Is Calquence helping you with Lymphoma?

[Keptindark]

I need patient reviews for Calquence. I have Mantle Cell Lymphoma, been through RChop (bought 4 years), could only tolerate 2 infusions of Bendamustine w/rituxin (bought 2 more years) and now DR wants me on Calquence. I suffered horrible migraines for 20 years when younger and am worried about headaches and bleeding. How are you all doing on this medication? I have to do *something*. Cancer is back with a vengeance...

[Hidden]

Imbruvica or calquence could be used. although calquence causes less afib-headaches seem to come up more with calquence.

if headaches is more of an issue maybe imbruvica?

[Keptindark in reply to Hidden]

Thank you for the feedback but since bleeding events are higher with imbruvica, Calquence was probably the better choice.

[sllincolorado]

I agree with IVFN that people on this site have had headache issue with calquence. Personally I have not had any headaches from calquence. It just occurred to me that I literally have not had a headache in two years! Which is a bit unusual for me as I used to get them every few months. Very odd.

[Keptindark in reply to sllincolorado]

Have you been taking Calquence for 2 years? That's encouraging. Dr said to drink a lot of water. I think he meant Pepsi, lol. I'm going to have to make a beverage change back to more water, ickkkk, lol

[sllincolorado in reply to Keptindark]

Yep - almost exactly two years. I have 17 p deletion, tp53 and unmutated so doc said I am more likely than most to need another med sooner rather than later. I think I might be getting close. So a very good two years but not sure what is going to happen next. My guess is add Venetoclax sometime this year. There are many people who do well on BTK inhibitors for many years. I consumed large amounts of diet soda for about 30 years. I stopped right before I was diagnosed. So I completely understand your Pepsi comment.

[Keptindark in reply to sllincolorado]

Why couldn't we just have gotten something simple like hoof & mouth? I read where Doxycycline aided the removal of dead cells from the body. I keep thinking there's an easier answer to all this but always seem to land on the side of clueless. The solution is there if we can buy enough time! I believe = )

[AussieNeil Administrator]

Headaches are indeed an exception to the otherwise lower side effect profile compared to the first generation BTK inhibitor Ibrutinib, being commonly reported. They do fade away after a couple of weeks and can be managed with Acetaminophen/Paracetamol (marketed as Tylenol/Panadol or APAP), NOT NSAIDs which can impact on bone marrow production. I never experienced them, but I did have extensive bruising from cannula sites and still get occasional petechiae. The bruising was no doubt primarily due to my platelet count dropping to 29 just as I started treatment. I needed a couple of red blood cell transfusions, but surprisingly needed no platelet infusions. They recovered just into the normal range, before dropping back to the 120s, but I'm now on 400mg Venetoclax per day, plus 4 weekly Gazyva infusions in addition to 2 x 100mg of Calquence/Acalabrutinib per day.

Neil

[Keptindark in reply to AussieNeil]

Will these measures put you into remission? I hope so and quickly! I was diagnosed in 2013. I guess I just thought we'd be further along in curing these diseases = )

[AussieNeil Administrator in reply to Keptindark]

A month ago I met all the criteria for a complete remission other than bone marrow infiltration, which is yet to be checked. My trial doctor thinks that's fine now too.

[Keptindark in reply to AussieNeil]

Wow! That's awesome. WTG Neil! = )

[thisishiswife]

FB has a good MCL Support page.

[Keptindark in reply to thisishiswife]

Thank you. I'll look for it!

[rose8]

My husband’s been taking Calquence for 5 months. His lab value have been very good but for him the headaches persist daily. Caffeine helps greatly but the caffeine was giving him heart palpitations. Another person suggested excederine tension headache which contains Tylenol and caffeine which helps. Others reported a headache occasionally so it depends on the person. He had a lot of symptoms for the first couple of months but those all resolved except the headaches. Make sure you stay hydrated. Stay safe

[Keptindark in reply to rose8]

So glad to hear that the side effects resolved over time. He might just need something as simple as alprazolam coupled with tylenol for the headaches. Good tension release! Is he in remission yet?

[rose8 in reply to Keptindark]

Beside the headaches he feels normal. Blood work has been really good but he has not had further testing because of covid. We live in CT you hi h is a hot spot. They are not recommending testing at this time

[Sojomama13]

Hi,

I have been on Acalabrutinib since January. I have found the only time I ever got a headache was when I didn’t drink enough water. I drink 4 liters a day, recommended is 3 liters.

