first day on ibruntinib

[Nanatoo4]

This is my husbands first dose today. what are some of the symptoms y’all had during the first week, month? Did it subside? I can read aside effects but better to hear first hand!! Thank you

[Smith123456]

his alc and wbc will start shooting upwards for the first month or so. imbruvica will be squeezing cells out of the lymph nodes into the bloodstream where they die off

[Nanatoo4 in reply to Smith123456]

What about physical symptoms? First day and he is just sleeping. so unlike him

[Smith123456 in reply to Nanatoo4]

everybody acts differently to side effects. the gradual improvement of his other numbers means how he feels might improve.

[KkCreative]

Hi Nanotoo4. We have been lucky so far. We're 3 months into treatment ibrutinib and the only symptoms hubs has had has been a couple of tiny mouth sores, for which we were prepared by getting the oil of oregano that people recommend, and the easy bruising, bleeding, which have been pretty minor. In my husband's short time on ibrutinib, his WBC has gone from 440 to 47! It's like a miracle!!! And he feels so much better! We were expecting treatment to be a hardship; instead, for him it's been a super positive experience! I pray that your husband's experience is similar.

[Nanatoo4 in reply to KkCreative]

oh i hope so. those numbers sound amazing hope it continues to be positive. where do you get the oil of oregano?

[KkCreative in reply to Nanatoo4]

We got it through Amazon. You can google how to use it. (I don't remember bc he's the one who has used it, but only, like, twice. 🙂 )

[Nanatoo4 in reply to Nanatoo4]

thank you i’ll shell it out

[KatieBlue in reply to Nanatoo4]

Bc oil of oregano is very strong and can burn, it should only be like two drops into something like coconut oil, then swish and spit )but not into the sink Witt coconut oil.).

I recall mentioning trying it with my oncol pharmacist a d he was okay as long as it was not being swallowed, as it can affect the uptake of the ibrutinib.

The kind I have is “North American Herb And Spice Super Strength Oreganol P73 Oil.”. I got it through a local health store, but believe it was also available through Swanson Vitamins.

I do feel it has helped with the mouth sores.

When I first started with ibrutinib I did ask my heme-onc was there a point after being on it when, if you hadn’t gotten certain side effects, like atrial fibrillation, did that mean you were in the clear from getting certain side effects? Her answer was no, that any of the side effects could happen at any point in time while taking.

Been on it just over 2 1/2 years now. It has helped the lab work look decent, but for me it has not helped with fatigue.

[Nanatoo4 in reply to KkCreative]

seeing those number decline must be a great feeling.

[annmcgowan]

Hi everyone’s side effects at the start of treatment and well into treatment differ in type and severity. Like others here my WBC raised as the ibrutinib went to work on emptying my lymph nodes of CLL cells. I also had pitichea and mouth ulcers. Pitichea ended quickly. Mouth ulcers lasted longer and I still get the odd one from time to time. I have had long term weak nails which ridge, flake and snap.

I have been on ibrutinib now for 3 years. Apart from the minor and mainly temporary side effects above I have felt extremely fit and well and have been in clinical remission for a long time now.

Good luck

Ann

[KkCreative in reply to annmcgowan]

That's amazing, Ann. We really consider this to be a miracle drug for us. We certainly pray for the same results for others who use it!!

[Nanatoo4 in reply to KkCreative]

yes hoping it is a miracle for us

[Nanatoo4 in reply to annmcgowan]

praying for the same outcome for us

[annmcgowan in reply to Nanatoo4]

👍

[annmcgowan]

It has and still is an amazing drug for me. Ann

[Hidden]

Literally none. Followed months or years later by increased heartburn, gout and arthralgias. He's going to be fine.

[Dragonspen]

Hi there. I was lucky enough to only have weight gain, a bit of lethargy and my finger nails split. I've been on Ibrutinib for two and a half years now and in remission for over half of that time. The Ibrutinib started working within the first week. Everyones journey though is different. All the best and good luck 😊

[Nanatoo4 in reply to Dragonspen]

He was super super tired yesterday slept most of the day which is NOT like him. he is usually on the move all day!! He did take the nausea meds like they told him too but he said he wasn’t nauseous so he isn’t taking them today. i know those meds make you super tired.

[Dragonspen in reply to Nanatoo4]

Unfortunately the fatigue is part and parcel of CLL with some and with the meds. I have learned to just go with the flow. I am back to working 5 days a week full time but to bed fairly early a lot of nights as things catches up. Fingers crossed things get better as he goes forward.

[Bishopr]

I just do a salt water rinse for the mouth sores and the split fingers are the biggest pain. There are some great options to get rid of those however, the 3M second skin and Oatmeal hand lotion. If they get bad use the fingers cots with a little aloe and oatmeal lotion for a couple of hours.

[Nanatoo4 in reply to Bishopr]

thank you. will have this stuff ready just in case

[MN1999]

I have been on ibrutinib for about 18 months and it has been a somewhat rocky trip--although I am very grateful for the improved numbers and energy. My initial dose was 420 mg, which had to be reduced to 280 mg due to severe side effects. I weigh about 150 pounds, so the 280 mg is plenty for my weight. The worst initial issues were GI, nausea and muscle / joint pain. After reducing the dose the GI issues and nausea are mostly gone although I drink a lot of water with the med and don't eat for hours before or after taking it. I do still have sporadic roving muscle / joint pain which usually subsides in a few days -- massage gun and heat / cold packs help. Still have rashes but nothing life altering, also finger tip shredding (made worse because of doing outside animal chores in winter-- but the liquid bandage type treatment painted on helps). I have also had to give up caffeine due to PSVT (very rapid bouts of heart rate) -- possibly related to ibrutinib.

