On the eve of starting Ibrutinib, can anybody share with me the effects this drug has on blood levels? I have been told all will improve, but in the early days there will be a wobble!! I am to have bloods checked every week initially, I am a little apprehensive, like jumping off the edge of a cliff....... I suppose my greatest concern is possible bleeding , being on long-term warfarin, changing to Tanzaparin, still the risk exists.....

My hospital team are very caring, but as this drug is not readily available in the UK it does create an element of uncertainty. Having said that, I am extremely grateful to have been offered the opportunity to be a named-patient ..... and I hope that my case will ultimately demonstrate the possibilities for future patients.

If any Ibrutinibers out there could offer a few words, I would be most grateful. P.W.

35 Replies

  • I'm just answering your post to move it up the list...so others will see it...

    I'm sure your Imbruvica (ibrutinib) treatment will be fine...


  • thankyou, I am not computer savvy......

  • There are many on ibrutinib who have posted on Http://www.cllforum.com. Some have been on it for several years in trials, while others have just started. It seems that the WBC / ALC tend to go up initially in most patients as the bad cells are forced out of hiding and into the bloodstream. I think it helps to know that ahead of time. It is frightening for patients who have not been forwarned. Joint pain and diarrhea are side effects that many have reported. Most find that these improve with time. I think you are fortunate to have been accepted into a trial of a drug that has already gone through extensive testing. While I'm sure there is more to learn about it, it has proven, so far, to be a miracle drug for some who had no hope and has been very effective I. Patients who held out for it instead of dealing with chemo here in the US. I will be interested in any bleeding issues you might experience, as I am on Coumadin, which would rule ibrutinib/Imbruvica out for me currently.


  • I understand that the heightened WBC/ALC counts are fairly inevitable but often return to normal levels 4-8 weeks after starting treatment.

  • I have been on Ibrutinib as a named patient for nearly 4 months. Yes, the white blood count did go up to start with but it is going down, quickly at first , gradually now. My large lymph nodes went down quickly and most importantly I am feeling better than I have for several years. No-one knows the long term effects of Ibrutinib but CLL is a somewhat mysterious condition and affects everyone differently. The main thing is to make the most of life and enjoy it while you can

  • thankyou very much

  • My husband has been on Ibrutinib as a named patient for about 2.5 months, about from his lymphocytes, which are still high but coming down, from very high, everything else is back within normal range. He hasn't had any side effects. We are very lucky to be in this situation and really appreciate the opportunity we've had. So wishing you luck with it and hope your results are as good. Just struggling to get travel insurance now because as soon as you mention Ibrutinib, which they've never heard of, the insurance companies run a mile.

  • I started ibrutinib 2 months ago my white count was 3 times higher the then others starting treatment. It was in combo with retuxan.... The treatment caused complication in the beginning and I stopped for two weeks but when I started back it's been fine all my counts are now normal...... I feel like I did ten years ago...... I am in a trial for untreated.

    I have no other health problems and not on medications. And I am 55.

    I just wanted to avoid chemo until I absolutely needed it but I'm feeling confident I never will.

  • thankyou for taking the trouble to reply to me, pw

  • Hello, I am in the US and have been on Ibrutinib for 3+ years, I began in one of the early trials.

    Ibrutinib works by forcing CLL cells out of the lymph nodes and bone marrow and into the blood stream where they die off at a rate just a bit longer than the natural white blood cell life cycle, which is 1~2 weeks. It does NOT increase the number of malignant white cells in your body just those in your blood, which happens to also be the place the docs can easily sample.

    My experience was my white counts more than doubled the first two weeks and were back below the starting treatment measurement within 6~8 weeks, and continued to drop from there although at a slower rate.

    Unfortunately, it takes longer for the bone marrow to clear and hence if you have low red cell and platelet levels it may take several months to a year or more for them to recover to normal levels.

    My only side effects were initial frequent, but not serious, diarrhea which decreased with time. OTC imodium should control it and I found taking a couple of anti-acid tablets (Tums) half an hour or so after taking my pills also seemed to decrease the frequency.

    Hope this helps.

  • thankyou so much for your very welcome comments

  • Just wanted to wish you luck as you start Ibrutinib. My mother will also be starting on it next month so your post was very timely!

  • thankyou so much. it is exciting but tinged with a little apprehension, but so grateful to be given the opportunity. pw

  • That is totally understandable. Fear of the unknown is always anxiety provoking. I am keeping my fingers crossed for you and sending good thoughts. I am so grateful to people like you, who despite the uncertainty and apprehension, forge ahead to make a better future for all of us. I also have CLL so I extend my thanks to you not just on behalf of my mom, but myself also!

