First day on IBRUTINIB

[Haileybury]

I feel very fortunate that after 2 courses of FCR which had to be stopped (pleural effusions, bone marrow and neutrophil problems), I have been referred to a CLL specialist in Oxford who has agreed that I am a suitable case for treatment with Ibrutinib on a named person basis. There can't be too many people in the UK who have been allowed this opportunity.

I took my first 3 capsules this morning and hope with my fingers crossed that this works well for me. I'm hoping that it will improve my pleural effusion problem (breathlessness) in the long term as well as improving bone marrow and neutrophils. That would be marvellous.

I'm 75, fit for my age although tennis is on pause for the time being because of my breathlessness, diagnosed early 2014, 11Q deleted, swollen lymph nodes everywhere, no underlying health problems, FCR started in April and stopped in June. The 2 courses of FCR have reduced my lymph nodes and WBC considerably so I may be starting Ibrutinib from a good base. My wife and I are very positive and hopeful.

David.

[Newdawn Administrator]

I'm delighted to hear you're being treated so responsively and have been 'allowed' Ibrutinib on a named person basis David. I wish you well and hope you're soon on the mend and back on the tennis court!

Newdawn

[Haileybury in reply to Newdawn]

Thanks, Newdawn. The sun is shining in Herefordshire. We are going to plant some tulip bulbs in the garden this morning. Onwards and upwards.

David.

[manzelka]

I hope all goes well for you.

[Haileybury in reply to manzelka]

Many thanks. I hope so too.

[PaulaS Volunteer]

David, I'm so glad to hear you're getting the Ibrutinib. I remember you mentioned the possibility a few weeks ago, but time was running out for getting it on a "named person" basis.

Looking forward to hearing how you get on

Wishing you all the best,

Paula

[Haileybury]

Thanks, Paula. I'll keep posting from time to time with updates. Are you on treatments yet ? Keep positive.

David.

[PaulaS Volunteer in reply to Haileybury]

No treatments for me yet, David. Thanks for asking. My doctor says I'm borderline for needing treatment this year, and has suggested FCR or R-Bendamustine. Like many of us, I'm hoping for something like Ibrutinib rather than the more toxic stuff. But I have to wait and see.. And I do keep positive - well most of the time.

[Haileybury in reply to PaulaS]

Like you, my wife is a retired nurse. She has been marvellous at researching for me, asking the consultants many leading questions which have always been answered and has been a terrific help along the way. I'm very fortunate. Good luck to you in the months ahead, Paula.

David.

[PaulaS Volunteer in reply to Haileybury]

Thanks David. Good luck to you too. It's good to know that your wife is also a retired nurse, and been such a help to you. Take care and enjoy the tennis.

[Hidden]

Pleased to hear your news, hopefully next summer will see you back on court.

Best wishes

Bubnjay

[Haileybury in reply to Hidden]

Thanks for your best wishes. After perhaps another lung drainage session and some weeks on Ibrutinib, I may feel like an hour of "old gentlemen's doubles". I'm thinking positively !

David.

[shazie]

David. You should think positively. Now, you are driving Ferrari, before, you were riding a Honda. I have been on Ibru for the past five months, amazing results. Try not to pay too much attention to the blood test results and let your hematologists worry for you. Best wishes.

[Haileybury in reply to shazie]

Love the car analogy. I know the blood count will rocket before it drops again, so not worried about that. I'm now in good hands at the University Hospital Oxford and under a CLL specialist.

Did you have side effects when you started Ibrutinib and if so, how long did they persist ?

David.

[fieldmeadow]

Great news for you. Hope all goes well. It's good to know that more mature patients are looked after so well and not written off - though in your case sounds as though 75 is the new 60! Hope you can resume tennis action soon.

[Haileybury in reply to fieldmeadow]

Thanks, Fieldmeadow. Day 2 and no side effects yet. The lovely lady CLL specialist in Oxford was very surprised when she asked my age ! Prior to this CLL cropping up, I have always felt a lot younger than my age. I suppose keeping fit and good genes has helped. I am not happy feeling tired and breathless as you can imagine. If anything is going to get me back in sporting mode, Ibrutinib is my best chance. Fingers crossed. Thanks for your interest.

David.

[ThreeWs]

Hi David,

Congratulations but do be aware that your body will go through a period of adjustment which may include some increase in vulnerability to infections both viral and bacterial. Keep an anti viral at hand if not taking one prophylactically. Most side effects are transient in nature but due to pleural effusion condition you and your doctor need to be extra vigilant.

I do not mean to scare you but patients who take Ibru are usually feeling so good as I did that it is easy to let one's guard down.

WWW - 3yrs and 3months on Ibru and doing very well.

[Haileybury in reply to ThreeWs]

Thanks, WWW. With neutrophils at 0.5, I know how vulnerable I am to infections. Thank goodness I am retired and can keep myself to myself. I totally avoid inside public places and try to meet people outside as much as possible. Fingers crossed for an infection free winter.

David.

[buckinhard]

That's wonderful !! Keep us posted so we can cheer you on !!!!! Tennis anyone ?

Denise

[Kwenda in reply to buckinhard]

Sorry not tennis, it is hard on the knees and legs.

Cycling and or swimming is good exercise and with less strain on our joints and bones..!

Dick

[lartington]

delighted to hear you have also been fortunate enough to join the 'ibrutinib gang' we feel it is a great to have this opportunity and are both extremely grateful. My husband is on day 7 tomorrow, hospital twice a week for bloods, he has developed shingles, but is very cheerful........ planting his winter cabbage in his raised beds. he is 74 years old, numerous health issues, he has had surgery for various issues 12 times in the last 8 years. it will be wonderful if his quality of life improves a little bit. hazel

[Haileybury in reply to lartington]

Gosh, Hazel. Your husband's really been through the mill. It makes me realise how fortunate I am not to have any underlying health problems. Really good luck to him and you too.

Day 3 capsules taken this morning. So far, no side effects. May play gentle tennis tomorrow morning for an hour. Two hours last week was too much. It slayed me for the following day !

David.

[shazie]

David, as far as side effects, in my case, I had none that I can remember. The only problem that I have is heart burn. But, I have been having GI issues since I was 30 and I am now 56. I believe, taking Ibru has made these problems worse for me but please remember my case is different. If you can drink red wine and black coffee then you would have no problem taking Ibru. Good luck and stay positive.

[Haileybury in reply to shazie]

Thanks, Shazie. I've had my day 3 capsules this morning. No side effects yet.

David.

[bob57]

Hello Hailybury, Glad that you were able to get Ibrutinib. The most common side effect, as you may have been told is diarrhea. I only experienced this during month one and nothing since. As far as your energy goes, I certainly hope that you have the same experience that I had. I could hardly climb a flight of stairs before starting Ibru. 9 months ago and now I climb them two at time. My BM involvement went from over 40% to 20% in 6 months and now at 9 months (last week) my WBC is normal (8K) down from 118K! and I feel better than I have felt in years. Keep us posted.

Bob

[Haileybury in reply to bob57]

Bob, it's good to hear from you. I gather you have just joined. I am sure you will find the CLL support association a big source of information and encouragement as I have done since joining earlier this year.

I have been on Ibrutinib for a week now and am noticing that my neck lymph nodes have shrunk considerably already. I am hoping that the fluid in my lungs (a rare side effect of CLL, I'm told) which is full of CLL cells will start to reduce similarly. The breathlessness which this is causing has been my main problem. But things seem to be working so far which is great - and with no side effects so far. All the best to you. I'll write a post from time to time with a progress report.

Thanks for your interest.

David.