Taken off ibrutinib

My neutrophil count has been extremely low on ibrutinib even with regular injections of GCSF, last Thursday my count was 0.1 so was advised to stop ibrutinib but carry on the injections, went back yesterday for another blood test neutrophils had gone up to 1.1, unfortunately in the space of 24 hours my lymph nodes on my neck, groin and underarms have come up at an alarming rate, went back to Christies today and put back on ibrutinib, was alarmed that in less than a week off ibrutinib my symptoms had returned so quickly, just worried as this is my 4th line of treatment.

I've been on ibrutinib for the past 7 months and apart from a couple of side effects I have been great on it, just wanted to know if anyone else had any such experiences on ibrutinib, if so would be grateful to hear from you... Thanks Jan X

14 Replies

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  • I have not been on Ibrutinib but am on Idelalisib. Are you able to try that? I just wanted to wish you well and pray you do better this time on it. You sound very tough to have endured all of that chemo.

    Jeff

  • Oh my Jan, sorry to hear this... hopefully it is an infection perhaps, however,

    I would push for a PET/CTscan... ASAP

    ~chris

  • Hi Janet, Just wanted to let you know my mom had the very same experience with ibrutinib. She was taken off it completely for three weeks because of very low neutrophil count. Her lab results when she went back were much improved, so she was put back on the ibrutinib, but just every other day. I am taking her back to her doctor on Monday and based on the results she will either stay on it every other day or go back to every day. Maybe a reduced dose is something you can discuss with your doctor as well. I hope this was just a little glitch for you and that everything will work itself out. Wishing you all the best.

    NVP

  • Thanks for your replies, Im scheduled for a PET scan next week and I think maybe a reduced dose of Ibrutinib maybe the way forward, but I know my consultant was reluctant going down that route, Idelalisib also maybe another possibility I will know more on Friday when I go back to Christie's .... Stem cell treatment has also been discussed but fingers crossed that's a long way off yet..I'm hoping that by Friday my nodes will of gone back down . Will keep you updated on what my outcome is....Big thanks again, this is a fantastic community which I rely on immensely for updates and information as there is always someone who can help ... Keep trucking peeps Xxx

  • Hi Jan, I'm sorry to hear about the problems you're having. I too have been on Ibrutinib for 7 months and 2 months after I started on it I developed severe persistent headaches so my consultant took me off it. Within days my glands resurfaced alarmingly under my arms and on my neck, although the headaches diminished. CT and PET scans showed nothing which was baffling however my blood counts were just about normal. So I was put back on Ibrutinib and, again, within days my glands went down.

    My case may not be helpful to you but one thing I've worked out for myself is the importance of hydration while on Ibrutinib. I now drink 2 litres of water a day - in tea and as water. I haven't had a headache sine November.

    As has been suggested by NVP, perhaps a reduced dose may stop your neutrophil count going so low.

  • Thanks for the update, Jan. I read your post and the responses, and was wondering how you were.

    It's good to know you're having a scan next week. Hopefully it will make things clearer re what's happening, and what's the best way forward.

    Wishing you all the best,

    Paula

    P.S. It's always nice to see your lovely smile.

  • I was diagnosed with CLL in Sept. 2014. Only outward symptoms was high WBC. 4 weeks of Leukeran followed by about 5 weeks Ibrutinib. WBC dropped to less than 20. However, my heart had gone into extreme afib, muscles in my thighs were rock hard and I could not sleep. I have been off all chemos for 8 to 10 weeks..... WBC is stable.........other bad side effects have improved and I feel pretty good. If I ever go back on Ibrutinib it will have to be a reduced dosage.

  • Hi Jan,

    Research is in general agreement that neutropenia is mostly transient if purely induced by Ibru. I would ask your Onc if your neutropenia fits within an expected defined transient time frame for waiting it out longer or is it time to consider plan B? You mention you have had 3 prior treatments for which I would wonder if Ibrutinib was the problem or might you have marrow damage from the prior therapies which I assume would have contained chemo?

    Chris's concern over Richter's is well worthy of getting confirmed or eliminated from the problem of rapid lymphnode enlargement.

    Hoping for the best for you,

    WWW

  • Sorry to hear about this Jan. You could also ask your doctor about reducing your dosage of ibrutinib. I was on ibrutinib for 3 months then had my neutrophils go from over 4.0 to zero in about a week. A week of GCSF injections and a reduced dose from 3 to 2 pills a day shot my neutrophils back up to over 4 again but that only lasted for another week before they dropped to zero again. My dose was reduced to 1 pill a day and another week of GCSF brought my neutrophils back up again. I didn't experience any enlargement of lymph nodes but my lymphocyte counts went up at bit and then declined but much more slowly than one the higher dosage.

    All the best

    Ken

  • Jan,

    Any news? All good of course. Just know I'm praying for you and everyone with Cancer.

