IMBRUVICA FOR CLL

[elvs52]

I'm taking Imbruvica 420mg tablet 1x daily for my CLL. The side effects are Horrible to me, so i'm thinking of taking it at night so I sleep thru the Nasty Side Effects. yesterday I has a fever of 102.8 degrees. Maybe if I take it along with Klonapin I will sleep thru it! Does anyone else have this issue?

[PlanetaryKim]

Sorry to hear about your troubles with Imbruvica. What kind of problems are you having and how long have you been taking it? I had not thought that fever was a side effect of Imbruvica. Is it possible something else is going on? Illness or the Lymphoma B Symptoms themselves (which can include fever)? Some side effects don't last long. So you may see improvement as time goes on. I have been on it for 19 months, but am faring pretty well in terms of side effects. Good luck to you!

kim

[elvs52 in reply to PlanetaryKim]

Yes A Fever is listed under side effects.

[Doremefasol in reply to elvs52]

Only because Impruvica makes one more vulerable to infections. With a fever over 100.0 I would consult a doctor.

[annmcgowan]

Hi I am on Ibruitinib too. I agree with Kim temperatures is not a side effect. I have always taken mine at night for the reasons you mention.

I would have a chat with your haematologist or nurse specialist about the temperature if I was you. I am on Flair trial and encouraged to let them know about temperature issues.

Keep us updated.

Good luck.

Ann

[MsChief]

I hooe you have a Cll specialist. Let him/her know everything about your side effects. You may need a reduced dose. I have been on Imbruvica 120mg, one capsule 4 days a week and two capsules 3 days a week for almost 2 years. I take Acyclovir twice a day and 2 Sulfamethoxazole 3 days a week. Yes, I have side effects and mostly sleep poorly but I am coping and grateful to still be here. I have IVIG

Monthly. My oncologist understood that I cannot take the full dose of Imbruvica. I had been in the hospital for 9 days with a severely swollen hand after just one week on Imbruvica and was off it for six months. Rather than agreeing to IV chemo my oncologist agreed to try a very low dose. Although I am not in total remission my numbers are all within the normal range. There is a lot more history to my case - perhaps more later. Talk with your oncologist. ❤️

[Alex15alex in reply to MsChief]

Very interested in your post.

I too am on Ibrutinib 420 for one year also 2 acyclovir a day (protection against shingles)

as I dread having shingles I took a lot of comfort in that. However the CLL Specialist I saw yesterday stopped the Acyclivir as he says they don't give that with Ibrutinib , this after a year of taking it . I am left confused.

[lorna222 in reply to Alex15alex]

Hi Alex, that does sound weird, my Dr. may ad Acylivor due to the herpes virus, he says its standard procedure.....confusing!

Lorna

[migirlusa]

I started out taking my Imbruvica at night. Changed to morning but did not see any difference. However, my oncologist told me to call the office immediately if my temperature reached 101 degrees. You need to call right away. Let us know how you do.

Pam

[elvs52 in reply to migirlusa]

My Dr. Took me Off Imbtuvica because for 6 days Straight I had fevers over 101.6 to 103.9.hell will try another approach. Side Effects are Worse than Convention Chemo!

[cajunjeff]

Fever and infections are known side effects of ibrutinib. With a fever as high as you report, I would definitely go see my doctor.

It might not be the ibrutinib making you feel bad, but rather some underlying untreated infection.

My guess, and hope for you, is that it is a transient thing. If it is a bacterial infection causing your fever, antibiotics may help. If its viral, eventually it should pass.

I would for sure report a fever that high to my doctor and seek his or her advice. Jeff

[Newdawn Administrator]

What kind of ‘horrible’ side effects are you experiencing elvs?

I’m on Ibrutinib and with a temperature of 39.3 (102.8), I’d certainly be consulting the medical team!

Newdawn

[country76]

Sorry to hear about your side effects. I have been able to over come them due to simple solutions so far, although I am only in my 2nd month of Ibrutinib. I am with the others, your doctor needs to know about that fever. Maybe you have an infection and need an antibiotic.

[bkoffman CLL CURE Hero]

Taking it a bedtime is recommended by some doctors to mitigate adverse events.

