I survived stage 4 CLL because of calquence. I could tell you more but I am super busy enjoying my life again. Please do the same and just ask your doctor for an anti nausea medication called dronabinol and have fun and drink a lot of water until your platelets and hemoglobin get back to normal. My hands and feet still itch so f’ing bad if I don’t take hydroxyzine 25 mg every 3 days now instead of 2. Only take these meds as they are intended as one pill will suffice at night for each drug. Do not drive with any of the meds I just spoke of. If you feel a lump in your throat get it checked. My first oncologist said I was going to live for 5-10 years 3 years ago and I almost died in April. Calquence saved my life and hopefully it will save yours too. -Brian
Calquence, please continue taking calquence. I... - CLL Support
Calquence, please continue taking calquence. I love you calquence once a day! You keep me smiling. I hope you take it too!
Congratulations, Brian. My first doctor gave me 6 months. If I had stayed with him I’m sure it would have been six months. So glad you’re enjoying life. I feel the same way about Ibrutinib. Have a life filled with joy and adventure. Sally
Yay! Sally! So happy to hear we both made it. What a gift every day is! Congratulations to you too! I had a doctor who was the worst. Then I got a referral to see a specialist Dr. Paquette at cedar Sinai and he is very knowledgeable. It took 45 days of calling my insurance company every day for an hour to finally get through to the director to approve the appointment with Dr. Paquette and the pills are extremely expensive which is thankfully covered. 
keep smiling! -Brian
I'm about to start calquence in about 1 month. In dreading it with passion, but I know its either that or die. My fear is how my body will react to it I keep thinking side effects. (Every day) even though we all different, I thank you for posting this. Im glad it worked for you. Are u still taking it? Any side effects?
I have been on it for almost 7 months. Any side effects I might have had were nothing compared to the thought of not being able to see my 5 year old son grow up. I didn’t notice any side effects like headaches because I also take an oxycodone 5mg pill once a day. I always get headaches so that was not a worry and if it happened I would just take one pill and pain was gone. Internal medicine doctors will give cancer patients anything when they are near death to numb the thought pain of being on death’s door and no way to stop a blood clot or help me breath another breath when I could barely take a breath or walk a few steps. I am not in bed anymore and live life like I was never even sick for the last 3 weeks. You will smile more be more outgoing and want to be a part of this world. I disappeared 8 years ago and never let anyone know I was sick and now I am starting to tell people that I had cancer and can share my story but before I just wanted to keep everything to myself. I never even knew about calquence pre code blue in March and was coming to terms that I will be gone soon…so when I first heard there was a pill I could take it was like finding the holy grail that brought everlasting life I said whatever it does as in side effects I do not care as long as it will help me. Anyone who complains about headaches on here just needs to find a pressure point on your inner palm thumb section and put pressure on the pressure point for migraines. Or just ask your doctor for the good meds and take it easy for a few months if you can. Take out a loan and relax. Have fun! Don’t forget to take it once a day at the same time. You will be fine and any and all stress will be gone of this cancer you have say goodbye to it everyday and say I will beat it! Haha! Start taking it sooner if you can as there is no sense in prolonging the wait to stop the cancer from growing especially if your platelets get lower as it can cause brain damage below 10. I had an 8 and below 20 for a week even with blood transfusions it just wouldn’t go up anymore. If it’s because of authorization talk to the director of your health plan every day. Demand the care you need as no one will help you but yourself. Drink lots of water every day!
thank you for sharing your story, I see that you're only 41. How long have u had cll? I am currently struggling with anemia as my red blood count is low. Im at a store shopping with my mom and had to sit down. It makes me sad to be this tired and I can't do much but lay down. I can't wait to be myself again and live life😢😢. Sorry this makes me cry. Being sick is awful. The only thing I ask for is health and nothing else. I never thought I'd say this but I can't wait to be me again. Have u ever had a bmb? Im getting one on the 25th😬.
I have had it for 8 years. What are your hemoglobin and platelets? Get some blood transfusions at the er if they are below 40 for platelets and below 7 for hemoglobin. They have to admit you if they are. What is a Bmb? also go to a green juice place and a spinach and beet juice. Also buy a bottle of floradix from Whole Foods or a similar shop that has it and take it as prescribed. How old are you? You should be resting as much as possible. If you are getting extremely irritable/ can’t walk at all for more than a minute or walk up a single flight of stairs that means you are getting near the end and need to seek help at the er asap.
