My wife of nearly 50 years died in late April after a 11 year battle with CLL. Diagnosed in 2008 with NHL (SLL) her haematologist treated her with 6 cycles of CHOP +R (cyclophosphamide, doxorubicin, vincristine, prednisone + rituximab). This was followed by 9 quarterly treatments of rituximab.
In 2013 the disease resurfaced as CLL and she received 6 cycles of CVP +R (cyclophosphamide, vincristine, prednisone + rituximab). After each treatment she received IgG. During this phase she suffered from frequent respiratory tract infections requiring regular antibiotics. At the end of the CVP in 2014 she went back onto quarterly rituximab and less often IgG. In 2016 and 2017 she was on monthly IgG but suffered recurrent URTI’s requiring regular antibiotic usage.
She then went on to watch & wait but in 2018 her original haematologist ceased practice abruptly and she started seeing a younger haematologist who had been involved in trials on ibrutinib. He decided to treat with FCR (fludaribine, cyclophosphamide, but stopped after only 2 cycles because she was not tolerating it well. She was 72 at this stage.
Ibrutinib then became available at reasonable cost in Australia so he started her on daily 420 mg.
Despite an encouraging response to ibrutinib my wife’s health deteriorated requiring frequent stays in hospital with twice daily infusion of a variety of antibiotics. In October 2018 she suffered from a perforated ear drum due to an E. coli infection. This was probably the start of the end.
After a 4 week stay in hospital in April her health improved and she came home full of beans and looking forward to our 50th wedding anniversary in August.
Unfortunately she suffered from a catastrophic brain stem event at home the next morning and died later in hospital.
Her haematologist agreed with me for an autopsy to be conducted to try and explain what caused her death. The report showed she died from a meningitis caused by E. coli which was also present in the CSF, her lung and bladder despite heavy antibiotic infusions in hospital.
Our family doctor concluded that her immunity was virtually non existent and she was thus unable to deal with the E. coli infection.
Was it the inevitable consequence of her CLL or perhaps as hinted at by her second haematologist overuse of rituximab after her first chemotherapy for rituximab also affects the immune system?
My wife showed great courage throughout the 11 years, never did she say it wasn’t fair or why me.
I wish everyone else dealing with CLL the best of luck.
Written by
HannahHugo
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I'm very sorry to hear of your wife's passing. She certainly did show great courage over those years and I'm sure you would have done so too whilst supporting her.
Sadly, infection is a common cause of death for us CLLers and, as with your wife, the infections can come from unexpected and small incidents.
Thank you for your kind wishes for everyone here and telling us her story.
I am so sorry for your loss. Your wife was fortunate in one thing at least, to have such a supportive husband. I can only imagine how much you miss her.
So sorry for your loss. For her, the suffering is now over. Grieve, but know that you will be with her again. She sounded like a remarkable lady. I hope to be with my wife that long. You both were blessed to have each other but cursed with that cancer.
So sorry to hear of your wife's struggles with her health and your loss.
It was good of you to share her story as it encourage us all not to be complacent and that while there are some wonderful treatments for CLL, there is still no cure.
There is a long way to go before the medics understand how the treatment drugs affect our bodies and effect existing illnesses as well as killing off some cancer cells.
The two of you were so very fortunate to have 50 years together. I’m sure it makes your loss even harder. Just believe that you will be together again. Thanks for sharing your beautiful story of love, loss and CLL. Your wife had so much courage. Wishing you well as you find your way daily without your wife. Prayers that life will get easier. 🙏 Sally
I am groaning with you...…….I have been the care taker of my wife for 10 years and we have been married 43 years. I know our day of separation due to her CLL will come one day and dread it immensely.
So sorry to hear your story. Can’t have been easy. It will be impossible to be sure what the reason for her death was. CLL makes our immunity worse. But so does any treatment including chemo, rituxmab ibrutinib and venetoclax
IVIG infusions are given in the hope of noosing our immunity by giving us antibiobodies. But even If they are given to the best and optimal level, they still rely on the rest of our immune system to work.
Neutropenia also doesn’t help, and they can give us GCSF to try and make sure that we have normal levels of neutrophils. (They can drop during an infection if our bone Marrow is suboptimal which means if someone has an infection it can be another reason to perhaps consider going to hospital for a check up where they can check if your neuts have dropped (mine went to zero recently through just having a relatively minor lingual tonsillitis!)
