Ibrutinib advice please : As a CLL patient I am... - CLL Support

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Ibrutinib advice please

Benny12
Benny12

As a CLL patient I am now going to start Ibrutinib next week & have been told I will be prescribed Aciclovir as well. I was prescribed this short term when I had chemo but have never had shingles. I know shingles is horrible but I think the risk is quite low so I should be interested to hear from others on the topic.

Also in my previous query people responded to the side effects of Ibrutinib saying they were manageable. Is this manageable by more pills to ease symptoms or that the symptoms are so slight that they don’t have much impact on daily living.

Thanks for any advice received

30 Replies
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Newdawn
NewdawnAdministrator

Hi Benny,

I started Ibrutinib end of Feb on a clinical trial but my Consultant has chosen not to put me on Aciclovir to take with it. I agonised over this decision but we compromised on keeping a prescription at hand in the event of shingles making an appearance. Time will tell if this is a wise move but in truth I’m reluctant to add more meds to the regime particularly as some people can have side effects from the anti virals.

Ibrutinib varies in its side effects but a high proportion of people seem to encounter diahorrea initially (I did) which eases. My main issue is Petechiae and arthralgia but I already have arthritis so the vulnerability was there.

It’s a highly effective drug and ‘melts’ the nodes rapidly. My fatigue is eased too but each one of us experiences it slightly differently.

I wouldn’t hesitate to recommend Ibrutinib but the possible side effects need reporting and monitoring. You may not even experience any!

Hope it goes well.

Newdawn

Benny12
Benny12 in reply to Newdawn

Thank you Newdawn. A very helpful reply. Hopefully I won’t get any side effects but I bruise easily & have oesteoporis quite severely so I’m slightly worried about some issues. I shall think positively though.

Benny12

Hidden
Hidden

depends on the person. some get the serious side effects and have to stop. some get the minor side effects but need some medication like for diarrea that is not excessive. some like myself -i have been on it 3 months -have minor stuff that requires no medication. my fingernails are somewhat brittle and my hair has a different texture.

Newdawn
NewdawnAdministrator in reply to Hidden

Interestingly my hair has developed a different texture too. People suggested Ibrutinib makes your hair curly but mine has gone dead straight and finer! Not majorly important in the scheme of things of course but a side effect nonetheless.

Newdawn

Hidden
Hidden in reply to Newdawn

My hair feels different to my touch. not sure exactly how to describe but it is different

june65
june65 in reply to Newdawn

I’m definitely in the curly camp.

Cllcanada
CllcanadaTop Poster CURE Hero in reply to Newdawn

I went from Kojak on RCHOP to Shirley Temple on Imbruvica (ibrutinib), then patchy on Zydelig (idelalisib)...

Not sure which look I like best... 👨🏼‍🦳👨🏼‍🦲👩🏼‍🦱👴🏼

So now I simply cut it very short... fuzzy peach.. 🍑

I still have phenomenally rapid nail growth... need to clip them every few days.. likely rewrote some DNA...

~chris 🇨🇦

Benny12
Benny12 in reply to Cllcanada

Interesting. I’d quite to go more curly!

As to your first question Benny, I was also prescribed acyclovir with my ibrutinib. I do not know how to quantify the risk of shingles, its just that shingles can be so awful for us that are immune compromised that my doctor prescribed acyclovir. While I like taking as few drugs as absolutely necessary, I had no side effects I could tell from acyclovir so from a risk/benefit analysis, I never questioned it.

I think it has to be an individual choice. For me its like having fire insurance on my house, while the risk of a fire is low, the damage from a fire is great. As a side note, I just finished my second shingrix shot and am no longer on acyclovir.

As to your question about ibrutinib side effects, that depends very much on who you talk to. Some people have no real side effects, some have very mild side effects and some have intolerable side effects.

For me the side effects have been mostly mild and manageable. The worst one is my blood pressure went up about 15 points, just enough to cross the line for me to take a blood pressure medicine. My only other side effect that lasted has been mild diarrhea, which I think is the most common side effect of ibrutinib. Other common side effects of the mostly mild variety include brittle nails and joint pain.

My sense is that most people experience tolerable side effects, but some have to stop ibrutinib or reduce their dose due to afib, bad rashes or severe joint pain.

The good news is that as a front line treatment, resistance to ibrutinib is relatively rare. Its a very effective drug for most.

Benny12
Benny12 in reply to cajunjeff

Thank you cajunjeff. That is is a very good comparison to fire insurance. I like it. Also for your helpful reply. Glad to hear your side effects have been mostly mild & manageable. I shall be monitored quite thoroughly initially it seems & a blood test every week.

Benny12

As others have said here, you may not experience any side effects at all. But one of the more serious possible side effects to watch for is atrial fibrillation. After six months on ibrutinib, I was hospitalized for AFib. It was quite serious because the usual drugs they treat it with are contra-indicated with ibrutinib so they had to wait 4 days for the ibrutinib to clear my system before they could give me anything. I went "code blue" 3 times in those 4 days. Finally on day 5 they could give me a huge push of amiodarone which brought my heart rate down from 190 to 40 within seconds. I was discharged on day 6 with a prescription of metoprolole for the AFib and slowly ramped back up to a full dose of ibrutinib under the watchful eyes of my cardiologist and CLL specialists. It's been 6 months and I'm doing just fine - all other side effects of ibrutinib are mild and manageable. I am grateful to be on it and hope to stay on it - it's a "wonder drug" for CLL.

Benny12
Benny12 in reply to TimHB

Thank you TimHB for sharing your experience. Glad to to hear you are now doing fine & that that you think Ibrutinib is a wonder drug. That’s very positive

Benny12

Ibruntnib side effects are pretty manageable , it all depends though as everyone reacts different.