BMB = Bone Marrow Biopsy
Interesting points with regard to ER guidelines for transfusions. More specifically, CLL requirements for transfusions, which may vary slightly depending on the CLL guideline being followed, are:-
Haemoglobin below 8 grams per decilitre (or 80 grams per litre). Below 6 there's a risk of organ damage.
Platelets below 10 x 10^9 per litre or below 20 if you have an infection. (Healthy range is 150 to 450.)
We need to be careful with iron supplements, because there's a risk of hemochromatosis - iron overload. About 10% of the US population carries the gene for this condition. We have a few members dealing with this and the treatment is blood letting. (It would be donating blood if it wasn't for the fact that we aren't accepted as blood donors with CLL) The problem with CLL and hemochromatosis, is that we are more likely to need red blood cell transfusions to help us through anaemia. If we've been supplementing with iron, we have less leeway before it shows up. Also, with CLL, anaemia is more likely due to CLL infiltration of our bone marrow, auto-immune hemolytic anaemia or our enlarged spleens filtering out our red blood cells ahead of their time. B12 and folate deficiencies can also cause anaemia.
Neil
hi Neil dr Lamanna told me that the anemia will be corrected with treatment. I hope it does. What is hemolytic anemia?
Hemolytic anemia is the rupture or destruction of red blood cells, which with the prefix autoimmune means the destruction is due to our immune system killing our red blood cells. Taking care of our CLL means that's one less thing to worry about.
😃👍👍
Re: a hemoglobin level of 7, it's one of the factors used in determining the need for blood transfusions in an ER setting in the US:
pubmed.ncbi.nlm.nih.gov/272...
A meta analysis was done, and it was determined that there was not a clinically significant difference in adverse events as well as outcomes from treating Hg 10 or less, compare to treating 7 or less, so 7 is the newer recommendation.
But this number is referenced with regards to *urgent* ilnesses causing a sharp drop in hemoglobin. I am not sure where us as CLL'ers might fall on this spectrum, since ours is a chronic reason for the drop. I imagine the ER doc might call one's hematologist, and be guided by that answer. Slow decline due to illness generally is thought to be best treated by treating underlying causes, not serial transfusions.
SofiaDeo and CLLStage4survivor , it would make sense in an ER setting to avoid the risk of transfusions where they aren't necessary. I don't know where the CLL specific limit of 8 arose, but it makes sense that a higher threshold would be used when the haemoglobin count in most cases would continue to fall, either due to progression of the CLL or the effect of treatment.
Hi Neil , just had my second blood transfusion last thursday ... when my hemoglobin was 7.1 no transfusion ... when my hemoglobin dropped to 6.2 i had 2 transfusions 6 days apart . platelets up to 21 now , white blood cell count 1.4 .... yes that is correct .. here in the states a low normal WBC count is 4 .. so my bone marrow is on vacation ... it seems like the calquence worked on all my blood cells not just the B cells .... i'll find out wednesday what my hemoglobin is .i suspect i will need another blood transfusion ....i am feeling much better now .though ----... I thank God for the folks who donate the blood so we can stay alive . i'll post a more detailed update mid nov. james
wow u were really young at diagnosis, I'm so sorry. My platelets are at 219 my hemoglobin are at 10. Floradix? Im a 53 year old female. Diagnosed 5 years ago. I can walk and go up the stairs but throughout the day if I have to stop and rest. I have an organic health food store here where live and I do get these juices from there🙂 thank you.
I'd like to reassure you, I've had 3 BMBs, two by docs and one by a nurse, all painless. In fact the nurse and I were chatting away and when she told me the procedure was over I thought she was joking and hadn't started.
In each case I felt some pain in the hip later but not enough to keep me awake at night, hardly worth taking paracetamol.
