Calquence Question

[schmooth97]

I’ve been on Calquence for 2 weeks. Do the lymph nodes just go down to nubs or do they go away to where you can’t feel them? The bulky lymph tissue in my armpits is getting smaller and back to individual nodes now but not gone. Ones in my neck are down about 98% except for ones on the sides. They still feel the same (not bulging out). I wanted to know what to expect. My ALC was also 5600 when it was in the 2000s-3000s before. Is this from them being pulled into the bloodstream? I am getting the pinhead red bumps and bruises that improve or go away in about 3 days. Thanks!

[country76]

I believe mine are gone, I can not feel them. I started with Ibrutinib however the Alacabrutinib reduce my WBC lower. Seems like it works better for me with less side effects.

[schmooth97 in reply to country76]

How long did it take? I assume more than 2 weeks.

[country76 in reply to schmooth97]

I am sorry I don't remember how long it took, I started writing everything down however became side tracked. Probably within the first month. I had a very large spleen that I could feel and most nodes I could feel were in my neck. My wbc dropped to the teens and when I started Alacabrutinib wbc dropped to 8 and 9. Everyone is different.

[Pageboy]

I think mine are gone, though I don’t press around too hard just in case! For me - and this is not true for everyone - they surge back way too quickly whenever I have taken a break from the acala for other medical procedures. They go completely again within a day or two of restarting.

[uide3095]

Hi, mine started to reduce after about 2 weeks, I could feel and see them in my neck and groin as well as in the side of my face and just below my collar bone and at the very top of my back, they all gradually went apart from a couple but after a month of not checking and forgetting about them when I did. checked the small ones they have completely gone back to their normal size. Like you my Lymphocytes trebled when I first started but now are back where they were when first diagnosed, although they were never high (only at 7) as I have the SLL variation as I looked like a bull frog 😞, After 9 months and having to stop when I got Covid after 6 weeks from starting I feel normal, am back at the gym and been on holiday. I also have the 2 mutations so am very pleased with the results so far.

We are all different but it sounds like your heading in the right direction.

Good luck and stay positive

Will

[schmooth97 in reply to uide3095]

Thanks. I have the SLL version too.

[AntonMB]

I am currently 8 months in to treatment with Acalabrutinib, having previously achieved partial remission with FCR in 2018. I did notice my lymph nodes reduce significantly and quickly with the Acalabrutinib, I can no longer feel them at all but don’t recall how long into treatment that happened.

My 6 month CT scan stated-

‘excellent partial response to treatment with near complete resolution of lymphadenopathy in the stations demonstrated previously above and below the diaphragm. A few non-enlarged nodes remain in the retroperitoneum of the abdomen.’

Prior to treatment the CT scan stated-

‘Extensive new lymphadenopathy is present throughout the imaged area including cervical, supraclavicular, axillary, mediastinal, abdominal, pelvic and inguinal stations.’

So although I can longer feel any lymph nodes there was evidence of nodes still being present at six months, but the majority were not detectable.

[uihwki]

In 6 weeks mine had returned to normal. I've been on acalabrutinib for 4.5 years. Due to several serious injuries I've had to take breaks of up to 2 weeks from acalabrutinib. During that time the lymph nodes have not enlarged.

[jonathan7176]

Mine disappeared to view and touch in less than a week on acalabrutinib.

[Ibru]

My husband has been on ibrutinib for 8.5 years. All nodes are gone except one in the armpit which you can still feel slightly. It was by far the largest. The doctor says it is probably "scar tissue" from it being so large.

[schmooth97 in reply to Ibru]

ahhh

[Curling123]

I could have writtten this post word for word. I, too, started A on Acalabrutinib two weeks ago. Have red pinheads on forehead and a few small bruises, plus nodes reduced considerably in size within three days, but have not completely disappeared. Others on this site who have taken Acala longer than we have can perhaps answer our question. Sorry I can’t be much help.

[NaturalWaze]

I’m almost done with V+O treatment and all my lymph nodes went down completely except for one under my armpit. Dr said sometimes there is scar tissue that never does down, and that’s what this is. When doc “rolls it around” in exam, feels to me like a little pebble.

[Paddycakes0413]

My lymph nodes were terribly swollen. Within 6 months on Calquence all my lymph nodes are back to normal.

[DoriZett]

The lymph nodes do go down within weeks on Acalabrutinib. Mine were no longer palpable within a month or two. They are still not "normal" size (by CT scan) due to scar tissue as another mentioned, but I can no longer feel them. The blood counts will go up as the cancer cells are leaving the lymph nodes and going into the blood stream to be eradicated (yah!!!!) Your labs should get closer to normal in time. The pinhead red dots are petechia, and are harmless if you aren't a swimsuit model! 😄 I was on Acalabrutinib for almost 5 years and it worked well for me. Wishing you the best in your treatment.

[CCgroup]

I had lymph nodes all over before ibrutinib. Once I started on ibrutinib it took 6 weeks, but after that they were totally eliminated. That was more than 2 years ago and they have not come back.

[schmooth97]

Thanks, everyone. I feel less alone. I just want these headaches to stop now.

[Teemed]

I started 3 months ago

Lymph’s went down and away in about a month. Headache went away with a cup of coffee. After 6 weeks no headaches