CLL Support Association
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Ibrutinib / Imbruvica?

Hi all,

I'm a CLL and ITP patient and have had many different treatments in the past number of years. Following a recent CT scan and an increase in the size of my lymph nodes, my consultant is proposing that I start the new drug Ibrutinib.

My history of treatments hasn't always been successful and I have been hospitalised several times due to bad reactions and/or infections, so naturally I'm very cautious and concerned about starting this new drug.

As far as I am aware, Ibrutinib is for people whose CLL has relapsed after treatment and who have certain genetic changes (17p deletion, where some genes are missing) in their lymphoma cells that make their condition harder to treat.

I would love to hear from other members who have experienced this new drug, or perhaps who know someone who is going through treatment with it. I've read and re-read the clinical information but some human experience would be much welcomed.

Thanks in advance.

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Hi Jimimajimbob

I have been on Ibrutinib since February last year. I was a relapsed patient with no deletions, as far as I know. I'd had just one series of Chlorambucil / predisnone chemo back in 2014.

Ibrutinib reduced my enlarged spleen and lymph nodes back to a normal size in 6 months, mainly eliminated persistent diahhrea with some occasional recurrence, and left me generally feeling well and energetic. I do still experience the normal aches and pains of a 70+ male. I have some skin problems continuing from pre treatment times and currently have a heart monitor implant to monitor an irregular heart beat. This may be from Ibrutinib but my father suffered heart attacks from 64 until his final one at age 89.

I know that I am extremely lucky that the NHS funded this treatment and that the treatment arrived "just in time" for me.

I certainly hope that you will find Ibrutinib equally efficacious and live a long and happy life.

Regards

David

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Thanks for your encouraging news. Keep well

Jim

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Hello. jjimmijibob

I have been on Ibrutinib since May of last year .It is my first treatment as I have 17 p .Foor me it has and is working well ,and most of the time now I feel pretty good .When I started Ibrutinib I did have quite a bit of nausea and skin problems .These have settled down now although I still get the bruising and I do bleed quite a lot if I knock myself .

My lymph nodes are now back to normal and my energy levels are pretty good too .

I do get the odd day when I don't feel quite so good but that is usually when I have tried to push my self too hard.

My consultant when I saw him in July was very pleased with how everything had settled down .i brutinib is working for me and for that I am very grateful .

I wish you well with this amazing drug and I hope the side effects are few for you .

Brenda.😊

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Thank you Brenda for your encouraging news. Keep well

Jim

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I was at stage four when I entered a clinical trial at Ohio State with Dr. Byrd for ibrutunib. I did not hv 17p. It does hv potential side effects but it not only saved my life, but I hv been in complete remission for 1 1/2 years. And, at 79 years, I feel fine.

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Thanks you. Good to hear it has been going well for you.

Jim

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I started Ibrutinib 2.5 months ago. It is such an amazing drug. My wbc is normal (down from 238) I've had very few side effects - some fatigue and small red blood spots here and there. In the US it is approved for front line therapy.

I feel normal!

Virginia

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Thanks you Virginia. It's so encouraging to hear your story.

Jim

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Hello there,

I have been on ibrutinib for 4 months

Age 53, 1st treatment 13p. And

All my counts were pretty off.

Apon seeing the trials nurse last week

Every count was completely normal

And spleen & large nodes gone!

So looking posotive for ct & B M B

Hopefully in a couple of months!

The only side effect of the drug for me in the first 3 months was bone pain

But lots of water helps with that.

Wishing you all the best👍

Regards

Kelly

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Congratulations, Kelly! I'm more-or-less in the same boat -- same age, on ibrutinib for 3 months, dealt with some joint pain (that's subsiding), still have one stubborn swollen lymph node in my neck (after the others quickly melted away), I suspect my WBC is still quite high and due for a test next week. I was never aware of all these terms like 13p, etc. until I joined this site and remain ignorant of my own status on that front...and I'm 6,000 miles away from my doctor, but will soon get that information sorted out.