And all the time we are learning more about how to manage this condition. Your wife had a lot of chemo over the years each of which might have made her bone marrow a little less efficient, but each of which prolonged her life with you. Before the advent of chemo she almost certainly wouldn’t have had those years after her disease for bad enough to treat. Today a patient may never have chemo or may have it just one set of six sessions before moving to the newer treatments. And that may well mean that many of us just starting out on this forum last a lot longer than your wife did even after we get to the point of needing treatment. And in some small way the knowledge gained by treating people like your wife who has gone before helps us, and for that gift of experience and understanding to the doctors we are grateful to your family and thousands of others.
I suppose as hard as it is, the fact is we will all pass on at some point. And truthfully none of us know how long we have.
It really sounds to me like you are looking for answers. And it is certainly not unreasonable to ask the kind of questions you are asking of the doctors and hospital that cared for your wife. But ultimately, there comes a time when you will just have to come to the end of your questions and say “it is what it is”.
This is a horrible condition that can kill us in a thousand ways. But increasingly people are having many years even post treatment, like your wife did, and I suppose we should all be thankful for that.
I wish you all the best and that you will find comfort whether that’s through these questions, a faith, the love of your family and friends, or professional counselling, or indeed any other means.
We are increasingly aware as a forum of how horrible this condition can become. And yet we do also hear great stories of even longer spells than what your wife experienced. Of course it is never long enough. No matter how old we are, we tend to wish we could have longer still. And it is part of life to die and part of love to lose. Doesn’t make it any easier knowing all that though does it?
Again sorry for your loss and sorry for the length of my reply...
I'm so sorry to hear of this loss of the love of your life for so many years. Try to rest easy in the fact that you had her in your life for so many years. You will have many fond memories of your time together allthough that may not seem that easy to think about right now. In time you will come to cherish your time together and think of her and smile. She faught a great battle and now she is resting and no longer suffering. You will be together again one day with the lord.
I’m very sorry to hear about your wife’s transition. Your wife was fortunate to have such a supportive husband as you. My prayers for you and your family 🙏🏽🙏🏽🙏🏽
Thoughts and prayers going up for you during your time of remembering and loss. You sound like a wonderful, caring, caretaker for your wife. She was fortunate to have you.
I am going to go to my husband and tell him how much I appreciate all he does for me.
My heart goes out to you. Losing your partner after all those years together must be devastating. I send you courage , love and strength . . . Remember we are still here for you whenever you feel the need to share. Blessings going out to you and a tremendous hug.
Sincere sympathy to you at the sad loss of your wife. She certainly had a rough time. CLL is so unpredictable as to which path it will take. Wishing you all the best.
So very sorry for your sad loss, unfortunately you will never know the answers to your questions and it will remain with you so please think more of the wonderful years you had together, when she was happy and well, treasured memories that will never be forgotten hugggggs
I want to tell you how very sorry I am to hear about your Wife’s passing. She sounds like a very strong woman. Although your wife walked quite a difficult road, I am certain that having you by her side made the journey bearable. As you navigate through the grief, please be gentle with yourself. We sometimes are so focused on the person battling CLL that we very often overlook the caregiver. May you find comfort in the many memories that you have made over the 50 years you shared.
You’ve both been through the mill and had to deal with so many difficulties .... Hope that the good memories from the past almost 50 years can help with the difficulty dealing with the loss... Take comfort that you were there for her throughout the whole ordeal but that your life together was so much more than CLL .
Hello Hugo! Thank you for this story! Very sorry for your loss. She was so courageous! Praying for daily healing as you remember your wonderful wife! We will remember her too because you shared this. ~Lisa
I’m so sorry that you lost your precious wife, The two of you went through so much over the last decade! It sounds like she was a wonderful and tough lady and you were by her side supporting her through it all. I sincerely hope the good memories flood your mind in the months and years ahead!
My most sincere sympathies on the loss of your beloved wife. She sounds like a very strong and kind person like yourself. I am glad you had almost 50 years together although you must be missing her so very much. I’m sure she felt loved and supported by you.
