Low body temperature and low grade chills on acalabrutinib.

[Belkin123]

I am on acalabrutinib since September 1st. My blood counts are moving in a right direction, but my spleen did not shrink much , and I feel fullness in my abdomen area. The other major concern is my low body temperature, sometimes 34 and below, (or 94 and below) .with low grade chills. Sharing experience or advice will be much appreciated.

[Pageboy]

Hi, I started Acalabrutinib in December and while I haven’t had the chills you describe I quickly had feelings of fullness and abdominal pain/tenderness. This was first thought to be my spleen but while it is still larger than normal it has gone down significantly. But the fullness persisted and so too pain / tenderness in my left upper abdominal area and constipation. CT scan showed nothing ‘nasty’. Long story short, it didn’t get better and I was losing quite a lot of weight so this month - ahead of more investigation- my doctor took me off for three days and then I took half dose for three days before back to full dose. It worked. The fullness reduced. It hasn’t gone completely and I still have digestive issues and have to watch for triggers. But it is better, I gained a kilo or two and if it’s the Acalabrutinib then it’s ok to live with right now as the benefits outweigh this negative. What does your doctor say?

[Belkin123 in reply to Pageboy]

Thank you for replying, pageboy. I am glad that your spleen is shrinking down, why fullness then?With constipation prune juice half a glass in the morning helps me. But at the beginning it was a big problem. It does getting better when the body adjusts. I also was on a reduced amount for a couple of weeks. Headaches bothered me only for a week or so.

Now those chills, might be not from the pills but from the sluggish thyroid. But it was checked and in range. So we have to hope for a good outcome. I wish you to get better soon,

B

[Pageboy in reply to Belkin123]

I think the fullness is a result of my digestive system being sluggish. Given what CBeauty says I would guess (not very scientific I know!) that it is a rare side effect of Acalabrutinib. I didn’t have the issue before and while I had fullness from the spleen growing, my body adapted somewhat. I’ve accidentally found prunes to be one of my trigger foods. I was eating a couple of day which helped initially. I stopped to take Movicol instead and returning to the prunes gave me pain/tenderness again so I’ve stopped prunes! Hope you get to the bottom of your chills and you feel ok.

[NoClew in reply to Belkin123]

Hi B, don't let your thyroid labs being in range fool you or your endocrinologist. I may have already addressed this, but before starting Acalabrutinib in 2016 in a trial, I was warned that the BTKs could run havoc with my metabolism. Boy did it ever, yet "by the numbers" my thyroid was just fine and nothing was done. It took over 3 years to get an explanation: the thyroid itself continues to produce the right amount of hormones as shown in your blood work, but they are inhibited (?my word?) from doing their job when they reach their intended target. This is where your metabolism is affected. I was exhibiting many of the signs of hypothyroidism - sluggish gut, gaining a hugh amount of weight, lipids went from great to very high, extreme fatigue, all over/migrating body pain, nails split to the quick, hair loss, chills, (sounding a bit familiar?) malaise & depression. I am still trying to find a great endocrinologist to try to work this out, but in the meantime I'm on an extended drug holiday and doing quite well. Hope someone finds a solution because it is a good drug.

[Belkin123 in reply to NoClew]

Thank you, tverickson, for your reply. I wish I have read your posts before I started treatment. You call it rose with a thorn. So it is. It might be definitely better than ibrutinib, but still it is not easy. I started some thyroid supplements with iodine and selenium, very small dose just to see at if I will not have a bad heart reaction. Are you still taking acalabrutinib?How are your blood numbers? Did you have spleen enlargement? How it is now?

My numbers are getting better, but I am not. Very fatigued and sluggish.

[NoClew in reply to Belkin123]

Stopped Acalabrutinib in Feb 2020 after my labs had been stable in good normal range for about 12 mos. As of today, still holding: HGB 14.4, Platelets 205, ANC 4.2, ALC 0.9 (peaked around 300 as my modestly enlarged spleen and nodes went back to normal where they remain) Yes, a rose 🌹. Sadly, 3 endos have given up, and the Cll docs don't get involved. Even off the acp I still get chills, then sometimes followed by heat flushes. Asked my PA about that again today, but got no response. Are you working with an endocrinologist? Medical professionals have become so highly specialized but frustrating when no one sees the big picture. Best, Trudy.

[CBeauty]

Now that you mention it...I initially lost weight on acalbrutinib, and 8 months later stabilized at my normal weight. But unless I'm careful with what I eat, I do get a bloated/gas/pain feeling in the evenings. I did not associate it with Acala, but perhaps it is a minor side effect because it did not happen before. For me I have to avoid all the usuals - sugar, gluten and then I'm fine and only experience it on rare occasions.

[Pageboy in reply to CBeauty]

That’s interesting. I was worried about the weight loss as it was ‘unexplained’ but it does appear to have stabilised thankfully. I’ll have to watch I don’t go too far the other way! I’m hoping the bloating will level out and I can learn to identify what flares it.

[CBeauty in reply to Pageboy]

My CLL specialist said the weight can also be explained as shedding the weight of CLL tumors! We carry quite a bit of weight in the spleen and such.

[Pageboy in reply to CBeauty]

Gosh, who knew?!

[Belkin123 in reply to Pageboy]

I think that normal spleen is small and weights only 200grams . I am wondering if enlarged it can be like a kilo?

[Belkin123 in reply to CBeauty]

Thanks, it gets better with time. Wishing you well.B

[Belkin123 in reply to CBeauty]

Thank you so much Trudy for that information. Couple of more questions. What is 3 endos which have given up? And how long have you been on acalabrutinib?Your results are amazing. But we are not just numbers. At the peak my ALC were 220 K, but generally I did not feel bad till my spleen started to enlarge, 5 years ago. I went to endocrinologist couple of times. It was in vain. They check the numbers and say : you are ok. So I am doing some research and decided to try supplements with iodine and selenium.

I wish you to have a long remission. And thanks again.

Bella

[NoClew in reply to Belkin123]

You are most welcome. This is such a great venue for sharing and learning. Sorry for my late night shorthand. "3 endos" referring to 3 new endocrinology specialists I enlisted to sort out the mysterious btk/thyroid/metabolism issue. They checked the numbers and said i was ok, too, then they gave up trying.Overall, I was on Acalabrutinib (ACP) for 3 and a half years, Started reduced dose of 100 mg 1x daily after the first 2 years and a couple of 2 to 3 week drug holidays. Trudy

P.S. I'm sure you've done a lot of research, but wanted to mention that years ago I was warned off selenium due to a solid tumor cancer, long before cll had even hit my radar. So I have no idea if it plays well with blood cancer. Supplement attitudes change too.

[Belkin123 in reply to NoClew]

True about supplements. A lot of them increase immune system, which comes to lymph nodes enlargement. I have to check on it. Thank you for the warning. It is like finding balance between the immune system and thyroid function. I am avoiding air conditioners, it means buses, restaurants, gyms, any gathering and so on. Walking 1-2 miles a day, and some stretches on a mat in front of my tv. If I will be lucky to find any supplements that improve my condition I will let you know. Thank you again for all info and advice.Bella