm not sure about side effects - no headaches or anything. Following my diagnosis in March/April, I had a very sore/inflamed rib cage, which was settling after I was prescribed Vitamin D for a deficiency. However, the inflammation has spiked up over the past couple of days. I understand that could be an acala side-effect, hopefully temporary. I have become more anaemic in the past week and will have a unit of blood on Thursday because I'm feeling a bit washed out. I understand that this too is fairly normal at this stage. I'm just hoping to have a clear run at the treatment without further interruptions. On the upside, the nodes in my neck went right down after around 3 days on the drug. My next consultant checkup will be next week, 2 weeks after the last appointment at which I was authorised to re-start the acalabrutinib.
Best of luck with your treatment - it is nice to know someone else is just starting out like me and has similar questions.
I didn't have and don't have noticeable side effects to my Acalabrutinib. My WBC reduced dramatically within 4 weeks and from being 250 in August last year, it is now 11.7. It reduced to 175 in the first four weeks I had Allopurinol for three months and only noticed a slight headache in the morning, following advice here, strong tea or coffee helped that.
I have been told that I shall take Acalabrutinib for as long as it works so guess for life.
My neck nodes disappeared within days and a recent CT scan showed no obvious internal swellings.
Hi, my lymph nodes started to reduce within about 2 weeks and after 4 weeks they had gone down significantly and continue to reduce which is now 6 weeks after restart after I had covid. My only side effects were mild headaches for the first 2 weeks, however they went and I don't have any at all now. Palpitations can be a side effect and I was told if I got any to contact my consultant hematologist ASAP. I continue to take a minimum of 2L of water a day and I was told 3L for the first week and like others have said the blood results do change but should get better in time as the blood flushes out the Leukemia cell as they dislodge form the bone marrow. Hope this helps but do raise the palpitation with your consultant or GP, good luck stay safe and let us know how you get on🤞
Hang in there. I started Acalabrutinib in February and I get labs done every 30 days. I felt quite fatigued before and after I started Acal. Went thru a few side effects but it levels off after a while. Stay 💪🏼🍀
I also started acalabrutinib recently...2 1/2 weeks now. My oncologist monitored my blood counts (CBC) and did a complete metabolic panel (mostly to check uric acid) every other day for 2 weeks. Just this week, I graduated to twice a week. My white count was much higher than yours when I started, but my RBC and platelets were about the same as yours. I should also say that I only started on a half a dose along with allopurinol, and will remain there as long as it continues to work.
I was told that it could take a month of worsening blood counts before they start to get better, but mine started to improve this week (2 weeks in). The numbers get a little scary before they get better, and there can be a little up and down even once they start to improve (if my situation is any indication). The one thing they continue to stress is to drink plenty of water (3 quarts to a gallon a day for me).
They have also said that the RBC (hemaglobin) are the last to return to normal, and if they got too low, a transfusion might be required. I'm not a doctor, but the anemia could be causing the lethargy. What I was told was to watch for shortness of breath, heart racing, and not being able to do the same level of activity I would normally do. So I think making a call and perhaps asking for a CBC would be reasonable.
It's good to be your own advocate, because you are the only one who knows how you feel. Best of luck to you!
Just to add for our non-US members, a US gallon is 3.76 litres whereas the British imperial gallon is 4.55 litres. It's important during treatment to drink sufficient water and other fluids to keep your urine light straw coloured. How much you need depends on ambient temperature/humidity, activity level, how much water you ingest in your food, etc. If you are putting on weight, you are drinking too much. Typically you need to drink about 2 to 3 litres per day. It's particularly important in the initial weeks of starting treatment, when your liver and kidneys need to manage what can be a rapid die off of CLL cells, which is where the allopurinol helps.
Hi, could you expand as to why you take just half a dose. I can’t see any details in your bio. Seems you started on a low dose?, but would love to know the circumstances. Thanks so much
After reading all the side effects, and knowing how well the acalabrutinib is at clearing the bad cells, and especially considering how high my white counts were prior to statring treatment (close to 700k) I felt more comfortable starting with half a dose, in order to potentially reduce the risk of tumorlysis, and other negative side effects. My doctor was comfortable starting there since I wasn’t nearing critical range with other blood markers, and it is still working beautifully to reduce the bad cells and prop up the good. I hope this helps.
I have been on Calquence and allopurinol for 7 weeks. I started therapy because of seriously bulky lymph nodes in my neck, chest and groin. One node in my groin was the size of a small lime which blocked blood flow to my right leg resulting in a blood clot. I had a CBC one week after starting Calquence. My WBC and lymphocyte count increased by a factor of 4.5. Two weeks later both decreased by 1/3. So expect a large increase in your WBC as Calquence draws cancerous lymphocytes out of your lymph nodes and bone marrow and into your blood stream. Initially, I had joint pain and small bruises. Now I have no side effects, my lymph nodes have shrunk and I feel good. I have another blood test on 5/12/22. In my case, everything improved with time. Hopefully, it works that way for you.