Thank you for telling us your story. Hopefully it will allow us to understand our own illness a little better.
sorry to hear this - its not good -- it brings it home to us other cllrs even more about infection -- I was actually feeling pretty good till I saw this today , however my condolences and hope you cope in future
Deepest condolences heading your way. Know that you are deeply loved by an incredibly brave woman who was at your side for so many years. With the devastating loss comes the hope that you will be together again in another life.
I am also sorry to hear of your wife's passing and thank you for coming to grips with it, to the point that you could share her history so we might learn also of her trials. Blessing.
Thank you for taking the time to reach out on the forum despite having to deal with the grief of losing your wife.
One thing I am so grateful for is the opportunity to come into contact with people on this forum who are some of the most courageous people I have ever met. Through you, I can include your wife as well.
I have found personally it gives me strength and allows me to focus on a bigger picture. My husband has CLL and I am sure he benefits from how being on the forum helps me.
Your posting is very touching. It is obvious that you were acutely aware of what having CLL meant for your wife and she was so fortunate to have you by her side.
I'm so sorry for your lost - there is no way to minimize it but hopefully you can experience some feeling of comfort in being there for her and making a difference.
I am so very sorry for the loss of your wife. My heart breaks for you and your family and I will keep you in my thoughts and prayers during this extremely difficult time. Thank goodness she had you to love and support her through all of this mess of CLL and related complications. Your wife sounded like a very brave and courageous person that I’m sure will be deeply missed ♥️♥️
As the wife of 44 years to a man who also has CLL, I thank you for sharing your wife's story. I am so sorry that you lost your partner of 50 years....but I am grateful that she and her doctors have learned from her journey and that this will help others as they battle this disease. I hold you in my heart today, and pray that God will hold you in the palm of His hand and bring you peace and comfort.
Thank you for sharing your story. Please accept my heart felt condolences for your loss. It sounds as if you were both very courageous through this. I'm sure that having you in her life lightened her suffering and I'm sure she never felt that she was facing her CLL alone. Wishing you comforting thoughts.
So sorry to hear about your wife. May she rest in peace. She showed so much courage through her ordeals. She was blessed that she had you for support. Bless you.❤🙏🙏🙏🙏🙏💖
Hello HannahHugo, so sorry to hear about your wife. I know it's hard and I know there no words to make it better. People say give it time but she will always be in your thoughts. I am sending a hug and lots of love your way!!💗💗💗💗💗 I will keep you in my prayers.
I am so sorry to hear you wife has passed. She sounds like a happy fun loving person. The lives she touched will miss her greatly. Prayers for you and your family.
Dear HannahHugo, I am so very sad to read your post; it can't have been at all easy for you to write. I want to thank you for sharing your precious wife's story. I hope you are surrounded by love and support throughout this sad time. Please know there are many people here who will have you in their thoughts, and I can only hope this will bring some small comfort to you.
I am terribly sorry to hear of the passing and struggle your wife had. I am in Australia and was diagnosed almost 20 years ago. My first hematologist whom I saw for 10 years actually died, very suddenly in a similar situation to your wife, with no previous health problems. He was an amazing Doctor and very well respected. I have since gone on to have many more treatments but did have almost 10 years of Rituximab with my initial Dr. and remained reasonably well over that time. I have also had major health problems over the next 10 years along with the CLL and would just like to say that the choices and knowledge of CLL available over the years must have some professionals questioning their own decisions, especially with the continual availability of new treatments. For me I have trusted all 3 specialists that I have had and if there were questionable decisions made, I know they were made with the knowledge available at the time and always with my overall health in mind. I think Adrians comments were thoughtful and encouraging and the news that your wife had a night at home, full of beans, full of courage must have been her way of saying goodbye. She sounds like a great lady and you never know the rituximab may have helped her through those first years. Thinking of you and your grief.
Oh, so sorry for your loss. She fought a good battle! Unfortunately, it’s more times then not that infection takes out our CLL fellow warriors. Bless you!
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Ibrutinib ..Sore Infected Fingers (paronychia)
Health Canada approves Ibrutinib plus Rituximab for First Line Treatment of Patients with Chronic Lymphocytic Leukemia (CLL)
Quite the CLL journey 
Feeling really lost and scared.
