Hi Billy,
I haven’t tried bribery I may do when I go for my next infusion but, I can’t see how the staff that treat me could improve as they are amazing and very attentive
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@Mickbrit perhaps call it a token of your appreciation then !!
Look after yourself and please keep posting what’s going on for you.
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It makes such a difference to have a good team around you!
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Hi @Est30
Just opened this page.
I started this treatment in June after 7 years watch and wait. I was concerned about COVID but the effects of CLL gave me no choice but to go ahead. My wife worried about having family round me but we made the choice to go ahead . It appears to have been the right choice as some blood results have improved. Do not expect to have immediate results, I am half way through the Obinituzamab infusions and 2 months into full strength Venetoclax which I hope will improve my CLL. I try to stay safe only meeting with the people who have been vaccinated, including family. I can only hope that you do what you feel is best for you and I prove. Best wishes. Michael
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Hi @Michael a great big welcome to our forum and by sharing your experiences you have already shown the value of our forum.
Not an easy time to start treatment during Covid times.
Everyone has different dilemmas and come to different decisions about what is best for them in their particular circumstances, but they are not decisions taken lightly as you show.
I hope other half of your treatment works well.
I look forward to hearing more about you.
Look after yourself and keep posting.
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Hi @Michael and welcome to the forum.
It sounds as though you are being really sensible and doing what is best for you.
That’s all we can do.
I hope that the treatment continues in the right direction. Sounds like it’s been a good start!
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Had my final infusion of obinotuzumab yesterday, 6 months has flown by. Now I carry on with venetoclax for the next six months and then fingers crossed a good few years free from symptoms. I hope my vast improvement encourages other people on their journey through CLL, there is light at the end of the tunnel 
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That’s great news. 6 months ago I bet you never thought you’d get there! Have a day spoiling yourself - it’s well deserved.
Take care X
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Hi @Mickbrit another milestone completed, yes, you celebrate, stay safe and keep posting.
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Hi Nichola75, I’ve got Chronic lymphocytic leukaemia (CLL) & was diagnosed Aug 2017 while having a routine blood test, I had no symptoms & still haven’t. My specialist decided to start treatment in May 2021 as my red blood cells were hovering around 94 - 98. The treatment consists of 6 months on obintuzumab (intro drip at the hospital day unit) & 12 months on Venetoclax (tablets). I’ve now finished my course of obintuzumab & have until May 2022 before I finish my Venetoclax tablets.
Obintuzumab first month I had 1 dose a week 1000 mls & then 1 dose each month (9 doses in total). I didn’t get any of the common side effects, thinning hair, sensitive hair, sickness, diarrhoea, constipation, mouth ulcers. So I counted myself as very lucky. But when they gave the first dose (which they do as follows: 200 mls one day (wed) & the following day (thurs) 800 mls to see how your body reacts) I was OK. But that weekend I felt very tired, had to rest once I walked upstairs (not like me). When I went for my bloods taking on the Monday, I was on my way home & they called me back for a blood transfusion as my red blood cells had dropped to 59. I had 2 pints of blood & I had to give myself white blood cell injections every day for a week (bottom of my tummy). The first dose had whipped my out, so they built me back up & carried on with treatment the following week. I didn’t have anymore hiccups after that.
Venetoclax due to the reaction I’d had on the first dose of obintuzumab they kept me in hospital for one night when I started on the Venetoclax. I had no reaction on the Venetoclax. They started me on 20 gm a day for the first week, second week 50 gm per day, third week 100 gm, forth week 200 gm per day & fifth week 400 gm per day. 400 gm per day was the maximum dose I’m on for the following 11 months. Up to now I’ve again had none of the common side effects & I’m feeling fit & well. I’ve gone back to doing the school run for my daughter & son a couple of days a week.
Down sides if there really is any (small price to pay) ! Putting up with my silver grey roots as you can’t have your hair coloured until 8 - 12 weeks after you have finished the obintuzumab treatment. Booked my appointment for 17th Dec (12 weeks after my last treatment). And when they give you obintuzumab they give you a steroid first which has made me put on half a stone on (weight usually 9st) which I’ll soon get shut of.
