Cll treatment

Hi Charles, I am dropping in past from our NHL group to say Hi.

I had a totally duffel treatment journey but let’s look for any of the group members to be looking in.

Do also check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service

lymphoma-action.org.uk/.../chronic-lymphocytic-leukaemia-cll-and-small-lymphocytic-lymphoma-sll

Hi Maltese my Mum is on Ibrutinib since October and apart from feeling tired she seems to be ok and no other side effects, her WBC is dropping really quickly as well and doctor seem really happy.

Hi Charles,  I just started Ibrutinib about 2 months ago. My own symptoms were OK - mainly slight fatigue. It is difficult to separate the drug side effects from the cancer effects. I have had a couple of infections and coughed up blood and have many tender lumps under my skin/muscles. Ibrutinib can cause spontaneous bleeding throughout the body and infections (often antibiotics are given simultaneously as a prophylaxis). You might get bruising from the bleeding (the degree is different for everyone). My doc says that, just because I get tender lumps and bruising in my muscles/skin, it doesn't mean its not happening throughout my body or in my brain - I don't understand how he can be sure of this. Read the data sheet that comes with the drug as it explains many of the potential side effects. Also the MacMillan website has some good info on it. Also Google it and the manufacturer website and YouTube has good info. A website called "www.drugs.com" can give you good technical info on the drug, as well as the data sheet and interactions likely with other drugs. Much depends on your age and comorbid illnesses. Your white blood cell count will rise initially as the drug begins to work but this will drop off markedly in the first few weeks. My lymph nodes disappeared almost completely within 2 weeks. For those of us with aggressive CLL, or who do not respond to chemo, or for who chemo is too aggressive, Ibrutinib is literally a life saver. A newer BTK Inhibitor (same class) is called Acalibrutinib, is even more targetted and so has much less side-effects but I'm not sure of the NHS has yet approved it as it is more expensive than Ibrutinib. It is also possible to get Atrial Fibrillation (erratic heart beat). I did not (I'm 55yrs old) and suspect this may be only happening to some people who already have heart problems. Your consultant should fully explain all of these possible effects, and their likelyhood for you personally, BEFORE you sign the consent form. All chemo and anticancer drugs have to be explained to the patient in a way they can understand, and they can be given time to think about it before you agree, or talk about alternatives, or what might happen if you don't take it. Because they are serious drugs you need to sign a consent form to agree to the treatment. I had no choice but I'm glad I did. I am hopeful it will continue to work for a while yet but they just don't know how long it will work for as it is possible to develop a resistance to it at some point.

I hope this is all helpful to you and wish you all the best for the future.

Crowmania x

Hi....thanks for your reply. Its-very helpfull and-as you  said everyone is different. I will see my hematologist on first week of June and will see the result of the last blood test.

i heard-about AClaibrtinib and it has less side effects especially on the heart beat! But its still not available in Malta . I will recheck.

thanks once more and lets jeep positive.