Hello, everyone. We are new here, family support and looking for some answers. Sorry, this may be a long post. tl;dr at the bottom.
Brief background. Patient is a male in his late 70s. About 7 years ago was originally diagnosed with CLL and treated and put into remission. Around July of 2023 the CLL returned. He was placed on Calquence and did not have as many (or any) side effects as his treatment years ago. The biggest side effect we saw was his breathing, he ended up getting placed on supplemental oxygen.
In November he started getting weak, not eating or drinking, and more difficulty breathing. After a week or two his lab value for his hemoglobin finally fell below 8 and the doctor ordered a blood transfusion. He rebounded dramatically and those symptoms all resolved pretty quickly.
We get labs every 2 weeks, counts have been pretty steady. WBC have been trending near the same figure after falling over the past few months.
About 3 weeks ago he started to have more weakness, diarrhea, and generally not feeling well. We thought it was a stomach bug, diarrhea came and went over a two week period. He had multiple tests run, no sign of any infections or anything in the stool. He got a liter of fluids in the ER about a week and half ago.
We thought things were turning for the better but over the last few days he has started to get hyper sensitive to cold (and by cold I mean air conditioning), super weak (moreso than in November), refusing to eat much of anything and barely drinking any fluids. The weakness amplifies on exertion, taking everything he has to just walk around the house.
Monday he was out to dinner and barely ate a bite of eggs, and went to eat a piece of sausage and immediately started to dry heave and gag. He recovered after a few minutes, refused to eat anything else and want to go home. The next morning he said he wasn't feeling well and wanted to go to the hospital. The ER ran all sorts of tests, labs showed a slightly lower hemoglobin and hematocrit value. Obvious dehydration from the labs. The ER ended up giving him 2 liters of fluids over his stay and he was finally able to urinate. They ordered a CT scan during his visit which showed wide spread lymph node enlargement as well as a suspicious mass near the adrenal gland which they believe was also a lymph node. Biopsy scheduled next week. The ER discharged him to follow up with oncology, who cannot see him until next Tuesday.
Wednesday brought another day of weakness and not eating much of anything. As he was sitting on the couch he complained of being cold and was shaking violently. He got bundled up and that resolved a little while later. His weakness progressed so much that we called his oncologist and spoke with an on call doctor who ordered repeat labs for Thursday morning, possibly looking at a transfusion of blood products.
Thursday morning came, had two episodes of diarrhea again. We went to the lab, they drew labs and his hemoglobin was lower than his normal, sitting at 8.5 (he's normally above 9, sitting around 9.3) and his blood pressure was lower again. His oncologist made the decision not to order blood products but ordered fluid therapy and repeat labs. After the infusion of fluid the repeat lab (drawn 30 min after the 2 hour infusion of a liter of fluid) his hemoglobin showed up at 7.1, but because the infusion clinic was closing soon they brought him to the ER for the transfusion (or we were to come back Friday to their clinic). The ER started a full work up again, after hours of waiting the blood counts came back and his hemoglobin jumped up to 9.0 so they said he didn't qualify for blood. But they made the decision to hold him for observation. The next morning the repeat labs showed his hemoglobin dropped to 7.8 so they finally ordered and transfused some blood. Later in the afternoon the repeat labs showed it moved to 8.4, and they decided that was good enough and discharged him to home.
The blood didn't perk him up like it had in November, much to our disappointment. And he is not feeling good, at all. But tonight when we got dinner he immediately started gagging and dry heaving, saying he can't stand the smell of food. He did not eat a bite of his burger. But he ended up eating a quarter of grilled cheese and some strawberries.
His oncologist recommended to stop his calquence until we see them in the office on Tuesday. They want to wait until a biopsy is done to see what actions to take next. Everything with his lab counts are looking good according to the doc. The WBC haven't spiked and everything seems to "be on course".
Is it common for calquence side effects to come on so late, could this just be the medicine? Is there any suggestions to get some better food and fluid intake? We just hate seeing him so weak and are trying to figure out what we can do.
Thanks.
tl;dr
Relapse of CLL 10 months ago, started on calquence. Within past few weeks multiple symptoms started appearing such as extreme weakness, not eating, not drinking, gagging at food, etc. Blood work showed slight anemia and dehydration but everything else was average for him. A whole blood transfusion didn't make significant changes. Is this side effects of calquence or something different?
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CuriousFamily
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Well... I'm on a different "ib" (clinical trial) but have been taking it for a year now and can say that some side effects emerged well after treatment start, and some others tend to wax and wane from time to time.
I have not had the severity of side effects you report, though I am a considerably younger patient. But my experience has been that as the levels of drug in your system gradually build up (due to half life decay) and make their way into different organs, they can trigger new effects. I had skin issues emerge months after treatment start, though manageable with supportive care.
However... you mentioned lymph node swelling being picked up on scan and it emerging near the adrenal gland. I don't believe that's a normal event in BTKi treatments at this stage.
My guess (not a doctor) is that something else is going on. Could be the CLL has developed immunity to this particular BTKi. Could be a concurrent new cancer emerging. But whatever it is is causing lymph node swelling, and that in turn is putting pressure on organs that are interfering with normal function.
One thing that definitely happens with CLL, at least pre-treatment, is lymph node swelling can affect other organs. Acid reflux and significant loss of appetite are known complications of CLL, caused by spleen or lymph node impingement on the stomach. So maybe it's something like that?
I'm sure it's frustrating and terrifying, but it sounds like your medical team is on the ball and will do the appropriate testing to sort it out. Hang in there. CLL is a complex disease and hits everyone differently. Your patient rolled some odd numbers on the wheel. But there are many options these days and hopefully they'll find a good combination for your case.
The first thing I would imagine a cll doctor would suspect when a cll patients hemoglobin drops to 7 is autoimmune hemolytic anemia (AIHI). AIHA is a well known complication of cll where people’s bodies attack their own red blood cells.
In addition to low hemoglobin, AIHA comes with a constellation of other symptoms. Almost all symptoms you describe can be associated with AIHA. Indeed, what you describe sounds so much like it could be AIHA, one would almost have to assume that his doctor has considered AIHA, tested for it, and ruled it in or out.
It still cannot hurt to ask his doctor if AIHA has been considered. AIHA is typically treated with steroids or rituximab or ivig or some combination of those or similar meds.
Below is link about AIHA and its symptoms. To be clear, I’m not qualified to give any diagnosis of what is causing all these symptoms or know if AIHA is in play. But having had AIHA, I do feel comfortable in saying that when people with cll have very low hemoglobin, AIHA is often suspected and then tested for. AIHA is not the only cause of low hemoglobin, our cll alone can suppress hemoglobin. I hope he improves.
No wonder he is cold and tired if he eats and drinks next to nothing. Agree with Jeff. This could be caused by AIHA. Steroids and Rituximab infusions are used to treat it if I remember correctly.
welcome to the group and so sorry to hear that all of his struggles.
Other non-CLL things could cause his symptoms. As a physician, the first thing that comes to mind is an esophageal stricture or ulcers, or hiatal hernia where the stomach can intermittently move up into the chest and esophageal area and caused both difficulty swallowing and difficulty breathing.
I would definitely recommend seeing gastroenterologist to take a look and see.
The other could be adenopathy in the mediastinum or chest that could be causing pressure on esophagus. When I was first diagnosed, I had this. A CT scan with IV and oral contrast could help sort that out.
As for the anemia, any number of things unrelated to CLL the most common of which would be some sort of bleeding in the upper and/or lower G.I. tract. Did they test his stool for occult blood.
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