All that being said, it is a life-saving drug and I am grateful for it. It seems everyone must find their own way thru this and what keeps their body working the best it can. I have found that time-restricted eating using a balance of keto / Paleo (with occasional treats), as much indoor and outdoor activity as possible, red light therapy and liquid vitamins seem to help.

[Nanatoo4 in reply to MN1999]

i am seeing everyone has different affects. hope it continues to work for you

[MN1999]

Yep, me too! The little issues like mouth sores, rash, etc. are manageable when you look at the bigger picture -- like staying alive!

[StBon]

In my third week. Initially side effects were GI, nausea and muscle / joint pain but not severe and managed with OTC meds. That subsided some after abut 10 days. Also bruising and mouth sore or two (will try the oil!) but again, not awful. Fatigue has been a constant most of my 8 years with CLL - have mostly learned to pace myself. Have tweeked my back but uncertain whether that is related or not as I have back issues anyway. Will be doing labs today and expect the WBC increase as predicted. Am on 280 in spite of my substantial size because I am usually very reactive to any meds. Prayers for you and your husband - and all of you whose experience with this is so helpful.

[Artist123]

Stick with it If he can tolerate side effects for the first month or so! I've been on Ibrutinib for 9 months now and its been a miracle. First month was not very pleasant with excruciating bone pain for me. But that is totally gone now (occassional flair ups, but nothing like the first month. Also, WBC shot up to 500...a bit scary and felt kind of awful, but quickly went back down and my last appt 3 months ago WBC was 70. Hoping for close to normal next month for my next appt! A few other lingering side effects for me have been thinning of hair (not going bald, just not as thick as it used to be) brittle nails (but managing that with lotion, hard as nails and biotin which also helps for hair) and now a slight tinnitus, which is the most annoying side effect. Other than those, I am thrilled to feel as good as I have felt in over the past 10 years! Started running again and stamina is through the roof!

[22011]

I also had bad pitichea and mouth ulcers and a rash in the back of my throat starting at about 2 weeks on drug. All this was painful enough that we quit the drug and everything subsided pretty quickly. And in that two weeks my spleen shrank and my WBC went down precipitously. We waited one month and then started again at the low dose of 140mg. That caused immediate nausea and horrible vomiting which was controlled with Zofran and didn't come back. I do have roving mouth ulcers which come and go but only one on my tongue was painful. So I've only been back on drug for 2 weeks and I'm hoping things work out with this dose as the higher one was extremely effective.

[Blackbelt5]

Uncontrollable diarrhea, sometimes 10 to 12 times a day. Keep propel or Gatorade handy. It has gotten better for me 10 months later. I started with 3 capsules a day went down to two but started with shortness of breath so I went back to 3 capsules and shortness of breath went away. The CLL has always made me tired and the ibruntinib adds to it. Best of luck to you, a great medication that can have not so nice side effects.Gary

[janvog]

The only reaction: Rash on facial cheeks. It lasted for six weeks, then vanished. After over two years on Imbruvica 420 almost normal CBC. Only allergic, temperature change triggered rhinitis continues since before Imbruvica. I exercise daily which supports general health but has special importance for this targeted therapy. Keep moving !

[redlion1]

I recently started imbruvica and in couple days had a very noticeable reduction of my lymph nodes. A little minor heartburn but took care of that with one tum. Been feeling stronger than I have in a long time.

[Catnap7]

Hi .. I got about 10 side effects.. the worst being daily MOUTH SORES with no reprieve (I learned how to work with them)

ARTHRALGIA (had to work with that also)

Nutrition, supplements ,and exercise helped tremendously with my

FATIGUE

FINGER CUTS and MUSCLE SPASMS

were not too hard to remedy

SKIN INFECTIONS like Cellulitis took a bit of antibiotics So did SINUSITIS

I couldn’t do anything for LOW WBC’s

or the VENTRICULAR TACHYCARDIA

at the end of my trial (now gone)

SO happy I was able to hang in because it

PAID OFF 🙌. UMRD

Catnap7

[PolarBoxer]

I began Ibrutinib at 3 capsules of 140 mg per capsule 2 years ago. The initial side effects were slight nausea, tiredness, and my sleep was sporadic. Within the 2 week time frame all of the side effects disappeared. However, I did note the appearance of light ‘scratch’ marks and small pencil lead diameter red blotches all contained in an area between 5 inch by 5 inch area of skins.

These scratch marks or streaks would appear on one arm or the other, or on my shoulder area, and a few times on my thighs. They still don’t appear everyday but every week or so and take about 3 to 4 days to totally disappear. The light ‘scratches’ or streaks weren’t really scratches but had that appearance from under the skin itself. No pain, no itchiness, just slightly red. I haven’t had any show up on my face or ‘private’ areas.

I reported this to my oncologist & the cancer centre’s Chief of Pharmacology and they had not heard of this type of side effect before though I made sure to provide them with pictures with a ruler to delineate length & width of the ‘scratches’ and blotches.

Photos of the red scratches or streaks as well as the blotches were provided to the cancer centre however I can’t seem to locate these photos at this time. When I do locate them I will post them to this site, likely addressed to you specifically.

After 2 years of Ibrutinib I was able to decrease my dose by 1/3. Throughout the 2 year period Ibrutinib was very effective in controlling my CLL and continues to do so to this day.

If I can assist you further then please don’t hesitate. I wish you and your husband all the best of luck. Stay safe, stay healthy ! 🤓👍