The flip side of Ibrutinib; the roller coaster continues (atrial fibrillation / flutter)

[charliegirl]

The last few weeks have been pretty scary to say the least!

Following my previous post about atrial flutter (like atrial fibrillation) starting about 4 months after commencing ibrutinib, my haemato-oncologist stopped the ibrutinib (420mg daily - 0 stat) in January, with the plan to re-assess after a month during which time I would have seen a cardiologist.

I saw a very helpful cardiologist 4 weeks ago. His concern was the significant stroke risk that the paroxysms of atrial flutter I was experiencing was exposing me to (with the less efficient contractions of the atrial chambers of the heart during af/flutter, a clot can build up inside the left atrium, and a small fragment break off into the peripheral circulation, reaching the brain and blocking an artery, so causing a stroke).

Normally this would be managed by prescribing warfarin, to thin the blood and so reduce the risk of stroke. However, warfarin cannot be prescribed together with ibrutinib, because of the latter's adverse effect on platelet function. He arranged an ultra-sound of my heart, to check the function of the heart as a whole, and was researching more modern anticoagulants - although it was unlikely that they would have been suitable. A permanent solution would be an ablation of the nerve fibres in the heart which were driving the atrial flutter. Scary, but done either as a day case or with an overnight stay in a specialist unit. On the other hand, if the palpitations stopped while I was off ibrutinib, no action would be required as long as I stayed off the drug. Some choice!

A nose dive happened a couple of days later at the beginning of February. I had been feeling very tired and wan, eventually progressing to vomiting. This led to an emergency hospital admission, when the initial concern was that I had had a stroke. However, I had a severely elevated blood calcium level (4.3 mM), causing both the drowsiness and the vomiting, as well as confusion, difficulty talking, and walking. After 10 days in the oncology unit, with masses of iv fluids, pamidronate (to lower the calcium) and antibiotics for a fever, I was well enough to come home and am now starting to build up my strength again.

Where am I now, and has this any relevance for others of you on ibrutinib? I had previously had a less severely raised calcium level on another drug (lenalidomide) and it is likely that I am simply a biochemical oddball who has a tendency to calcium problems which are unmasked by drugs which destroy the CLL cells. Will the calcium rise again once the pamidronate has stopped working? Time will tell.

What about the heart? I am very rarely aware of any palpitations at all. The high calcium might have been making them worse, as I am sure it had been gradually rising for some time before the acute crisis.

How about ibrutinib and me? My total WBC prior to starting ibrutinib was 100,000. The last count was10,000! I had 4 wonderful months on ibrutinib before my troubles started. I had forgotten what it was like to feel really well, and would love the opportunity to feel so well again. Maybe at a lower dose, and monitored more closely. I'll have a better idea after my next hospital appointment in 2 week's time

In the meantime I raise a glass (sorry, only water at the moment) to those of you on ibrutinib and hope that you will continue to benefit from the amazing difference it can make to life as a CLLer.

[splashsplash]

There does seem to be an ugly side to Ibrutinib the wonder drug. Of course there has to be side effects to all drugs but I always imagined the new KIDs drugs would be better than the horrible chemo ones. Anyone got positives to report?

[AussieNeil Partner Administrator]

Charliegirl, thanks for your excellent summary of your challenging times with Ibrutinib. It's good to hear that despite the tough times you've been through, you did see a significant improvement in your CLL and also feel so much better. Heart related issues do appear to be one of the more common serious side effects of Ibrutinib and I've amended your post title so others can more easily find it and if they wish, reply with their experiences on this specific topic.

Here's the link to your previous post The flip side of ibrutinib? Atrial fibrillation/flutter

healthunlocked.com/cllsuppo...?

Feedback on other side effects of Ibrutinib/Imbruvica can be found here:

healthunlocked.com/cllsuppo...

Neil

[charliegirl in reply to AussieNeil]

Many thanks for this Neil. I suspect the heart side and potential increased stroke risk with AF are going to receive more coverage as numbers treated with ibrutinib continue to increase.

All best

Charlie Girl

[AussieNeil Partner Administrator in reply to charliegirl]

I suspect you are right about that - and for which we should thank all those that have trialled the drug so that we can identify and quantify the risks and find the appropriate response. So thanks!

Neil

[wroxham-gb]

Charlie girl

I do so hope that you soon feel better. My best wishes to you and hope the next glass is something stronger.

