First dose today

[jimd84]

First dose of Imbruvica 420 mg today. What can I expect? Anyone have nausea problems? I am 72 year old male and walk 5-7 miles per day. No symptoms except slightly enlarged Lymphs under arm and low RBC and platelets in blood work. no fatigue, no bleeding, no weight loss. Otherwise healthy.

[Cllcanada Top Poster CURE Hero]

Wow great exercise... it will probably help you a lot. Stay very well hydrated throughout your treatment, you need to flush those dead B cells.

Side effects from ibrutinib are very patient specific, so its almost impossible to compare ... yourself to others.

Common side effects to watch for are...

Diarrhea

Bruising

Muscle and bone pain

Tiredness

Rash

Fever

Nausea

You can perhaps expect some fatigue in the next few weeks, so be prepare not to push yourself... Any fevers over 38C for more than an hour without Tylenol...you need to reported immediately to your clinic, you should have a 24 hour contact phone number.

Please let us know how you get on... most patients do just fine..

~chris 🇨🇦

[AdrianUK in reply to Cllcanada]

It’s interesting that there are sighting differing advice. We are told to go straight to the hospital as soon as we notice any temperature above 38C or 100.4F. And As you say never take paracetamol/ acetaminophen or ibuprofen or similar medicines to artificially lower the Temperature

[Cllcanada Top Poster CURE Hero in reply to AdrianUK]

The advantage of the call-in/call-back, pager system is that I get assessed immediately by a hematologist... he then tells me what to do. Come to ER/A&E, see your doctor the next day with an emergency appointment, or perhaps the doctor will call in a prescription to my pharmacy, as was the case with Shingles.

Further, the call in doc, triggers a cascade of notations on my patient file, so should I need to go to critical care the doctor there will have some guidance given, because some are clueless about CLL and many are residents...in a teaching hospital situation.

So to a large degree, the triage is done over the phone and this speeds assessment should a hospital visit be required. Cuts down on the use of unnecessary ambulance trips, and wait times in the emergency, it notifies my specialist of a problem, gives guidance to the ER staff and provides the correct level of care.

I have found the system to work flawlessly, the longest I every had to wait for a call back was probably 4 minutes...

~chris 🇨🇦

[AdrianUK in reply to Cllcanada]

I am also fortunate to have access to a nurse specialist 24/7 so technically I would and do call them first and they will make sure a and e know I’m coming. Or if the temp rise is lower and there’s other issues will help me decide whether to come to A and e or not. I believe that every CLLer should have access to a similar advice service.

[cajunjeff]

I have been on imbruvica right at a year now and I well remember the anxiety I had with my first dose.

I agree with Chris, the side effects are really patient specific. I have had a half dozen or so of the listed possible side effects, but my side effects have all been so tolerable they are hardly worth listing.

5-7 miles a day? Wow, that's a lot. You must be in very good shape and I think that is a good predictor for you to do well with whatever side effects you get. I walk 3 miles a day and thought I was doing good. Now I shall have to "step" up my game. Good luck, its been a great drug for me. All my numbers have been trending better since starting, my platelets just now creeping into the normal range for the first time since diagnosis. Jeff

[jimd84 in reply to cajunjeff]

Very encouraging. Thanks for the reply. I did not get a lot of sleep last night anticipating the first dose☺️

[cajunjeff in reply to jimd84]

Yes, thinking back on it I had a headache the first few days. I remember worrying I would have to live with headaches. They went away within the week and I cant really even say it was the ibrutinib that caused them. Loose stools have been the most consistent side effect for me and a side effect I know is clearly related. Still, that has not been a big deal, every now and then I take some Imodium for that.

I never had the brittle nails some get. I have had a few mouth sores, but they have been very transient and surprisingly not painful for me. I am pretty sure that is ibrutinib related. I get some joint pain, I cant be sure if that's just getting older, ibrutinib or both.

I think the plan for me is to add something like venetoclax or gazyva to my ibrutinib to get me in remission and off therapy at some point.

As I have written in other postings, if you put a piece of paper in front of me today that said if I agreed to take ibrutinb forever, that ibrutinib would agree to work for me forever, I would sign that deal in a heartbeat and not add any other drugs. I often think of what other people with life threatening and difficult to treat cancers would give to switch places with me and keep their cancer beast at bay, as I do, with a daily oral med.

[gardening-girl]

jimd84, I hope all has gone well with you today and that the ibrutinib that you took earlier is already binding to your BTK and flushing B cells out of your lymph nodes! Please remember that it is expected that your lymphocyte count will go up, so don't be alarmed when you see the results of your next few CBCs.

You asked about what to expect in terms of side effects, and as chris has said, none of us can predict what your experience will be, but we can tell you about our own experiences. In the 4 years that I have been taking ibrutinib my only side effects have been a change in hair texture, brittle nails and the tendency to bruise more easily.

Best Wishes and keep us posted!

gardening-girl

[jimd84 in reply to gardening-girl]

Thanks for your reply. I am very optimistic this treatment will work for me. I believe the Lord is completely in it with me. Romans 8:28.

[1935husband]

Be sure to get blood work in 2 or 3 days if you show bruising and platelets are low.

Needed platelet transfusions after one week and spent 3 days in hospital.

[W00dfin]

For the first 2 months of ibrutinib I had recurring joint pain in my knees and hands/wrists, usually one joint at a time. It usually lasts for a day so I refer to it as 24 hour arthritis at least I hope it is not the real thing. The sudden injury free onset and short duration makes me blame it on ibrutinib. I still occasionally get knee pain. Ice packs (20 minutes) and the salonpas patches help. I know the aspirin in the patches is not indicated for someone with low platelets but I have monthly labs and I cannot see any fluctuations between months when I did or didn’t use the patches.

After almost 2 years of ibrutinib my oncologist is talking about taking me off monthly IVIG due to my improved blood work results.

Best wishes 😊

[vog292]

At first cycle of Imbruvica I got an ongoing rash on the cheeks of the face. This continues now after the fourth cycle. There is also increased tendency for bruises on arms. (One can use arm protectors. I wear obstetrical gloves (disposable) that can be cut at length above elbow. For those who cannot walk outside due to climate or traffic: Get yourself a basic treadmill for walking inside while you can watch TV,