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Hi,

So glad to hear its going so well for you, its an amazing Drug, hopefully over the next

3 months all your counts will be back in to line, mine changed dramatically every month!

I am on retuximab as well!

Feel amazing!

Keep going👍

Kelly

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Thanks Kelly. Delighted it has worked well for you. Here's to it continuing!

Jim

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69 yr old maie ... On ibrutinib for 28 months for Stage 4b SLL. Within 3 months, lymph nodes reduced by 2/3. Had a dip at 3 months in ANC but all has been normal since then. Side effects: muscle & joint pain, fatigue, brittle nails, some pimples, and hair has become wavy & fritzy. I am not 17p deleted. I did not have any nausea or other digestive problems.

Hope it keeps working from now on.

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Here's hoping it does

Thanks

Jim

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HI,

I have been on Imbruvica for 17 months. First time treatment, and 17p deletion. I am so very thankful for this medicine. While I have had side effects, one comes, leaves, and another arrives. When I first started on the drug, I had painful hand, leg and foot cramps. Thankfully I rarely have them anymore. Brittle nails have pretty much cleared up too. I am on a diuretic as my ankles and feet swell without it. I am still working full time ( and commuting about 3 hours total as well). I am able to manage house, cooking etc. As Brenda mentioned, I really only have extreme fatigue when I push myself to do too much. I have learned to take life a bit slower, and enjoy. The last time I was at my specialist he said that my blood was normal and would never know I had/have CLL from the tests. I hope the drug continues to work for many more years. Wishing you good luck!

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Thanks you. I hope so too. Really encouraging to hear.

Jim

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As good as Ibrutinib can be, it also can result in side effects, so know what they are, watch for them and alert your consultant (oncologist?) if anything is amiss. Any side effect can be potentially managed if it is dealt with earlier rather than later. I was knocked off Ibrutinib due to an extremely serious rash which was allowed to escalate. I am doing well on Zydelig (Idelalisib) and Rituxan. I have no idea how it would affect your ITP.

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Sorry to hear of your difficulties.

I was on idelalisib last December and ended up hospitalised, extremely high liver readings and an unknown infection which was difficult to treat. End of idelalisib for me. I was taking it for 6 weeks when I fell ill.

I hope it continues to work for you. We all react differently.

Good luck.

Jim

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Hello...I started Ibrutinib on April 5 of this year as my lymphs had gotten to 122,000 and I have anemia also. This is my first treatment. I started at 420 mg and was on for two weeks when I developed the worst rash ever and had to go off of it. Was prescribed prednisone 60 mg and that took care of the redness and itching, but left a mottled appearance under my skin. I'm saying I had this rash everywhere. I was off for two weeks and when I went back I was taking 280 mg. After two days the rash began again but nothing like before, so I went to 140 plus 20 mg of prednisone. I don't think it was strong enough as the night sweats came back, so as of yesterday I went back to the 280 mg with 20 mg of prednisone hoping with the pred. I won't get the rash. I don't have any depletions that I'm aware of. I'm just having a hard time getting the correct dosage. When I was on the 420 mg my lymphs went down very quickly and while I was off didn't increase until recently I noticed my groin lymphs were getting a little larger again. Fortunately, I got the bottle of 90, so I've been able to try the different dosages. With the blister pack I would still have the 420 mg and wouldn't have been able to try this dosage experiment. I don't look at this as a failure of the Ibrutinib, just my body couldn't handle the 420. There are many people on our site who have had great success with this drug and it beats chemo which was standard not long ago. This drug does come with some side effects and those were explained by others above, however, give it a try as it is the most popular, I believe, of the drugs being given now at least here in the US. Starting any new drug is always a little nerve racking and in your case I understand why. I was that way before I started, but hang in there and keep us all updated on your progress. My very best to you in your new journey. Carole

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Hi again...I didn't realize this post was from two years ago. Are you still on with us here? If so, how are you doing? Carole

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