Best,

Sandy

[Keptindark in reply to Sojomama13]

Sandy, how has your lifestyle been effected? I want to lose weight and swim once in awhile but must avoid the sun. Are you in remission?

[Sojomama13 in reply to Keptindark]

All of my numbers, with the exception of lymphocytes, are in normal range. I feel better than I have in years. I am currently on a phase 2 trial. I made a decision at diagnosis to eat healthfully and exercise. I didn’t have to change too much in that aspect.

I had a rough few months prior to starting treatment, my platelets went down to about 9,000, I had so much leg pain due to bone marrow infiltration, I couldn’t walk unassisted. I had to start back into activity very slowly. Overtime I have built back up almost to where I was. I enjoy being outside and like you, I avoid sun exposure. I still go outside but now I wear a hat, protect my skin by using sunblock and clothing with spf factor and of course use a mask.

We are installing a pool, so I will wear a long sleeved swimsuit. Since gyms have been closed, I do yoga and Pilates workouts from amazon prime or YouTube and some body resistance exercises.

For me, I didn’t concentrate on weight loss. I concentrated on increasing my strength and endurance. When you make healthy food choices and move more, the weight loss will come. Don’t focus on the number on the scale, instead focus on how your clothes fit and most importantly, how you feel. I dropped 2 sizes and lost only a few pounds.

Best,

Sandy

[Keptindark in reply to Sojomama13]

You have no idea how encouraging your comments are. I always have such reservations about starting a new treatment and I couldn't find much about Calquence that related to real-life experience. I have pets and worry about their safety. A cat in the lap = )

[country76]

I switched from Ibrutinib to Calquence last Wednesday so it has not been quite a week. I can report on the headache part. I also had migraines since a teen and throughout most of my adult life. However they stopped several years ago, I was also worried about headaches.

The headache I have gotton from Calquence has only been slight and not all the time. I do not need to take any meds for it and it quickly goes away. It has not been a problem so far.

I have not noticed any additional bruising.

[Keptindark in reply to country76]

Gosh, this is good news! We're all different. I will be starting the meds after my PET CT next week and feel much better thanks to all of you = )

[Dksmith71]

Hi! I’ve been on Calquence 4 years in September and in remission 3 1/2 yrs in June!! Not more bruising than before and Only had headaches for about a week when I first started with the med. and found that upon waking drink a full glass of water and it disappeared within 20 minutes without pain meds!🤗🤗🤗🤗 I now drink lots and lots of water each day!

[Keptindark in reply to Dksmith71]

Four years? That is good news. I thought is had only been ok'd since 2019 and was still considered to be in late trial stages. I gotta find healthy ways to flavor water because it's not my favorite beverage, lol.

[Dksmith71 in reply to Keptindark]

Well I have been on a trial! I found out a few weeks ago the trial will continue (in US) until at least the end of this year because the U.K. has not yet finished and been ok’d for official use!!

[Carl123 in reply to Dksmith71]

Did you get any rash like dots on your screen at all from

This med?

[Dksmith71 in reply to Carl123]

Every once in awhile I would get the petechiae but not bad. It was usually if my watch would rub too hard against my wrist. 🤗

[MaxSmart]

Dear Kept in Dark, I’m happy to see you’re asking questions and no longer kept in the dark. I was on Calquence/Alcabrutinib and to be honest with you got terrible headaches in the middle of night.

My doctor moved me to Zanubrutinib which is a similar second generation BTK inhibitor and all my headaches stopped.

[Keptindark in reply to MaxSmart]

That's interesting. I wonder if that med is approved (if even off label) for Mantle Cell Lymphoma.

[MaxSmart in reply to Keptindark]

The FDA has approved zanubrutinib as a second-line treatment for patients with mantle cell lymphoma (MCL) who have received at least one prior therapy.

[Keptindark in reply to MaxSmart]

I chose the name "Keptindark" because it took me days to find this site! I scrolled through page after page of advertisements, pharmaceutical websites and studies, looking for Real experiences (reviews) from REAL people. You have no idea how worried I was until I found all of you. I was crying a lot and afraid to start the meds. You are all so miraculous. You have no idea how much you helped me. Thank you! God bless you!