Taking Imbruvica

[oso7672]

Hi, my DR wants me to start Imbruvica but reading all of the side effects scares the crap out of me. The Pharmacist, literature and internet all say, i will get the runs, rash, I cant eat berries, no coffee, nausia, vomiting, I have to take it every day at the same time, need to wash my hands all the time, cannot go on cruises, the mall or work. What am I to think. Please, I need to hear from someone who is actually taking this to determine if this is right for me. Thanks Rosa

[J_88]

Why can't you go to the mall or work or on cruises i never heard that before ever? And most or all of those side effects go away after a few month.

[Hidden]

i've been on Imbruvica for over 3 months. I drink coffee everyday. i have had none of the effects you listed. However you might . If you read about it carefully you'll find about 20 percent of people get the serious side effects about 80 percent get only minor or none.

however it does weaken you immune system somewhat. except for the cruise you can do all those things. I shop regularly for us. i go off peak times to avoid mobs. I do take a mask if i have to.

[J_88 in reply to Hidden]

Why can't you go on cruises?

[Hidden in reply to J_88]

of course you can go on a cruise. However your immune system is compromised somewhat from imbruvica. your on a ship with masses of people some of whom will be infected with germs. catching something will be more likely.

[J_88 in reply to Hidden]

Dosen't your immune system go back to normal after a while on Ibrutinib?

[Hidden in reply to J_88]

i assume if your labs are all in normal ranges your probably aok. since i'm not at that point i haven't considered that yet.

[cajunjeff in reply to J_88]

I think there is some evidence that ibrutinib helps to restore our immune systems. But that’s a lot different than saying it restores our immune systems to what they were before we got Cll.

Everyone is different and some will do a lot better than others. But I think in general Cll permanently compromises our immune systems to some degree.

Some of us may have enough reserve immune system that even though it’s compromised, we still do very well. Some of us may be able to supplement with Ivig infusions.

It’s wise for all of us to get to know our own systems and take reasonable precautions. For me, at least right now, that doesn’t mean don’t go to parties or go on cruises. It does mean more hand washing and awareness of my environment. Anyone who looks remotely ill to me and offers a handshake gets an elbow bump from me instead, no one so far seems to mind.

[Jm954 Administrator in reply to Hidden]

Ivotedfornoxon, Why do you say it weakens your immune system? references?

[Justasheet1 in reply to Jm954]

Can’t Ibrutinib cause neutropenia as an adverse effect?

[Jm954 Administrator in reply to Justasheet1]

It can do but it can also improve the neutrophil count because it clears the marrow eventually. I was thinking of immunoglobulins but you're right, the immune system includes everything.

[AussieNeil Administrator]

It's not that you will, but you may experience those side effects. If you read the side effects listed for other medications you are prescribed, you will see similar warnings. Unfortunately there is no way ahead of time to know if you will be one of the lucky group who experience little to no side effects, or fall into the larger group who initially have annoying side effects that lessen over time. Some have such severe side effects that they have to quit and find an alternative treatment, but remember that when you look through past posts that members who experience bad side effects are more likely to post asking for advice.

The warnings about hand washing (good advice in any case) and avoiding close proximity to others would be for the situation where Ibrutinib caused (generally temporary) neutropenia, making you more susceptible to infections.

Neil

[oso7672]

Hi, this is Rosa. Thank you for all of your comments. You make me feel better. I have Waldrenstom (cancer in blood) and my spleen is enlarged but does not hurt. I do have other questions. Can I go to the dentist, dye my hair, how is sex limited if any, I love to cruise so will this be an major issue. I am a very clean person and always washing my hands anyway. Any issues being around grandkids? I know if they have colds, stay away which I'm fine with. I am working until September. Any issues.

[Hidden in reply to oso7672]

i go to the dentist for cleanings etc. They tell you if you are going to have a tooth pulled stop imbruvica for 3 days before 3 days after. thats also for minor surgery. Major surgery 7 days before 7 days after.

[GMa27]

You can do everything you used to but you need to stop taking it before any surgery.

Let your dentist know and discuss with Oncologist any dental work.

Side effects can be so different for each person. Some have hardly any.

Who told you that u can't go on a cruise?

Kids are fine. Sex...all ok. Make sure you wash hands more often.

Best to go on with your life- enjoy. Let your doctor know if you have any problems. 💕

[mrsjsmith]

Rosa,

I have been on IB for 15 months and only minimal side effects ! All that literature indicates is it ‘may happen’ not it ‘will’ it’s like when you have an operation they run through the worst case scenario. Bus as someone in another post said ‘we might get hit by a bus’ but does that stop you crossing the road ? I am very happy I am taking it all my lymph nodes have gone back to normal.

Totally agree with GMa.

Colette x

[Seok]

Yes, agree with GMa too. I’ve been on IB since August 2017. Just came back from cruise and long road trips. You may take a look at my post as I documented my journey with IB.

[closh]

Reading potential side effects for medicines is like Googling symptoms - everything's terrible and likely fatal! The only side effects I have had from Ibrutinib were some mouth ulcers that resolved using supermarket mouthwash twice a day. My lymph nodes shrank in about a week and I stopped looking like I'd swallowed golf balls.

