What happens if I stop taking Imbruvica? Not happy with the effects. I was diagnosed 3 months ago and all I had was enlarged lymph nodes. Now I have bleeding wounds,rashes, AF tiredness bruising. I used to work out every day now I do nothing, every little knock on my skin leaves a blood blister. My doctors are fantastic and the service here in Spain is amazing, but they have the attitude 'Doctor knows best'
I started with 280mg then after 3 weeks 420. Haemotologist reduced to 280 again after I complained about side effects.
I recently walked 14KM along the beach and boardwalk...nothing for me. I had massive blood blisters and had to go (after a week) to A&E. that was 6 days ago.
I have dressings which now have to be changed every other day and new blood blisters on my toes and feet which have to be drained.
What is going on?
Anybody know?
Thanks in advance
Gerald (69 fit strong active)
Written by
windy532
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The side effects usually get better around month 6. You could ask to be changed to another BTK Inhibitor such as acalabrutinib, if available in your area. With CLL and treatment you need to be careful with your activities. May need to alter some of them, or use protection like shoes, sunscreen ect. If you stop ibrutinib your CLL will get worse.
If you are considering going off ibrutinib, then you need to be aware that tumour flare may occur, when your CLL can come back with vengeance: healthunlocked.com/cllsuppo...
From the experience of others, it is best to have an overlapped switch to your new treatment to avoid this. Even if you don't get a flare, after only 3 months on ibrutinib, unfortunately you are likely to need treatment again very soon.
I hope you soon see an improvement in those distressing symptoms. Evidence from long term follow-up does show that with the exception of cardiovascular side effects, the side effects do keep on reducing over time.
I will elaborate and I suppose update my profile similarly:
I Started working out at age 25 and have not stopped for any significant period. That's 44 years of constant physical activity. I was bodybuilding for a number of years, however only the bodybuilding protocol....not the drugs or competitions. I do not drive....I walk or cycle or bus everywhere.
I have always had a very good immune system...I just don't get sick!
I eventually gave in to my partners' well intentioned nagging and went to a private surgery in Gibraltar (I live in Spain) for an opinion about the lumps in my neck.
He said: 'It´s probably some kind of lymphoma, not cancer, but I would like to see a scan and perhaps a second opinion'
That was December 2019.
In Jan 2020 I went to my local health centre to see a doctor, to get a second opinion.
Unfortunately I encountered a 'jobsworth' who denied me access to a doctor. I then carried on my life as lockdown for covid had started.
In late July 2020 my lady insisted I go to a private clinic.
I eventually capitulated. I was told I needed a scan. The doctor with whom I consulted is an ENT specialist and arranged for my scan at the fantastic new hospital we have here in La Linea de la Concepcion España.
So to cut a long story relatively short....
46 visits to the hospital...3 biopsies of increasing invasiveness, 6 covid tests, 3 cat scans, a barium scan, a lymphectomy, a cardiology assessment, a blood analysis for past or present infectious diseases (Syphilis for example has a 20 year 2nd stage recurrence).
I have seen specialist doctors for each analysis. They have had various group meetings between the specialists to discuss my condition and the most suitable treatment.
All this, over a period of 7 months.
I can't imagine I would have been able to access the various facilities and specialists in that time span if I were still living in the U.K. (I left U.K. 1993).No offence U.K.......just stating the obvious.
I am seeing the hematologist/oncologist on Monday after yet another blood analysis.
My problem is this: if I say it´s ok and if the blood analysis continues to show improvement, should I make a point about the lesions/bruises/blood blisters etc. or just accept her advice?
If the former, she may increase to 420 mg again in which case ,if the latter I may suffer more serious setbacks.
Thanks for your update with your diagnosis background. What a nightmare diagnostic process you had to endure!
What is your current platelet count and what have the trends been in your platelets, haemoglobin and neutrophils? How much do you weigh? If your haemoglobin and platelet counts are reasonable and at least stable and improving and your lymphocytes reducing or back in tbe reference range, your specialist probably won't want to increase your Ibrutinib dose. Unfortunately, while there have been a few studies on Ibrutinib dose reduction, in my opinion they have not been well designed, particularly when it comes to recording patient weight.
Hi Oz, sorry for the delay...daily visits to health centre to have dressings changed on my feet.
Well I have to explain something. I have been here 28 years and not visited a doctor in that time apart from 3 minor treatments with a clinic in Gibraltar.
So the Hospital has nothing to go on. Therefore they have had to build a picture of me without having the ability from past records to maybe exclude possible causes.
The first few times in the hospital I was a complete wreck because I had no experience of Hospitals.
When I had the second biopsy in the theatre, they provided a male nurse to hold my hand and explain what was going on and what to expect. How lovely is that?
So, having explained that, you may understand that I have no idea what to look for in my blood analysis to answer your questions.
The white blood cell count is not specifically mentioned as far as I can see because it´s all broken down under the general heading ´white cells' .
So it's (for example) lymphocytes/basophylls/granulocytes etc. I dont really understand. However, when the results are printed, usually about 1 hour or so, the dodgy bits are marked and the Hemotologist tells my if something is wrong. So far it's all improving.
When I started on Imbruvica I had a weekly blood analysis and consultation. Then after a month it was 3 weeks to next one. Now my appointment on Monday is 1 month after the last one.
However, I had an an analysis at A&E for my foot blisters and looks ok based on the margins shown on the printout.
