Hello I am on here because my mom (92) has been told her cll has woken up. My mom was first diagnosed 12 years ago. Her onco wants her to start ibrutinib . Due to my moms age I want her final time to be comfortable. I'm not happy with side effects and have tried to give impartial advice to mom. Her onco is quite insistent she starts this treatment. Does anyone near her age have any experience of this drug.
Ibrutinib at 92: Hello I am on here because my... - CLL Support
Ibrutinib at 92
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Kuschey
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Ask for acalabrutinib-brand name calquence. It has fewer side effects and works the same way
If it were my mother, I would be wanting a 2nd opinion from a CLL specialist - someone who only treats CLL.
At age 92, I would have concerns that the treatment could have worse effects than the ailment.
Perhaps find out a bit more information before proceeding.
Thankyou seelel
Her consultant specialises in hematology. She has seen the same doctor since first diagnosed. I have explained to my mom what she could experience if she were to take this drug. Her doc has said that if she doesn't have treatment her life span would be 2/3 months. My mom understands that she wont live forever and has said to me that she doesn't want treatment and take her chances. My brother did until her appt today agree with her however her doctor then painted a dismal picture that she could get a blocked bowel as a result of non treatment. My Bro lost his wife to ovarian cancer and suffered this condition in her last weeks. This being fresh in his mind doesn't want mom to suffer the same. We now have a conflict of interest. I want to honour my moms wishes my brother has other ideas. The doc wants her to sign a consent form. #family in turmoil
I am sorry to hear of the conflict of interest in your family. It is a difficult decision someone has to make.
Is there the possibility of using a very low dose of Ibrutinib to gently manage the CLL and prevent it from developing into the possible blocked bowel outlined by the haematologist?
in reply to seelel
ibrutinib is more likely to cause diahrrea then blocked bowel
Kuschey in reply to
The blocked bowel is if she had no treatment.
Why would she have blocked bowel? Does she have tumor or spleen issues.
Her spleen is enlarged because of the cll
Did the doctor state that the spleen is affecting her bowels. If it is her lymph nodes that are causing the problem, some of the other treatments, like Gazyva or chlorambucil might reduce the lymph nodes with less risk or side effects. Ask her doctor about considering all treatment options, taking her age into account, either as the initial treatment or as a backup if ibrutinib causes problems. Also ask his feeling about reducing her dose if side effects become a problem. All of those questions should be answered before treatment begins.
Not sure it's a question that needs asking. He hasn't really advised what the dosage will be. She would be taking an AB every other day and an antiviral tab every day in addition to the IB. I have a bro who lives in USA who is in agreement with me. The other bro lives in london UK I'm the only relative/carer near my mom.
It is certainly your mother's decision to be honoured + the support of two other children. If that is the case, then I imagine the way forward will take care of itself.
I hope so I just feel that the doc is being bit bullying. It doesn't help tho that mom tho not dementia has some memory probs. She comes to see doc and looks so bewildered.
One other thought I had is that if your mother’s time is that short and she prefers not to treat is to call in hospice. Hospice will focus not on the care necessary to prolong life but rather the care necessary to make your mother’s last days comfortable.
I used hospice services in the last five years with both of my parents. They both agreed to it and my sisters and I were most grateful for the care hospice provided our parents in their last days.
Ask for calquence . It has much less side effects than ibruntnib your mom could be around another 2-5 year’s with the new oral drugs for CLL
Is her oncologist a CLL specialist ? I would make sure she has a CLL specialist opinion and treatment plan
Get second opinion. A CLL expert!
Ibrutinib can have very severe side effects. My Dad was on W&W 30 years. When he reached 93 his oncologist said normally it would be time for treatment but I would not suggest it. He was feeling fine and lived to 94. His heart condition and diabetes contributed to his passing. It's up to her. But important to not have her doctor push treatment. 💕
I am a bit confused by the situation with your mom and how healthy she is otherwise than her Cll.
