I was diagnosed with CLL in May 2017 (88 years old now) and have been on Watch and Wait since then. Things changed dramatically this past week when I had my 6-month visit with my doctor at Cedar Cancer Hospital in Montreal, Canada. My WBC jumped from 30,000 to 53,000; relative lymphocyte 75%;hemoglobin 105(low);
We are waiting for results of the FISH and some other specialized blood test that was ordered.
I will be starting on Ibrutinib shortly (as soon as it is approved by our government healthcare) and am feeling a little anxious. I have been following posts on here and have learned so much from all your experiences.. I know everyone reacts differently to the medication but would appreciate any advice or tips on how to handle treatment.
Marber
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Marber
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You will do just fine. I too was very anxious before starting the Imbruvica but I didn’t have any problems....you are already aware that we are all very different and if you have questions this is the place to come....someone will able to address the issue you are having.
My only advice is to drink a lot of water as that flushes your kidneys plus it helps you control you appetite as for some people there is a tendency to gain weight which may or not be an issue for you. It wasn’t an issue for me but I was very much aware there could b an issue. Since I am in your age group we don’t want any issues that we are able to avoid.
I wish you the best of luck on your new journey and you have a Merry Christmas!🎄☃️🎅🏻🤶🏻
Thanks for your quick reply and wise advice. Of course it’s not only the results of one test. I have extreme fatigue; night sweats, nodes. Hard to function and not enjoying life!!
Drink plenty of water - especially in beginning of treatment when kidneys will be flushing out a lot of dead B-cells. Stay hydrated to best of your ability. And give your body time to adjust to any new issues that arise. I lot of minor or even moderate treatment side effects will be temporary as the body adjusts to the drug and clears out the CLL burden. I have been on ibrutinib 2 years and wouldn't even know I'm taking a drug, and wouldn't know I have CLL. So it's been a miracle drug for me! Good luck to you!
Ibrutinib is a game changer. I have been on it for 3 plus years and my last visit indicated a complete response. Took awhile to get there but it got there! This drug is a total relief especially for us who had to have chemo as that’s all there was. So feel really good about where we are from a treatment perspective compared to five years ago even. Your timing is good! Anyway, Here are my top five tips from a side effect perspective:
1. Water, water, water / 2 - 3 liters a day especially in the beginning as they usually start ibrutinib with allopurinol. Infuse with lemon or cucumber or berries - whatever it takes to drink. Very important. And even after allopurinol is done continue with water.
2. Side effects like joint pain and cramping - soak in bath tub of Epsom salts and for the hands and feet the hot paraffin wax dips helped me a lot. I also got a hyper-volt massage device to reduce the duration of the severe cramping in legs, feet and hands I experienced. Life saver.
3. For drying and brittle nails - cuticle oil, silicon finger protectors, vitamins for nails like biotin 10,000. This continues to be an issue but has stabilized.
4. Be prepared for your numbers to go up at first as the bone marrow starts dumping into the bloodstream. And sometimes numbers also plateau and are flat before they start to come down. Ibrutinib is not like chemo where numbers can dramatically drop after one infusion providing a big psychological boost. Ibrutinib takes a steady diet of the mind and patience - no instant gratification - but I’ve already done better on ibrutinib than chemo from which I only enjoyed a two year remission.
5. Random skin issues - blocked pores, hypersensitive skin, random red marks, bruising all eventually resolve but takes a bit . So take very good care of your skin. Also, avoid too much sun and use a dermatological sun screen - cll warriors are prone to skin cancer.
These side effects lasted about 7 months for me then eventually improved and resolved. I take my ibrutinib in the evening. One last thing - if tired I rested - but I also kept moving no matter what - exercise is important. Sending best wishes - you got this!
Pls relax as I am on Ibnutrib since Jan 2017 , and barring 4-5 months stoppage as was taking treatment for Pneumonia/ Fungal Pneumonia’s antibiotic medicines which clashes with Ibnutrib.
Now all my parameters under control with TLC as ard 18-24 ; Hb at 12-13 n Platlets ard 150.
Earlier used to have extreme fatigue, and pains in legs , didn’t have much of problem except occasional stomach ailments which was able to control by taking home made food and controlled fatigue by resting max .
So go ahead with positive attitude and relaxed mind as noticed Stress plays a big negetive role.
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