Benny12
Benny12 in reply to Canuck901

Thank you

HiddenThis reply has been deleted
Benny12
Benny12 in reply to Hidden

Thanks for that Scot. My hair is wavy so I’m looking forward to a few more curls! I’ve been wondering when to take it so I’ll bear in mind what you say. I do drink quite a lot of water anyway but it will be difficult to drink 2 litres I think. Thanks again

Benny

One of the major effects I found was getting my mojo back, basically I got better ( a year later it surprises me how down I was) & and taking a few more pills in the morning is not a problem, an Amazon echo reminds me to take my pills.

Benny12
Benny12 in reply to zaax

Thanks for that

As part of a Phase 2 clinical trial my wife (FL) took Ibrutinib for 14 months. She stopped Ibrutinib due to progression in October 2014. She had horrible leg cramps while taking Ibrutinib, and 4 years later she still has leg cramps, although less severe.

Benny12
Benny12 in reply to wmay13241

Oh dear. I hope they are not too debilitating.

Thanks for sharing with me

Hi Benny. My husband (56) started Ibrutinib (first line) back in October. The side effects have been annoying but manageable.

Rashes-these come and go...sometimes quite severe. His worse ones were on the back of his leg. They can last hours or days. Managed with doublebase emolients

Dry skin-overnight! Wow this was a shock when he left a pile of skin behind. Again use a strong moisturiser.

Spots-like rashes these can pop up anywhere...fluid or even pus filled.

Small but deep cuts on fingers-these just appear from nowhere! Covered with plasters and for relief use Sudocream.

Hard sore/dry lumps on hands-as above.

White, brittle nails that fall off-watch for infection. Use gloves when washing up.

Flickery eyes-first thing in the morning his eyes don’t adjust to the light. This has been confirmed as a side effect by his specialist.

So like I said all manageable and of course everyone is different.

The thing I wasn’t expecting was although the IB is doing a fantastic job by bringing his WBC down and making him feel normal.....his immune system is shot. In 5 months he’s had Hepatitis, 2 chest Infections and now a fungal infection on his right lung.

He had the Shingrix vaccine in November but is starting a low dose precautionary antibiotic for the foreseeable.

BUT, and this is a big BUT, he works full time (ish) walks on average 5 miles a day and feels good!

Good luck on your journey.

Amanda

Benny12
Benny12 in reply to Starky67

Thats interesting Amanda. It sounds like a nasty cocktail of side effects to me together with a shot immune system. I’m glad to hear your husband feels normal now despite all these things, walks a lot, feels good & is able to manage these side effects. He must’ve felt awful before taking Ibrutinib! Good luck to him.

Before I was diagnosed 9 years ago I never had any symptoms & neither have I since. It is only evident in continually rising WBC. So I have felt perfectly well apart from unrelated ailments & some unpleasant effects of chemo.

So I think any side effects to me is going to be a blow.

Hopefully I won’t get any!

Thanks again

Benny

As I understand it if you had chickenpox you are especially at risk for shingles. The virus stays dormant in your system.

I had some terrible side effects however they were probably or may be do to the fact I was eating licorice and taking turmeric that has glabridin which is an inhibitor of Cyp3A4 which is a enzyme that breaks down Ibrutinib. So I guess I overdosed myself and had to stop for a week, then reduced dose. Today I start back on full dose. If that was the culprit I expect to be ok, if not back to the drawing board. I am a little nervous though. The initial side effect was diarrhea, that lasted 2 days then knee pain that went away in a couple of days. Also some bruising and petechia I felt great, lots of energy. Still feel great.

I don't want to quit because I feel its a good drug to be taking. My nodes and spleen went down in just a few days. Wbc wasn't effected yet however that's to be expected. LDH dropped dramatically.

Benny12
Benny12 in reply to country76

Thanks for that. Yes, I’ve read that certain things are to be avoided while taking Ibrutinib so best to do so I think.

I’ve read that Vitamin E & fish oil should be avoided too but I’ve only seen that in one report. I’ll be discussing it on Monday with my doctor so hopefully I will get everything confirmed before I start on Ibrutinib.

It’s understandable that you are a little nervous. I shall be very nervous to start with.

Good luck to you & I hope it works for you now

mrsjsmith
mrsjsmith in reply to Benny12

Hi Benny,

Not sure about vitamin E but I know fish oil is a no as well. I was surprised until I looked at the back of my jar of Omega 3 and saw it said not to be taken by haemophiliacs ! I assume some bleeding problems ?

You will get used to it, but I sadly still miss my Seville marmalade in the morning.

Colette

Benny12
Benny12 in reply to mrsjsmith

Thanks Colette. Sounds like it must be due to bleeding. What about oily fish. Can you still eat that or is it just capsules?

I eat bran cereal for breakfast so I might have to reduce it as it sounds like Diarrhea is fairly common!

Benny12
Benny12 in reply to mrsjsmith

I’ve just come across this comment for both Vitamin E & Omega 3 fatty acids on the drugbank website.

‘ May increase the antiplatelet activities of Ibrutinib’

So you were right

mrsjsmith
mrsjsmith in reply to Benny12

Morning Benny,

Good it’s always sensible to check and if you have a specialist nurse check with them if you are not sure.

I keep meaning to add oily fish to my diet ! I am sure they are fine and have not read anything to the contrary.

I would carry on with your breakfasts. I avoided diarrhoea luckily. Hope you like me have minor side effects.

Colette

country76
country76 in reply to Benny12

It seems like a lot of people don't have many problems or they are tolerable. So good luck to you and hope everything goes well.

Benny12
Benny12 in reply to country76

Thank you

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