I had three bone marrow biopsies. The first was in 2019 when I was diagnosed and I was at 70% blast. I then got one in November 2021 and it was a dry tap. The third and final one was 10 minutes later after the doctor looked in his book at what to do with a dry tap and he asked if he could do it again. I agreed but knew at that moment I needed to see another oncologist because he was not right for me. He even told my parents info about my condition before he told me which is against regulations. I grinded my teeth again during the third procedure, made a loud noise and listened to music on my headphones as loud as I could so I didn’t have to hear the horrible sound of metal on my bone again. Take a pain reliever like Tylenol or advil 20 minutes before you get it. Whatever one they recommend. It will hurt and be sore for a couple days. The only thing is to try to cover up the sound as it will make you cringe. If they get a dry tap “no blood” I would not recommend you do it again as it will just cause more discomfort and annoyance. If they do get a dry tap and want to do it again you might want to get a new oncologist. Also you want to ask if you are making mature rbc’s still or if they are immature. If they are immature you may need treatment sooner. I kept on getting 3 rbc’s and 3 platelet transfusions every 10 days for months as hemoglobin kept going from 8 to 5 and then again 7 to 5 and then 6 to 5 and then I was code blue/nearly dead in March and they were banging on my chest because my blood pressure dropped to about 40 over 60 and then I blacked out and closed my eyes. They admitted me for 10 days and then I saw my new oncologist 4 days later after being discharged and he said we have a pill we want you to try. It’s a miracle of science and I hope it will work for you. Again this is only my case and it may not work one day but I am grateful for the life extension. Good luck and do not fear anything anymore. The longer you can smile the happier you will be. It is how you perceive your present moments that makes them what they are. Enjoy living this painful slow and restful time as it will improve for you soon with treatment and if it doesn’t there is no sense in complaining about it unless to chimney sweep the tension and feelings which is natural. It’s always best to talk with someone and let it out. Cry on your family members chest and listen to their heart beat to share moments together while you still can. Make videos for your future self to remember what you are going through. Take photos of yourself and email them to your future self. You will be fine and laughing about this soon saying I beat cancer and you will be reassuring the next group of people just like I am. Be well and stay positive keep smiling through the bad times as they will soon be long gone. love, -Brian
thank you very much Brian 👍.
CLLStage4survivor, thank you so much for your post! I'm 73, diagnosed 2 years ago, doctors guessing I had it 2 years before that. Oh, well, so much for the guessing, it is the NOW that matters. I hope to never need treatment like any of us, but your wonderful uplifting words lessened my anxiety to treatment if needed. 🙂 Sandra
I had a BMB 2weeks ago, it's uncomfortable for the most part, and painful for a short time. My advice is grit your teeth, concentrate on not moving at the crucial moment and think about what youre going to do later. I am glad I had it done now as it has given more detail of what I have and what treatment I need.
Good luck
i feel bad for hijacking this post. (Sorry Brian)Thanks lemonbutterfly. Love your profile name.
interesting that you take it once a day, I take mine twice a day 12 hours apart.
i just started last week, had 3 days of feeling really bad. However, a tip from this site I now take the morning tablet in middle of breakfast, rather than before or after. Also I was prescribed a stronger anti sickness tablet. With both these changes I am now able to carry on as before. Doing housework, going for a walk. Hope that helps, but bear in mind everyone is different.
thank u, I can't take the way ive been feeling lately😢. It's horrible to be sick. Im so depressed.
it is horrible being sick but I was prescribed a stronger anti sickness pill than I had been taking and I havent been sick since. Can you go back to your doctor and ask for one? Also I take Calquence during my breakfast meal rather than before and that also helps. Hope you feel better soon.
i haven't started treatment yet but will soon.
Glad it is working so well for you. Unfortunately for me acalabrutinib has stopped working after 8 months.
how many treatments have you had? What are u on now?
Calquence is my first treatment, started in March. I have an appointment next week with my CLL specialist to discuss the next step. My ALC is going up and my hemoglobin is dropping.
I’ve been on Acalabrutinib for 18 months. While most of my numbers are just below normal, my ALC has been stuck in the high teens. Essentially, I’m treading water with Acalabrutinib. My cll specialist thinks that when my numbers start to increase again, as he expects they will, hopefully Pirtobrutinib, a third generation BTK inhibitor will be available (now in clinical trials) to take over.
You might ask your cll specialist about Pirtobrutinib (LOXO-305) next week. There are lots of posts on Pirto on this website.
Good luck!!
I started Calquence 3 weeks ago and am amazed at the results. After 2 weeks the minimal side effects disappeared and my energy has returned. I love that I feel like doing things again! So, I too, am singing praises for Calquence.
congratulations!!!
I also started Calquence about 4 months ago
I feel great. Only side effect was headache cured by a cup of coffee
I just took up scuba diving and went for my first dives yesterday
I wish you all the best
I noticed that you wrote "I love you Calquence once a day" Am I correct in assuming that you don't take 2 pills (one in the morning and one at night). Please clarify. I want to reduce my dosage to one pill 100mg. Would appreciate a response. Thank you.
I have always been given it once a day as my doctor says I don’t need more medication as it is working fine for me. I usually miss one dose a month as sometimes I am forgetful. So I wait another day to take the next pill around the same time 8 am
Thank you for your response. I definitely will ask my oncologist if I can reduce my dosage. Hopefully my blood test coming up in Nov. will allow me to do it, by then I will have been on Acalabrutinib for 4 months.
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