Sorry for the spelling mistakes. I´m trying to get the English spellings from the Spanish report.
I suffered from tumor flare up in a bad way, very painful for a few weeks after stopping Imbruvica,and Venetoclax came to the rescue. It made all the blisters and blood under the skin seem like a cakewalk. Please be careful!
Hi Schubert. Thanks for your input. It's just the blood thing now, not the lymph nodes. I´m seeing the Haemo 19/7 so Ill update after that, but I will use your input when I see her. Thanks
Hi! My husband was in W&W for 7 years. He started getting infection Dr said to start treatment. He start with imbruvica one pill first two weeks then two pills. Everything was working great lymph nodes get down WBC start lowering and Then 3 pills a day it is when my husband start getting those bad rashes and side effects. Dr stopped for a week and said start again and rash come back. So it has to stopped for 3 weeks then started with Calquence. Which was working great not side effects for the first year. Now after 15th month some lacerations on the skin that Dr prescribe steroids cream that helps. The labs are almost normal. He will to stop but Dr said not then CLL will return more aggressive.
That's interesting Chillo. I´ll keep that in mind. Fortunately here in Spain, I can see the specialists with very little notice, so I can go to her if the symptoms continue as you have described.
Hi, I am very confused why you needed all these tests. I was diagnosed in the UK 20 years ago. My white blood count was repeatedly slightly high when treated for another condition. I was asked to visit my doctor for a repeat blood test which was analysed and I was told I had cll. I had no symptoms and was told that until my numbers were higher I would be monitored. I didnt need all those tests.
This is the normal procedure. It was 9 years before I needed treatment. I was scanned and my lymph nodes were enlarged from my neck to my groin. My blood counts started to change more quickly.
You are so lucky to have this treatment because 10 years ago the treatment was chemo. Not fun but after 6 months there was no sign of the cll. I didnt need treatment again for 8 years.
I have been taking Ibrutinib for 2 years and there is no sign of the cll. If it stops working I will be given Venetaclax.
I do have side effects but they have improved. I do have fatigue and joint and muscle pain but I had back pain before. I have decided to stick with the Ibrutinib despite this.
The NHS has been wonderful. I have been treated for Epilepsy, had back surgery, CLL treatment and other smaller treatments. Im not lucky with my health and non are self inflicted.
Treatments for CLL are relatively new and there are other treatments which arent available in every country. Unfortunately its hard to know if a different treatment would suit us better. At the end of the day Ibrutinib is saving lives. The chemo worked but a drug called Rituximab was added and was a game changer.
The people we have to thank are the amazing scientists who have developed these amazing drugs. Who would have thought that we could pop a pill when we have this diagnosis.
You mention enlarged lymph nodes. What were the reasons to start treatment? I hope you dont mind me asking. Were your blood tests showing a need to start treatment straight away? Anne uk
I would ask you to refer to the reply I am about to send to Aussie Neil if you would be so kind as it´s pointless to post it twice.
But to reply your particular points:
I developed a lump on my neck just under the ear, which I attributed to an over enthusiastic workout with the weights. I still think that was one reason for the lump because it is definitely on the carotid muscle and is still there.
However, over a few weeks the swelling became noticeable and the following events are related in my missive in previous reply to Neil.
But with regard to your main question: Anne, I´m a man....we don't 'do' doctors. things just sort themselves out.
So, not having any major reasons to see a doctor, I have no medical history here. So everything they do is to construct a picture, with no history to which they can refer.
When you are a patient from a "highly developed country", the doctors in the other nation you visit feel the special motivation to prove their scientific level. Windy532 is located right across of one of the most exotic locations, Tangiers which is located across the channel from "British" Gibraltar, a rock on the southern coast of Spain. This may explain the assembly of specialist in Spain who conferred about Windy's condition. Sea como fuera: Adelante amigo y buena suerte !
Gracias Amigo. But this is not Spain it´s Andalucia. People here are just naturally kind and caring. Also,despite what the put in the newspapers, there is a lot of collaboration between Gib and Spain on these things. They don't need to prove anything.
The assembly of specialists to which you refer are all in the same hospital, opened 3 years ago this month. It´s an amazing place. I am so lucky.
Thank you for your good wishes. Reciprocated .o ígualmente´.
I don't know what you mean by a highly developed country? To its healthcare for example?
You are going to compare supposedly "highly developed" countries like the USA (where there is not even public health care) with a public health service (like Spain has (for everyone regardless of your purchasing power), one of the best in the world.
Calma amiga Gaviota : Aqui en las Americas estamos menos iritables y mas pausados ! Lo que quiero explicar : Estados Unidos tiene el dinero para atraer los mejores cientificos y el dinero para pagar el desararollo de los remedios avanzados. Los alemanes tienen los tecnicos para desarollar tecnica clinica. Espana no tiene tanta capacidad economica ni tecnica. Hay muchos de Estados Unidos adinerados que viven retirados en Mexico y cuidados por medicos mexicanos. Yo me someti a "turp" en un hospital en Montevideo-Uruguay. Pero en casos muy complicados - desde todo el mundo los adinerados vienen a las clinicas en Estados Unidos. La verdad actualmente, los servicios medicos para adultos 65+ con "Medicare" es "bueno": Pero muchos no siguen las indicaciones. La mitad de todos los especialistas medicos en Estados Unidos provienen de otros paises - inclusivo los que desarollan los remedios nuevos.
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