My side effects with Cll have been relatively mild. I have not read or heard of any age cutoff for ibrutinib as there is with chemo.
It sounds like a balancing act. My wife’s aunt lived to 104 and if she had Cll at 92 Ibrutinib might have given her 12 more years.
I have seen discussion here of the tolerance issues your mom might have with ibrutinib but little consideration of the pain she will almost certainly suffer from untreated Cll. The effects of untreated Cll seem more certain to me than the possible side effects of ibrutinib.
Deciding how to treat an elderly parent and balancing quality of life issues is very tough. I wish you and your family the best in making the right choice and would not presume to suggest what to do based on such limited information provided.
All I have to offer is to say you should not assume ibrutinib will automatically have difficult side effects, it may not. A question I would ask my doctor is if the elderly have more tolerance issues with ibrutinib and if that can be quantified in any way. A lot of people consider the side effects to be relatively mild.
MsLockYourPostsPassed Volunteer
I hope that you can convince your mother to get a second opinion from a CLL specialist! A general hematologist deals with all blood cancers.I believe that you are in the UK. Others from the UK can advise you about true specialists there who would be in your mother’s area. A doctor bullying your mother into signing a consent form is totally inappropriate and unacceptable!
Did her doctor explain what would cause her bowel to block? That’s an important question. My best guess would be enlarging lymph nodes, but I am not a doctor. If that is the case, I think Gazyva (obinutuzumab), or even Rituxan monotherapy, would also be something he would consider, or even chlorambucil, which is a very old chemo, but often used still with older patients because it can be more gentle than some other options. Ibrutinib or Calquence could be effective with minimal or no side effects., but all possible options, including how ibrutinib is dosed, since it is being suggested, should be discussed. as well as a plan B if ibrutinib is tried and there are bad side effects.
Your mother’s options may be somewhat limited by the regulations in her country, but I believe that she probably has more than one. I have an issue with doctors who remind me of the old one trick ponies where treatment is concerned. Ibrutinib, or ibrutinib, or ibrutinib. I also don’t deal well with doctors who play God instead of listening to their patients and looking at what is in their best interests, considering age, lifestyle and how they wish to deal with end of life decisions.
I have two great aunts who were sharp as a tack and running businesses up to ninty. One lived to 96, the other to 106. In both cases, they were the “vegetables” that all of us dread becoming the last 4 or 5 years that they were alive.
My mother made me promise that I would never allow her to end up being just kept alive like they were. My biggest regret in life, something I had no control over, is that I couldn’t stop the ER doctor, when she was barely coherent and clearly dying, from convincing my sister, who had power of attorney, to turn her into a pin cushion and then have a central line inserted. My sister signed the consent and then disappeared. She just couldn’t deal with losing her mommy. It broke my heart to be the one holding my mother’s hand and talking her through the procedure. She died right after it was finished.
I hope that you can convince your brother to be part of a discussion with your mother and you - maybe Skyped to include your other brother, and maybe her minister or other trusted but impartial person in her life, also - about what her end of life wishes are when that time comes and what she considers to be reasonable in terms of treatment that could give her more years of a life with quality. It is a critical discussion that all of us should have with loved ones, and more than once over time. What we think at 20 or 50 or 90 often won’t be the same.
You will be in my thoughts as you work through helping your mother to find the right path for her.
I have drawn a picture with her in the middle with one side prognosis without treatment the other with. I have put it on the wall . It is there to remind her as she cant keep stats in her head and forgets. She has now preferenced to take IB. And has said that if she has a whiff of any SE she will ask to come off it.