    Jeff

  • I feel very sorry for you and your latest problem....... my husband has struggled with low neutrophils for several years, we have developed a lifestyle avoiding people and contact with potential infection. this cll is a burden so many people carry on their back isn't it?? my husband has been on and off Ibrutinib since last September. reasons being shingles and surgery .... but today he has had his first ever blood transfusion, he has felt rotten for the last few weeks. I don;t know what to say....... Ibrutinib is such a new drug,......... cllers on Ibrutinib are really guineapigs having said that he also feels it is a great honour to be offered this opportunity to take it ..... I can not say my husband has FELT any improvement at all, only acute fatigue....... BUT ......... dare I say this?? the trial people are the gateway to the future....... it is our children and grandchildren who will eventually benefit from the new wonder drugs without all the hic-cups................. sorry to say that, but we lost our much loved son-in-law to cancer...... he had a trial which failed, but he was happy to give it a go knowing that his input would hopefully help others in the future. it is a tough ride........ but hey...... some days the sun shines, we do not live in poverty. look (if you can bear it) to the news every day and see the utter horror taking place around the world....... and let's all be thankful that we live in the western world and can appreciate and be thankful for that.

    On Monday next week I will be burying my 93 year old Mum.She spent five years of her early life underground working in a bunker making hand grenades during the war ........... I am so very proud of her, what a rotten existence........ in later life she spent 21 years of her life...... 3 days a week working in her local Cancer Research Shop , mending and ironing clothes which had been donated to sell. I take comfort in the fact that her effort and many other people like her is helping to make a CHANGE .

    I also think you are very very fortunate to be a patient at Christies. My husband is equally fortunate to have excellent care from the National Health which so many people are so keen to complain about........when you are at the sharp end it is excellent............

  • Such difficult days for you, Lartington... I hope the blood transfusion helps your husband to feel better.

    And I hope your mother's funeral goes well on Monday... She sounds like a very special person... Not that funerals ever "go well" , but sometimes they can be a lovely thanksgiving for someone's life, as well as a helpful way of expressing our goodbyes. I have been to more funerals this last year, than ever before.. All were terribly sad, and yet there was also a sense of thankfulness and hope there.

    It's lovely to hear your positive and thankful attitude shining through what you write... Thank you for sharing.

    With very best wishes,

    Paula

  • Hi Paula, it is lovely to hear from you, I don;t understand this forum very well really, I suppose these messages are somewhat public for everybody to read, not that mine would interest too many people. I have been wondering how you are....... are you on the trial at St.James yet?? please update me and tell me how you are......... I have spent the morning making a floral tribute for the top of my Mum's coffin, she was a flower arranger and I put into it all the flowers she loved. it doesn't look like a funeral tribute from a florist at all, it is very loose and casual, ivy, snowdrops, little daffodils, winter jasmine, anenomie etc., etc.,

    very best wishes to you Paula, I often think about you and your little mascot red squirrel........ hazel

  • Hi Hazel, Sorry for replying to a message you had addressed to Janet. (And apologies to you too, Janet). But when you said you were burying your mother on Monday, Hazel, I wanted to respond to you. How lovely that you were able to make your Mum's floral tribute yourself, using the flowers she really loved. Maybe you can take a photo of it, and post it here with your next question or post, so we can all see it...

    About the way this forum works - these messages are open to be read by anyone who is member of the group. So when you write here, it won't just be the person who started the post, who sees your comments - everyone in the group can see it.

    If the post has a little padlock symbol at the top (on the right hand side of the line under the title of the post), then it is private to the group. All the group can see it, but not people who are not registered with this CLL group of HU. However, this particular post of Janet's does NOT have the padlock. So, in theory, it could show up on anyone's Google search for Ibrutinib or some other key word.

    I hope that makes sense... It's a bit hard to explain the privacy thing and it took me a while to get the hang of it.

    Thanks for thinking of me and my little red squirrel. That squirrel was a frequent visitor to a holiday cottage in Scotland (near Loch Tay) where we stayed last summer. He (or she) was quite tame - I think many visitors probably fed him, like we did. Well there were several squirrels who came, I think some were young ones.

    I'm doing OK thanks. Still getting very tired, but I'm eating better and have stopped losing weight. My docs had thought I was on the edge on needing treatment last November, and talked about FCR or Bendamustine+R, or looking at other trials after Christmas (especially FLAIR trial). But then I seemed to stabilise.. Spleen not so swollen, bloods (ALC) wavering around 250 thousand. So my doctor said we could wait a bit. I'm getting increasingly anaemic though, so I think treatment is still on the cards for this year sometime. I keep thinking I must write another post giving an update on my situation, because people are very kind and keep asking after me. But I was waiting till I had something more definite to say... Which still hasn't happened...

    I do hope your husband feels better soon... There were questions re him having more surgery and I know that didn't happen at the time, but I wonder how that is working out?

    If you want to keep your messages private to certain people, you can send them a personal message. Click on someone's name or avatar, and it takes you to their profile. Look for the orange "send message" button at the top right, and you can write your message in the box that appears. Then it will just go to that one person (unless you added extra recipients).

    Wishing you and your husband all the best for the future,

    Paula

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