[Shepherd777 in reply to bkoffman]

How does one get enough water in take while sleeping?

[moon21]

Sorry to hear that you’re experiencing side effects . If you do decide to take it at night how will you ensure that you drink all of the fluid/water you’re meant to drink? This has been on my mind with other posts and on reading yours I thought I should mention . All the best

[ElMaga]

I take at night and it makes a huge difference although I never had fevers. But other awful symptoms much better now in Month 3

[zaax]

After about six weeks things start to calm down. The fevers, if you can call them that for me anyway only lasted for a few hours, I just felt a bit woozy.

[81ue]

if you have a digital thermometer, track your temps regularly throughout the day and discuss with your dr.. I had fluctuations and used tylenol to help, but in the end, I was hospitalized and taken off imbruvica because it failed.

[bdm0911]

Sorry to hear about your troubles, elvs52. I had side effects too and always brought them to my doctors attention. Although I was responding positively, the side effects were difficult to deal with. My doctor lowered my dose to 2 pills the first time and after continuing to have trouble, my dose was lowered to 1 pill (140 mg) daily. My oncologist realized the medication I take for anxiety/depression was making the Imbruvica stronger, in turn causing the issues I was experiencing. I have been doing very well since my dose was lowered about a year ago and am monitored closely. Hope your doctor has an answer for you. Wishing you the best!!

[RJR1]

Just goes to prove how we are all impacted differently by Imbruvica. I’m nearing 3 years at 420 mg. Also Acyclovir 1x daily. No aches or pains ( beyond what goes with 68 years) no fevers, sleep 8 hours...and plenty of energy. The only real issue is brittle nails and splitting skin on my finger tips. I know I’m lucky by comparison to those of you who are having troubles and can only hope that your problematic side effects will pass.

[mhrh]

You really have no choice. It is the lifesaver drug . Nothing comes close except Venetoclax. Every drug has a side effect. The key indicator is your flow cytometry and bone marrow biopsy. You should see your leukemic cells drop rapidly. TLS can be a big issue in the beginning. Be aware of very dark urine - the leukemic cells are excreted too rapidly from the system. The advice is to read the Imbruvica literature, but try to stay on the med.Again,it is a lifesaver.

[tryandtry]

I agree basically with mhrh, the drug is a lifesaver. However, you do have some options, other than suffering all day, and hoping you'll sleep through the night.

I was on Imbruvica for 15 months, and experienced MANY of the side effects - especially the first two months. I have a history of very strong sensitivity to drugs, and my hemadoc agreed to a dose reduction to 280. Then, for about a year, my side-effects abated substantially, yet my CLL results were still very good.

Finally though, the drug caught up with me, causing Afib and mitral valve problems. I switched to Acalabrutinib (Calquence), a similar btk-inhibitor that is slower-acting, but kinder and gentler re: side-effects; yet it's still been effective for me against CLL. It's "off-label" for CLL (it has been approved for MCL), but I had no problem getting it approved for me, because of my many Imbruvica side-effects.

Thus, my (not a doctor) advice: Discuss dosage reduction with your doc, as well as a possible switch to Calquence, if the side-effects of Imb are still too bad.

Gary

PS - If you do stay on Imbruvica, keep your eye out for Afib. It's a known side-effect in about 15% of its users. Also, if you look at Calquence, dig deeply into insurance reimbursement; some companies may balk that it's not yet FDA-approved for CLL (MCL was approved in 10/17; CLL could be soon). And, if $'s are a concern, check out AZandME.com

[Bbjpenny]

I have had cll since Oct.2017. this is the 3rd med change. from convention chemo to this Imbruvica. There are horrible side effects. Only on it 1 week. The first day I started vomitting, the second day the fevers stared 103.2 and the muscle pain was so bad, I couldn't pick my head off the pillow the Easter Vacation. I think I'M going to discontinue it. it's not worth it. Any advice or suggestions are very welcome. tyia Bernadette

[Yuck]

Usually a temp of 100.4 is the point where the doc needs to become involved. Can you be certain your temp is a side effect? Could something else be going on simultaneously?

Good luck!

~ Yuck