FLAIR trial Ibrutinib Rituximab arm. So....after first round I felt OK if tired, massive bruising, but am usually easily bruised so can cope with that, so long as no one sees my legs. By day 15 or so I had horrid mouth ulcers. And some muscle pain. Round 2 was 2 weeks ago, since when I have had severe muscle pain, in arms and knees. Really quite bad, not responding well to paracetamol, or even codeine. However each pain goes after 3 or 4 days (and a new one pops up, as if my entire body is being challenged.) I have talked to the medics on the phone, and established that this is a side effect for about 37% and most can tolerate it. So I am gritting my teeth for now. Of course main concern is HOW LONG OH lord how long. Will these effects continue while taking IB. I think energy levels are improving a bit, though so far bloods still dropping. But hard to say since I am so bushwhacked by pain and being irritable. (Sorry family)
Bloods as of dec 1st - note taken over phone - no Dr letter yet.)
Hb 10.7 (Previous 111)
White Count 287 (271)
Neutrophils?
lymphocytes 287 (265)
Platelets 96 (76)
Must ask if I can take Ibuprofen with IB. Dr was dubious of Ibuprofen gel so I am not sure. Anyone know?
Greetings and Merry Xmas to all!
Written by
romarin
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Poor you ROmarin. Certainly hope that things settle down soon for you . I would ask the medics about pain relief, they should be able to prescribe something to get you out of pain at least. Maybe you are not most people and need a bit of help. No shame in that as we are all different and react differently.
I hope that you can have a reasonable Christmas and certainly feel a lot better by 2016.
Thank-you so much for your sympathetic response. It really helps. Feeling a bit better now - but now aware that I need to be ready for the next whammy!
Very sorry that your start on Ibrutinib/R has been accompanied by such pain and bruising. Your platelets look as though they are starting to respond but you will need a watch the trend. The pain/arthralgia is becoming a regular topic of discussion among users of Ibrutinib, it can be acute but in most people it disappears over time, but unfortunately not overnight! I hope that others who have had the same experience can share their pain relief methods with you.
Thank you for posting your experience of side effects, it is important that we get to understand the profile and range of effects of these targetted drugs as they become more widely used. As you rightly say, we have the percentages of patients experiencing adverse effects from the early trials, but sometimes this leads the clinicians to acknowledge it as adverse but then not assist with overcoming the issue which can be fairly debilitating. And we don't like to winge now we have this new generation of drugs at last, but quality of life must start to improve too or we won't see as much of the gain.
I will post separately to encourage more patients to tell us of their adverse effects as I will be at the first NICE appraisal meeting to approve Ibrutinib in early February and will be representing the range of patients needs and experiences.
Best wishes for a swift improvement and an enjoyable Christmas season.
Many thanks for this response. I am trying to be useful in my description of side effects. I have expressed this to the medical team who now agree that we need to understand them better. It is good to hear that the arthralgia is being investigated and even better than it seems to disappear over time. This makes it worth gritting one's teeth....
I would be pleased to offer more details, if helpful.
Tricia,I would like to add my experience of being on the flair trial -I & R arm.
I had my 4th round of Rituximab last Tuesday (8th Dec) and have have very similar side effects to Romarin. Fortunately, paracetamol have worked for me in reliving the pain.
Like Romarin, I have had random, intense pains that only last for a few days. Today, I have a swollen right wrist with a painful joint which started yesterday. Last week, my knees hurt so much during the night, I had difficulty walking to the toilet. Also, after each round of Rituxiab, I have one large pustule appear, which eventually shrinks in size with a bruise around it.
After my 2nd infusion, I had flu-like side effects, without any respiratory symptoms along with anxiety and mild depression. My whole body ached so much that I I found it difficult to turn over in bed. These side effects wore off a few days before my 3rd round and I felt myself again.
I explained all of this to my consultant who was very dismissive and I didn't really listen to me. In fact, in her letter to my GP, she describes my symptoms as 'vague'. She actually looked on Google for side effects of I & R while I was with her... Not very reassuring.
Overall, This past two days I have been feeling better (other than the wrist pain). Less achy and more upbeat. My Blood is improving and neutrophils are 0.95 un-aided by G-csf.
White blood count is 10.9 compared to 26.51 and lymphocytes are 8.4 compared to 24.63 at the start of treatment. Some nodes are still hanging around but I'm am only half way through treatment. My need for treatment was due to neutropenia and 80% CLL bone marrow infiltration.
