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CLL Support Association
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Only God knows

My husband took one dose of Ibunitrib (3 pills) and passed away the next day from Sudden cardiac arrest.

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So sorry Margie that you were so unfortunate. Knowing that such an event is vanishingly rare is no comfort to you I’m sure. And as I’m sure the doctors told you it would never be possible to be certain that the drug actually caused the event even tho I’m sure after a single dose it must seem a huge coincidence if that was what it was. I presume this case was reported as an adverse event to the Company and the regulatory body. If not please ensure it is.

The trouble is that no medicine is free of side effects, some of them serious. If you worked in a liver unit you’d probably want paracetamol / acetaminophen/ Tylenol banned as it very rarely causes liver problems even without an overdose. And accidental overdoses of a simple over the counter drug like that can be fatal.

Your title is correct: God knows. I hope that despite your pain that somehow your faith is a comfort to you. I’m not sure what your background is. But for me the shortest verse in the Bible is also one of the most comforting “Jesus Wept”. When his friend died he mourned. According to Christian teaching He also mourns for all such tragedies throughout the ages. In a previous post you mentioned that you still cried every day. If that is still the case know that you are not crying alone. Your story moved me and many of us on here when we first heard it. And it moves us still today.

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It is 2:45AM right now and can’t sleep. Your post really hit me. I never reported his passing to the company. Never really thought about doing that. Just presumed his doctor would have followed up. Still miss him dearly. Difficult to lose your best friend after 45 years of marriage especially so suddenly. Jesus is my best friend now. I will keep you in my prayers and I thank you for taking the time to reply to me.

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I would hope the doctor did report. But you could always double check with him that he had if you wanted to. Or simply send a report of your own in (the company or FDA will cross check to ensure there isn’t double counting). I have no idea how I’d cope if my wife suddenly passed away so it’s hard to imagine how you feel. Am glad that you feel close to Jesus. For many people faith is a real comfort at such a difficult time. Very kind of you and much appreciated.

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Yes God is by your shoulder and always will be. May he give you comfort with his love. Thank you for sharing your pain with us in this very trying time for you and your family.

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Prayers going up for you. I cannot imagine what you are going through, my husband and I have been married almost 47 years. I simply cannot imagine. You will definitely be on my prayer list. 🙏🏻

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Sorry for your loss ....had he any prior cardiac events ?

I had a ECG done before beggining treatment with Ibrutinib , as I had surgery to remove a lymph node in my neck for biopsy.

Heart rhythm problems , are well known possible side effect of Ibrutinib and some people must lower dose or discontinue the drug .

Anyway such a sudden event seems not be frequent.

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So sorry for the loss of your husband. It must have been a terrible shock. You are in my prayers.

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You posted similarly 9 months ago when you said it had been 2 years since his passing. At that time you were feeling desperately sad, perhaps you're not feeling much better now?

What happened to your husband was very, very sad, quick and traumatic for you. I'm concerned about how much support you have from family and friends to help you through this. If you need more please speak to your Dr and get some counseling to help you come to terms with your loss.

Best wishes

Jackie

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I am so sorry for your loss. Early days yet, but remember all the good times you shared especially after 45 years of marriage. Take care and a BIG HUG from me to you.

Susie

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And 🙏for you

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I am truly sorry that you lost your husband. Only God knows is true. Take care.

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My condolences. As JM eluded to, you said this happened in 2015, in your only other post. Is this the anniversary?

This causes much angst in CLLers reading this. Did you ever get feedback from his doctor about this?

Jeff

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Our 49th anniversary is coming up. The doctor sent me a sympathy card when it first happened and never heard any further from him. I know this causes more worrying among those reading this but I feel it may give them all the info regarding this. My husband never questioned the doctor regarding any side effects and others should not do the same. I am not saying the Imbruvica caused the SCA but I don’t believe in coincidences. Only God knows why this happened.

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MY sympathies in the loss of your husband in 2015.

Did your husband have heart issues before this heart attack?

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No

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I pray that God gives you peace! I am truly sorry. Brenda

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Greetings!

These facts are very scary. In my tiny family heart attacks have gone like this.

Brother (a pilot), age 53, sudden death. Father, age 67, sudden death, sister, age 65 would have suddenly died, but saved with emergency open heart and lived 22 more years, dying from pneumonia. Ancestors on Irish and Swedish side died in 50’s from cardiac arrest.

To draw a direct line to CLL without an autopsy is not a definitive explanation, I believe, although one would tend to think so.

I don’t know if others would agree with me.

Please take care!

~ Yuck

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Very sorry for your loss.

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Thank You

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I'm so sorry for your loss. I hope it's not insensitive to ask, but when you write "one dose", do you mean the very first time he took Ibunitrib?

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Yes he was prescribed 3 pills once per day, took that dosage just before bedtime and the next day passed away from SCA.

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May this verse from John 13:7 give you comfort. The Lord said... "What I doest now thou knowest not, but thou shall know hereafter."

My wife with CLL often tells me if she dies first I am to take comfort in the fact that she never had to experience the pain of losing me.

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🙏

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So very sorry for your loss margieono. My heart goes out to you.

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Thank You

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❤️

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Thank You

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I’m very sorry to hear this devastating news of your loss.

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So sorry to hear about your husbands tragic death. It must have been such a shock. This alongside the not knowing why will make it difficult for you to come to terms with your loss and complicate the grieving process.

On a personal level I have had many losses in my life of very close family members. I am also a retired Psychologist so have worked with loss in all the forms it can take during my career.

In my personal and professional experience anniversaries are difficult and the antisipation of the anaversary even worse.