Some people get more serious side effects including arterial fibrillation or bruising/bleeding problems. The good news is though that these are not permanent - if they're too bad, you just stop taking Ibrutinib and go to plan B or if they're tolerable, hang in there and they usually reduce over time.

It's probably sensible to take a few extra hygiene precautions (not that I bother and I've been fine) but apart from that you should just live normally. You may not want to take up Rugby but I can't say I've even noticed additional bruising and I ski and ride a mountain bike.

Graham

[Kokobean]

This sounds extreme. I would imagine that is if you had every side effect and all of your bloodwork was negatively affected. Not likely. You will probably have some side effects, maybe not, and make changes as needed.

[annmcgowan]

Hi I have been on Ibruitinib for 14 months now and don’t recognise a lot of the side effects and no go areas you have read about.

I have had many minor side effects, all manageable, intermittent and temporary.

I would ask your consultant about what you have read and request they provide you with literature on side effects.

Good luck

Ann

[Canuck901]

The 2nd gen version has minimal side effects I’m sure you’ll be pleased with the results

[J_88]

Well put Scott.

[UK-Sparky]

Hi Oso7672,

Deep breath and relax. I have been on Ibrutinib, for 7 months, the impact has been good on CLL. Nodes on neck disappeared within 3 days, blood results are the best they have been for 3 years. I have had some side effects, some random joint aches treated with warmth and ice packs. Some diarrhea, inconvenient but not painful, Some night cramps but all in all totally manageable. I downloaded an app 'medisafe' to remind me of when to take them. For me 6.30am, I am an early riser, ensures no food 2 hours before taking and a while before breakfast. I carry a small hand gel in my pocket to regularly use not use for medication but use of public facilities, mealtimes etc. All a little inconvenient but bear in mind the health benefit to treating CLL. Interesting you were told no coffee, I am on UK FLAIR trial of Ibrutinib and no mention of coffee abstinence in guide, will ask my CNS. I would jump at Ibrutinib again if i was to choose again even with the side effects and inconvenience.

Stay well and choose wisely.

UK Sparky

[Bubnojay]

On any medical treatment for whatever ails one, if you read all the side effects you would not take anything. You either need the medicine/treatment or you do not. You can always stop or have advice if affected.

Bubnjay1

[RJR1]

There are side effects but we all get them at different levels. Three years in and my only problem so far has been cracked spilt skin on my fingertips and somewhat brittle nails.

I travel...Mexico 2 or 3 x per year...cruise with two planned in 2020. I have no dietary restrictions and continue to enjoy my beer and bourbon. I go to any and all social gatherings at my lodge and various clubs.

And most importantly... my numbers are excellent. Saw oncologist the other day... next blood work 3 months and next visit 6 months.

Whoever is scaring you about Imbruvica needs to shut up..I often think Dr Google should have his license to practice medicine revoked

[CoBubby]

I started Ibrutinib January 2018. Any side effect was tolerable. Some lessened after time. I did have to go off once, and later put on a 2/3 dosage. This was much easier to tolerate, and was working. I had to go off one other time briefly.

I wash my hands a lot (always did), don’t shake hands, wipe things down more often, and stay away from people that are sick.

I hear of all of the germs on cruises, and think it’s something to consider.

Ibrutinib has been a game changer for me personally. Best of luck as you go through this journey. We are all different, and this is not “one fits all”.

[oso7672]

Good Afternoon All. I have a few more questions before I proceed with the Imbruvica/Ibruntinib.

1. Did anyone experience any weight loss or gain and if so, how long was it until you experienced them.

2. Some of the information I read says that I cannot eat Strawberries, Blueberries or any Berries of any kind. True?

3. Did anyone experience nausea or a loss (or gain) of appetite and if so, how long was it until you experienced them.

4. Do you know of a local support group in the Long Beach California area where I can visit with them?

5. Can I still do my roots for my gray hair? any hair loss and if so, how much and when did you experience it.

6. Can I still work while taking Imbruvica? I work 10 hours a day, 3 days a week.

7. I am taking holistic supplements like B17 and from my understanding it works great with getting your blood panels acceptable. Is anyone taking this on their own and what advantages are you seeing? Is anyone taking B17 while taking Imbruvica and are you having any issues?

8. When should I really take the IB? Morning, empty stomach?

9. My doctor told me I need to take Allopurinal (300mg) for 7 days prior to starting IB and continue for the first 7 days of taking IB. Did anyone else do this and if so, what issues did you have if any?

10. I have Waldenstroms macrogammaglobinemia (Bone Marrow). Anyone else have the same thing?

Lastly, I want to thank everyone who has responded (and the future ones). If I come across as a bit skittish its because I am. I want my confidence to increase before I take this. Again, thank you so much for your support.

[agatha123]

I have been on Imbruvica for 4 mo.

I was as scared as you say you were.

taking the pill everyday is easy.You set the time.

You watch your reactions and cooperate w yourself and ask lots of Q to the doctor.I am leading a much better quqlity of life I thought it would neverhappen.

No croeded places is to avoid getting ggerms since the immune system is weak.

GOOD LUCK