Sue

[charliegirl in reply to wroxham-gb]

Thank you so much, Sue. Your words are much appreciated

Charlie Girl

[hopefulbunny]

So sorry to hear you've had such a rough time Charlie girl. Hope you can go back on ibrutinib at a lower dose with no ill effects. I'm still at the early stages of CLL and info about new drugs from other members of this wonderful site is so very important - thank you for your keeping us informed. My very best wishes go out to you,

Dori

[charliegirl]

Thank you so much Hopeful Bunny, and best wishes

Charlie Girl

[Berrytog]

Hi Charliegirl

This is a very interesting subject. All of us on Ibrutinib have the odd symptom that when we refer it our trial haematologist looks at us quizzically and says very little. I am sure there are common denominators but unless they think they are life-threatening they are not concerned other than recording the details for their employers. Now you mention it I have your symptom, every so often my pulse goes from fifty to just under one hundred and lasts for a couple of days then back to normal, I had put it down to stress but my doctor had little comment and just asked me what I had been doing and my blood pressure remains normal during the experience. I have had the same lack of interest to the bone and muscle aches in the upper arms and shoulders as well as brittle finger nails and sore cuticles. So next time I report I will labour this symptom and tell them that others on Ibrutinib have the same problem.

[SycamoreN in reply to Berrytog]

I've been on Ibrutinib for 7 months and I too experience bone and muscle in my upper arm and shoulder.... I hadn't made the connection between the pain and Ibrutinib but perhaps they're related?

[Berrytog in reply to SycamoreN]

Good morning SycamoreN

I am sure all these problems are related and if you are on a trial like myself we have a responsibility to point out anything that is different. My nail and cuticle problem started when I started treatment as did my muscle and bone pain, it was not there before and others on this treatment have mentioned the same problems but they ease with time and tend to come back a little with bad weather. My bone pain to start with was very bad and I could not sleep so I took the odd painkiller in the night and for my fingers I use E45 cream two or three times a day. Recently I have been getting Tinea, what used to be called Ringworm and apply cream for that but the constant skin infections that I had when I first started have gone (for the moment!)

WE are Guineapigs but I have to say, on balance, I feel generally healthier than I have been for many a year, paricularly with no chest infections that continuously plagued me ( I am now touching wood!) And since I started on Ibrutinib I have not had a bad day or symptoms or side effects and would not have been able to do what I do with FCR.

So I sing it's praises and hope that there is a cure around the corner.

Kind regards

Berrytog

[charliegirl]

Dear Berrytog

Many thanks for your reply. I'm interested in your changes in pulse rate. From the manufacturer's info it appears now that as many as 10% of patients develop AF. Before I discovered this I went to my GP about my palpitations. She arranged an ECG there and then, but this brief snapshot did not capture any rhythm problem. She then arranged a 24 hour ECG (wearing a monitor) and it was this that showed up the AF - which I was then able to show to my haemato-oncologist. It might save time if you considered this route, but obviously depends on when your next hospital appointment is.

Best wishes for your ongoing treatment.

Charlie Girl

[Berrytog in reply to charliegirl]

Hi Charliegirl

Thanks for your reply, I have been on Ibrutinib since September before last, so eighteen months. My Trial doctor spotted my heart missing a beat or two about eight months ago and sent me for the usual tests, I am due a hip operation so they did more tests and concluded that it was calcification due to age(69). My GP expressed only mild surprise and suggested a trip to a consultant but I must admit that I have not had the time due to stress and pressure of work. The fast pulse with normal blood pressure has only happened a few times and does not appear to be triggered by anything specific. Reading about it on the internet, it seems of little concern if the pulse is within the stated norm or under one hundred and happens occasionally. It is strange that it lasts for two days, there is little sign of it when it happens, today it is back to fifty four which is low. My next appointment is mid March and as I have said I will mention what you have said and post their response.

One of the downsides, or flipside as you say, is typing with aching shoulders and more paticularly sore cuticles and split finger nails, I keep changing fingers!

All for one and one for all,

Best regards,

Berrytog

[dwolden]

Thank you for sharing your story. Sorry for your troubles, hope things improve.

[Ansll]

I have had two cycles of FCR and developed severe neutropenia finishing up in hospital for 6 days with high fever. My oncologist has organised now for me to start with Ibrutinib as I am allergic to Rituximab. Thanks for sharing your experiences. My CLL/SLL has moved into my tongue, throat and around my ears. I wonder if there are more patients on the forum where this has happened?

[SycamoreN]

Dear Ansil, can you tell us more about your CLL moving to your tongue, throat and around your ears, please? What's happening there, and how do you know it's the CLL?