  • thankyou very much, hope your Mum does well

  • Hi Lartington,

    I have no idea what a "wobble" is but having been on Ibrutinib for 38months now and having talked with many patients you should be not scared but alert to any unusual bruising or bleeding. This advice is only because of having to be on a blood thinner for which I have not heard of before nor have I talked with anyone who has. The serious bleeding events leading to deaths in our Clinical Trial were all with patients on Warfarin & associated with trauma. Recently one patient had a subdural hematoma while on Ibrutinib and presumably not on Warfarin so there is a very slight chance of this type of bleed. The mechanism for subdural hematoma is not well understood and is being investigated.

    Since Warfarin is a vitamin K antagonist one might assume that the anticoagulant you are now on acts to thin the blood in a manner that will not cause serious bleeding. If it is any comfort, I have had two surgeries while on Ibrutinib, both requiring blood thinning with heparin. I did notice an increase in general bruising and petechiae (small capillary point bleeds on the surface of skin) not uncommon to older people in the general population.

    I would be surprised if you did not feel much better in a very short period of time after taking your first capsules of Ibru. Drink lots of water with the drug and hydrate throughout the day with water.

    We Lab-Rats in the Clinical Trial got prescribed an antiviral (Valtrex or Valacyclovir) and that is a good precaution with any CLL therapy, in my lay opinion, due to the safety of the drug and the damage done if one gets a viral activation which is most likely after any CLL therapy. If you have problems with chronic infections this advice is even more important to discuss with your treating Doctor. I negotiated for taking 500mg per day rather than 1,000mg per day and have had no trouble yet. I am one of the lucky people who have a robust immune system even with CLL. That stated I had two colds in the first 8 months of being on Ibru and it is an observation that patients may be at higher risk early in the therapy curve for some infections they might have fended off if not on Ibru. All side effects for most patients are transient in nature.

    Your white count may rise substantially but that is normal and will come down as therapy progresses. Remember that the CLL cells are more dangerous in the nodes and marrow than in the blood. They are coming out of the niches where they do harm and into the blood where they will die.

    One other possible caution: If by chance you have lower than normal heart rate (<60bpm) You might experience heart arrhythmia. Mine started while on FR was worse with Rituxan monotherapy and needed attention with ablations and a PM (pacemaker) on Ibru. Doing great with no problems after 2 and half years post PM.

    May your therapy on Ibru be as effective for your CLL as it has been for me.


  • Re Valtrex. My doc also prescribed it with the rationale that we have compromised immune systems and are susceptible to viral infection such as shingles, etc. After about 9 months my blood parameters were about back to normal and I asked "Why am I still taking this?" She hemmed and hawed about "compromised immune system" and "unknown consequences" so I gave her my Obstinate Patient CYA card (Cover Your Ass) and informed her I was refusing to take it. She kind of grinned like she was relieved of an obligation and made no further effort to talk me out of it.

    PS. A year later I got the shingles vaccination, live virus or not. No problems.

    Sometimes it is helpful to help your doc navigation what they would LIKE to do as compared to what legal, bureaucratic and "industry standards" mandate what they SHOULD do.

    As a lifetime professional engineer I have a pretty low opinion of "standards."

  • Hi L-B,

    I decided to forego taking Valacyclovir this Spring for the first time in almost 3 years. I went all summer without a problem and in the last two weeks I had a return of my Herpes Simplex in its usual place of adornment at the base of my right nostril. Curiously, this perennial visitation was suffered for 25 years or more prior to DX in 2006 and disappeared or rather failed to appear the year my CLL was ramping up. I did suffer one recurrence when neutropenic after FR in 2009. Again it disappeared without an antiviral post FR until now while on Ibru and for the first Sept. without Valacyclovir since early days on Ibru. Two days back on Val and the site of infection is healing.

    Shingles is not the only concern as one of our fellow Lab-Rats, a healthy appearing man in his 50s by looks, developed CMV (Cytomegalovirus) which nearly did him in. He happened to be in a "cage" adjacent to mine and I overheard his story during monitoring. Antivirals, as you probably know, are not a sure fire protection but given the variance in patient immune competency going without an antiviral during and just after TX with any protocol is playing with fire when considering the near negligible risk from an antiviral like Val.

    When I decided to go without Val I still carried a supply with me anytime I left home overnight. Should you feel a viral activation coming on getting whatever value you can from an antiviral is time depended.

    It is hoped that patients reading your post understand that your decision to get the shingle vaccine which is a live vaccine is not recommended by any medical authority. No live vaccine should be taken by immune compromised patients.

    I respect any patient decision to chart their own path provided they understand the consequences, accept the outcome when bad and to have the courage to share what occurs with the community.