Your post suggests your grief is for most in your mind right now as you antisipate an up and coming anniversary.

It is good to hear that your strong faith helps you through.

I hope you have family and friends who support you too. If not it might help to concider alternative support in the form of counselling or a self help group for the bereaved, if you haven’t already tried these.

My thoughts and prayers are with you as you face the next anaversary of your loss.

Good luck and god bless

Ann

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So sorry. 🙏🏻

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Very Sorry for your Loss,May God bless you and your Husband.

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Thank You!

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Hi I am so sorry to hear of your loss. Here is a little prayer that I find useful in many occasions:

God grant me the serenity

To accept the things I cannot change

The courage to change the things I can

And the wisdom to know the difference

Grant me too

Patience with the changes that take time

Appreciation of all that I have

Tolerance of those with different struggles

and the strength to get up and try again

One day at a time.

Take care and be gentle with yourself xx

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I am so very sorry for your loss and am sending love/positive thoughts your way.

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This is horrifying and perplexing. Maybe it was a coincidence, but I bet if you read all the fine print I would not be surprised if this is one side effect.

Be strong, and rely on the support of this community. And others.

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Very sorry for your loss. If yo'ure Anniversary is close, I pray that the memories of your husband comfort you. 🙏🏽 Sher

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So sorry for your loss....and the fact that it happened a few years ago doesn’t diminish the void you feel from his absence .... Hope the good memories of your life together help a bit in softening the pain . Time doesn’t eliminate the pain , people just learn to function despite the scar.

Appreciate your keeping in touch and making us aware of side effects from medications ...

As you can see people here care about the caregivers and family as well as those with CLL.

Take care of yourself .... Be well!!

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I am so sorry for your loss. A big hug

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My heart aches for you and I am truly sorry for your loss. I too am a caregiver, my husband is on Imbruvica diagnosed in Aug 2011 and been thru a lifetime of different treatments in these 7.5 yrs. with nothing working until he went on Imbruvica in March of 2016. It wears on you daily as there is nothing you can do but Pray that God will have mercy and heal your loved one. God Bless you, you are in my prayers.🙏🏻

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And you in mine 🙏

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I am so sorry for you loss. My prayers are with you

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Truly sorry to hear this.

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My father literally dropped dead a year after he retired; no heart problems and always a strong man. No autopsy to determine the cause, so I have forever wondered what killed him. Not knowing has sort of always kept the door ajar to my closure, and it sounds like you experience a similar need to know.

The truth is, though, death has its own schedule. After many years, it’s most likely you’ll never know what caused the death, so you have to find peace with not knowing. The bigger and more important thing here is what this is doing to you. If this is the anniversary, pour your doubt and grief into the one day; the rest of the year, it’s important for you to embrace life as it is and to focus on what’s ahead and not what is left behind.

CLLers—as did your husband—have to get proficient at living with a time bomb; people with chronic conditions battle for life while we watch and wait—the good news and the potentially bad wrapped up in the diagnosis. It’s a paradox, an oxymoron, and a double-edged sword all at once: a cancer that may, or may not, drastically change your life in small or huge ways. Fear, though, is largely wasted energy, I have found. Fear, regret, denial, anger, hate and other exercises in negative energy deplete me of resources I need to be healthy mentally and physically.

I hope you can find peace most of your days. It’s important for you.

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Margie, I'm fairly new to this site and had not read your prior posts. My thoughts and prayers are with you and hope you are able to find strength through friends, family and your relationship with God. To me losing my husband who is my best friend and soulmate would leave me devastated. I'm so sorry for your loss.

When hearing my diagnosis, I wanted and want that magic pill that will put this disease in recession or better cure it. In not knowing your husband's health prior to his beginning ibrutinib, I feel awful for you he was undertaking this journey to remission and his life was stopped so shortly. Sending you caring and comfort. Maggie

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I'm so sorry to hear of your loss. Even though it happened two years ago, these special dates bring up strong memories. I turely hope that there is someone that you can spend time with over the coming days to help you get through it. Sending prayers your way.

Chris

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Thank You

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My pleasure. Hang in there...:)

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Dear Margie, I am so sorry to hear of your husbands passing. Tomorrow will be one month since my sweet mama left this earth for her heavenly home. It’s been so hard. She too was on Ibrutinib. It’s been hard accepting that she’s gone, but as a fellow believer in Christ, I know that I will see her again. I read this verse this morning: “I know that you can do all things; no purpose of yours can be thwarted” Job 42:2. It reminded me that God has a plan for our good and His glory. I will be praying for you as your anniversary approaches. ❤️

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🙏

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I just wanted to add my voice to the many who have commented with support for your loss.

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OMG....I am so so sorry for you and your family. I will keep you in my prayers. My husband started Imbruvica in June and I remember how scared I was as he could only tolerate 2 IV infusions of Gazyva and got very sick and had to stop that treatment. He is now off the Imbruvica as of last week as it caused him to have AFIB...thats 6.5 months after he started. The current plan is to wait and watch for a while before starting a new treatment that hopefully won't have AFIB as a side effect. My heart goes out to you....this journey is scary.

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🙏

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It is such a loss, no matter how many years have passed, to lose your best friend. God bless you during this difficult time. I feel you must have needed some virtual love and warm hugs your way.....so I am sending you some from cold Wisconsin!!

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Thank You for your good thoughts!

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Sending you a very warm hug 🙅, I can only imagine what your heart is going through Margie, take care.💖🌹xx

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Thank You

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I'm so sorry to hear your news, sending my condolences

Elle x

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Thank You

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I am so sorry to hear about the loss of your husband. It must be devastating. You are in my prayers.

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Thank You

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