[Ansll in reply to SycamoreN]

Thanks Sycamore.I got a biopsy that confirmed it. Yesterday I started Ibrutinib after a long battle with infections. Chemotherapy was postponed 3 times due to severe neutropenia ( 0!!) and then I got compassionate access to Ibrutinib now wcc has increased. Thanks for interest. Pressure in my head is on the increase.....anybody else knowledge of this ssymptom?

[AussieNeil Partner Administrator in reply to Ansll]

Patients on Ibrutinib nearly always see a substantial increase in their Absolute Lymphocyte Count - upwards of a 50% increase in the early months or so of treatment, so it is quite usual to see your WCC increase. It is caused by the Ibrutinib countering the way the cancerous lymphocytes protect themselves by sequestering themselves in the lymphatic system - nodes, spleen, etc. Because Ibrutinib defeats that ability, they get flushed into the bloodstream, where they die! Your specialist should be well aware of this behaviour and you should have been warned to expect it, as it shows the drug is working well. This behaviour was not expected when the drug was first trialled and caught researchers by surprise. It still catches out less well informed oncologists/haematologists.

Neil

[Ansll in reply to AussieNeil]

Thanks Neil. Would you know how much exercise is safe? I love hiking and Rogaining and try hard to keep fit when I am feeling ok. Aussie Ansll

[AussieNeil Partner Administrator in reply to Ansll]

Ansll, I couldn't even work out what safe level of exercise was safe for me for well over a year, so unfortunately it is something you have to work out for yourself. I used to cycle to/from work over 110km a week and I could generally keep up/pass with buses. A Cytomegalovirus (CMV) infection and following frequent illnesses from my lowered immune system really knocked my fitness badly and it took me a long time (several years) to gradually rebuild it to an acceptable level. My problem was I'd feel OK on a good day and inadvertently overdo it to my cost for several days, so I'd negate the benefits of the good day's exercise.

If you don't suffer from fatigue after hiking or rogaining, then you probably are doing fine. By all means keep up that exercise, but until your neutrophils are at least above 1.0, always carry antiseptic and band aids with you for quick application to any cuts or scratches. I carry a small dispenser of Betadine with me on hikes after needing IV antibiotics for a week in hospital from a small cut when my neutrophls were around 0.75. Exercise actually releases neutrophils from your spleen, so don't do any vigorous exercise before blood tests or you'll get a false sense of your ability to fight bacterial infections.

Neil

[Ansll in reply to AussieNeil]

Thanks

[Ansll in reply to Ansll]

Thanks Neil that is helpful because everybody is always telling me that I am doing too much exercise but it makes me feel better. When I am unwell I rest and am pathetic!!

[AussieNeil Partner Administrator in reply to Ansll]

My family were telling me that I was overdoing it and they were right! Over exercising reduces immunity in elite athletes, but I don't know how that translates to CLL patients with compromised immune systems. Provided your neutrophil levels are sufficient so that you can keep on top of bugs that are innate in your body (consensus seems to be above 0.5), I can't see how gentle exercise from walking should be any trouble, but that's a layman's perspective. Just gradually increase your exercise until you find yourself overtired (well more than usual) the next day then back off before slowing increasing again.

[purrdog]

I have commented before on my experience taking IB. While my WBC came down nicely from 90,000 to 18,000, my heart was going in to severe afib. I was unable to sleep and some muscles in my thighs became hard as rock.

I reported all this to my oncologist and she had me stop taking IB. It has now been 10 to 12 weeks since we discontinued the IB and I feel pretty good and my WBC has pretty much stabilized. I told my oncologist I wasn't sure I wanted to ever go back and take anymore IB. If I ever do, it will have to be a much lower dosage.

I know side effects of many medications vary greatly with patients, but as they say........sometimes the cure is worse than the disease.

Incidentally, I failed to mention my diagnosis was CLL with 17p deletion.

[charliegirl in reply to purrdog]

Dear Purrdog

I m glad to hear this update from you.

Enjoy feeling well. It's a tough decision as to whether you and your consultant will want to try Ibrutinib again. There are of course more drugs like IB in development. Maybe they will have greater specificity

All best

Charlie Girl

[lartington]

Hi, my husband has been on and off Ibrutinib since last September, he has had many years taking Warfarin for a serious lung problem, he was placed on Fragmin which he self injects daily to replace the effect of warfarin. he also has beta blockers twice a day for an erratic heartbeat...... maybe your MAN could consider these options for you??