Hi
Just wondering what people’s experience of fatigue is whilst taking Venetoclax
Have been taking since January and have recently reduced my dose due to mild neutropenia but my fatigue seems worse and it’s affecting my mood. I am really struggling with work and just daily tasks, .Its quite frustrating as I was hoping to feel more like myself by now
Thanks
Hi @DottieB
I’m sorry to hear that Venetoclax is causing fatigue issues for you.
I was on this medication along with a couple of others.
Tiredness was certainly a factor and I definitely had to pace myself.
If noticing a change it’s worth flagging to your clinical team.
You might also want to reach out to the @BloodCancerUK-SupportTeam for some guidance and support.
Hope that helps and take care
Hi @DottieB
Fatigue can be so hard can’t it and can really bring your mood down.
I hope there are others who can share their experiences and things that have helped them.
Please keep us updated on how you are doing x
Hello there @DottieB, I was thinking about you only the other day, wondering how you were getting on with the new medicine. I’m sorry to read about the fatigue worsening, how rubbish! You know how I feel about fatigue 
I wonder if changing the Venetoclax dosage affects fatigue like with hydroxyurea? When my dosage changes so does my general energy level for a while, but so far it’s always levelled back out.
I’ll draw the attention of @BloodCancerUK_Nurses to your query as it’s affecting your mood as well as energy, and may I just say I think it’s very understandable to feel frustrated when you hoped symptoms would go the other way!
Have you tried looking for others around the forum living with similar diagnoses and treatments? There might have been some tips shared, maybe try using the search box at the top.
Sorry you’re having this dip @DottieB, thinking of you.
Hi there @DottieB
So sorry to hear that the Venetoclax you are taking is leaving you fatigued. Unfortunately, this is a common side effect of this medication Venetoclax [Specialist drug] | Drugs | BNF | NICE but there can be interventions that can help. Have your treatment team mentioned if you are anaemic? This may need correcting in order for you to feel less fatigued.
We also have some information on Fatigue | Blood Cancer UK that may be useful for you, often we under estimate how treatments can affect us and sometimes we need to ask for help when it comes to side effects. Please do speak to you medical and nursing team, they are there to support you.
If you would like to speak to one of the nurses do contact us here: Blood cancer information and support by phone and email | Blood Cancer UK
Take care of yourself
Gemma
Hi @Nichola75
thanks for your reply, I am finding it quite difficult but will speak to my team and hopefully it will improve
The heat is not helping today 
Hi @Duncan
That’s funny as I have been thinking about you and wondering how you are , hope all is good ?
I do wonder if it will settle down, it is a little disheartening as I was hoping to feel more like myself and have a touch more energy
Thanks for your reply
Take care x
Thanks @GemmaBloodCancerUK
This is really helpful , my bloods were okay when I last had them taken but will see if I can get them checked again
best wishes
Aw that’s so lovely to think we were like ships passing wondering how we’re each doing @DottieB! I’m doing well, touch wood 
Just about to take the hound into town to meet a friend for birthday coffee, what can I get you? Perhaps an iced drink on a hot day like I hear the UK is today?!
Hi Dottie B.,
Like you ., I have undergone the whole immunotherapy gambit after ten years of watch and report. The first kind of treatment was called acalabrutinib which did work by bringing the white blood cell down to normal levels ,but the nausea along with leg lesions became after over a year on that drug . So it was stopped and a period of monitoring followed until in November 25, white blood cell levels rose to alarming levels. So the second regime involved 6 monthly infusions followed by 24 months of venetoclax 100x4 . Now on month 8 I can honestly say that the process has been relatively easy to cope with just a couple of periods of problematic effects,notably extreme tiredness early on with some nausea .
