Hi Everybody,
My blood counts have gone haywire. I finished a round of Chemotherapy (Ofatumumab/Bendamustine) in January 2013 and since then have just got weaker as my blood count rose. I saw my consultant yesterday and I am to start IBRUTINIB/IMBRUVICA within the next two to three weeks. Is there anybody out there who has had or is recieving this treatment, and if so could you please tell me how it is affecting you and do you feel any better. My age now is 72.
Thankyou
John
I am on Ibrutinib and for me it has been a life-saver. My ALC has gone from 252 to 25 in four months. Very few and minor side effects. Three pills a day. Sorry bendamustine didn't work well for you, but good luck on Ibrutinib.
Hi Graham2222
Thanks for your reply it cheered me up a bit. Did you have chemo before you were put on ibrutinib, and may I ask how old you are and where you are being treated? I am being treated in Canterbury Kent. Is it CLL you have? I wish you well and hope things stay good for you.
Is that a celebration of chinese New Year in your photo???
Hi John. I'm 61 and went straight onto the IciCLLe trial at Hammersmith; treatment naive prior to that. yes I have CLL, and was diagnosed just over a year ago.
Best wishes for your treatment, and I'd be happy to answer any other questions you may have - major or trivial : they all count.
I took the photo in Japan. The flags are a means of sending prayers to the Gods. Appropriate, I thought!
Hi Graham,
It would be good to stay in touch just to see how your treatment affects you in the coming months. I am looking forward to starting the treatment as I feel really unwell at this time. I suffer from aches and pain throughout my body and chronic fatigue, I wonder if you had the same problems!
What is IciCLLe is that another name for ibrutinib???
John
Hi John. Yes I had those sort of symptoms, though relatively minor. I have no symptoms now. IciCLLe is just the name of the national trial for single agent Ibrutinib (called Imbruvica in the US). Let's keep in touch through the site. I hope you will feel much better a short while after starting on the drug. My nodes shrank by 75% in three months!
Hi Graham,
I have had no problems as yet with swollen Lymphnodes, just pain and a tiredness that just saps the life out of me. I keep as active as I can but it is a struggle. Good job I am retired as I would never be able to hold down a job in this condition. I have set myself a goal to go travelling in October so I hope that the treatment will work during the summer.
Are you keeping up with your normal activities and social life and is it OK to have the odd beer while on this drug.
all the best
John
Yes I am, although I'm very careful about public transport. I use sprays and hand wash a lot to keep germs at bay, especially in the winter months.
Drinking moderately is fine with Ibrutinib. They will give you a list of things to avoid. Some are odd, like grapefruit juice and Seville oranges (and therefore marmalade).
There's a compound in grapefruit that interferes with the uptake of many drugs. You definitely don't want to interfere with that, but it is a small price to pay 
Hi Graham,
I start on "IBRUTINIB on March the 4th how are you dealing with it these days! any side effects??
John
Hi John. Good to hear from you. You must be looking forward to starting on Ibrutinib. I am still doing very well on it, and hope to be looking at MRD or something close to remission in a couple of months.
Side effects have been trivial - a little stomach trouble but a small price to pay.
Good luck!
Hi Graham I am glad your doing well and it cheers me up to know that the drug seems to be working for you OK.
I get extremly tired now and am in quite alot of body pain, my consultant thinks I may have another problem like "Fibromyalgia" but to wait and see how the Ibrutinib effects me. I still am able to keep pretty active although it tires me. Do you think exercise is good for you???
John
Absolutely, in moderation and appropriate to your age and medical and physical shape at the time. I have built up gentle leg and upper body exercising every morning and walk a lot with my dog!
I play badminton and swim at least two times a week, also have a walk in the mornings. I do not feel like doing it but am always glad when I have as it makes me feel better. I just wonder if I am over doing it. The trouble with me is that I can't keep still I have to be doing something and as a result wear myself out. Must try to pace myself. Hope the drug helps me I want to get back on the road come October. I will let you know how I get on with the treatment.
John
Yes do, John. I know what you mean about exercise - it's addictive!
Hi Graham,
I started on the IBRUTINB a week ago, I also have to take Aciclovir and Allopuranol tablets with them. I was feeling pretty bad before starting these tablets. I now feel even worse, it feels like my body is coming to a standstill, with severe pain in the bones and cramp. I am finding it hard to get through the day and just feel so unwell. Do you think things will improve and did you have these symptons?
I hope that you are still coping well with the treatment.
John
Hi John. I'm really sorry to hear that. I didn't have a reaction at all, to speak of anyway. Some symptoms do diminish over time, but in your case I would tell all to my consultant and explore a reduction in dose.
I am four months on Ibrutinib, previously through 3 clinical trials of immunosuppressive drugs etc. Age 74. I have discovered that the symptoms you will experience, generally someone else has been through. Your oncologists don't know them all, because some will be unique to just you and the information can be found, especially from others on this site! Fatigue, appetite suppression, personal thermostat changes etc. may occur, but don't panic! Misery and joy both love company and you can find them here. My personal ride on this journey is getting much better and I am looking forward to staying on it for some time. Best of luck to you and stay the course!
Hi John, I am also on the IciCLLe trial. My counts were WBC 460 which went up to 590 now after only 5 months WBC 46. No side effects. I wish you well! I am 52 years old and 11q del
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