  • Oh, I understand the risks and consequences fairly well, it's just that I am probably more of a risk taker than most people and don't consider my immune system dangerously compromised right now.

    I guess I should add one postscript. I'm not a medical professional but my late wife was; a biochemist who spent most of her career in cancer and blood related research starting with the Atomic Energy Commission's biological research lab in the '60s. In the 70's she did several years pharmacology research at the MD Anderson in Houston, and her final years before retirement were spent with Amgen during their start-up developing Epogen (Procrit) and Neupogen. Over the 40 years of our marriage I absorbed some information from her, and during the 3 years she lived after I was diagnosed she attempted to give me a crash course in basic hematological oncology.

  • I am a risk taker also, having taken myself off various meds or refusing meds when I crashed from a deadly reaction to FR after sizing up my risk of compounding my already damaged kidneys as a greater threat with prescribed meds than not taking the anti fungal and bacterial meds that are hard on the kidneys. This was at a time that I had a Neutrophil count of .6 and barely came out of that experience alive. I took a chance based on my unusual ability to fight off infectious agents as demonstrated by the loss of two long-term chronic illnesses, one fungal and one viral and only one cold in 3.5 years to that point.

    For the benefit of others reading this thread it is important to understand that when you stated "After about 9 months my blood parameters were about back to normal" as a rationale to stop your antiviral med, that cell numbers are not always equivalent to cell function. A state of anergy within the cell populations having normal numbers can leave one just as or more vulnerable to infection than low numbers of immune cell types to include even low immunoglobulins. "Anergy" is like cops sleeping in their cruiser as the bad guys rape, pillage and plunder the community the sleeping cops are supposed to protect. Having a high ALC (Absolute Lymphocyte Count) which is a symptom of CLL itself does not mean one has extra B-cell protection to fight infection.

    I know you know this but newly diagnosed patients may not understand their particular risk profile as you do with your situation.


  • PS - IgA/G/M get tested every quarter with my check-ups so I'm not flying entirely on just WBC/ALC ... BUT

    Fwiw I will pass on that those various Immunoglobulins, which were more or less constant during the first 2 years of my taking Ibrutinib, have trended down over this 3rd year and are all 3 now in the bottom of range.

    When I agreed to go on this trial I posed the question "Won't this make me B-cell deficient?", to which no one had a firm answer at the time. I now have a suspicion that is so. But good to know it's a slow thing.

  • I just love your sense of humour.......... have shingles just now......... keep topped up on the californian red wine........

  • sorry, forgot to say, likewise professional engineer, we take a slightly different angle on life ??

  • Hi ThreeWs, I was diagnosed with CLL and Waldenstroms macroglobulin anemia in June. I started ibrutinib in August. I had a racing heart beat about 2 weeks after starting the medicine. My doctor said she could not understand why the racing heart rate, she did not have any other patients with that problem. She did drop my dosage to 2 tablets a day instead of 3. The racing heart rate did stop but now my white blood cell count, hematocrit and lymphocytes have increased again. I also have always had a slow heart rate < 55.

    I also got a bad case of shingles in December and she told me I could take the vaccine, but reading what you told someone else, it sounds like I should not.

    Thank you for reading and listening to me. I have not really talked to anybody about this that understands except my doctor.

    Take care and thanks for your positive attitude.

  • Hi irenerob,

    A racing heart rate is called Tachycardia when bpm (beats per minute) exceed 100bpm. Tachycardia was a direct side effect with me reaching 288bpm which is to say the right atria was quivering rather than beating. Cardio toxicity that also includes A-Fib is a recognized side effect with some patients and your Onc should have been aware of this. 1st red flag.

    It is well established that the state of most immune systems of folks with CLL/SLL can make Shingles a much more dangerous disease than when it occurs in the otherwise healthy population. There is no reason to suggest that in Waldenstrom's Macroglobulinemia that you are safer. Just the fact that you got Shingles is enough of an indication that you should not get a live shingles vaccine! cdc.gov/vaccines/vpd/shingl... Please discuss with your Onc the benefit of taking an anti viral medication. Yes, Shingles can strike you again. There are 3 antiviral meds commonly used Valacyclovir, Famciclovir & Acyclovir. We CLLers in early Clinical Trials were put on Valacyclovir. Dose varies but in high risk patients 1 gram has been used daily. I take 500mg. You might ask about a new attenuated vaccine that is being developed which might be safe but the advice you received for getting a live vaccine is a 2nd red flag.

    These 2 red flags would signal to me that I needed to switch to a CLL specialist at the very least for a consultation. CLL/SLL specialists have the most experience with Ibrutinib and side effects.

    Here is some information regarding 3 different flavors of WM. Ibrutinib responses vary accordingly.


