Hi ,New to the group. I have been on WW for a year and Tuesday I am beginning my journey
of CLL treatment of calquence twice a day. I am somewhat uptight, however trust my oncologist
and have much support, family and close friends. My strong faith will surely be my strength.
I am reading and been told by my Doctors and nurse of the possible side effects. Just praying I will have the strength to tolerate any hard side effects Thanks for hearing me out. Some friends tell me to stay away from this site as it might make me anxious, but I am a grown up 82 year old otherwise been healthy this far. No complains. Thanks for hearing me out. Have a wonderful week.
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Missmuffinandme
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I am nearly your age and I have had CLL for nearly 34 years and am on my 8th month with Calquence and I love it and the labs are loving it too!!! They are the best in more years than I can remember! I am so happy you found our community. We are truly a very caring and supportive community that is so fortunate to have many very intelligent people.
You will do just fine….anything new can and often be a bit unsettling that is so very natural! Trust in your doctor is huge.
My only suggestion is to have coffee in the house as you might have headaches when you first get started. I have had a few minor and I do mean minor side effects. They come and go very rapidly and one at a time…indeed very tolerable. The headaches have gone.
I know your family and friends mean well by telling you to stay away from “Dr. Google” but this site is very helpful. Here you can learn from other people with CLL and how to deal with side effects and so much more.
Your post has brought up mentions of Calquence in Related Posts, which you might be interested in reading. Keep in mind that in general, members who don't have side effects, don't post about a non-event With the exception of the risk of high blood pressure developing, which if it happens, is easily managed by prescribing or adjusting blood pressure medication, the incidence of side effects decreases each year on Calquence. Some report headaches developing, but that side effect, if you experience it, only lasts a few weeks. Usually the headaches are banished by drinking a caffeinated drink, perhaps with some Tylenol (also known as acetaminophen, Panadol, APAP or paracetamol), depending where you live.
My wife had minor headaches for about two weeks for a couple of hours a day and not every day. She is on her 2nd month with Calquence and now has a burning in her stomach or intestines that needs to be addressed. She does have IBS and has the same problem with antibiotics. Has anybody here had the burning and have some suggestions for her?
I had to change some of the foods I ate when taking ibrutinib. I wonder if her dose could be modified to see if the GI effects go away but still kill off the CLL. We don't need to kill it off super fast IMO, we just need the med to kill it faster than the CLL accumulates.
Welcome to our club, none of us chose to join. I am coming up to my first anniversary of taking Acalabrutinib and hopefully all will continue to be well. I had blood taken last week and I have a telephone consultation this morning.
I have tolerated the treatment well. I had dull headaches in the morning for the first few weeks but this was put down to the Allopurinol which I had for the first three months. A good strong cup of tea sorted it .
I've been on acalabrutinib since June 2020. Side effects; small blood-blisters in the mouth which come and go with no problem. Possibly tendency of fingernails to be fragile and splintering but that might just be age or something else. BP unchanged, blood numbers vastly improved, spleen and lymph nodes shrunk back to normal size. What's not to like?
My husband had aggressive CLL in Jan this year. He started Calquence in March and byMay his CLL dropped from 90% to 60% throughout his body. He is doing so fantastic on this medication, we affectionately call them his Angels. (He does get a slight headache once in awhile but 1 cup of coffee cures it quickly). As for this site, it has been a God bless site that has allowed me not only to get smarter on CLL (with the help of Neil and the folks in this community who share their experiences) and to get a full night of sleep! I agree with your family in regards of searching Google (it's scary)- - welcome to this very informative and wonderful community!💗
I just started Calquence 6 weeks agoMy lymph nodes have shrunk and I feel better than I have in the past 3 years. I guess my body appreciates the help!
I had headaches that decreased in frequency and intensity over the first 3 weeks. Cup of coffee cured them all( yum)
I bruise more easily but it’s just cosmetic says my specialist. 1 weird cramping episode. So very minimal. Hardest thing is drinking all that water, but hey it’s good for my general health also
I wish you well and we are fortunate to have these meds and the people on this sight!
this is one person's experience - lots of pure water, check for interactions if on any other drugs or supplements, avoid yeasty foods like beer or vegemite, have not had any headaches but joint pain - 6 Panadol osteo a day no side effects for a while but stopped now as no longer needed
I have taken exactly four months of Calquence today and look forward to many more because of the vast improvement in my blood numbers and the reduction in size of my lymph nodes. I could actually feel large masses in my abdomen the nodes were so large before starting treatment, now nothing. I have only experienced minor superficial blood vessel ruptures under the skin of my hands mostly and nothing else, not even the headaches you see some comments on. I drink coffee practically every morning so maybe that is keeping them away. I did the google searches like most do to get educated but was scared to death until I found this tremendous site. It is now my go-to for any questions I might have. Everyone here is so helpful with any questions you might have, someone has lived it or researched it and has an answer. Good luck with this journey, you are not alone.
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