Thank you Mudlark. Sorry to hear that you are having the combined adverse effects of both Ibrutinib and R. Your experiences are not the first that I had heard of this and I'm glad to hear that you've picked up recently.
Your consultant's focus is to keep you on the trial and the drugs unless the toxicity becomes too much or you stop responding. It can be difficult to explain the difficulties that we have with adverse effects and it doesn't help when we are simply told that they could be expected by the doctor. We are not asking to be taken off the drug, simply advised on how to minimize the chance of adverse effects and reduce them. I find the infusion nurses are the most helpful as they control the rate of infusion and prophylaxis and even if you have tolerated previous cycles I find that it pays to take it slowly, better to sit there longer and not have the adverse effects afterwards.
These adverse effects can greatly reduce our quality of life and we are right to try to find solutions to them. I think that most consultants priorities are different, they are looking at the response of the underlying disease, blood results and changes in B symptoms. But if you were to report that the adverse effects could not be tolerated you would probably get a different answer. The word 'vague' was unfortunate in the letter to your GP.
I hope that you are more comfortable over Christmas and can enjoy the festive season.
I am now having my third horrible episode of shingles. I have been on Ibrutinib with Aciclovir ( UK retro viral drug) with no side effects and I was feeling great after two months. However in the second month of Ibrutinib my hospital stopped the Aciclovir and I wonder if this allowed the shingles back in? - although I'm back on it again now. Anyone got any shingle remedies for the pain and itching?
So sorry to hear about your repeated shingles episodes. I don't understand why you would be taken off Aciclovir whilst still on treatment, this is when we are most at risk from viral reactivations. Valaciclovir is my preferred anti-viral and they would have to prise it from me now. Aciclovir did nothing to halt the march of my first attack of shingles after which I lost the use of my arm and shoulder for 2 years. I have PHN to this day.
The pain is eyewatering and your GP should try every remedy they can until one works for you. If you can take Pregabalin for even a short while it can help. I found Gabapentin was too powerful for me. Amytriptiline has been researched (1987!) and shown to reduce the ongoing PHN if taken early.
Distraction worked best and gently touching the affected area close to the rash, very soothing.
Thanks Tricia, much appreciated first hand information information. I have just taken my first Pregabalina as Paracetamol doesn't even touch the pain and I can't take any morphine based pain relief as I'm sick with them. I'll ask my CLL nurse tomorrow about Amytriptiline, when should one start taking it? - at the end of shingles or if/when you develop PHN?
You wouldn't take it if you are already on Pregabalin. It is an alternative. The research that my consultant pointed me to, showed some evidence that taking Amytriptiline during the early phases of shingles reduced the likelihood of post hepatic neuralgia afterwards.
But if Pregabalin gives you some relief then I would stick with it for now.
I only took it for a short while as it made me drowsy and 'detached' but it did break that cycle of the acute excruciating pains that I remember so well.
I hope that you had a reasonable night, always the worst time. It took about 3 days for Pregabalin to really kick in for me so please persevere with it unless you find it completely intolerable.
I found that it helped to do other things for myself while I waited for it to kick in. I've mentioned distraction and the use of touch, depending on where your rash and the worst pains are, I used a cool pillow called a 'Chillow' which cooled down the areas close to the rash that were inflamed, and had a tepid wash regularly to reduce inflammation.
Are you on Valiciclovir or Aciclovir? valaciclovir is more expensive but it seemed to have a much better effect on me than aciclovir which did nothing at all to slow down the rampant rash and inflammation.
We're all different, and all we can do is ask our medical team until they get it right for us.
Thanks for all your suggestions, I'll try the 'Chillow' and the washes. I've asked my hospital team about the Valiciclovir but last night the Pregabalin kept me awake all night so I'm just taking the paracetamol now.
Romain, it's hard to describe how much appreciation I have for what you are doing for others as you try to do for yourself. Thank you for your persistence, your determination, and your optimism. I will be in a clinical trial probably within the year. It is marvelously encouraging to witness your courage and grit as an example. Hope I have half your spirit should things get ugly.
"Never give up. Never ever give up." Rough paraphrase of the total content of a Churchill speech
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3 month into flair trial (ibrutinib & retuxinab)
