I have had a bacterial infection since January. It includes about 40 wounds on my arms, legs, butt. My doctor insists that if i take the acalabrutinib that it will heal it. I've had cll for 6 years and have not been on any treatment. I read the front page of acalabrutinib's website and it said that if you have an infection dont start taking this until it's over. you might die. I also have shortness of breath and had lung problems and was in the hospital for 21 days. I almost died.
I havent started acalabrutinib and I know my doctor is unhappy with me. I dont know what to do. Any insight on infections and acalabrutinib would help.
Jeanie
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akajeanie1
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I notice you mentioned in a previous post that you go to the City of Hope in Duarte, CA. It has a reputation as one of the top cancer hospitals in the state. They have 3 doctors listed as CLL specialists: Tycel J. Phillips, MD, Steven T. Rosen, MD, Tanya Siddiqi, MD. Are you seeing one of them?
I do understand your fears but the thing is that you probably cannot clear the infection because of your CLL and the way it has ravaged your body. Reoccurring infections are usually a sign that treatment needs to begin (don't want to simplify it too much). I also had an ongoing infection when I started treatment last year. It was going on for good 5 months. I started O+V. The treatment had the same disclaimer. My consultant explained that she would not wait to begin because of a "chronic" ongoing infection, we needed to clear my spleen, nodes, blood, etc. to enable my body to fight the infection as without the treatment it was impossible. She also explained she would not start treatment if I were having fevers and extremely unwell but my "chronic" infection should not stop us. It made sense to me and I trusted her. I was monitored very closely and was unwell before I got better but that was to be expected I guess.
My doctor is at city of hope and he is a very esteemed doctor. With all my symptoms he concluded that the cll was getting worse. When I looked up the symptoms he was right. I am working with infectious disease in another university and am having good luck with omadacycline and azithromycin. It has been a long process on antibiotics and also IVIG treatment but i am almost there. I was in the hospital last October/November with respiratory failure, embolism and pneumonia. They did not ever find out what all of it was caused from. I believe it was the bacteria because it causes lung problems. It like leukemia gets into your blood stream. And it is prolonged and difficult to treat because of the Cll. I am also on blood thinners and on the acalabrutinib's website, it said that if you take blood thinners you could die. So I believe that it is the cll that is the base of the problem and my doctor is very renowned, it is very tough thing to go against his orders. I did run it by an outside onchologist that see's me for melonoma (which has not reaccured, thank god in 2 years) and he said he agreed with me. I am now having shortness of breath which is another symptom of leukemia progressing but I am also having not so good reports on my heart. So while I do have all the symptoms of progressing leukemia, I also have other conditions to explain them. I believe he's right but I am to scared to act because of the manufacturers warnings. I tried talking to him the day he prescribed it but before i knew it he had gotten a grant to pay for the co pay and ordered the drug sent to me. I am so grateful to him for the grant and feel so guilty I'm not doing it. I just dont know what to do so I rescheduled my appointment with him and am just eating better, juicing and getting CBC and differential test which I pay for myself. I guess I'm just looking for a miracle. Any insights would be greatly appreciated.
Akajeanie, you've had some very good advice, in particular CycleWonder 's tip to arrange a free video second opinion consultation with a CLL specialist through the CLL Society.
Please don't be put off by the manufacturer's warnings. If you look at any prescribed drug, you'll find similar mentions of potentially fatal reactions. What's important is that the risk is mentioned and quantified (what percentage and how serious the interaction), so that your prescribing doctor can evaluate your risk (from your health history) and consider changes to reduce that risk. That could be one or more of blood tests done more often, a change in blood thinner drug or dose and so on. We do have members on acalabrutinib who are also on blood thinners - it's reasonably common.
When we need treatment for our CLL, particularly if our haemoglobin and platelets are dropping, we may also begin having difficulty making white blood cells to help us fight infections. Antibiotics and antivirals (which are regularly prescribed where needed during treatment) can help, but it is only treatment that will clear out our bone marrow, so that we can better fight off infections ourselves.
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