Can't tolerate Imbruvica, what's next? - CLL Support Assoc...

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Can't tolerate Imbruvica, what's next?

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.

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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!

kim

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Thanks, Kim. Just hearing from others is such a help. We'll write your info down just as far as one possibility maybe his dr. will consider. I tend to be a worry wart anyway, and sometimes both our insomnias flare up, particularly lately. Thanks for the encouragement. We're in Pacific NW.

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maybe try Calquence-acalabrutinib

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Thanks for this suggestion. We're taking notes!

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Idelalisib may also be an option, plus there may be other options available via clinical trials.

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The doctor did say he had more tools in his toolbox. We're thankful for alternatives. He tolerated his original chemo with flying colors.

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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.🌼

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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.

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Hi I am so sorry to hear of your husbands issues with Imbruvica. I would strongly advise against not taking the dosage as prescribed. Is there not another doctor he can see?. I do hope that this can be sorted out asap. Sending you and your husband love and strength.

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You are right about taking meds as prescribed. The ANP (I had to look that up, stands for Adult Nurse Practitioner) is his oncologist's assistant so hope to see her this week in the meantime. She is very excellent in the field too. Thanks for answering.

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Are you near Eugene or Seattle? There are some big name CLL specialists in both areas.

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Yes, we are close enough to both cities if that need arises. Our town is fortunate to have a top notch cancer doctor as of 5 yrs. ago or so. Many from our area have gone to Seattle for various cancer treatments. Thanks!

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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.

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Thank you. This is something we need to consider. Our doctor seems in communication with specialists. Need to ask more questions.

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Dr. Jeff Sharman in Eugene and Dr. John Pagel in Seattle are well known. Worth a second opinion if since your husband is having so much trouble with Imbruvica.

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Thank you so much for this information.

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Pagel, not Pages - auto correct strikes again. Corrected.

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Got it, thanks for the correction.

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Ask about Venetoclax/Rituxan combination.

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Another course is being charted this a.m. Infusions of Bendamustine/Rituxan. Thanks for this suggestion we need lots of options.

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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.

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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.

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does your husband have the 11q blood factor? if so, there is some research that BR won't be very effective. i learned this the hard way. as others have said, you need to get a second opinion from a cll specialist.

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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.

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Obinutuzumab plus Venetoclax is showing great results with low toxicity and possible fixed duration.

targetedonc.com/news/veneto...

onclive.com/web-exclusives/...

JM

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Thank you for the info & the links, JM. Doctors have been working behind the scenes on this, looking like infusions to start of Bendamustine/Rituxan very soon. taking notes of suggestions here, much appreciated.

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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!

JM

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Thanks JM. Yes maybe Johnson and Johnson will pay for it. Now that we're on Medicare and not the Affordable Care Act, these drugs are astronomically expensive. Thanks for the well wishes and suggestions.

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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.

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I hope the new regimen goes well for your husband. It looks as Snooks will be starting infusions of Bendamustine/Rituxan quite soon. Hoping for good results and low toxicity the enlarged lymphs are more pronounced. We're in OR.

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I had different challenges with Imbruvica than your husband, but my oncologist (specialist at MD Anderson) switched me to Venetoclax and Rituxin. I have done sooooooo much better with this med combination.

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That has worked best for me as well.

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Oh your comment is so encouraging different drug combos are effective and tolerated. Thanks! It is much needed this a.m. Snooks is going to start infusions again soon, Docs are working on it.

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Praying for good outcomes. Tell him to keep his chin high and not to give up!

Mimi in GA

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Thanks Mimi in Ga. I read these comments to Snooks, the advice means so much!

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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.

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Snooks says you were smart to skip the Imbruvica. To him, it was brutal. We are mostly retired I have no idea how people can work while taking treatments, etc. I guess you're all a tough breed. Thanks for the heads up on acala. I think his doctor would go to bat for this treatment also if need be.

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Greetings Snooks!

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.

nasdaq.com/article/tg-thera...

I hope you guys get on the right track soon.

Best,

Yuck

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Well we got a good laugh out of your name. Yuk, Snooks says to tell you today he feels like a swelled up tick. Good to know about new drugs for this disease in the works. Thanks!

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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.

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Imbruvica seems to help many patients. I don't know why my husband can't tolerate. His lifestyle and diet is good, but he just feels poisoned. He's given it two shots, with same results. We're happy it's working for you and improving your life.

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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.

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