    "Overall and major response rates were highest among patients with the MYD88L265PCXCR4WT genotype (100.0% and 91.2%, respectively), followed by MYD88L265PCXCR4WHIM (85.7% and 61.9%) and MYD88WTCXCR4WT (71.4% and 28.6%) (Figure 1A and 1B). Improvements in overall and major response rates occurred in all three genomic subgroups with prolonged therapy (>6 cycles) but were more pronounced among patients with MYD88L265PCXCR4WHIM mutations (Fig. S1 in the Supplementary Appendix). Best serum IgM (Figure 2AFIGURE 2

    Effect of MYD88 and CXCR4 Mutation Status on Ibrutinib-Related Changes in Serum IgM and Hemoglobin Levels.) and hemoglobin (Figure 2B) responses were also influenced by tumor genotype; improvements were most evident in patients with MYD88L265PCXCR4WT and least evident in those with MYD88WTCXCR4WT."

    Another possibly useful discussion to have with your Onc:

    "Plerixafor, a CXCR4 antagonist approved by the Food and Drug Administration for use in stem-cell mobilization, sensitizes Waldenström’s macroglobulinemia cells engineered to express CXCR4WHIM receptors to undergo apoptosis in response to ibrutinib."

    In the toxicity section for WM patients in the study:

    "Atrial fibrillation related to ibrutinib occurred in 3 patients, all of whom had a history of paroxysmal atrial fibrillation. Atrial fibrillation resolved after ibrutinib was withheld, without cardiologic intervention, and protocol therapy resumed uneventfully in all 3 patients. Dose reductions due to toxic effects, which occurred in 10 patients, did not influence responses or progression-free survival."


    "Responses to ibrutinib were influenced by MYD88 and CXCR4 mutation status. Overall, toxic effects of treatment were moderate, and no unexpected toxic effects were observed."

    Given that you appear to be first treated with Ibrutinib I hope you might expect even better responses than the NEJM article reports.

    Hope this helps,


  • Thank you so much for the reply. Thank you for taking the time to answer my concerns. It has been very helpful.

    Take Care and Thanks again


  • Correction:

    End of 2nd paragraph: The new vaccine HZ/su by Glaxo-Smith-Kline is an Inactivated and not attenuated vaccine. Attenuation is the reduction of virulence but still live and an inactivated means killed.


    Maybe close to prime time but without prophylactic antiviral med in the interim you may be vulnerable to another attack.


  • Shindrix is before the FDA, should see it in the U.S. market by the fall of this year if all goes well and 12-18 months later outside the U.S.


  • Thanks Chris,

    Good news - wonder how effective it will be in our community. I suspect it will be highly variable as most meds in CLL.


  • thankyou very much for your very concise and detailed reply, very much appreciated. surprised you haven't had a 'wobble'!!

  • Have been on ibrutinib 3 months. I had some problems with loss of appetite and lovely full body rash at the beginning, but that has cleared up. My nodes disappeared very quickly and my WBC is more than twice as high as it was, but I feel so much better. My platelets and hemoglobin are now within normal limits. I now just ignore the WBC, knowing it will probably stay high for a while. Someplace in a previous post on a different subject there was a quote of a couple of months to a year for WBC to stay elevated. Cannot find it, but it is reassuring. Good luck.

  • To ALL cllers , I am so very grateful to you all for the time and trouble you have taken to respond to me. thankyou. I suppose my main concern is the risk of internal bleeding, I am taking my last warfarin tonight and then going onto Tanzaparin for the duration of Ibrutinib - whatever that might be. I have taken warfarin daily for 8 years, so it will be like parting company with a dear old pal. Today I had my usual ivig infusion so am all set and ready to go now bring it on.......I am totally amazed at the number of e.mails and good wishes I have had from so many people, I hope I won't let you down pw

  • I am on ibrutinib have been for 17 months when they were doing testing to get me started they found pulmonary embolism in both lungs they started me on a blood thinner called Arixtra due to I would not qualify for study if on Coumadin my blood levels are good now not in remission but am doing very good now and yes my counts did go up at first but they started going down soon when I started my WBC were 174 thousand now they are at 3700 which is great good luck to you keep us updated .

  • thankyou for your reply. my husband had pulmonary embolism in his lungs, he had surgery to remove them......... life is a bummer sometimes isn't it??

  • i have been on Ibrutinib for over a year & initially my WBC's became quite high, but in a short time dropped dramatically. I now have almost completely normal labs. I do have some side effects, which I will not elaborate on, since everyone seems to have different side effects, but so far the side effects are not so severe that I have quit the drug. Bleeding has not been a problem for me. RK

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