My Mom died from complications associated with CLL. This was before Ibrutinib and similar drugs were available. Her only choice was chemo which she refused because she was 85 and didn’t want to do chemo. She died within 6 months. I wish I could say it was pleasant but unfortunately it wasn’t. My Mom could not eat anymore because of her enlarged spleen and lost a tremendous amount of weight in a short time. In August she was as sharp as ever, when I visited her in December, she had a lot of memory loss. She had no energy and just sat in a chair the whole day. It was winter and because of the weight loss, she felt cold all the time, making it hard to take her out for anything. We tried home-care but at the end she needed around the clock care and she was admitted to hospice. She was in a lot of pain and didn’t recognize us anymore in the last days. I am Dutch and my Mom died in the Netherlands. Luckily she had made a living will and in the Netherlands euthanasia is legal, we were able to make the decision to let her go. I don’t want to scare you you but I would seek a second opinion to see if other medications with less side effects would be an option for her. If she is still determined not to seek treatment, please have a plan in hand on how to treat and manage any complications. I hope you will all come to a decision you can live with, wishing you strength.
Many people (my husband included) take Ibrutinib daily with no side effects at all. If she started it and did not like how she felt she could always lower the dose or stop. I can’t imagine having something as easy as a pill available and not at least trying it, but it’s definitely her decision.
I’m on a clinical trial treatment that includes Ibrutinib. I was very anxious about starting the trial as I wasn’t feeling that badly. Wow! What a difference the trial has made I feel so much better. I am younger than your mom but maybe she would feel better too. So many symptoms I put off to other things age, etc. all gone!
NewdawnAdministrator
My mother in law has smoked all her life, hates fruit, has never embraced the ‘super foods’ and has always worked hard with a fair share of stress.
She’s 92 soon and has blood levels and joints I’m envious of! Genetics are important I reckon.
Newdawn
But very curly! Elizabeth.
I would get a second opinion from a real CLL specialist.
My mom is 87 and has CLL as I do. She has had her GP due labs until a year ago he insisted she see an oncologist. (She’s been w&w over 12 years.) Mom went twice and refuses now so her GP and her 7 remaining children are abiding by her wishes. She is very adamant about it. We will deal with what comes when it comes... She says she tired and has lived a long, full life. Wishing all the best for your mom, you and family.
Not so much eating she liked a tipple of whiskey. Had to curtail it tho as she couldn't control how much she put in her coffee and how often she was drinking nearly a litre per week and wine as well.
I remember my Grandmother was treated for something like CLL ( I believe it was CLL) in her mid -50s. In those days, it was spoken about in hushed tones and I was a only a kid. It reappeared in her 90s & we were advised that old age would get her before the leukaemia - so they didn’t want to treat her - something that turned out to be true. She lived until she was 94.
NewdawnAdministrator
Hi Kuschey,
What a tough situation for you and your mum particularly as there’s family discord about what should happen.
Frankly, if your mum has mental capacity, it is entirely her decision as to what should happen at any age as long as she’s armed with full facts. If she has any degree of cognitive impairment including memory deficit, I really think a skilled advocate should speak with her like a clinical social worker or a mental health nurse. You cannot then be accused of influencing her and the haematologist cannot ‘bully’ her into treatment. If she has expressed a wish not to have treatment then the haematologist cannot use her age and fear to insist on it! He needs to explain the clinical rationale for his alarmist comments about a ‘blocked bowel’.
I think however, if she is in agreement to starting Ibrutinib, it should be on the strict agreement that should it impair her quality of life at her advanced age, it should be ceased immediately (should she agree).
I’m many decades younger than your mother and find the side effects from Ibrutinib brutal on my joints. It doesn’t affect everyone like that but in truth, I’d never have wanted my late mother to have started it. She died 20 months ago at 88 and didn’t want any further invasive treatments. Her doctor fully concurred and described her health care as being devoid of heroic efforts but intended to allow her to enjoy a reasonable quality of life without pain or distress.
Much depends just how necessary this treatment is now. I can’t get a sense of this but please make sure she isn’t bullied into a treatment that may give a little more time over quality of life.
Why on earth shouldn’t she enjoy a tot of whisky at 92! 😉
Sending best wishes,
Newdawn
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