3 months into treatment now for Chronic lymphocytic leukaemia (CLL) and finding it tough going, on 400mg of venetoclax per day for 12 months and about to start my 4th obinutuzumab chemo infusion at the hospital for the day. i find the fatigue is overwhelming now and i have no energy to do the simplest tasks but all my lymph nodes have gone down and my spleen is not as swollen and my blood work looking better so it must be working, just for anyone who is about to start treatment it’s not as bad as you are probably dreading once you get into treatment, I take around 10 tablets a day i find rest is the only way to cope with fatigue at the minute and the NHS doctors and nurses have been brilliant can not fault them, so if your about to start treatment rest assured you will be well looked after thank god we have the NHS
.
Oh @weno how great to hear from you and thank you so much for taking the time to update us all and share your experiences for others who might be starting similar treatment.
Perhaps give yourself time because you and your body have been through a lot emotionally, psychologically, medically physically and practically…
Yes, aren’t we so, so lucky to have our NHS
Look after and be kind to yourself and please keep posting
Hi @weno
I’m so sorry to hear you have Chronic lymphocytic leukaemia (CLL) and that you’re undergoing treatment. I had chemo for a different blood cancer, and can completely relate to what you say about fatigue. However, it’s fantastic to hear such a positive message, which I’m sure will be read by lots of people about to undergo similar. I imagine it will be very encouraging for them to read this. I wish I had come across this forum as I embarked upon treatment, and that I hsd read a message similar to yours.
Thank you for putting this out there.
PS. And I agree about our NHS. It may have had difficulties inflicted upon it, but it is still fantastic and free.
Hi @weno
I’m on cycle 11 now of Obi/Venetoclax for Chronic lymphocytic leukaemia (CLL) and also suffer from the annoyance of fatigue and it’s got worse as the cycles progress. I am also unlucky in that I have had the most terrible ‘long bone pain’ and so have morphine and co-codamol to cope with it - not everyone gets this issue, but it has hit me hard. Of course, then the high levels of pain relief bring further problems like not being able to drive or work. I am having 15 cycles in total as they had to reduce my dose of Venetoclax due to the severity of the side effects, so I’m coming up to one year, with an additional 3 months after that. It feels like a lifetime, but I have to remind myself that it’s a lifeline!
Sadly, my latest CT scan shows that my spleen hasn’t responded as they had hoped, so I am now worrying about the possibility of having it removed. I am super grateful to our NHS for all the treatment and care, but I have already decided that when the time comes for a second round of treatment, I will refuse it. Having already lost 3 years of decent life due to Covid/shielding and another 15 months+ of treatment consequences, I am would prefer to let my body ‘go’ naturally and not undergo more treatment, as I have found it debilitating and painful.
However, I am genuinely pleased for you that it is going well and I wish you a long period of remission! 
Oh @SpaceAngel, it is really good to hear from you again.
You have really gone through it over the last 3 1/2 yrs and you are still going through it with Covid and treatment side effects.
Obviously you have thought about it really carefully and it is your right and your decision not to undergo further treatment, if it were to come to it, but if you were to want to talk anything through the Blood Cancer UK support line is always there for you on 0808 2080 888 and we are always here for you too.
The main thing is that you really look after and be very kind to yourself and it sounds as if your treatment team is looking after you as well.
Please keep posting
hi spaceangel i understand your concerns with treatment had my 4th obi/canceled due to an infection this week also feel i had a better life without the treatment, i have a ct scan next week to see if my spleen has shrunk but i know it feels the same so hoping. i too have considered whether the effects of treatment have been worth the side effects but i have to consider the chance of getting rid of the cancer cells for many years to come which could put me back to a normal treatment-free life which sounds great just now, your right i have found the treatment harder as i have gone through each cycle so can only imagine how you feel after a year, i hope things settle down for you and i know it’s hard to warrant the side effects but we do not have another option once we reach the need for treatment, i know its hard to stay positive and hope you feel better soon. regards weno
hi all i had my 4th infusion today at the hospital so feeling a little tired with all the pre-meds and treatment,i went to see my consultant hematologist yesterday and my CT scan showed my spleen had shrunk in size so good news there, the bad news is my hands are peeling off layers of skin and so sore just washing them is agony at the moment its believed to be a drug reaction to venetoclax but can not be sure, my dose of 400 mg per day has been reduced to 200 mg to see if this will elevate the problem, has anyone had a problem with peeling skin on this targeted therapy or it may be just my reaction i will keep you posted after a month reduction of the venetoclax, so to sum up feeling the treatment is working well with reduction of my swolllen speen and blood work looking positive and hopefully my side effects will improve.
Oh @weno that sounds really painful.
Can your specialist nurse , consultant, GP or pharmacist suggest anything that might assist with the peeling skin or making your hands more comfortable?
I hope someone will be able to assist you and yes, please do keep us posted.
Do gloves assist at all when washing up etc.?
Good news about your spleen though.
Be kind to yourself
I had my latest appointment with my consultant today and for the first time the subject of possible treatment was discussed. Firstly I was a bit surprised to be told it would be my choice of treatment when the time came to it. Either the Obinutuzumab/Ventetoclax option or the Acalabrutinib treatment.
Although treatment may be a little way off, I was sent home with some “homework” to do. My first thought was to ask anyone on the forum if they have experience with these treatments and why their particular treatment was chosen.
Hi Mike i have been on obinutuzumab and ventetoclax for last 6 months i have had all six infusions of obinutuzumab and i am now in to last six months of ventetoclax i found the infusions were ok no real side effects but have had problems with ventetoclax peeling skin on hands and a few chest infections so now on 200 mg instead of 400 mg tablets for the rest of the six months it hasn’t put me off recommending this treatment because my blood work is showing my Chronic lymphocytic leukaemia (CLL) is all but negative so pleased i started it, by the end of the next six months i am sure there will be no trace of it left in my body, once your body gets used to the treatment it is tolerable and it has worked wonders in my case,the consultants keep a close eye on you during treatment so you have nothing to worry about, i know everyone has different opinions on the best treatment but i can only give you my experience and recommend the treatment i am undertaking, good luck with which treatment you decide and i am sure either will give you positive results.
Hi weno and thanks for your reply. Getting the opinion of those who are on treatment is a great help in eventually choosing which treatment to choose. I hope all goes well with you.
hi everyone well i am into the last 2weeks of my 12-month treatment and feeling healthy I had a few chest infections and episodes of peeling skin on my hands along the way but with a few tweaks to my medication it has been under control, I see my consultant on the 20th of this month and I should be finished with my treatment the 12 months have flown by,I should have a ct scan after this date to see if my treatment for call has been successful my blood work looks good so sure it will be good news here’s hoping,I would just like to say to anyone starting on there treatment journey it looks and feels daunting but stay positive and the time does go by very quickly i have been on venetoclax and obinutuzumab for 12 months now and there have been few hick-ups along the way but the treatment has been tolerable and i would recommend it to anyone considering this for there treatment.i will give an update in a few weeks on the end of the treatment scan and see how the 12 month treatment plan has worked.
Gosh @weno is it really a year ago when you started treatment.
Yes please do let us know how your tests and appointments go.
Be kind to yourself
i know Erica Ware has the year gone, hopefully it will be all good news and the end of treatment for many years to come I am keeping my fingers crossed regards @weno