I have been writing here for a while about my mom's disease progress, and we are getting unfortunately closer to a treatment. Her WBC rose from 90k to 170k in 3 months. As I mentioned before we will be probably going for Ibrutinib as agreed with the doctor already and I was looking forward to hear some success stories at this age, because we are so so scared.
Btw the turn of events was so surprising, because in the last few months mom's bulky nodes disappeared (she used to have them from almost the beginning). Now they return worse such as her blood results.
I will be happy to see people in good health after Ibrutinib, because honestly I think that anything you start treating becomes a bigger issue later based on our experience such as diabetes etc. I also know that Ibrutinib is to be taken for life, anyone at this age who took it and then stoped still in remission?
Thank you in advance.
Lots of love,
Paula
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paula_dae
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Hi Paula. I have been on ibrutinib nearly 2 years, and it's been very good to me. No major side effects that I am are of, and it corrected all the serious symptoms of my CLL quite quickly. Some people do have more side effects with it. But let's hope your mother isn't one of them.
Only a small percentage of those on Ibrutinib monotherapy achieve MRD undetected after 5 years. You need to look at a combination treatment with say Venetoclax to greatly improve the chances of that occurring and your mum being able to stop treatment.
Thank you, Neil. The doctor mentioned that but I will be covering the cost of the medicines and a combination will be almost impossible to sustain. I am looking for trials tough.
Your doctor mentioned it for the same reason as me. The undiscounted cost of Ibrutinib is about US$1 million for 6 years, with a small chance of reaching MRD undetectable. It appears that there’s a very good chance of reaching MRD undetectable on Ibrutinib + Venetoclax in far less than 6 years, particularly for treatment naive patients like your mother. Watch for reports here on the outcome of the FLAIR Ibrutinib + Venetoclax arm and similar reports from the USA.
You may remember it was my concern about financial toxicity that was behind my earlier suggestion to you that you look at the suitability of FCR. I appreciate it's not an easy choice when it's your mother's life.
Hi my Dad, who is almost 74, has been on Ibrutinib for 3 1/2 years now. He had a big infection after 2 months and the doctor put his tablets down to 2 instead of 3 but he has been fine since. No side affects apart from the usual tiredness. Good luck but I’m sure your mum will be fine xx
I've been on ibrutinib for over 5 years with the usual side effects (muscle & joint aches) but none were severe enough to reduce or stop dosage. I'll be 72 next month. I wish your mother the best.
I always find your posts encouraging. Though I am 55 y/o so am no help to the poster, I did just start Ibrutinib last week. Day 3, I developed pain in my left ankle. I limped for 3 days. It was swollen from inflammation but Tylenol helped. Then it passed and then one knuckle on top of my right hand swelled for 3 days. It’s gone now and feel good.
I am 81 with SLL. I have been taking ib since January. It knocked the nodes right back. Side effects: Mild mouth sores at the beginning, good BP became bad, leg cramps at night got very bad. Then I got side effects from drugs to deal with side effects. The worst was a rash and high fever in reaction to allopurinol given early on to avoid tumor lysis syndrome. In June I had an episode of low blood pressure and tachycardia that was probably related to my BP medication. Current status: off BP meds, BP 130/65; using magnesium and theraworks to quell the leg cramps. I am still taking ib. Fortunately, my insurance makes this financially painless.
Given my family history, I never expected to make it to 90. I have had a successful and fulfilling life, so I am taking it one day at a time. Right now, setting aside the SLL, I am very healthy and physically active. Just hoping for a "good death".
I am almost 71. On Ibutrinib almost 3 years. Feel fantastic. Cll symptoms disappeared and blood counts normal after 2 months. No fatigue. My nails are brittle and hair turned curly. Relax and be thankful. Without ibutrinib I would be dead. Every day a gift.
Such an encouraging post - Thankyou. I am on day 6 & fingers x’d. I have P-17 deletion and at this stage quietly optimistic. So grateful to the researchers/scientists/Drs alike.
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