Started imbruvica

[habsrule]

I was diagnosed with CLL in 2000... Did the usual watchful waiting till 2009, then had FCR for 6 months. Went into total remission till 2016... Had AIHA in September of 2018, treated in hospital with 4 transfusions ,and prednisone. My cll is back & I started imbruvica 3 days ago. I'm feeling much stronger,and I think my lymph nodes are getting smaller. So far no side effects. I see my doctor for blood tests this coming Thursday......

[GMa27]

What are ur markers?

You had a good run with FCR. I am a year into remission ...had FCR too. 💕

[habsrule in reply to GMa27]

What markers are you interested in?

[GMa27 in reply to habsrule]

Markers mean ur deletions like 13q, 17p and whether ur mutated or unmutated.

[Redlion]

Welcome to the Ibrutinib ride. As you seem to be experiencing it can make a remarkable difference in a short time and hopefully will continue to do so for you. Good luck.

[habsrule in reply to Redlion]

Thank you for your good wishes.

[AnneHill in reply to habsrule]

Hi, I hope you continue to improve. I had FCR in 2010/2011 for 6 months and like you had a good remission. Started to come back in 2016 and I began Ibrutinib on 23 rd of June. I havent been ill the way you were but I need introvenus immunaglobulin every 4 weeks. I have had muscle and joint pain which has improved.

Best thing though was my blood results. In 12 weeks my wbc was down from 149 to 19. Other results going up as they should.

If I could stop getting urinary tract infections things would be a lot better. I have pain and nausea at the moment.

Good luck, Anne uk

[habsrule in reply to AnneHill]

I'm sorry to read that about your urinary tract infection. That is listed as a possible side effect of Ibrutinib. tonight will be only the 5th time that I'm taking the pills. I feel better than I did compared to before starting. I also (by the feel) that my lymph nodes seem to be getting smaller.

Thanks for your good wishes... Best of luck to you......

[AnneHill in reply to habsrule]

Most people find their lymph nodes go down very quickly. I did too. My under arms and ribs were painful and I get adjusting my underwear, wearing it loose etc. I knew my neck was painful, more on one side. I had a photo taken and later I noticed my jaw was a much better shape. I had not realised my face was that puffy.

Ibrutinib is much better than FCR and I dont feel ill. I had a small antibiotic and it was wonderful as it stopped the uti's but understandably the doctor wanted to take me off them incase I became immune to the Nitrofurantoin.

My consultant isnt happy about 2 infections since I began Ibrutinib and when I see him next week it will be 3.

Im sure its the uti'S that are stopping me feeling well. Im feeling sorry for myself. Consultant has written to my GP. Consultant appt next Tues and GP Thurs.

Im glad you are doing well and if all we have to do is take tablets its amazing. Be prepared incase your numbers go up before they come down. Its normal for many. Anne uk

[habsrule in reply to AnneHill]

I find the tone of your post "uplifting". Please let me know how your appointment with your GP goes. I'm seeing my doctor on Thursday as well. This should make you laugh... after my Dr.'s appointment, I have an appointment to put snow tires on the car.....

[AnneHill in reply to habsrule]

We are not used to snow in the uk and its so funny. The trains get stuck, the roads get blocked and as we dont normally need snow tyres cars are stuck in the snow. My appointments are next week. Tomorrow is my birthday and Im going for a light lunch with my daughter. Iv been off colour and havent arranged a night out with my husband.

Good luck, Anne uk

[mrsjsmith in reply to AnneHill]

Happy birthday for tomorrow Anne. Enjoy your lunch. 🎂

Colette

[AnneHill in reply to mrsjsmith]

Thankyou. A friend gave me some lovely yellow roses today. Really sunny and cheerful on a horrible grey day! xx

[habsrule in reply to AnneHill]

Wishing you a very Happy Birthday.... Enjoy your "special" day......

[AnneHill in reply to habsrule]

Thankyou! Have a nice day too!

[AnneHill in reply to habsrule]

Hi, how are you doing? I seem to be lucky with my numbers. In 16 weeks my wbc is 8.5. My other numbers are good too. My GP has given me small antibiotics to try to stop the urinary tract infections.

I had my flu jab on Saturday morn. Later I had pain under my arm on the side I had the jab and I have been weary. Was worried about how exhausted I was and then wondered if it was the flu jab. I havent had problems with innoculations in the past.

Im still trying to go out and do things.

How are you getting on with the Ibrutinib?

Anne uk

[habsrule in reply to AnneHill]

Hi Anne,

Nice to hear from you but sorry to read that you have a urinary tract infection. I am aware that's a possible side effect from Ibrutinib.

I'm getting my flu shot on November 25th.... Hope that I don't get what you ended up with. As far as Ibrutinib, as you know I started taking them on Oct.2nd, saw the doctor 9 days after so my blood counts were pretty much the same as they were, but my lymph nodes had decreased immensely. So far no side effects other that bruising.

My next appointment with my doctor is on November 7th...I will update you.... Hope all goes well with you...

Best Regards...

Bill

[AnneHill in reply to habsrule]

I hope you get on well too. Urine infection may have gone. Got small antibiotic to take every night and so far it hasnt come back.

Iv never had a problem with the flu jab before and Im just guessing that is why I have been so exhausted. Today I had my immunaglobulin.

Its great you havent had side effects. Some people dont and you may be one of the lucky ones. Anne uk