Well, my hubby didn't tolerate the Imbruvica after all. He was on the 420 dose for over a month, and the results looked very promising. But then he just got depressed, feeling just awful, like having the flu, but no huge apparent-to-others symptoms, but generally feeling poisoned. He was put on the 280mg, but didn't fare much better. He's waiting now for his doc to return from vacation. Another week to see what the new plan of action will be. His lymph nodes start to swell in his neck, like he has the mumps, and get painful, so he'll take an Imbruvica now and then, which of course is not the way one is suppose to do the treatment. He took some 5 days, felt poisoned again, and quit. It's encouraging to read other post that other drugs are available. I guess we're just reaching out. Like others have said, sometimes you just need someone to talk to. This disease has taken us on a detour in life we really didn't want of course. But dealing with it. We had to . In 2016 when he was jaundiced and hemoglobin of 2.7, our self diagnosis made us blind to what was really going on. So really some of the worst we did deal with. Sometimes you look back and wonder how you made it. But we're plugging away and life is pretty good.
Can't tolerate Imbruvica, what's next? - CLL Support
So sorry to hear your husband isn't able to tolerate Imbruvica, even at reduced dose. My CLL specialist has told me that if days comes when Imbruvica no longer working for me, or if I can't tolerate it, I'll be moved to Venetoclax. (Actually Venetoclx + 6 cycles Rituximab, to match the Murano study protocol.) I'm in BC, Canada.
Good luck to both of you!
Sorry to hear this. It is hard on you too. It helps to type it all out. Hopefully when the Doctor comes back, they will proceed to the next step. I can’t stand the waiting. My husband had some testing, scans and ultrasounds. We read the results on the portal and it’s really complicated and scary.
Take care and good luck.🌼
Hi Aunt Helen, Yes the waiting is difficult. We get all his test results online, everything looks quite good, actually within ranges. It's all rather Greek to me, but I look at the "normal" readings and if his fall within range, it's reassuring. His platelets did fall to 39 rather suddenly but went back up to 70 or so. Thanks for answering back. It does help. Good luck to your husband and you, as well.
It's important to be seeing a CLL specialist - a hematologist who treats nothing but CLL patients. This is a very active time in CLL research and treatments... many new drugs and drug combos being trialed and brought into clinical practice. Only a CLL specialist will be fully up-to-date on options available to your husband.
I had one round of B/R and could not tolerate it. My counts tanked and I ended up in the hospital for two weeks with febrile neutropenia. But it has worked well for many. I am very sensitive to drugs, even with the venetoclax and rituxan they have ha to cut my dose in half. Good luck with whichever new treatment you end up with.
I'm not sure but that Snooks initially had this combo B/R back in 2016 when first diagnosed. He did tolerate the infusions very well. I won't mention your experience to him right now. Sorry it didn't work and you landed in the hospital. We have faith in his drs. they will figure this thing out! I hope you are responding well to your treatment with venetoclax. Seeing lots of mention of that drug on here.
Thank you. I'm not sure about the 11q blood factor, but know his oncologist would, including what chromosomes are mutated, as he did rattle this off to us. We'll discuss the 2nd opinion approach & ask about the 11 q blood factor; and ask who our dr. confers with, because we know he does look beyond his own expertise. I know our doctor is up there with the best.
B/R is certainly another approach that has shown good results.
Your doctors are familiar with your genetic profile, your medical history, and personal treatment objectives. I would conclude that they have a reason for choosing one treatment over another, however, it would appropriate to add the O+V option to the conversation and see what they offer.
I wish you and your Hubby Quality of Life, Liberty, and the Pursuit of the Best CLL Treatment available at the best price!
My husband had to quit Imbruvica after 8 months due to it wasn't really working and he got AFIB from it. His hematologist has gone back and forth on the next step but has now decided on Calquence-acalabrutinib to start then will start infusions of Rituximab. We will find out more on 8/21. We are also in the PNW.