Now , I have regained lost weight, and improved fitness through exercise in moderation, I’m told that as my test readings show steady normal counts ,it has been decided I am in remission albeit without CT scan proof of that no tumours remain ,that’s the next test phase ,but looking positive so far that I’m considering resuming work . The upshot of all this is … positivity really counts ,and a good relationship with your Haematology team counts even more . It is important to communicate those feelings that are bothersome . Good luck to all in the same boat reading this ,.. there is light at the end of the tunnel.
@Duncan that sounds like a lovely day , hope you had that iced drink!
It’s been really warm here in the uk but seeing blue skies and the sunshine has been lovely . So glad you are okay , give your gorgeous hound a treat from me x
In my clumsy fashion, I sent the last message before I could say hope the birthday celebrations were good x
Thank you so much for your reply!
It’s very reassuring to hear that things improved for you and you are doing well now .
I really appreciate you taking the time to post
Best wishes
Hello there @Billy1946, welcome to the forum and thank you for your lovely post supporting dear @DottieB and others. I hope the forum can be of support to you too if you need it.
I’m guessing you might share a diagnosis of Chronic lymphocytic leukaemia ('CLL'), so if you’d like to be pointed towards relevant Blood Cancer UK information then do let us know. Although you seem to be doing so well, the forum remains for us in all our various moods. After all, once we’ve experienced blood cancer we become survivors of it. Not the club I’d ever choose to join but I’m glad to be in it now! Definitely agree how important it is to communicate our needs and feelings, such great advice.
Do keep us posted about how you get on—nearly 11 years beyond diagnosis (if I’ve read that correctly) is really heartening @Billy1946!
Aww @DottieB, always so sweet and thoughtful! I totally forgot to take photos wandering around with our friend in Oakland but he enjoyed it despite the fog coming over with him from San Francisco! Sounds fancier than it felt as I kept wishing I’d brought an extra layer of insulation 
However! I took the hound for a lovely sunny hike yesterday up in the redwoods and his tail was aloft the whole time, he does love sniffing about in the wild. Then he slept the entire day! Oh to be a dog…
Oh my that looks absolutely gorgeous ! Am very jealous , having the redwoods so close is a lucky thing, what a beautiful place.
Glad you had a good day with your friend, I prefer the slight chill at the moment, not sure if it’s my age or the Chronic lymphocytic leukaemia ('Chronic lymphocytic leukaemia ('CLL')') but I don’t manage the heat quite so well as I used to 
Take care my friend x
Hello Duncan,
Thank you for your welcome , much appreciated.
I would be happy to share my Chronic lymphocytic leukaemia ('CLL') related experiences if it offers comfort or indeed useful advisory support to those in the early stages of the disease.
Everybody who has contracted the condition follows roughly the same path with variations on effectiveness of treatments ,and personal responses to same. I have great sympathy for those individuals who experience sometimes insurmountable discomfort during the treatment programme.
I would therefore repeat strongly that anyone suffering for lack of support would be well advised to seek solid advice from that individuals care supplier whether it be the Haematology consultant ,or your support nurse as they are there for just that purpose, and what they are payed to do .
Encouraging patients to open up about their feelings and concerns in my view, paves the way to a better understanding of Chronic lymphocytic leukaemia ('CLL') ,and with knowledge comes the armament to best deal with issues that are disturbing,and demoralising.
This is why Blood cancer forums and people within who are able to offer reassurance are invaluable to patients in distress. Thank you for your commitment to that cause , kind regards .
Aw @DottieB, I do feel lucky to have so many redwoods nearby, ancient original growth ones too. Such incredible, adaptable trees. They’re becoming more rare as they tend to only grow along the foggy coast northwards of here and so many were cut down during the gold rush era. Thankfully many redwood forests have been saved by preservation as parks to be enjoyed by all 
My dad tells me that are more redwood trees in the UK than here! So many seeds were taken over, so you never know—you might have a redwood grove or forest near you, maybe have a google!
How fascinating, I was not aware of that , am off to google ! The gold rush did a lot of ecological damage didn’t it ?
Thank you x