I'm 57 and in pretty good shape, my resting heart rate is always in the 40's. So when it climbs up 120+ when I'm just laying around it's concerning. Have blood work and Onc visit Monday.
When you mentioned "heart beating fast" I assumed intermittent. If it's sustained, you might want to see if your doc can get you a Holter monitor for over the weekend. Especially when it's occurring just resting! Or get an EKG, if it's occurring a lot, you ought to be able to capture it. Occasional bursts of tachycardia may not be serious, but with you reporting these are long periods of over 100 beats per minute, I personally would do something before the weekend if possible. It's uncommon for severe cardiac side effects to present in otherwise normal people, the cardiac patients are the ones who experience them the most. But it's not impossible. Especially if you perceive irregularity or fainting/feeling dizzy. Then again, my dad died of a heart attack at age 47 so I am aggressive about pursuing any cardiac type symptoms. Do you have a Kardiamobile? If I ever get put on a BTK I can tolerate, I am going to get one. Potential cardiac stuff presses my personal panic buttons, because of the family history.
No Doc appt until 5/31 Been on Acala for 20 days. ALC has gone up to over 200 from under 100 so assuming I had a lot of bad B cells hiding out in my nodes . ANC actually went way up, Platelets a bit lower but not to bad in the low 80's and RBC low 3's now from low 4's. I have one more allopurinol tablet and wondering if I need to continue. Hydration is getting tough, seems like my kidneys are in overdrive and I'm running to the toilet every 15 minutes. My IgA is way low but not single digits, IgG and IgM basically non existent. I'm hoping to hear that this is all normal and part of the Acala journey. Not enjoying the heart palpitations, headaches and lethargy. Believing that the tide will turn in a month or so.
Unless the allopurinol is giving you awful side effects, safer to continue it until the tumor load is down IMO. I stayed on it until my lymphocyte count was under 30. How long have you been having urinary urgency, compared to when you increased your fluid intake? That's something that might need to be reported to the doc sooner. If it's only been a week or so, know that it will pass as your body adjusts to the "new level" of increased fluid intake. How is your diet, I am wondering if you need to eat extra protein/micronutrients. You are expending energy dealing with the CLL/effects of the drug, and may need a bit more nutrition to continue to make serum proteins as well as new neuts, new RBC's, and more platelets. Whatever food intake worked before, may not be sufficient during this "active treatment" period. At least, initially.
Urinary frequency has been an issue for me ever since I did the chemo/allopurinol ting 6 years ago. I started taking tamsulosin a month ago and it seems to help. Was contemplating having a Uroflift done but not sure that's in the cards anymore until I get stable with Acala. I'm 160lbs and I drank 4 to 5 liters years ago during chemo. I've been trying to get at least 2 to 3 liters lately but it's not easy
Since a UroLift is minimally invasive and doesn't involve traditional surgery, I am not sure why it can't be placed. If your platelets are high enough that you can safely have blood taken without oozing, it ought to be OK to have the implant. Then perhaps you can stop the tamsulosin, and drink normally again. Knowing your weight without a height/BMI makes it difficult to determine if weight is a factor. Being 5'2" would possibly have a doc more hesitant than in someone 5'8" at that body weight. A large amount of internal organ fat might make the implant ineffective, if there is too much pressure within the internal organs.
That 160 is at the end of the day. I'm 5 9" been lean all my life, eat like a horse and have to work to get enough calories in my body. Doc said (via nurse who said he looked at my labs) no need for more Allopurinol which surprised me, tonight will be my last pill. Seeing Urologist on 5/27 for evaluation/consultation. Next labs and first doc visit is 5/31. I notice now that the heavier headaches & heart palpitations aren't constant but random now (can be pretty intense). You're so correct about the diet! For me it has to be impeccable and continious or I feel it even more so now. If my labs improve or are at least level off, I'd like to see family in Europe ( I live in America) this summer and then do the Urolift anytime in the fall. I know my Doc is gonna say don't travel. The protocol for my local cancer center is 100mg/2x daily, labs after 2 weeks and then again at 4 weeks with PA visit. Far cry from all wonderful attention I got during a trial years ago. I could have gone back to the specialist who did the trial but he's 8 hrs away and I don't wanna travel anymore. Thank You so much SofiaDeo 🙂
When I started Acalabrutinib for the second time, I also had a heart rate that was higher than normal just upon normal exertion. But I think that was because my hemoglobin was pretty low after failing Venetoclax. As my hemoglobin slowly rises (after 6 weeks on Acalabrutinib), my heart rate seems to have normalized. My doctor told me that hemoglobin and platelets are the last blood values to improve…..which I think is true since the awful fatigue, faster than normal heart rate and bruising seems to be lessening. Good luck on your treatment!
I just started Acalabrutinib and my consultant won’t be doing bloods for 4 weeks , don’t know if that is a long time . Seems long time to me before first check
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