Ibrutinib Week 1

[Mellyjake]

So I started my 1st dose last Mon evening and have been taking 2 pills every night at 10pm. I make sure to stop eating at 8pm, so the drug is not directly interacting with food. On Tuesday I felt clearheaded that I had not experienced in 6 months+. As that clearheadedness stayed throughout the week, I am certain it was the drug's effect.

On Wed. late afternoon, I had a bout of diarreah and took two Immodium. Thankfully, it did not return and I've had no stomach issues since. On Thurs. I was sore in my kness, ankles and my fingers and a good bit of fatigue. Since Fri on, outside of an hour of fatigue here and there, I have had no further stomach or joint symptoms.

I get a CBC later today and my ONC will call me with results tomorrow. I asked my ONC why just 2 pills vs three and here was her response verbatim.

"If you are having a therapeutic response on two tablets, I may NOT want to raise the dose. The "recommended dose" from clinical trials is somewhat arbitrary and accepts a certain degree of toxicity which may not be necessary. We are learning (oncologists as a whole nationally) that the therapeutic dose is NOT the same for everyone and that we can reduce side effects by better assessing the individual needs and requirements."

I'll keep posting with any updates.

[Hidden]

Thanks for the good news Melly!

[PlanetaryKim]

Wow! Very interesting statement and honest from your onc. re: 2 pills vs 3. So far, upon entering my 3rd week of Ibrutininb, I am not having any significant problems or discomfort on 3 pills. But my heart rate becomes somewhat irregular in evenings and in bed for some reason, but not in morning (when I dose) or throughout day. I'm going to mention it to my doctors on next visit. Not sure what degree of heart rate irregularity becomes a concern. I *DO* know that I would want to first explore dose reduction before considering a second medication to control symptoms of first drug.

Hope you have good news on today's CBC!

kim

[JA14 in reply to PlanetaryKim]

Wish you all the best. I started on Ib just over a month and did experience higher heart rate which comes and goes during the day. I had a 24 hr monitor by a cardiologist and revealed no arterial fibrillation but what the cardiologist thinks that it is do to not enough water intake and recommended 3 liters of water daily at least which did reduce the episodes of higher rate.

All the best

[PlanetaryKim in reply to JA14]

Thank you for info! Will try drinking more water. I have been aiming for 8 glasses a day, but often only achieve less than that.

kim

[kohelet in reply to PlanetaryKim]

I'm already a year on Ibrutinib with almost no side effects. I take it in the morning immediately after breakfast.

Try to take it with food or change to the morning and see if it makes a change. There is no hard and fast rules that it has to be taken on an empty stomach.

[Hidden in reply to kohelet]

I take mine at 1 pm every day. Pills always sit better with me if I've eaten, even if it's a few hours ago.

[richutchens in reply to PlanetaryKim]

I have the heart rate issue as well at night for a bit and in the morning for a bit. Doctor has no concerns.

[PlanetaryKim in reply to richutchens]

Glad to know your doc isn't concerned. I guess these heart rate irregularities are not the same as A-fib? I don't really know the difference.

[richutchens in reply to PlanetaryKim]

I thought I had afib also. They had me wear a halter for 24 hours an everything turned out fine. I was concerned about afib causing me to be removed from it. Thank God it was not. 90% of my weird heart skips are at night within an hour or so after I've taken the drug. Hope your results are satisfactory. Let me know,huh?

[PlanetaryKim in reply to richutchens]

My period of heart skips and variable heart rate is always in the evening following dinner - my biggest meal of day. So I have been thinking it might be due to increased internal pressure from the meal. I dose in the morning. I didn't notice these heart-skips and up-down heart rate prior to starting Ibr 3 weeks ago. Will let folks know what my docs say and how this works out for me.

kim

[Jillinill]

Good to hear that you are doing so well. For the dosage reduction, I couldn't agree more with your doctor, and luckily my new doctor agreed that 3 caps is arbitrary and could result in unnecessary toxicity. She dropped me officially to 2 caps over a month ago to try to get rid of side effects. Heavy leg muscle pains quickly went away. My ALC finally just dropped into the normal range after hovering above normal for a few months. In a few months, I might even ask if I can drop to 1 cap to try to get rid of my ongoing fatigue and sweats which are my only 2 persistent side effects remaining.

Hope you continue to have no further symptoms and good news on your labs!

[PlanetaryKim in reply to Jillinill]

Great news to hear about your improvement of side effects after being dropped to 2 caps!

kim

[Jm954 Administrator]

Perhaps dose reduction is something a trial could look into, especially for those of us that have had a good response.

My CLL is great on Ibrutinib but the rest of me is falling apart!

[PaulaS Volunteer in reply to Jm954]

Great that your CLL is well on Ibrutinib, Jackie. But i don't like the sound of the rest of you falling apart!

[W00dfin]

I have been 3 Ibrutinib daily x 3 months with joint pains gradually decreasing to very little over the last month. My partner and I have been drinking a cup of tart cherry juice daily and it appears to help reduce joint pain. If you have any further joint episodes try ice packs x 20 minutes every hour.

Woodfin

[R16728]

I'm so very glad to read this "qualification" re dosage offered by your oncologist. The same thing is applicable to idelalisib which I've been using for more than two years. It seems we all have a different "balance point" between side effects an no side effects.

[Hidden]

I wish my oncologist had started me on 2 capsules instead of 3 as well. I always believe you should try a lower dose of anything first and if it doesn't work well, increase it. I may talk to him about reducing my dosage to see how I do when I see him in two weeks.

[Patc890USA]

Glad that you are doing good so far. I've just completed my first week and no side effects so far. I take my bills in the morning after I eat. As far as taking 2 v 3 bills I was just reading on the CLL Society page about this and it says,

Q: Should I start at a lower dose and titrate up?

A: 'With some drugs used in CLL like lenalidomide, this is the best way to safely start the drug. This is not the case with ibrutinib because starting at a dose that is lower than the recommended (420 mg, 3 tablets) could be sub-therapeutic and predispose the CLL cells to becoming resistant to this over time. Everyone with CLL should start the drug at 420 mg (3 tablets) given once daily. If side effects are observed, it is acceptable to decrease the dose by one tablet for a period of time. However, in most patients this is not necessary.'

So is this correct?

Pat