My mom started the treatment with ibrutinib 10 days ago, the full dosis 420mg per day. She is 17p, naive patient, WBC 120.000. She has two side effects for now on: Articular pain and stomach ache, more like gastritis.
Does anyone has a clue what to do or what to take for mitigate those side effects? Of course she will see specialists but I would like to know from patients who are on ibrutinib to know better.
The other question I would like to ask, has to do with the new trial:
"Ibrutinib plus Venetoclax"
Recently I read an articule that show evidence of a a synergy between the two medicines, so it´s not the same having Ibrutinig and if fail then Venetoclax, than combine both.
Your Mom should get in touch with her doctor that prescribed her Ibrutinib to discuss her side effects and hopefully get something to relieve them. It's important that she's able to continue her Ibrutinib to get the best response in her CLL.
I had heartburn which was very painful and had some treatment. It went away after a couple of weeks and never recurred.
That´s good news, good for you. It seems that she will have to overcome the hard time with side effects because it seems to go away sooner or later. Thanks!
Hi sorry to bother you, I’m glad your heart burn went away, my moms been on Ibrutinib from January and she’s never had any problems till 2weeks ago she’s suffering from severe heart burn and it’s so bad she doesn’t wanna take the tablets anymore. I have spoken to the consultant and they have said to try gaviscon and she’s having that as well as lanzoprazole yet it’s still the same. I would be grateful if you could tell me how and what worked on yourself. Thank you and wish you all the best x
Lanzoprole worked for me but you have to take it every day.
It works to prevent acid reflux and so isn't as immediately effective when you take it when you actually have the reflux. If it's not working well enough then go back and discuss it again. Perhaps keep a food diary in case somethings are more likely to trigger it.
The heartburn is terribly painful and I can understand her not wanting to take the tablets but this heartburn is a short term problem and will go away. Mine lasted about 3-4 weeks and only occasionally recurs. It's important to take all the tablets as much as she can to get the best response in her CLL and a good remission.
Hi Nicolas_12, I have been on Ibrutinib alone for close to a year now and the first 6-7 months I had intense joint pain, muscle cramping, and bruising but these side effects did thankfully stop eventually. Tylenol did not work for me and I did not want to take a strong pain killer so for pain relief I soaked in epson salt baths, drank 2-3 liters of water a day, drank coconut water which is high in potassium, dipped my feet and hands in warm paraffin wax baths like they do at a spa, took biotin, calcium, magnesium, potassium, and vitamin D supplements, and rolled my aching feet on a lacrosse ball. The bruising eventually also improved a lot. I did not have any stomach issues. My doctor told me in many instances the side effects do improve over time. The dangerous ones are afib and bleeding - I'm sure your doctor is closely monitoring for these.
The good news is there are so many advances as you point out with combination therapies so the future is bright.
I hope your mother feels better and has a good response - my numbers have gone from a WBC in 170,000s when I started then it peaked in the 250,000s now it's dropped to 46,000s in the 11 months. While this is not the only measurement lymphocytes have also been dropping. One month I did not see much of a drop but this also happens - need to patient - Ibrutinib is not like a chemo drug where it drops immediately. Everyone has a different response - my doctor says I'm the average time for response. Best wishes to your mother!
SunnyCa thank you very much for your response, very kind of you, shering your history on ibrutinib and the way to fight the side effects with other complements, that is very helpful, after I read your response I instantly talk to her and she feels like she is not alone and there are solutions out there if she has rushes or bruising.
You´ve been through a lot but is encoriging to know that the treatment is working for you. That´s also good news, knowing that there´s a possibility for her, a chance to reduce her WBC.
i have a ways too go on Ibrutinib but it's going in right direction and I'm feeling great. Take good care of your mother - she is lucky to have such a caring son!
It is my understanding that some people have seen gastric problems as a side effect with both Ibrutinib and Venetoclax. Your mother should discuss it with her specialist as they should be guiding her.
You mention Ibrutinib + Venetoclax. In the UK this trial is called Clarity. I am on that trial and have been since February 2017. I think has gone well so far. I've had a few minor side effects so far but nothing that is discussing unless you really want to know (please ask if you do). I've put my experiences on here since starting, fairly frequently at first as a lit was happening, just look for Ibrutinib/Venetoclax journey posts from me.
There are others on this trial in USA and UK that have posted on here as well.
Since the begining of 2017 where the hematologist decided to start treatment on my mother, I read many articules and new posibilities and Ibrutinib plus Venetoclax seems the best choice, that´s why I want to introduce Venetoclax after week 8 of ibrutinib to my mother, because the disregulation of BCL-2 is one of the key issues, not to extend the treatment to much. I will read your posts.
Hopefully I will be starting an Ibrutinib/Venetoclax trial in two to three weeks. At the end of the first period of the trial half of us will be given placebos to see how long we stay symptom free without the drugs versus those who will continue on. With the extremely high costs of these drugs, this could be a major breakthrough for both the patients in terms of longer life and better quality of life and the insurance companies in terms of savings.
Best of luck! If my mother where an US citizen I would ask her to do the same. There´s no trials here in Buenos Aires, no such thing here, and sometimes the hematologists here just follow only the procedure too much, not risk in new things that may be are not aprove yet, only in this particular case, seems obvious that these combination works, and works better. I have to find an hematologist that feels the same as me, and carry on with I/V treatment,.
For most, but not all the adverse events are short lived, especially the GI issues. Joint pains may take months to resolve. The combo of V+I has higher GI AEs than either drug individually, at least in MCL. Stay strong. Brian CLLSociety.org
I have been on the ibrutinib and venetoclax trial for 20 months now and bone marrow markers down from 90% to 13%. Blood indicators are all clear and no signs from a ct scan.
side effects were joint pain in the early days and some diarrhoea. but all clear now. I took panadol for pain relief and immodium for diarrhoea - all under the direction of my hematologist.
Hang in there, the treatments are getting better all the time!
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