Questions now that I'm 3 wks into using ibrutinib

[esplanade]

Hi,

I'll be seeing my oncologist this week and will be asking her these questions. I'm curious to know what users of ibrutinib have to say as well.

- how serious are the bruising and red pinpoint spots on my arms/legs?

- am I doubly susceptible to picking up infections and developing skin cancer now that I'm on this medication?

- having picked up a cold from my grandson a few days ago should I avoid contact with the grandkids when they have colds? This would be a great hardship for me as they frequently have colds (3 yr old & a 1 yr. old).

- should I continue to exercise (fast walking 45 min./day) now that I have this cold or rest?

- is using homeopathic remedies a problem?

- do the side effects of medication get worse with time?

Thanks in advance for your responses!

[rebel56]

I have been on Ibrutinib for 9 months now. My side affects were being very tired at the beginning of my use. I stay away from people as much as possible, cause as the medicine is killing the Cancer cells it also makes you more apt to catch colds. When i get sick it lasts for 2 plus months. So when my wife and myself go out its when a restaurant first opens up, or a store first opens up. If you go after that you are apt to breath or touch something that someone with a cold or virus already has. Yes its an inconvenience but if you want to let the drug clear your limp nodes of the cells, to me its well worth it. As far as the grandchildren just be aware of when they are sick and see them only when they are not. I know I am making this sound simple but you have to put yourself above everyone else. I hope this helped a little. Rich

[esplanade in reply to rebel56]

Thanks Rich for your reply. I've been on the ibrutinib for a mo. now and have already had a mild cold for a week now (caught from the grandkids, of course!). At this point, (for as long as my colds are mild) I'm going to continue the on-going, frequent contact (about 3-4 times/wk) with them. My oncologist assured me last week that it was ok. The kids are young & constantly have runny noses, coughs so staying away from them when they have a cold means having very little contact. Just the thought, breaks my heart.

Aside from this cold, my side effects have been bruises (which are less frequent this week) and feeling faint at times. No tiredness.

Again, I appreciate your comments.

Sheila (from Vancouver, BC)

[Gisygirl]

I have been on Ibrutinib (Imbruvica) for nearly 3 years. My lab numbers are normal right now except for low platelets but as far as side effects- not too bad. I do get occasional blood blisters in my mouth that are like canker sores except filled with blood. They last just a day or two. I have alot of little red pinpoint dots on my skin- arms and legs mostly but have also had them on the uvula in my mouth. Lately I am very tired- but I perk up when I get going. I have had a drippy sinus problem all year. I don't know what is the cause. My hematologist took me off all vitamins except Calcium and D. I am still taking C to help ward off any colds that might come along.

Good Luck. I hope you have success.

[esplanade in reply to Gisygirl]

Thanks Gisygirl,

Which vitamins are you no longer taking and why did your hematologist take you off them? I currently take quite a few.

Thanks.

[Gisygirl in reply to esplanade]

He took me off the Multivitamin and especially the Vit A. He said that is not water soluble so just keeps building up in the body which is not good. He wants me to get my vitamins from a good diet. But still wants me to take the Calcium and Vit. D.

[wallingirl]

Hi, I have been on Imbruvia since April of 2016. It has worked great for me. I get tired and bruise very easily. White count is down to 12.4. Was over 165,000 last April. Lymph nodes have all disappeared. I will say that it does act as a blood thinner. Have low platelets . Am happy with my results

[esplanade]

Hi wallingirl,

So good to hear the Imbruvia has worked so well for you. So far I'm pretty pleased too. Have been taking Imb for 1.5 mos. now and my lymph nodes have all but disappeared. White blood cells (have had one test thus far) are going down (from 150 to 85). Platelets are fine. Not feeling tired but do have some bruising (altho less so than my first 3 weeks). No complaints.

Have you or anyone else reading this taken homeopathic remedies alongside the Imb? My oncologist was vague about it.