Hope my reply has helped you in some way ?
Good luck.
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Hi @Dusty welcome to our forum.
I also have Chronic lymphocytic leukaemia (CLL), I was diagnosed in 2003 and have always been on watch and wait (or active monitoring,
Thanks so much for telling us your treatment ‘journey’.
You seem very self aware of how you are feeling which is great.
It must be so difficult having school aged children when you are not feeling good or/and fatigued and naturally they have their need and practicalities and the worry of Covid infections as well.
I am so glad that you have your hair appointment booked for the 17th Dec. I bet you are counting down the days.
How do you aim to loose your half a stone, I find it is so much easier to gain weight than loose it.
Look after yourself and please keep posting.
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Welcome to the forum and thank you for sharing your experiences. That’s what this forum is all about, supporting others. I bet you can’t wait to have your hair done! Take care of yourself x
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Hi @Dusty and welcome. I feel very lucky as I’ve had very little in the way of side effects from any treatments I’ve had. It sounds like you’ve got a good grasp of everything though.
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Hi dusty,
I finished my obinotuzamab. And am now solely on venetoclax I had to have a short break for something totally unrelated to my Chronic lymphocytic leukaemia (CLL), I have restarted treatment today surprisingly after 5 weeks off back on full 400mg a day. I have had no other reactions and my condition has improved remarkably. Good luck for the future
to had a reaction tomy first obinotuzamab but, nothing since from either drug only improvement in my condition
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I do wonder if there is any connection between Chronic lymphocytic leukaemia (CLL) and white hair …mine has been white all over since I was 45 …too much to dye and eep up with 
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Hi @Annie78 what an interesting thought, I have Chronic lymphocytic leukaemia (CLL) and have blond, more white now, hair and blue eyes, I am 71yrs old now and was diagnosed at 53 yrs old.
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Thank Erica for your reply, the school children I pick up from school are my daughters (Vickie 36) & my son’s (Chris 34), they have two children each Alex 81/2, Scarlett 7, Jamie 9 & Mollie 6. So grandchildren that you can spoil & give back !
Yes I’m looking forward to having my hair done, I don’t like the gunmetal grey look ! I’ve just been having it cut over the past 9 months while having my treatment
How are you managing to cope with your Chronic lymphocytic leukaemia (CLL) ? Have you had or receiving any treatment at the moment ? And how long have you know that you have it ?
I found I had it while having a routine blood test (which I usually have each year) in June 2017 and was diagnosed in August 2017 & probably had started with it in Jan 2915 ! My white blood cells had reached 9.5 & they don’t pick it up unless it goes over 11 (normal levels are below 5) as your body could be fighting an infection ! The week I was diagnosed my husband was really upset, I was that weekend. But thought to myself do I spent the next 20/30 (or whatever time I have left) being miserable & feeling sorry for myself (and making my family miserable) ! No I’m not that kind of person, I’ve always been very positive & looked for the positive in every difficult situation ! Difficult as some people find it & not to sound morbid, none of us are here for ever ! I just ask that I can be as healthy as possible & stay & be with my family as long as I can !
Hope to speak to you again ?
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Counting the days down, it’s the day after my birthday ! I don’t like the gunmetal grey look, doesn’t suit my personality !
I’m wrapping (this afternoon) some present for the hospital staff in the day unit at the hospital, as appreciation for all their help & care.
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That’s a lovely thing to do x
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Hi Mickbrit,
I had a reaction to my first dose of obintuzumab, it wiped me out. But after a week building me up with 2 blood transfusions & a week of white cell injections (which I did myself). I was ready to go the following week & back on track, so stay positive & hopefully you’ll be back on track soon !
I’ve had an odd day when I’ve felt nauseous for a couple of hours, but I take one of the sickness tablets the hospital have given me. I think I’ve only taken about 6 tablets in the 9 months of my treatment. I count myself lucky as I’ve not had any of the other side affects.
Good luck with the rest of your treatment.
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