It's been a while since my last post so, as I am making real progress, here are my latest thoughts. To recap, Dr Schuh in Oxford put me on Ibrutinib 8 months ago as a named patient as was the process then. I am FCR refractory and 11Q deletion. I also have bi-lateral pleural effusions.
Initially, my white blood counts roared up as the lymph nodes were being cleared. This coincided with my lung fluid getting a lot worse so that I was hospitalised as I was quite ill just before Christmas. They put in a permanent drain into my right lung and I had twice weekly drainages until three months later, no more fluid could be drained and the tube was removed. I had lost a stone in weight.
Regular blood tests have shown my white blood count eventually coming down and it continues to do so. From a high of 198 in December my lymphocytes have come down to 8.3. I feel so much better than I did in December and am able to get around more. I have a residue of fluid in my right lung which makes me breathless on slight exertion but the respiratory team at my Hereford hospital have signed me off. A chest x-ray shows that my lung fluid is getting less without interventions. Dr Schuh once said that she thought Ibrutinib could help to reduce my effusions. Let's hope this continues.
I have no doubts that Ibrutinib is a "wonder drug" and I know how lucky I am to be given it.
Onwards and upwards.
David - Hereford - age 76
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Haileybury
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Absolutely wonderful news and progress David and so pleased you were able to get on to Ibrutinib. It really is proving to be a 'wonder drug' for you and your post will give hope to others with less positive prognostic indicators and co-morbidities.
I'm glad to hear that you are doing so well on the Ibrutinib front - and hope that your lung problems improve!
You might have read a while back - I was on the B + R Trial with a 50/50 chance of receiving Idelasilib / placebo - similar targeted agent for CLL.
However, like you, the indication that I was lucky enough to receive the other wonder drug was in my first blood results which showed my Lymphocyte Count TRIPLED to 171 but after 12 months has reduced to 13!
I too am lucky enough to be on the wonder drug. I have been on it 9 months and the results have been unbelievable. I had a new lease of life after 7 years with 3 relapses. Unfortunately I started diarrhoea on 1st April and they had to stop it. I am just restarting it on 1 a day, next week 2 a day but doubt if I shall get back to full dose.
This is a common side effect apparently. Let's hope I can get by on 2 capsules eh!
I cannot vouch for the efficacy of this remedy for diarrhea because I never had the problem but a patient I know had great success by taking nutmeg. Here is what he wrote:
"The diarrhea treatment is ground nutmeg, 1/2 to 1 tsp, two to three times per day. I can't believe how well it has worked once the benefit started. It took a week or so for my system to settle.
I mix it with oatmeal, applesauce, vegan chocolate pudding. Delicious.
Mike Nissenblatt (my NJ onc) told me the mechanism is similar to Octeotride's mechanism. He suggested I take off weekends so I don't become desensitized. I skip nutmeg between saturday morning and monday morning. Diarrhea and symptoms return by sunday and resolve by monday night, week after week. "
Well done David .I am on the new wonder drug too (8 days in ) Had a bit of nausea to begin with but seems to have settled down .
I belong to a health club where I do Aqua fit and Yoga and I am really missing it at the moment .I have been going to the same club for over 25 years and it has become a way of life .I have lots of friends there too which I really miss .
I have been on Ibrutinib nearly 47 months now and continue to do well. I hope you will find side effects to become less with time. It appears the body needs to adjust and for some it is harder than others but most side effects become less with continued use.
pleural effusion is just not fun, it's effected my left lung - thoracentesis several times along with chemo helped, but I can still feel some fluid. Very happy it's not rebuilding. Glad to hear that your treatment is working for you. Best wishes
Hi, Jan. Thanks so much for your cheery reply. I often think about you since your last post and wonder if Dr Schuh has got you on a suitable trial by now. She has signed me off for the time being as I am being monitored in Hereford, so I am doing well. You have had and are having a bad time and I am so sorry for you. It's a shame that they have not been able to come up with a solution at Christies but Dr Schuh is one of the few real CLL experts in the county as well as being a top researcher. Put your faith in her - she's good. Thinking of you and your family.
Delighted that you've had such a good and ongoing response. My passage has been rather more fraught with two dosage supsensions. Now on just one tablet (ie 140mg) daily and wbc just starting to creep up. Despite this I am very busy and have more energy. I hope your improvement will continue. Enjoy feeling well!!
Hi David, great news! As a fellow 11q del I to think it is a wonder drug. Just had my 9 month check and my ALC is now 12 and all other counts in the normal range.
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