I skipped the ibrutinib route because of the nasty side effects and went straight to Calquence-acalabrutinib. (I'm in the USA). Acala is a 2nd generation BTK inhibitor designed to have fewer side effects. I've been on acala since June 26 and have had headaches, which are 90% managed by Excedrin Tension Headache with Caffeine (acetaminophin). I also had one infection (sinus?) requiring 2 weeks of Amoxy-Clav to cure. I had fatigue most days, but I could take naps which helped. Not sure how folks who work and take any of these drugs do it. My hat's off. Bottom line, after many weeks my body is adjusting well with fewer headaches and less fatigue. I've only had 1 blood draw while on this, and it revealed a large jump to 350 WBC, indicating that the drug is flushing out the cancer into the blood stream. My lymph nodes have really shrunk, especially under the armpit. I can't say your hubby will have the same good response - wish I could. Acala's not currently approved for CLL, but has shown in clinical trials great effectiveness in treating our disease. I know that doctors will sometimes go to bat for a patient to get acala if Ibrutinib is not working and/or has severe side effects.
For you and everyone else: Umbralisib (TG Therapeutics) as a mono-therapy for CLL will wrap up a 3-year study in the fall. It has fewer side effects than the other two Pi3K meds now approved for CLL (Idelalisib, Duvalisib).
Not clear when Umbralisib could be approved, but for those who like to read about biotech research for CLL and other diseases, this ambitious company has a number of ongoing studies.
I hope you guys get on the right track soon.
Durin the first cycle/first month, initially some new problems appear and old problems turn worse. But across the following month', Imbruvica may provide small but continous improvement. Much depensa on the life style and diet of the patient, which must seriously support general health: Diet and excercise. I am in my 10th cycle (9 month) and there has been steady improvement. I am 85.
Well, Day 1 on the new treatment of B/R didn't go real well. He had a bad reaction to the Rituxan only partway thru, so the nurses/doctors had to stop and administer drugs to reverse course. Anyway they were able to proceed with the Bendamustine, very quick IV, after a big delay of letting him rest/recover. Hoping to get thru this again tomorrow. Measures and preventative medications planned to finish the R infusion, and follow up with the short Bendamustine, and then 28 days free. A bit sobering when his chemo of '16 went so smoothly.
I have been on Imbruvica for 3 months. I am putting up with the side effects. However I was in the hospital August 23 26th for a severe infection in my knee. I had bilateral knee replacements over a year ago. I had a cut on my knee that got infected.I was off imbruvica for a week in the hospital. Then my oncologist had me go back on it aug 30. My orthopedic surgeon wants me off it . I am home with IV broad spectrum antibiotics for six weeks. I went to the orthopedic yesterday sept 6 and my infection is coming back. If the infection is not taken care of, I have to have the implant taken out and not walk on it for six months and try to get rid of the infection. I asked my home care nurse if the two doctors were on the same page . She assured me they were. But I obviously they’re not. After reading about infections and imbruvica, I am wondering about this whole matter. Now looking back, before I Started treatment, my oncologist suggested a specialist at Duke. Now I’m wondering if I should’ve went there
You're in a difficult place between the Imbruvica and the infection. Snooks & I are certainly no experts, 2nd opinions never hurt. I'd suggest you copy your comment here and post a NEW message thread to get more replies from this community. My husband had hip replacements, Oct. '15 and late Jan. '16. This was before cancer. 6 wks after the 2nd surgery, he "out of the blue" was rushed to the nearest city's ICU for auto immune hemolytic anemia and CLL. His hematocrit was 2.7. The auto immune, his body was attacking his own blood. It's a wonder he survived, but got the blood transfusions and started chemo infusions in a bed. His last hip to get replaced, dislocated many times after the cancer. Don't know why the leukemia wasn't picked up in the pre-op, but that's water under the bridge now. He has been fortunate no infections have become of the new hips & they've stayed put! I'm sorry to hear what you're going thru and facing at the moment, and wishing you better answers and health asap. Maybe take up your oncologist's advice and see that specialist. You'll get many replies starting a new post if you haven't already. Good luck !!